KIEV'JGWt'w‘mmwa mm mm ,. TH ESis‘ ‘ i -._,‘- .~ - “‘3 I l V: "‘5! 9 {'2‘ t ’h __-- r_/ “Fifitti W; ‘1 __ Ea. .1 '5"? .. ~- 1 '\,.‘ n g .‘r _ ... l l ‘1? .f;..£.l v '42....1. i . H 'l "K This is to certify that the dissertation entitled The Integration of Hospice Programs into the Traditional Health Care System: A Sociological Study presented by Lenora Toby Finn Paradis has been accepted towards fulfillment of the requirements for Ph-D- degree in Sociology fléflv/nm / Major professor Date June 2, 1983 MSU is an Affirman've Anion/Equal Opportunity Institution 0» 12771 A-’ a )V1531_J RETURNING MATERIALS: Place in book drop to LJBRARJES remove this checkout from .a-I-cgua-L. your record. FINES will be charged if book is returned after the date stamped below. 4.1 J /‘//- oar/Cr THE INTEGRATION OF HOSPICE PROGRAMS INTO THE TRADITIONAL HEALTH CARE SYSTEM: A SOCIOLOGICAL STUDY By Lenora Toby Finn Paradis A DISSERTATION Submitted to Michigan State University in partial fulfillment of the requirements for the degree of DOCTOR OF PHILOSOPHY Department of Sociology June 1983 Copyright by LENORA TOBY FINN PARADIS 1983 ABSTRACT THE INTEGRATION OF HOSPICE PROGRAMS INTO THE TRADITIONAL HEALTH CARE SYSTEM: A SOCIOLOGICAL STUDY By Lenora Toby Finn Paradis A collective interest in death and dying has progressively developed in American society since the 19603. The development of hospice as an alternative form of care for the terminally ill is, to a large extent, a manifestation of the heightened awareness of death, coupled with growing disenchantment with the traditional medical model. The recent upsurge in the number of hospice programs throughout the United States constitutes a social movement, and therefore presents an opportunity to examine sociological theories about the integration of a social movement organization into the larger society. In the case of hospices, it provides an opportunity to assess those factors which affect the integration of hospice programs into the traditional health care system. Using Michigan as a case study, this research investigates the relationship among several independent variables--organizational size, structure, inter- organizational affiliations, program goals, board composition, professional leadership and environmental support--on the dependent variable "integration." "Integration" refers to the participation of an organization in the larger society. In the case of hospice programs, integration refers to the participation of the program in the health care reimbursement system, the reliance on trained health care professionals such as physicians, nurses, and social workers, and the political involvement of program leaders to gain status through licensure and the development of accreditation standards. The intent of early hospice program organizers was to ensure that the hospice concept became an integrated part of the existing health care delivery system. Early hospice movement founders encouraged tactics which would establish important and relevant links to the existing health care system. The goals of subsequent organizers became much different. They viewed hospice as a distinct and separate provider classification, which is not to be confused with, or integrated into, the existing medical care system. Claiming the concept of "hospice" will be lost in the traditional system, opponents of integration contend providers in the traditional system are unable to fulfill the needs and guarantee the rights of the dying patient. The development of hospice organizations as independent non-integrated health care providers caused conflict among hospice program organizers, as well as between local hospice programs and existing provider groups, specifically home health agencies. While many home health agencies supported the development of local hospice programs, they expressed concern that these new programs were merely duplicating their services under a new name. Regardless of the desire of some hospice program organizers to remain distinct from the existing health care system, results indicate that hospice programs are, in fact, becoming an integrated part of that system. As hospice programs become increasingly integrated into the traditional health care system, support for the creation of independent community-sponsored programs is decreasing, while support for programs created by existing health care institutions (e.g. hospitals and home health agencies) is increasing. The reduction of support for independently created hospice programs is creating fragmentation and conflict within the hospice movement. In the case of hospice ii programs, the decision to become integrated into the traditional health care system is one source of conflict. The data presented in this study provide support for the possible demise of non-integrated hospice programs and describe the changes that have occurred in the development of Michigan hospice programs during the past five years. iii To my grandmother Sophie Rudner, 1889-1963, died stomach cancer To my father William Finn, 1912-1969, died lung cancer To my mother Eva Finn, 1912-present To my husband Dennis Paradis for his patience and support TABLE OF CONTENTS Chapters I Introduction to Hospice Programs and Problems The Concept of Hospice Social Factors Influencing Hospice Development 11 Hospice as a Social Movement: History and Concepts Potential for Social Movement History of the Hospice Movement Co-optation and Integration Integration as 3 Construct Organizational Goals Size Interorganizational Exchange Board Composition Professional Leadership Community Support Competition Hypotheses on Integration of Hospice Programs 111 Data and Methods Research Design The Samples The Survey Samples The Populations Data Collection Procedures Survey Questionnaires Page 21 23 25 34 37 50 51 53 55 57 58 60 61 67 67 68 68 71 73 73 Chapters IV Advantages and Disadvantages of Survey Questionnaires In-depth Interview Formats Advantages and Disadvantages of Interviews Historical Data Collection Survey Technique Hospice Survey Technique Physician Survey Technique Home Health Agency Survey Technique Interview Technique Measurement of Variables Measure of Dependent Variable Integration Measurement of Independent Variable Measurement of Size Measurement of External Relationship Measurement of Program "Creation" Measurement of Competition Measurement of Professional Leadership Measurement of Board Diversity Involvement Index Use of Regression Analysis Results of Hypothesis Testing Goals Competition Professional Leadership Board Diversity vi Page 73 74 75 76 76 76 78 79 79 81 81 83 83 85 87 88 9D 92 92 94 96 99 102 105 105 Chapters V VI VII Multiple Regression Results Physician and Home Health Agency Response Rate Physician Survey Response 2 Home Health Survey Response Involvement Methodological Problems Discussion of Results Size Organizational Creation Michigan Hospice Programs' Profile The Status of Integration of Hospice Programs Conclusions Policy Implications and Suggestions for Further Research Policy Implications Board Composition Socio-economic Factors in Health Care Quality of Patient Care Cost-Benefit Analysis Death and the Family Glossary Bibliography Appendices vii Page 107 110 110 111 112 116 121 121 124 129 136 146 153 153 158 160 161 162 164 166 169 Tables 10 11 12 13 14 15 16 17 18 19 20 LIST OF TABLES Summary of Survey Samples Mean and Standard Deviation of Variables Used to Construct Measure of Size Hospice Density By Area Core Professionals Involved in Starting an Area Hospice Program Degree of Involvement Scale: Physicians Degree of Involvement: Home Health Agencies Comparison of Size to Population and Contributors Relationship Between Size and Types of Services Hospice Program Integration Compared to Judges' Rating of Integration Correlations Between Size and Types of Services Correlation Coefficient's Difference Scores on Initial and Current Goals and Level of Integration Hospice Program Change Proximity of Other Hospice Programs Correlation Between Density, County Population and Number of Hospices in a 25-Mile Radius Relationship of Size of Hospice Program to Hospice Density Relationship Between Hospice Program Density and Degree of Integration Correlation of Hospice Program Size and Integration with Board Membership Types Pearson Correlations Between Dependent and Independent Variables Summary of Regressions Showing Contribution of Each Variable While Holding Others Constant Step-wise Regression of Variables Predicting Integration viii Page 64 76 81 82 84 85 88 89 90 91 93 94 95 95 96 97 98 99 101 101 Appendices 1 2 10 11 12 13 14 15 16 LIST OF APPENDICES Text of the Tax Equity and Fiscal Responsibility Act of 1983 Bill To License Hospice Programs in Michigan Michigan Certificate of Need Legislation States with Right-to-Die Legislation Table: Hospital and Home Deaths in Michigan, 1971, 1975, 1981 List of Hospice Programs in Michigan Hospice Survey Questionnaire Home Health Agency Survey Physician Survey Open-ended Questions for Hospice Program Directors and Board Members Phone Survey Follow-up Phone Survey Letter from E. Joseph Alberding, M.D. Letter from Myron S. Magen, D.O. Letter for Kay Hollers, R.N. Statement of Research Purpose ix ACKNOWLEDGEMENTS A large number of people have been generous in providing not only their time and assistance but also their encouragement throughout the development of this research. Resources for the project were received from the College of Osteopathic Medicine, Michigan State University, the College of Human Medicine, Michigan State University, The Michigan State Medical Society, The Michigan Home Health Assembly, the Michigan Hospice Organization and the Upjohn Health Care Services. Without the cooperation of Marian Luxon, former executive director of the Michigan Hospice Organization, this study could not have been conducted. Ms. Luxon opened numerous doors for me and arranged endless meetings with hospice program directors. She also spent many hours helping me understand the hospice movement and discussing my ideas with me. Thanks are also necessary to Kay Hollers, former president of the Michigan Home Health Assembly, who agreed to meet with me at all hours to read my material and enhance my understanding of the home health industry. Karl Ziegler, president of the Michigan Hospice Organization, Peg McQuistion, director of Hospice of Southeast Michigan, Carolyn Fitzpatrick, director of Good Samaritan Hospice, Sister Augusta Stratz, president of the Northern Michigan Hospice Conference, Tom Zerbel, former president of Bay de Noc Hospice, Ann Ballew, director of Hospice of Washtenaw, Margaret McNiven, director of Hospice of Lansing, Rick Meredith, director of Shiawassee Hospice, Keith Markstrom, director of Hospice of Saginaw, and Jill Schultz, director of Saginaw County Visiting Nurses Association are just a few of the dozens of people that spent hours of time with me during the project. Special thanks are also extended to the many hospice program directors, staff and board members who gave up their valuable time to assist me in understanding the hospice program of care and the way in which their own hospice program was operating. A debt is also owed to members of my committee who coached me through some difficult times and, at times, prodded me with a hot poker for "what they claimed was my own good" in order to finish this degree. Members of the committee included Philip Marcus, Ph.D., Chairman; Harry Perlstadt, Ph.D.; William Given, Ph.D.; Thomas Conner, Ph.D.; Donald Olmsted, Ph.D., and James G. Lyon, M. S.W. Appreciation is expressed to John Condon and Marilyn Bogert for responding to my innumerable requests for computer programming assistance with skill and, generally, good humor. Connie Burch, Mary Pat Vering and Caron DelFoss, who shared the tedious task of typing research instruments and this report, deserve commendation. Pat Grauer, who assisted me in editing, played an important role and helped me maintain my sanity as the time for completion of this document approached. Finally, I am indebted to my husband, Dennis Paradis, who absorbed much of the stress associated with my graduate degree, and my family and friends for their constant prayers and encouragement. Without this wide array of assistance and support, this degree would never have become a reality. CHAPTER I INTRODUCTION TO HOSPICE PROGRAMS AND PROBLEMS The study of hospices as social movement organizations presents practical as well as theoretical problems. At the practical level, the recent upsurge in the number of hospice programs throughout the United States has forced health care policy makers to re-examine the existing health care system, especially in its provision of care for the dying patient. At the sociological level, research on hospices provides a basis for assessing theories of social movements, division of labor, organizational structures, professions of medicine and environmental dynamics. The purpose of this research is twofold: 1) to collect descriptive data on the growth and development of hospice programs in Michigan as a data base for use by health care providers, decision makers and legislators and 2) to provide empirical data to assess sociological hypotheses regarding the development of hospice as a social movement organization. The Concept of Hospice Hospice is a "medically directed, nurse-coordinated program providing a continuum of home and inpatient care for the terminally ill patient and family. It employs an interdisciplinary team acting under the direction of an autonomous hospice administrator" (Flexner, 1978, p. 248). The upsurge in hospice programs throughout the United States can be viewed as an organized reaction to a social problem: the depersonalization of care for the terminally ill. The hospice movement is considered by some to be a human rights movement which began in the early 19603 and focuses not only on the terminally-ill patient's rights but also the failure of the existing medical care system to care for the needs of the dying. The chief objective of the hospice program is to provide supportive care for the dying person. The program focuses on keeping the patient at home. The principal products of the hospice program are nursing, palliative care, and counseling services to the dying; its central concern is the comfort of the dying patient. The hospital, on the other hand, is most concerned with the treatment of illness within the limits of present-day technical-medical knowledge (Georgopoulos and Mann, 1962). The principal products of the hospital are medical, surgical, and nursing services to the patient and its central concern is the life of the patient. In its pristine, ideal form, hospice care welcomes "guests" into a "high person, low technology" setting, unsegregated from sights, sounds, persons and activities of the world of wellness. Patients surrounded by staff, volunteers, family members, and friends receive "holistic" care from persons who spend non- medical as well as medical time with them. The major objective is to dispel psychic pain and suffering, anxiety and fear of death. The control of physical pain is another central concept and goal of hospice. "Attending the emotional, social, spiritual and physical needs of the terminally ill and their families is considered essential to the hospice's commitment and to its capacity to transform the process of dying into a tolerable, meaning-filled experience for all those who participate in it" (Fox, 1980, p. 32). Senator Jennings Randolph, in establishing National Hospice Week (S.J. Resolution 170, March 18, 1982) stated, "Hospice is a place, people, and a philosophy. It is a system of care that seeks to restore dignity and a sense of personal fulfillment to the dying. The focus is on the patient and the family, rather than on the disease--and the aim is not to extend life ends, but to improve the quality of the life that remains." While Randolph's description is vague, Section 1811 of the Social Security Act (Appendix 1) is fairly specific in what constitutes hospice care. The act requires that the patient is terminally ill with six months to live as diagnosed by a physician licensed in the United States. Care for the patient must center on pain and symptom control provided by an interdisciplinary team of health care professionals including nurses, physicians, social workers, clergy and specially trained volunteers. The Act requires that a majority of a patient's care is rendered in the home, that care is available 24 hours a day and that the family participates in the care of the patient. Although the appearance of hospice programs in the United States is recent, the concept has existed for centuries. Medical historian David Reisman (1935) noted that the concept of hospice antedates A.D. 475 and that there is proof of a hospice founded in the Port of Rome by Fabiola, a disciple of Saint 1 Jerome, to care for pilgrims returning from Africa. According to the New World Dictionary the word "hospice" means a place of shelter for travelers. During the medieval period hospices were maintained by religious orders as resting places for individuals on pilgrimages to the Holy Land. 1 Dozens of articles and books have been written detailing the history of hospices dating from 475 A.D. (see: Riesman, 1935; Kubler-Ross, 1969, Kron, 1976; Stoddard, 1978; DuBois, 1980, Osterweis and Champagne, 1979; Wald, et al, 1980). See also Western Attitudes Toward Death: From the Middle Ages to the Present by Philippe Aries (1974). Hospices were in operation throughout Europe in large densely populated areas as well as in more rural ones. Some estimates indicate there were as many as 750 in England, 40 in Paris and 30 in Florence as well as others in monastic hermitages in wilderness areas, at mountain passes and river crossings. Hospices could be found anywhere travelers to the Holy Land could experience the greatest hazards (Stoddard, 1978). In the mid-1800s Sister Mary Aikenhead opened a home in Dublin for the dying, calling it "hospice" in consonance with her view of death as part of an eternal journey. The modern concept emerged in 1842, when Catholic widows established a hospice in Lyon, France, for poor women who had incurable cancer. Around the turn of the twentieth century, the Irish Sisters of Charity set up St. Joseph's Hospice in London. An Anglican order and a Methodist Church mission established two other English hospices. It was to St. ChristOpher's Hospice, in a suburb of London, and its founder, Dr. Cicely Saunders, that the U.S. hospice movement has looked for direction (Porter, 1979, p. 60). The Hospice of Connecticut--America's first hospice program--is modeled after St. Christopher's.1 Although Hospice of Connecticut opened its doors to patients in 1974, it actually began in 1963 following a speech given by Dr. Saunders at Yale University, paving the way for open discussion on the concept of death and dying.2 Less than a decade later (Spring 1971) the Hospice of Connecticut became incorporated (Fulton and Owen, 1980). There are currently 77 programs in the United Kingdom; 42 inpatient hospice programs; 12 hospital-based programs, 23 community based home care programs and 6 day care units. Fifty percent of the funding for hospice is received by the NHS and the remaining comes from private sources. Other countries with hospice programs include Taiwan, Japan, China, Johannesberg, South Africa, Canada, Holland, Israel, and Sweden (Olsen, Edwin J. p. 7). I'm told by some of the attendees that Elisabeth Kubler-Ross was present during that speech. As the collective interest in death grew it took on a significant moral and value-laden quality; the inalienable right of everyone to die in a comfortable manner which afforded them the most dignity and which allowed them to be surrounded by their loved ones. The book, On Death and Dying by Elisabeth Kubler-Ross (1969), gained national attention. Early interest groups pressured legislators to introduce death-with-dignity legislation. In 1972, the Special Committee on Aging of the United States Senate held hearings on "Death with Dignity: An Inquiry Into Related Public Issues." Within two years after the formation of Hospice of Connecticut (1974), the National Institutes of Health (NIH) held a symposium on management of pain and humanitarian care for the dying. In May 1978, the National Hospice Organization was formed to act as a national clearinghouse, and several years later it became a powerful lobbying force which shepherded through an amendment to the Tax Equity and Fiscal Responsibility Act of 1982, which provided for hospice benefits to Medicare beneficiaries. Later that year, a Senate resolution was passed asking President Reagan to proclaim the week of November 7-14 as National Hospice week. Although the number of patients enrolled in hospice programs is small, the hospice movement "has entered the American health care scene with an intensity of a religious revival and a growth rate characteristic of a boom town" (Carney, 1982, p. 1). The number of hospice programs across the United States has grown from a handful in 1978 to more than 1,000 in 1981, according to the Joint Commission on Hospital Accreditation. The hospice movement has planning groups in rural and urban areas throughout the country. The efforts of hospice programs to gain status as legitimate providers of health care for the terminally ill have been successful with the recent enactment of Medicare entitlements to provide reimbursement for hospice care and the negotiation of hospice benefits in third-party payment contracts. Further, 11 states have passed hospice licensing statutes and others are considering passage of regulatory measures (Blum and Robbins, 1982).1 Michigan has a large number of hospice programs, and according to the National Hospice Organization (NHO), is one of several states with a rapid growth in absolute number of hospice groups. The state is one of 11 states with hospice licensure. (The NHO estimates that 25 states will have licensing legislation by December 1983.) The state contains at least one example of the five variations of "model-type" hospice programs as defined by the United States Government Accounting Office (GAO).2 Lastly, the state has formed a trade association (the Michigan Hospice Organization, MHO) which has been instrumental in helping other states initiate similar associations. 1 California, Connecticut, Delaware, Florida, Hawaii, Illinois, Maryland, Michigan, New York, Virginia and West Virginia had passed hospice licensing legislation. (See Appendix 2 for Michigan Law) 2 Five predominant types or models have been identified by the GAO: 1) Free standing hospice 2) Hospital-affiliated, free standing hospice 3) Hospital-based hospice a) acute care hospital with centralized palliative care or hospice unit b) acute care hospital hospice team who visit patients 0) units operated as part of an HMO 4) Hospice within an extended care facility or nursing home 5) Home Care program only a) hospital based b) nursing home based c) community based Social Factors Influencing Hospice Development Changing views of death and euthanasia, the women's movement, home birth movement, a burgeoning medical technology and issues of health cost containment all influenced the development of hospice as a social movement. The recent U.S. concept of hospice care grew out of a burgeoning death awareness movement which, according to Huntington and Metcalf (1979), had its origins in the 1963 publication of Jessica A. Mitford's expose, The American Way of Death. The book attacked America's funeral industry, claiming it was excessively commercial and capitalized on death. Mitford attacked the funeral industry for profiteering through selling of unnecessarily expensive services and goods to a captive clientele under great temporary stress. Mitford's questioning of the appropriateness of the funeral ritual, especially the elaborate preparation of and display of the corpse, provided a basis for public reassessment of the death ritual. As Metcalf and Huntington (1979, p. 3) note, "There began a broader reconsideration of all aspects of the experience of dying and the significance of death in modern society." The stage was set for death and dying to become what Blumer calls a "general social movement." The general social movement consists primarily of "groping and uncoordinated efforts" toward vague goals or objectives. It lacks organization, leadership and structure. It grows gradually out of what Blumer (1969) calls "cultural drifts," which are "gradual and pervasive changes in the values of people." As a general movement begins to form from a cultural drift, it gradually acquires spokespersons who are more like "voices in the wilderness" than real leaders. In the United States, the leader, or more accurately promoter, of the death-with-dignity movement was Swiss-born physician Elisabeth Kubler-Ross. Her book On Death and Dyiry sold millions of copies shortly after publication (1969), and is credited with prompting widespread debate on the rights of the dying patient1 and fostering the concept of "death with dignity." The "classical death of Western nostalgia," presented by Kubler-Ross (1969, p. 5-6) provides a memorable example of the genre: I remember as a child (in Switzerland) the death of a farmer. He fell from a tree and was not expected to live. He asked simply to die at home, a wish that was granted without questioning. He called his daughters into the bedroom and spoke with each of them alone for a few minutes. He arranged his affairs quietly, though he was in great pain, and distributed his belongings and his land, none of which was to be split until his wife should follow him in death. He also asked each of his children to share in the work, duties and tasks that he had carried on until the time of the accident. He asked his friends to visit him once more, to bid good-bye to them. Although I was a small child at the time, he did not exclude me or my siblings. We were allowed to share in the preparations of the family just as we were permitted to grieve with them until he died. When he did die, he was left at home, in his own beloved home which he had built, and among his friends and neighbors who went to take a last look at him where he lay in the midst of flowers in the place he had lived in and loved so much. 1 Fox (1980, p. 50) writes that Kubler-Ross's book catapulted her to the top of a newly emerging specialty, thanatology (the study of death, and working with and caring for the dying): "It made her the 'Death-and-Dying Lady,‘ 8 national and international celebrity. It launched her on a perpetual round of house calls to dying patients and their families, in the United States and abroad, and a continuous cycle of public lectures and 'Life, Death, and Transition Workshops' attended by hundreds of persons." Fox notes that Kubler-Ross's book contended that the contemplation of death and the acceptance of mortality are not morbid, but life-enhancing, "conducive to respect for life, personal growth, loving relationships, and a happier sense of meaning. She has also consistently affirmed that persons passing though the 'final stages of life' can be our teachers and that those who get close to the terminally ill 'will learn much about the functioning of the human mind, the unique human aspects of our existence and will emerge from the experience enriched... perhaps with fewer anxieties about their own finality'." There is also a demographic source of the heightened awareness and pondering of death and dying (Parsons, 1963; Fox, 1981). Declining fertility rates and declining mortality rates have enhanced both the proportion and number of persons who are living longer. Whereas in 1900 approximately three million persons, or four percent of the American population, were 65 or older, today 25 million persons, or close to 12 percent of our population, belong to this age category.1 As sociologist Otto Pollak writes, this "increase in the numbers of persons who live out the full span" has helped to make "the anticipation of dying a national experience" and aging a process of "dying in installments." Pollak (1980, pp 71-73) points out that social and cultural factors are as responsible for these associations between aging and dying as demographic and biological ones: Old people in the United States live in a society which puts a premium on being young. . . . Youth is hope and hope is life-sustaining. . . . Old people symbolize hopelessness, the renunciation of fantasies, the pain and despair of dying. . . . 1 Michigan Department of Public Health, Office of Vital Statistics and 0.5 Census Bureau 1980 Census. 10 A growth in our aging population has led to a shift in the cause of death. As Fox writes (1980, p. 42), certain chronic illnesses that have not yielded to the progress of medicine are now the primary causes of mortality, among them cancer, heart disease and stroke.1 Thus, a considerable portion of the American preoccupation with death and dying is concerned, directly or indirectly, with chronic illness and the care of the chronically ill.2 The disease most dreaded and feared in this connection is cancer. It has become the archetypical metaphor of "insidious, malevolent, uncontrollable, ugly, and pain-filled aspects of these chronic-illness-associated problems. . . " (Fox, 1980, p. 44). l "Diseases of the heart ranked fourth among the leading causes of death in this country during the 1900's; this category caused 137.4 deaths per 100,000 and accounted for 8.0 percent of all deaths. By 1966, however, it had risen so far in importance that it had become the leading cause of death, far outranking all others. Its mortality rate had risen to 375.1 deaths per 100,000 population, and it accounted for nearly 40 percent of all deaths in that year. . . . The pattern of increase for malignant neoplasms (cancer) as a cause of death was quite similar. This disease ranked eighth among the leading causes of death in 1900. It accounted for 64 deaths per 100,000 population and less than 4 percent of all deaths. By 1966, however, its rank among the leading causes had risen to second, its rate per 100,000 to 154.8, and its proportion of the total of all deaths exceeded 16 percent. . . ." (Lerner, 1980 p. 95). Aries (1974) divides changes occurring in the death of populations and attitudes toward death into four stages: "tamed death" (pre-Renaissance); diachrony (Renaissance to middle-ages); achronic (post middle ages); and comtemporary. In the pre-contemporary society death warnings occur through a "magical premonition, the dying is prepared for death through steps dictated in traditional ceremony (e.g. lying in bed, in a position, arms crossed over the body, etc.). At the end of the 18th century (contemporary period) doctors discovering the first principles of hygiene complained about overcrowding bedrooms of the dying. With the advent of poor farms and subsequently hospitals the isolation of the dying from the family is complete. Death in the hospital is no longer the occasion of a ritual ceremony, over which the dying person presides amidst his assembled relatives and friends. Death is a technical phenomenon obtained by a cessation determined in a more or less avowed way by a decision of the doctor and the hospital team (p. 88). 11 The hospice philosophy includes a commitment to transform the process of dying into a tolerable, meaning-filled experience for all those who participate in it. Hospice provides a "waystation" for patients suffering from cancer. It is designed to both control pain and attend to the patient and family's anxieties and fears of death. The development of hospice programs as social movement organizations (SMOs) is a manifestation of deep cultural changes occurring in our society and in its world view. The upsurge in hospice programs appears at a time when other health care and social reforms are also being proposed. For example, in 1968, the Journal of the American Medical Association (JAMA) ran dozens of articles regarding legal decisions physicians may face when using biomedical advances to prolong life. Concern surrounding this issue escalated, reaching a peak one decade later when two judicial cases made national headlines: the 1976 Quinlan decision of the New Jersey Supreme Court and the 1977 Saikewicz decision of the Massachusetts Supreme Court. Both of the courts questioned the patients' physical or legal incompetency to express their own views about continued survival and the morality of using of heroic biomedical techniques to prolong life. The Quinlan case involved the question of whether to withdraw a comatose young woman believed to have suffered irreversible brain damage from a respirator, even though she did not meet the widely accepted Harvard criteria for brain death. The court said the decision properly belongs with the patient's parents and physicians, providing a hospital-appointed ethics committee concurred with their decision. The Quinlan decision was widely acclaimed by the medical profession because it supported long-standing medical tradition, the court's ruling did not appear to call for any major change in medical practice (Relman, 1978). 12 In the Saikewicz case, the court emphatically rejected the Quinlan solution, asserting instead that only the courts were qualified to decide life or death issues for incompetent patients. Saikewicz, a profoundly mentally retarded man of 67 who developed acute leukemia, was denied medical treatment at the request of his parents and physicians. As interpreted by some lawyers, the Saikewicz decision established new laws mandating probate judicial hearings before any life or death decision could be made for incompetent patients, excepting only emergency cases (Relman, 1978). The Quinlan and Saikewicz cases provided a public forum for the country to address the issue of euthanasia and the question of whether life-prolonging medical techniques should be applied to forestall the natural death of one who is in an irreversible unconscious state.l While the medical profession and the courts were debating the utilization of appropriate medical technology and the role of the physician in the care of the terminal patient, other related issues were being publicly addressed. These included the cost of medical technology and of hospital care in general, as well as the consumer's right to choice in health care matters. ‘1 Arien Mack in Death in American Experience (1974) discusses the relation of the physician to the patient as treatment becomes increasingly technical. Using the Parsonian concept of "definition of the situation," Mack (p. 29) writes: "Orientation to the nearly absolute 'commandment' to combat the death of his patient provided a strong definition of the situation for the physician in several respects. It assured the physician that be could act in direct relation to a value of great importance without having to embroil himself in a broad range of difficult problems of meaning. It permitted, indeed required, he pursue the 'saving' of life at almost any cost, that is, by subordinating almost all other value considerations." 13 Medical costs have been escalating dramatically during the last two decades and have consumed a greater proportion of our country's Gross National Product (GNP). Figures from the Department of Commerce (1980) show that in 1960 health care expenditures were $26.9 billion or 5.3 percent of the country's gross national product. By 1980 that figure had increased ninefold to $249 billion or 9.5 percent of the GNP. Beginning in the early 19708 the U.S. Congress developed a series of programs designed to contain health care costs,1 the most recent of which was P.L. 93-641, the National Health Planning and Resources Development Act. Passed in 1975, this act created a series of state and national planning authorities responsible for reviewing the efficacy of capital expenditure requests by hospitals and nursing homes.2 The concern over inflation of medical care expenses intrudes into nearly every aspect of health care today. Cost containment is the dominant catchword. The reasons for this phenomenon are varied, but the largest culprit, according to Hunt, is the expansion of medical technology. l 1972: The Social Security Amendments of 1972 (PL 92-603) added two relevant sections to the Social Security Act. They were Section 234, which mandated planning by health care institutions as a condition of Medicare participation, and Section 1122, which specified that health facilities in participating states would receive reimbursement by Medicare, Medicaid, and Maternal and Child Health Programs for claims relating to capital expenditures only if the expenditures were deemed necessary by the state planning agencies. 1975: The National Health Planning and Resources Development Act of 1974 (PL 93-641), Titles XV and XVI of the Public Health Service Act, was enacted to create a mechanism for coordination of planning efforts. Title XV establishes a new programs for health planning and resources development. Title XVI revises existing programs for the construction and modernization of health care facilities (the former Hill-Burton Program). For additional information see Connor, 1977. Appendix 3 contains the original state certificate of need law (Part 221 of PA 368 of 1978). It has since been amended to include review of hospice programs. 14 There seems to be general agreement that much of the excess inflation in medical care is related to expansion of use of technologically complex and costly methods of diagnosis and treatment. While such development is generally welcomed as evidence of scientific medical progress producing higher quality patient care with demonstrably improved results, "over utilization" is becoming the watchword in the struggle to limit costs. That too many patients are hospitalized, that too many hospitals have CAT scanners, that too many laboratory tests and x- rays are done on too many people, and that over use of drugs and eXpensive treatment methods are all too common statements being made with increasing frequency (1980, p. 2). Care for terminally ill patients in hospital settings is extremely expensive. As one administrator of a large urban hospital noted, "People often spend more on medical care during their last two weeks of life then they spend at any other time." The costs for care of the terminally ill in conjunction with the preservation of life have lent support to the deveIOpment of hospice as 3 alternative treatment of care.‘1 Stressing the importance of inexpensive home based care, hospice programs offered an option to the highly technological and labor-intensive hospital environment. The use of the home to care for patients was seen as a potential alternative to the hospital by another grOUp: those demanding more control for mothers over the births of their children. Beginning in the early 197082 a series of books were published asking why women did not have control over their own bodies. This question recurred during debates on abortion as well as home birth. 1 A November 1982, study by Blue Cross/Blue Shield noted that it costs an average of $15,836 (1980 dollars) for terminal patients during their last six months of life. The majority of expenses occur in the last month of life when inpatient hospitalization is highest. See Richard, Barbara. The Women's Movement, New York: Harper (3: Row, 1975; Suzanne Arms. Immaculate Deception, Boston, Mass: Houghton Mifflin, 1975. Sheila Kitzinger. The Experience of Childbirth, London: Victor Gollancy, 1972. 15 As Fox (1981, p. 55) points out, the death-and-dying movement "intersects with the broad affirmation of individual rights taking place in American society since the 19603 and with organized attempts to expand the scope of these rights." The articulation of the right to die closely parallels that of the right to choose a birthing place. In both instances, groups organized to oppose restrictions concerning "constitutionally" guaranteed rights to give birth and to die in the settings which one wishes without interference from others. As women discussed the propriety and costs of their gynecological care prior to, during and after childbirth and their needs for more than site-specific care, the doors were opened for other types of debates, including the role of the physician in the care of the terminally ill. The same issues raised in discussion of birth became the focus of a larger societal phenomenon in which claims for the extension of individual rights, a "self-care movement," and a patient's rights for choosing the method of birth and death, figure prominently (Veatch and Tai, 1980). As the "death-with-dignity" movement gained public support in the early 19703 a second countermovement was beginning to develop which was largely sponsored by "right-to-life" groups.l Originally founded in the late 19603 to defeat "pro-choice" (pro-abortion) efforts, the right-to-life movement became concerned with the issue of euthanasia raised by the death-with-dignity 1 Robert Veatch of the Hastings Center reported in 1977 that "forty pieces of legislation were introduced into state legislatures during this period in an attempt to legalize one or another aspect of euthanasia" (Fulton and Owen, 1980, p. 5). By 1982, 13 states and the District of Columbia had Right to Die bills and another 28 pieces of legislation were being introduced (Appendix 4). 16 movement.1 As Michigan Representative Dave Hollister noted, "The meetings my committee held on death-with-dignity legislation were becoming increasingly dominated by members of the Catholic Church and right-to-lifers who worked hard for the defeat of the proposed legislation."2 Debate in the 19703 over right-to-death issues led to the development of several factions: those who were unalterably opposed to any legislation which did not support the continued use of life support mechanisms and heroic surgeries to sustain life; those who were adamantly opposed to continued life-support measures and medical techniques against the patient, his or her family or close companion's wishes; and those who were anxious to promote death with dignity but who focused on the humane aspects of the care for the dying while rejecting any talk of euthanasia. It was this third group which, in most states, became the foundation Upon which the current hospice movement is based. As one right-to-life organizer wrote in her letter to me, "Our concern over the abortion issue included the prediction that loss of respect for life at the beginning would lead to a similar loss of respect at the end of life. Our literature, presentations, etc. in the early days of our organizations predicted that this loss of respect would spread to those who were also helpless due to old age, retardation, handicap, etc. In those days, we were told that we were exaggerating, and that it would not happen. The growth of the so-called 'death with dignity' movement confirmed our early predictions. Euthanasia became an issue with right to life as the various pieces of legislation's court cases began to unfold. It was not unexpected, and as a result, our focus broadened to include not only the unborn, but all human beings whose right to life appeared to be threatened. However, abortion remains the main focus and the reason for the existence of right-to-life organizations." In 1978 one state (Arkansas) had enacted right-to-die legislation (Rosen, 1982). By 1982 eleven states, including Michigan, had passed laws regulating hospice program growth and a dozen other states debated the passage of licensing statutes (Blum and Robbins, 1983). 17 An unofficial alliance between church officials, right-to—life and death- with-dignity supporters formed and focused on an organized approach to care for the terminally ill. They promoted the concept of hospice as a method of care for the dying that involves the traditional health care providers but also gave the patient and the family some choice in the continuation of medical interventions. The hospice movement did not address the issue of families of unconscious patients making any decisions for the patient and focused instead on care for the conscious and aware terminal patient. This was an important point since early death and dying legislation focused on treatment, or lack of it, for unconscious patients regardless of long-term prognosis. The hospice concept provided earlier discussions of death and dying with what Blumer terms a "specific" focus. Organizers defined as its goal the development of hospice programs to care for the terminally ill and a revamping of the existing health care structure. As Lyn Lofland (1978, p. 37) points out, death and dying are not salient concepts for many individuals because so many people in our society die in segregated organizational settings. However, once these numbers of "individuals begin to reach a sufficient size, they become aware of themselves as a group and can begin publically articulating those concerns which its individual members had kept private. The hiatus on death and dying as public discourse ends. The emergence of death and dying as fad, fashion and social movement begins." The hospice movement points to a failing of the traditional health care system to provide for the needs of the dying patient. It is a struggle against what Turner and Killian (1972, p. 259) have pointed out is some "wrong which ought to be replaced." That sense of something wrong is sustained by a sense of "righteous indignation. A sense of injustice that is vital enough to have 18 consequences requires not only a situation that appears unfavorable by comparison with some reference group, but also an oppressor, so that the situation can be seen as a product of human will." Some movements--for example, the nuclear power movement as noted by Useem and Zald (1982)--are "fortunate" in facing an opposition that is organized and articulated. The members of these organizations can be identified and personified: the oppressor is real.1 However, not all movements have "enemies" which are clearly identifiable. The thing or idea which is found unconscionable is a consequence of the way things are done, the way they have evolved. The practice which is abhorred may be merely a de facto creation. De facto enemies are not very useful in creating "righteous indignation." As Lofland (1978, p. 89) writes; "They do not articulate any opposition. They do not seem to be enemies at all. If they are to be useful to a movement, if they are to provide the emotional springboard for a sustained sense of injustice, they must be evoked by the movement itself. If they do not speak for themselves, they must be articulated by the movement." l Nathanson in his book, Aborting America (pp 51-52), describes how the pro- abortion movement focused on the hierarchy of the Catholic Church as an "oppressor of women's rights." "Historically. . . every revolution has to have its villain. It doesn't really matter whether it's a king, a dictator, or a csar, but it has to be someone, a person, to rebel against. It's easier for the people we want to persuade to perceive it this way. . . now, in our case, it makes little sense to lead a campaign only against unjust laws, even though that's what we are really doing. We have to narrow the focus, identify those unjust laws with a person or a group of people. A single person isn't quite what we want, since that might excite sympathy for him. Rather, a small group of shadowy, powerful people . . .. It's got to be the Catholic hierarchy. That's a small enough group to come down on, and anonymous enough so that no names ever have to be mentioned, but everybody will have a fairly good idea whom we are talking about." 19 The hospice movement had no specific enemy (e.g. an individual). However, it was able to sustain an "emotional springboard" by which it set up an ideal and then pointed to the imperfect presumed real. William Goode describes the way in which critics of contemporary family arrangements evoke an ideal which he calls the "classical family of Western nostalgia," by painting a picture of the kinfolk and life on grandma's farm and the harmonious living arrangement (Lofland, 1978). Philippe Aires provides an example of this view: For thousands of years man was lord and master of his death, and the circumstances surrounding it. Today this has ceased to be so. . . . Today nothing remains either of the sense that everyone has or should have of his impending death, or of the public solemnity surrounding the moment of death. What used to be appreciated is now hidden; what used to be solemn is now avoided. . . . We have seen how modern society deprives man of his death, and how it allows him this privilege only if he does not use it to upset the living. In a reciprocal way, society forbids the living to appear moved by the death of others; it does not allow them either to weep for the deceased or to seem to miss them. (Aires, 1974, 136, 138, 143). By creating an image of the ideal or preferable state of affairs, the "ideological crafts-person" then describes the way in which the real world fails to measure up (Lofland, 1978). In doing so, the opposition is "articulated"; a social problem is "created" (Blumer, 1971). Proponents of the hospice movement, in working toward an "ideal way of death," have asserted that the existing system has failed for a number of reasons, viewing secular discussion of death as taboo and preventing public discourse of the subject. The consequences of this denial lead to exorbitant funeral costs and barbaric funeral practices, inhumane handling of dying patients in hospitals, ostracism of the dying from the living, false communication with the terminally ill, rejection of the needs of the dying person's family, a mechanical, non-organic view of life, and so forth. 20 Because hospice is a relatively new movement, it has not been fully evaluated.l Much of the existing literature is characterized by an evangelical flavor extolling the virtues of hospices without objective analysis. Information is needed about their organization, their growth over time, their experiences in caring for the dying, and their cost. Although two major national studies are under way--a demonstration project on hospice costs financed through Health Care Financing Administration (HCFA) and a study of the quality of hospice care by the Joint Commission on Hospital Accreditation--data from these studies are not expected until 1984. For many legislators who feel pressure from local constituents to provide licensing laws and rules for hospices, one year is too long to wait. This dissertation provides a description of the status of hospice programs in Michigan, their organizational approach to providing health care, and their history of change. Most authoritative studies of social movements are conducted long after the movement is over and it is possible to assess more than its immediate social impact. However, this approach has the inevitable bias of stressing the end rather than the beginning of the movement. According to Freeman (1975, p. 8), there is "value in an early assessment . . . . Primarily among these include the opportunity to collect data on origins and early growth which would otherwise be lost with time and fading memories . . . . 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In this instance we can see how environmental factors provided a basis for discussion of the hospice concept. The women's movement, home birth movement, issues in cost containment, negotiations between death- with-dignity and right-to-life advocates were all responsible for creating a climate for the development of hospice as a social movement. For the purposes of this investigation, social movements are defined as consciously and purposively structured types of collective behavior which aim at effecting changes in society (McCarthy and Zald, 1973). Social movements contain organizations which consciously attempt to coordinate and mobilize supporters for the movement (Zald and Ash, 1966). The organizations directing the social movement--in this case the hospice programs--will be referred to as "social movement organizations." Social movements range from those that are radical and all-embracing, aimed at totally changing the structure of a society, to specifically focused reform attempts. They encompass idea movements which are aimed at changing society by changing individual thought and movements tied to specific ideologies and tactics. At the level of the social movement organization (SMO) they include radical and clandestine terrorist groups, retreatist sects that re-evaluate the world, reform-oriented political action groups such as Common Cause and interest groups aimed at changing a law or policy to benefit their members (McCarthy and Zald, 1973). 22 The study of hospices as social movement organizations (SMO) provides an opportunity to assess select sociological propositions by Weber (1946), Michels (1949), Zald and Ash (1966), and Selznick (1953) that provide a theoretical framework to predict the development of a social movement organization (SMO). The propositions deal with integration of SMOs as measured by shifts in goals, leadership and external affiliations. The proposed research represents a shift from traditional SMO research which has been largely descriptive and conceptually focused on factors such as ideological base and social/psychological characteristics of members in the general context of societal change (Gurr, 1970; Turner and Killian, 1972; and Smelser, 1963). This study, in contrast, will follow in the tradition of Gusfield (1957), Messinger (1955), Gordon and Babchuk (1959), Zald and Ash (1966), Curtis and Zurcher (1974) which focus on social movements as complex organizations. Articles by Curtis and Zurcher (1974), Zald and Ash (1966), Bush (1978), McCarthy and Zald (1973) critique the theoretical constructions outlined by Weber and Michels which suggest that three types of changes in social movement organizations occur: 1) goal transformation, 2) shift to organizational maintenance and, 3) oligarchization. While the model proposed by Weber and Michels provides a broad framework from which to analyze growth, development and change in social movement organizations, Zald and Ash (1966) claim it is incomplete: There are a variety of other transformation processes that take place, including coalitions with other organizations, organizational disappearances, factional splits, increased rather than decreased radicalism, and the like. And in fact, the Weber-Michels model can be subsumed under a more general approach to movement organizations which specifies the conditions under which alternative transformation processes take place (p. 463). 23 McCarthy and Zald (1973) have also criticized this model, claiming that it makes certain assumptions about the psychological state of members in attempting to account for the motives of involvement. Tension, frustration and related deprivation are key terms in such an account. Even as the interdependence of the movement with environmental forces beyond its support base are analyzed, the psychological state of the support base remains crucial. Yet, in spite of these criticisms, the classical model provides us with a mechanism for understanding the evolution of a social movement. As we shall see, it also provides insights for assessing hospice program development. Potential for Social Movement Social strain creates a potential for social movements (Freeman, 1975). The strain is often perceived as a break with past methods or systems and is usually used as a benchmark to pinpoint a movement's origin. For example, the 1954 Supreme Court decision on school desegregation is usually marked as the beginning of the civil rights movement. In the case of the hospice movement, Elisabeth Kubler Ross's book On Death and Dying is credited with the beginning of the movement in America ( Stoddard, 1978). A variety of taxonomies exist which delineate the creation of social movements and their evolution over time. Freeman (1975, p. 46) considers the many theories confusing and, to a large extent useless. She notes that movements are rarely studied as distinct social phenomena but are usually subsumed under one of two theoretical traditions--that of collective behavior (Smelser, 1963; Olson, 1968; Blumer, 1939) or that of interest group and party formation (Turner, 1969; Lang and Lang, 1961; Heberle, 1968). The first of these traditions views social movements in the same genre as fads, riots, crowds and panics. From this perspective a social movement is a form of "elementary 24 collective behavior on a large scale" (Smelser, 1963).1 The other approach sees social movements as one way in which interest groups or political parties are formed. These theories are primarily concerned with the organized aspects of a movement, its public program and its institutional impact while neglecting the social changes the movement might make. In understanding the development of hospice as a social movement it is important to understand that movements are neither fully collective behavior nor incipient interest groups. As Freeman (1975, p. 47) points out, they "contain elements of both. . . being purposive in direction, involving a critical amount of group consciousness, and resulting in both personal and institutional changes. It is the dual imperative of spontaneity and organization that sets social movements apart from collective behavior on the one hand and pressure groups on the other." It is the social movement organization which Zald and Ash (1966) pointed to as central to understanding the structured aspects of a movement. The social movement organization not only determines much of the movement's conscious policy but also serves as a focus for the development of the movement's values and activities. Just as it has been argued that society as a whole has a cultural and structural "center" around which most members of society turn, so too a social movement can be conceived as having a center which directs its activities and a periphery (Shils, 1970). 1 Anthony Obershall, in his book Social Conflicts and Social Movements (1971, p. 22) critique's Smelser's theory of collective behavior as "emphasizing discontinuities and differences. While other sociologists are seeing rational components of collective behavior, Smelser's emphasis is in the non-rational components; when other sociologists emphasize the diversity of beliefs, motives and perception in collective behavior that lead to heterogeneity of crowd behavior and of differential participation in social movements, Smelser emphasizes the homogenizing effects of generalized beliefs." 25 An investigation into a social movement's origins must be concerned with microsociological and macrosociological preconditions for the emergence of the movement center. From where do people come who make up the initial, organizing cadre? How do they come together and how do they come to share a similar view of the world which compels them to take action? In what ways does the nature of the original center affect the future development of the movement? What environmental factors support the development of this movement? The next section examines the evolution of hospice as a social movement and the development of hospice programs as social movement organizations from which to direct the movement. History of the Hospice Movement Most movements have inconspicuous beginnings. The significant elements which sparked the movement are often forgotten over time and retroactive analyses are often incomplete. However, it is useful when trying to analyze the development of a movement to apply some theoretical framework regardless of how weak or loose that framework is. For a guide, we can turn to Armand Mauss. Mauss (1971), describes five broad stages conceptualizing the natural history of a social movement: 1) incipiency (early unorganized activities), 2) coalescence (gradual formation of leadership), 3) institutionalization (passage of laws, formal organization), 4) fragmentation (early conflict) and 5) demise (co- optation or repression). The chief impetus projecting a movement through these stages is the interaction between the movement and the society, the movement's dependence upon the host society. A movement must try to maintain its identity, integrity and a continuing commitment to principles while simultaneously trying to broaden its membership and support base. The host 26 society, on the other hand, may try to contain the movement. Mauss' conceptualization forms a basis for understanding formation of hospice. The original hospice founders wanted to integrate the hospice philosophy into the traditional medical system. They sought to alter the way in which physicians, nurses and families dealt with death. They also wanted to change societal attitudes toward the dying and to provide them with a more dignified and humane life ending, free of mind-altering drugs and excessive interventions. The early, uncoordinated efforts of the movement during what Mauss' terms its "incipiency" consisted of small living-room gatherings where people discussed their frustrations with the existing system of care for the dying. As one man said, When we first met we didn't have any overall idea. We just talked about our anger at the system, nobody in particular, just the way things were. We felt better being with others who experienced similar frustrations. All of a sudden someone came up with the idea of hospice and we were off. We began to discuss developing a program and making it work. We didn't want to belong to any other organization. We just wanted to work by ourselves. Over time, the movement "coalesced" and several leaders formed. Most prominent among them were Elisabeth Kubler-Ross and Cicley Saunders, who prescribed hospice as method of care for the terminally ill. As Saunders (1969, p. 52) wrote, "There is a difference between prolonging living and what can really only be called prolonging dying." As discussed earlier, movements have an "enemy." The targeted enemy during the movement's coalescence stage was the medical care system, an elusive enough symbol at which to throw barbs without ever targeting anyone in particular. Early organizers blamed "the system" for its failure to deal with the needs of the dying. To some, the system included physicians and nurses, to others it targeted hospital administrators. Society's inability to discuss death 27 was also a target of early founders. They attacked the distancing of the family from the patient during the final days. As an early article about hospice noted: I realize that I have been shielded from the idea of dying. That I was the product of an enlightened society that banished the idea of death. . . and by banishing the idea, we have too often banished the dying to physical and emotional isolation, to denial of reality, to unnecessary pain, both psychic and physical. . . . Americans are uncomfortable with the idea of death. Their ability to comfort the dying and their families is thereby diminished. (Zorba, 1978). As hospice concept moved through the second stage the enemy and the plan of attack became more specific. De-institutionalization of the dying was the battle plan, "death with dignity" the slogan. According to hospice directors interviewed, the home must be re-established as a place for death. The hospitals society created are not appropriate for the terminally ill. The structure of health care in hospitals is designed to deal with acute diseases. In order to serve the purpose for which it was created, the hospital must cure the pathologies of the ill. In order to survive as an organization, the hospital must make money. It does both these things--makes money and treats disease--through medical heroics. A hospital is not intended to deal with emotional issues surrounding not only the patient but also the family. It is not designed to provide a home-like atmosphere for patients and a "rest stop" during their final days. As one organizer wrote, "hospice is not a means to fill hospital beds. Rather, the goal of such a program is to help the patient live at home as long as possible." By directing attacks at the hospital system, the hospice founders were able to do three things. First, they were able to provide a rationale for the existence of hospice programs outside the confines of the hospital. Second, they were able to recruit nurses and physicians to their cause since it was not these professionals that had caused the problem, but rather the system itself over which they had little or no control. Third, they were able to develop a specific 28 ideology containing their particular brand of explanation for problems and solutions. As one early movement organizer said, We were all just mad. We sat in my living room. . . there must have been about 20 of us. . . and talked for what seemed like hours. We all had some horror story. We were angry at the doctor, the nurse, someone. After a while we realized that our loved one might have received better care if he was at home. It was the place of care that caused the problem. All of us had had a bad experience with hos 'tal . Now we knew what we had to do. . . It was during this time of coalesence that advocates discussed the need to be isolated from the traditional system. After all, it was the existing system that caused the problems, that failed to provide appropriate care for the terminally ill. Therefore, it followed that change from the system meant a break with it and the formation of independent hospice organizations. "We didn't want to be associated with the area hospital," said one board president. "We wanted our own ten-bed inpatient facility and our own staff. We had no intention of working cooperatively when we began. We just didn't think the home health agency or the hospital did a good job of caring for the dying." The early hospice programs in this country were largely small volunteer organizations. They had little, if any, program of care for the dying. They sought to do "good things" and to provide the dying with an option from the existing system. Some organizers turned to England for guidance, others sought help from leaders such as Elisabeth Kubler-Ross. The majority of the early organizers, however, were non-medically trained individuals-~clergy, consumers, funeral directors, etc. The dynamics of the period of coalesence were described by one woman: 1 This type of organizational mobilization is described in Obershall, Social Conflicts and Social Movements. 29 Let's face it, we didn't know anything. It sounded like a good idea.... We thought we knew all the problems. . . we envisioned a cadre of volunteers. . . neighbors, who would help each other during the final stages. The articles we'd read were so appealing. The family, clustered around the dying patient's bed. A small child kneeling, a dog looking in. It was so ethereal. . . . The patient had a slight smile on his face, he looked so peaceful. The news articles were always the same. They had testimonials from people who described the beauty of death. There wasn't a lot of information back then. We all read Kubler-Ross' book and discussed it.... It's funny. Things changed. They became so different once we really got started. We had so many things to think about. We realized we needed to provide more than emotional and social support. We had to do actual physical patient care. This boggled our minds. We didn't know how or where to begin. . . . I remember, it was one year after we began meeting that we'd heard of this other program in Michigan. It was started by a doctor. We received some information. It looked terribly involved. We decided at that meeting that we had to expand our group. We had to have a physician who would work with us. As the impetus for hospice grew across the country and in Michigan, concerted efforts were made by organizers to involve physicians and nurses into the planning and development of individual hospice programs. The National Hospice Organization hired a physician, Josephine Magno, as executive director. This provided a further push toward involvement of medical care personnel. The media played an important role in promoting program development. Between 1974 and 1981 thousands of articles were printed which described the hospice philosophy of care and provided examples of hospice programs operating in England and in the United States. A 1978 article by June Bingham in the Detroit News noted, "Hospice is an idea whose time has come--for people whose time has come. . . . By the time I am dying," she continued, "I hope there will be enough good hospices in the U.S. for one to be near my home." Another article, written two years later in The Michigan Catholic praised and underscored the fact that the hospice philosophy was consistent with the Vatican declaration on euthanasia, issued June 26, 1980. The author, Catherine 30 Vatican declaration on euthanasia, issued June 26, 1980. The author, Catherine Haven, quoted from the Vatican Declaration, "What a sick person needs, besides medical care, is love, the human and supernatural warmth with which the sick person can and ought to be surrounded by all those close to him or her, parents and children, doctors and nurses." The press coverage on hospice followed the organizational development of the movement from anlidea to an organized form of health care for the terminally ill. The primary thrust during this period (approximately 1973-77) was the emphasis of the dying at home and the development of programs of care to deal with the pain--both physical and mental--associated with terminal illness. By the end of 1977 the movement entered a third stage, that Mauss refers to as "institutionalization." It was during this time that organizers stopped calling for a program of care that was separated from the existing health care delivery system and began to deveIOp strategies for integration. Then Secretary of Health and Human Services, Joseph Califano, called on his staff to devise a number of steps to ease the progress of the hospice movement. The National Hospice Organization was incorporated in 1978 and one year later, the W.K. Kellogg Foundation provided funds for the Joint Commission on Hospital Accreditation to develop standards for hospice care. The organizers were now discussing ways in which they could become integrated into the existing system. The change in attitude did not occur overnight. It was the result of five major factors. First, hospice organizers realized that caring for the terminally ill had to include some level of nursing care. They realized their expertise in this area was limited and needed to ally themselves with individuals who had appropriate background. This meant including nurses and physicians in their organizational deliberations. 31 Second, programs based on strictly volunteer help were having a difficult time coordinating and providing care. While most volunteers were enthusiastic about working with patients, someone needed to coordinate the volunteers, organize records, and recruit members. Administrators suffer from burn-out after a while, this is especially problematic if they are unpaid. These volunteers who devoted hours of their time were tiring; some needed money for their personal support. Hospice programs began to seriously pursue ways of seeking funds from third party insurers and private foundations. In order to do this they needed legitimation. They needed to develop a program of care for the dying that was organized and could be sold. Operating without the support of the medical community, area hospitals and home health agencies was not going to help their drives for outside financing. Third, as more medical personnel were invited to participate in the organization and development of hospice programs, they brought with them the values and standards of the system of which they were a part. They wanted the hospice programs to be "of high quality." This meant that they had to have standards of patient care. As one medical director said, "We had to make sure that not every charletan would open a hospice program. We realized, after we got our feet wet, that we needed procedures, policies and standards.. .. After all, we are providing care for the dying. This is a very complex area. We have to make sure that quality of care is maintained." It was this elusive term "quality" to which many organizers referred when asked why they wanted standards developed and procedures followed. Fourth, hospice programs developed technologies for pain and symptom control and palliative care. Only licensed medical and nursing personnel can administer these drugs. If hospice programs did not become institutionalized, 32 they risked withdrawal of support from the professionals they needed to assist in administering their most important technology, pain control. Fifth, the American population is socialized to accept Western medicine and to expect some uniformity. When someone describes a hospital, we have a mental image and expect certain standards of cleanliness, sterility, types of personnel, etc. Similarly, when someone describes a hospice program it is only natural to expect certain uniformities regardless of where in the United States you live. As one hospice administrator said, We've got to have standards for hospice care. It would be un-American if we didn't (laugh). Joking aside, people expect certain things. They expect that when they enter a hospice program they are going to receive a type of service. If I transfer one of my patients to Hospice X, I have a right to expect that he will receive a certain standard of care which continued the care he received here. . . . I really don't think it's asking too much to want hospice programs standardized. After all, we are a provider of health care services, aren't we? Hospice programs are still in Mauss' third stage. Yet, as we shall see later, they are beginning to step into Mauss' fourth stage, fragmentation. The drive of the hospice program directors for institutionalization is also a call for integration. In order to achieve this end, hospice organizers sought passage of legislation to provide Medicare reimbursement for hospice patients, support from third-party insurers, and status as official providers of care for the terminally ill through state licensing statutes. In general, efforts toward integration have been successful-~30 successful, in fact, that organizations once excluded as legitimate providers of hospice care are now becoming a major force in the development of new programs. According to NHO Executive Director Josephine Magno, 40% of the hospice programs developing are hospital based. Another 20% are home health agency affiliated. Increasingly, existing providers are entering into the hospice industry. Similarly, some hospice programs are seeking alternative status as home health agencies. 33 Hospice programs were recently granted "independent provider" status under the federal Medicare regulations. This allows the programs to receive federal reimbursement for patient care. The program is responsible for determining patient care plans, hiring appropriate personnel, etc. The hospice program, in short, has a provider classification and can be considered a part of the traditional health care system. It must conform to standards and protocols if it is to receive federal funds. Further, licensed personnel are responsible for patient care plans. Mauss (1975, p. 60) notes it is rare for a movement to outlast its host society, unless, of course, the movement is a successful revolution. Brinton (1952) shows how a society can absorb revolutionary leaders as they turn to realities of governance in an established cultural setting. They can be co-opted or integrated into the host society. The dynamics between the development of a social movement and its interaction with the host society provide an opportunity to study the degree to which a movement becomes integrated or co-opted by the larger social system. While the subject of this research is integration, it is often erroneously used as a synonym for co-optation and requires a discussion. Co-optation refers to ameliorative gestures in the direction of meeting and neutralizing the movement's criticisms, combined with a propaganda effort emphasizing those interests and values which the society shares with the reform movement (Mauss, 1971). Integration, on the other hand, is the societal acceptance of a movement and a shift in laws, norms or rules to address the criticism levied at the society by the movement. Because these are both operating during the interaction of the movement with its host society, it is important to analyze them separately. 34 Co-optation and Integration Selznick (1953) defined co-optation as "the process of absorbing new elements into the leadership of policy-determined structure of an organization as a means of averting threats to its stability of existence." Selznick describes how the reform program of the Tennessee Valley Authority (TVA) encountered strong opposition from powerful entrenched forces in the area and how the TVA's grass- roots policy enabled it to achieve success by co-opting some representatives of the opposition into its management. However, since these new elements influenced the policies of the organization so that they reflected their own interests, the earlier objectives of the TVA were modified and transformed. Gamson (1968) noted that the process of co-optation may not be all bad. Although co-optation "removes some of the insulation between potential partisans and authorities, it makes the former subject to other control techniques which were not previously available" (Gamson, 1968, p. 135). The trend toward conservatism brought on by pressures from the larger society has been identified in discussion of political movements as a trend toward bureaucratization or routinization. According to the theories of Weber (1947) and Michels (1949), as a social movement organization attains an economic and social base in a society, the original charismatic leadership is replaced, original goals are transformed to conform to external pressures and a bureaucratic structure emerges. By this Weber meant that an organization has an on-going base of financial support. . . . bureaucracy as a permanent structure is knit to the one presupposition of a constant for maintaining it. . . (Weber, 1946, p. 208) In his discussion of social base, Michels noted that the organization must play to the interest of "possible adherents and sympathizers who can join or support the movement" (Michels, 1949, p. 334). 35 Implicit in this model is the notion that the chief goal of a social movement organization is organizational maintenance. According to Michels' (1949) "iron law of oligarchy," a successful social movement organization adjusts its goals to conform to those of the larger society. Movements which conform to the norms of behavior in order to survive and participate in existing institutions often find themselves forsaking their original goals for social change. Long-range ideals become warped for the sake of short- range gains. However, movements that hold steadfast to original, often radical, goals and disdain affiliation with existing organizational structures find themselves isolated in "splendid ideological purity" which gains nothing for the movement or its participants. They become paralyzed by their own fear of co- optation; and "such paralysis is in turn the ultimate co-optation as inactive revolutionaries are a good deal more innocuous than active reformists" (Freeman, 1975 p. 6). Integration refers to the participation of the SMO in the larger society or, as Wilson (1973) defines it, "behavior in harmony with the environment." Integration of a social movement organization is one form of organizational development which is achieved by expanding organizational domains in order to reduce or eliminate significant contingencies (Thompson, 1967), or by improving cohesiveness so that organizations which exhibit similar values and norms are more highly integrated than those which exhibit dissimilar values and norms (Blau and Scott, 1962). In the case of social movement organizations, the movement is considered integrated if the larger system passes laws, establishes norms and so on which conform to the goals and objectives of the social movement organization. If, on the other hand, the social movement organization adopts the goals of the system it seeks to change while down playing or significantly changing its original goals 36 so that they are no longer recognizable, it could be argued that the SMO has been co—opted. In the case of hospice, the intent of most early organizers was to ensure that the hospice concept became an integral part of the existing health care system. Early hospice movement founders encouraged tactics and exchange relationships which would establish important and relevant links to the existing health care system. They sought to include hospice as a legitimate1 form of health care and promoted the drafting of hospice standards, passage of hospice legislation, adoption of reimbursement for hospice patients, involvement of physicians and other members of traditional health care on hospice boards, as strategies to integrate hospice into the larger health care system. To use Mauss' term, the hospice movement sought "institutionalization" and integration. To many hospice program founders, integration was the key to success. They felt that unless the traditional system accepted hospice as an alternative form of care for the dying, the programs would not survive. Because of their emphasis on palliative care for the dying patient, hospice programs are highly dependent on the physicians and home health agencies. The state and federal laws required that traditional providers become an integral part of hospice care. Reimbursement programs, such as the Medicare entitlement, mandated the involvement of a physician and the provision of home-based skilled and basic nursing care by licensed nurses. Legitimacy is one of the criteria that Gamson (1975) used to measure success of social-reform groups. He defines legitimacy as whether a challenging group is accepted by antagonists as speaking for its constituency. By acceptance, Gamson means consultation, negotiation, formal recognition, or inclusion in the antagonists' organizational structure. 37 Yet, for some hospice program leaders, integration was a much dreaded outcome. These individuals view hospice as a distinct health care provider which should not be confused with or integrated into the existing medical care system. Claiming that the concept of hospice will be lost, opponents of integration contend providers in the traditional system are unable to fulfill the needs and guarantee the rights of the dying patient. These divergent viewpoints have caused conflicts among hospice program organizers and have led to a fragmentation within the hospice movement which is examined in detail in the results and discussion sections of this research. The next section describes integration as a concept used in this research. It examines factors which influence a program's integration such as size, goals, external affiliations, development of environmental supports, board composition and organizational competition. Integration as 3 Construct The major concern of the research was the ability of hospice programs to become an integrated part of the existing health care system. Integration was seen as important to the long-term survival of hospice programs as they could not exist as separate isolated service providers. They needed an on-going source of funds and the acceptance by the medical community. Moreover, attempts to exclude the existing health care system would have meant certain doom. As one founder noted, We started by trying to set up a hospice program within the local hospital. . . . Some people in our group did not want to be part of the hospital. They thought it would hurt us in the long run. The other areas' hospitals wouldn't refer patients to us and the home health agency nurses might not want to work with us. . . . We decided to establish an independent organization. . . . After a while our meetings turned to the discussion of how we could get the area hospitals to work with us. . . . We wanted and needed their support. 38 The concept of integration might best be explored by contrasting two hospice programs. The ideal integrated program would be one that attracts support from members of the medical and business community. It is bureaucratic in form having a paid staff, assignment of specific tasks (division of labor) and goals directed toward building a stable economic base. In contrast, the ideal non-integrated program relies heavily on volunteers, especially use of volunteer staff, has limited support from the medical and business community, has low division of labor and is more concerned with promoting the hospice concept then with building a stable economic base. Hospice "Divine" is the largest integrated hospice program in the state. It is located in a heavily industrialized area with a tri-county population of more than four million. Divine is an "inpatient" hospice. This is particularly important since Divine is a fairly new program and is located in an area of the state with a large surplus of acute-care beds. The tri-county area in which Divine offers services has approximately 75 hospitals ranging in size from approximately 80 to more than 1,000 beds. Divine was established by the MetrOpolitan Northwest Hospitals Corporation (popularly known as the Square Corporation), a non-profit hospital consortium. The history of Divine is recounted in one of its documents. . . . In 1976, the executive director of the Square Corporation, Mr. Ed, learned of the hospice concept from his wife, a registered nurse. He began to saturate himself with knowledge about hospice care and visited several hospices in the United States. He invited a local physician who was also studying the hospice concept to make a presentation on hospice care to the administrators of the Square Corporation hospitals, with the goal of convincing them of the need for a hospice within the service area of the four hospitals. His strategy was successful, and a physicians' task force was appointed from the medical staffs of the hospitals. After several months of review, the task force endorsed the concept, and Mr. Ed moved into the planning phase. 39 Mr. Ed, a Fellow of the American College of Hospital Administrators, was astute enough to realize that he could lose the competitive advantage of submitting the first application for a hospice certificate- of-need in the state if hospital administrators other than those in the Square Corporation prematurely learned of his actions. He was acutely aware of the necessity for conducting his planning as quietly as possible. He reasoned that since 90 to 95 percent of hospice patients would have terminal cancer, cancer deaths in the tri- county area would approximate the number of potential hospice patients, and he sought statistics from the local cancer foundation and the Divine Chapter of the American Cancer Society. The data may have been somewhat inaccurate, but Mr. Ed believed the figures were suitable for planning purposes. He learned there were 10,888 cancer deaths in the tri-county area in 1975, 11 percent occurring in nursing homes, 8 percent in private homes and 81 percent in hospitals or in transit to hospitals. The place-of-death percentages strengthened his opinion that hoppice planning was appropriate for acute care hospitals. The original planning body of Divine included of representatives from the hospitals that comprised the Square, including a director of planning and government relations for St. N Hospital, a chaplain from St. J Hospital, a member of the board of trustees from Mt. T Hospital and the chief executive officer from H Hospital. In the process of planning for the certificate-of-need application for his hospice program, Mr. Ed worked with state public health officials as well as state and local planning groups to gain support for his hospice concept. Area health planners suggested that Mr. Ed broaden Divine's scope to include other hospitals. In exchange, the local health planning agency--responsible under an earlier discussed health planning statute for determining the need for new hospital based services--proposed they would provide Square with the certificate of need approval. If Square had the approval other area hospitals would not be able to start their own competing hospice. Paper on the historic development of Hospice Divine. Confidential document presented to the researcher by Divine's executive director. 40 Mr. Ed sent letters to "selected hospital administrators" inviting them to participate in Hospice Divine. His letter, along with publicly and privately issued statements from the local health planning agency, "subtly implied to the more reluctant hospital Chief Executive Officers (CEO's) that the Square Corporation hospitals already possessed strength in numbers, and that the local health planning agency would be hesitant to endorse more than one hospice at present."‘1 The strategy worked and in October 1978, seven hospitals were involved in an effort to form Hospice Divine. Each hospital paid a "one-time-only" membership fee of five thousand dollars for development funds which included payment of legal fees, a financial feasibility study and the salary of a hospice director. According to Hospice Divine records, within one and a half years, 13 hospital corporations representing 22 acute care hospitals in the tri-county area in which Divine was located, were members of Hospice Divine. The hospital members included three Catholic-sponsored and one Jewish—operated hospital. Three of the 13 corporate members were osteopathic hospital corporations, representing six of the 22 acute hospitals. The hospitals involved with Hospice Divine have invested thousands of dollars in the program. Reasons for the investment are varied, as Divine administrator Ms. Mic points out, Hospice Divine was an experiment. Each hospital wanted its own program but didn't know if it was worth the investment. Because hospice was so new, no one knew what they were doing back then. It made good business sense to start the consortium and let one central place treat terminal patients, collect data, and work out the problems. . . I wouldn't be surprised if many of the participating hospitals formed their own program eventually. We would still have a function and, as I see it, would have a major role in consulting with those hospitals on what we've learned. 1 Taken verbatim from confidential document. 41 In terms of the criteria for integration, Divine is formally affiliated and dependent upon area hospitals and reimbursers for economic support. While some of its two million dollar operating budget is from memorials and private donations, Divine depends on third-party reimbursement from Blue Cross/Blue Shield and other third-party payers for most of its operating funds. Divine's administrator actively seeks outside funding and was recently awarded a $250,000 grant from the State Department of Social Services to analyze the cost effectiveness of providing hospice care to terminal Medicaid patients. Divine enjoys wide range support from members of the community. The 25-person board is composed of 14 representatives from the local hospital members in addition to 11 other non-medical professionals from the community. Divine has a high number of paid staff-~the highest number of any hospice program in the state--and pays most staff full-time wages. Individuals from the public are not invited to become members of Hospice Divine. Interested individuals can volunteer their time and services to work with the hospice, but most volunteers do not provide direct patient care. As Ms. Mic noted, "We can't use them the way some other hospice programs do. We also have quite a few trained staff who care for most of the patient needs. Volunteers can help us in our business office, or they may spend time reading to patients, speaking for hospice, or helping the relatives of the patient." The use of volunteers at Divine is similar to that of the hospital participants. Volunteers are used primarily to staff the reception area, deliver packages or food trays to the sick, and sometimes spend time with patients in their rooms. 42 The staff at Divine are a close-knit group, according to the administrator. They spend lots of time working in an intense environment. Team meetings are held Monday mornings from 8:00 to noon. "They are an important way to begin the week and to get in touch with what needs to be done," said Ms. Mic. Volunteers do participate in the team meetings, which are held every Monday. The medical director, nursing, social work staff, chaplain, physical therapist, and occupational therapist are present at these meetings. Hospice Divine meets most of the criteria for an integrated program and has high reliance on paid staff, high interest in seeking outside funds, is formally affiliated and dependent upon area hospitals and third-party reimbursers for survival, and is supported by the medical community. According to Ms. Mic, "The long range goal of the area hospitals which founded Divine was to make it a self-sufficient program." Hospice Divine is a highly structured inpatient hospice care facility. Its organizational chart (attached) looks similar to those of the local hospital affiliates. Patient charges for Divine are $220.00 per day. The 38 inpatient beds are almost always filled. "We run a 90 percent occupancy," said Ms. Mic. "We could go higher but we observe a policy of keeping the bed of a dying patient vacant for 24 hours. We place a rose in the center of the bed as a memory of the patient. The staff person treating the patient needs time to work through his or her grief." The discussion of Hospice Divine has focused primarily on its inpatient unit. However, Divine also has a home-based program. For patients with insurance which reimburses for home care, Divine uses area home health agencies to provide care to patients in their home. ruin: Km: .: .unn .uuxu m< mc< "1053: Panrauun 5:. 0k Kab‘ghnnz~rn< Pfihw~um H auxin—En; Taugugngs— tuna”: yrs—D: uzzomfi: 1. Son—5.5...“ an: ZOE—bond canal—Hg maou”: Hz»... .68.... _ 32:..— «Qua: _— can... W .10). This goal shifted in importance over time. Table 10 below notes the correlations between initial and current goals. TABLE 10 CORRELATIONS BETWEEN INITIAL AND CURRENT GOALS Goals Correlation Improve patient .99 (44) comfort = * Increase .86 (45) organization p = .001 participation Self sufficient .80 (42) program p = .001 Change community .77 (44) attitudes p = .001 Recruit .75 (43) members p = .001 Increase third- .71 (42) party funds p = .001 Include family .70 (44) in care plan p = .001 Establish .68 (43) linkages p = .001 Obtain third- .67 (43) party funds p = .001 Symptom .36 (44) control p = .009 Promote hospice .35 (43) concept p = .20 Care for patient -.03 (44) at home p = .415 * = no variance N in parentheses 100 Only two goals were not significantly correlated over time: (1) "To promote the hospice concept," and (2) "To care for the patient at home." Results showed that these goals changed over time while other goals remained the same. It is difficult to determine the reason for these two shifts. It can be speculated that in the case of goal (1)--promotion of the hospice concept--the degree of importance in this goal was reduced as programs became more developed. As the hospice program gained acceptance in the community, established a stable funding base and patient load, program directors may feel that it is less important to promote the hospice concept and more important to address goals related to organizational structure. This shift is consistent with the social movement life-cycle predictions of Turner and Killian (1962), Reisman (1972) and Mauss (1971) described in an earlier section. These authors maintain that the goals of the social movement shift as the social movement redefines its needs. For hospice programs in later stages of development the needs shift from gaining community acceptance and support of the concept, to establishing and maintaining a program structure. For goal (2) "caring for the patient at home," reasons for the shift are similar to those for goal (1). That is, as the program developed its emphasis shifted from one of promotion to one of patient care. Early founders echoed the hospice philosophy but, because they did not accept patients-~recall it takes about two years for a program to reach a point of accepting patients--early organizers were not concerned about caring for the patient at home. Their energies were focused on the design and building of a hospice program and not daily activities of patient care. As their patient loads expanded their emphasis shifted to patient care. As one director noted in the open-ended comment section of the questionnaire. "Our goals shifted as we increased in size and 101 became operational. When we first started we focused our attention to community education; now our energies are devoted to patient care." The Spearman rank-order correlation between the mean response for initial goals and the mean responses for current goals was r = .97. Therefore, there was little change in the ordering of goals. Difference scores were calculated by subtracting the score on current goals from initial goals. These difference scores were then correlated with the mean score for the independent variable, integration. One significant value was recorded: The difference between the initial and current goals, "To promote the hospice concept." Results are reported in Table 11. TABLE 11 CORRELATION COEFFICIENT’S DIFFERENCE SCORES ON INITIAL AND CURRENT GOALS AND LEVEL OF INTEGRATION Goals-l— Promote Change Self— Third-party hospice attitudes sufficiency funds Integration .2631 .0961 .0387 .0593 (43) (44) (42) (43) p :.044 p 2.268 p :.404 p :.353 Goals Increase Establish Recruit Involve funds linkages members physicians Integration -.1311 .0460 -.1537 .0014 (41) (43) (a3) (45) p =.203 p = .385 p =.163 p =.496 For purposes of analysis goals that did not have any variance were eliminated. 102 With the exception of "promoting the hospice concept," the measure of goals as an index of change showed no significant relationship between integration and the difference in initial and current goals over time. To reevaluate the existence of change, an attempt was made to construct a second "index of change," using different variables. Three survey questions asked respondents for information regarding organizational change. One question asked if membership policies had been altered, another asked if there had been more than one executive director of the hospice program, and a third asked if goals for the program had been altered. It was assumed that if these items were highly correlated, an index could be constructed and used to analyze integration. Table 12 shows there is no correlation among items. Therefore, given the present data, it was impossible to construct an index of change. TABLE 12 HOSPICE PROGRAM CHANGE Number of hospice Altering Altering program directors goals structure Membership -.1400 -.0231 -.2722 change (30) (30) (30) p :.230 p :.452 p :.073 Number of hospice -.1351 .1715 program directors (48) (48) p =.122 p =.180 Altering .2023 goals (48) p :.084 Competition Results show that the hospice program respondents stating they "did not have hospices nearby" had fewer hospice programs nearby, than those indicating "another hospice program existed" in their city or county. Table 13 below shows 17 respondents had almost five other hospice programs within a 25-mile radius. 103 Thirty-one of the respondents indicating there was "no program nearby" were within 25 miles of an average of two other hospice programs. TABLE 13 PROXIMITY OF OTHER HOSPICE PROGRAMS Hospice program Average number of programs director response gar 25-mile area Number of responses Yes, there is another 4.94 17 program nearby No, there is not another 1. 94 31 program nearby N = 48 Pearson Correlation Coefficients were computed between the density measure and its components (county population and the number of hospices in an area) and integration. The results were significant (r = .23, p < .06). A summary of the results is reported in Table 14 below. TABLE 14 CORRELATION BETWEEN DENSITY, COUNTY POPULATION AND NUMBER OF HOSPICES IN A 25-MILE RADIUS Integration County population Number of hospices Integration County Population . 17 Number of Hospices . 15 . 70* Density . 23** . 94* . 51* * p < .001 ** p < .06 There is a significant positive relationship between the number of hospices in a county and the county population (r = .70, p < .001). 104 Based on the results of the correlation, it is concluded that the degree of density between programs was significantly related to hospice program integration. Does density have a differential impact on the integration of hospice programs depending upon whether they are large or small, non-institutionally based or institutionally based (typically hospital based)? Are larger hospice programs located in denser population areas than smaller hospice programs? Are institutionally based programs located in higher density areas than non- institutionally based programs? Hospice programs were divided into categories of large and small for purposes of analysis (median = -.355). The judges' ratings for integration were cross-tabulated with degree of density. Table 15 shows that density is not related to the size of the program, that is there is no significant difference between the location of large and small programs. TABLE 15 RELATIONSHIP OF SIZE OF HOSPICE PROGRAM TO HOSPICE DENSITY Degree of density Size of Hospice Low flgp Small 10 7 Large 5 13 Total 15 20 Bk: 35 X = 2.29 df = l p < .25 Table 16 shows a significant relationship between degree of density and integration. The more hospice programs located in an area, the more likely that the programs are to be integrated. 105 TABLE 16 RELATIONSHIP BETWEEN HOSPICE PROGRAM DENSITY AND DEGREE OF INTEGRATION Degree of density Integration _L_o_w fligp None 8 1 Moderate 5 10 High ___4_ ___7_ TOTAL 19 18 Kg: 37 X =7.9l df=2 p<.02 There is a relationship between density and integration but not between size and integration. Integrated programs tend to be located in higher density areas. Professional Leadership Hypothesis 4: The greater the degree of professional leadership among hospice program founders, the greater the probability a hospice program will become integrated. Results show there is no significant relationship between professional leadership and integration (r = -.07; p < .312). Board Diversity Hypothesis 5: The greater the diversity of the membership of a hospice program board, the greater the probability that the program will become integrated. Table 17 shows the correlation between size, integration and the components of the board diversity measure. Results show a significant negative correlation between board diversity and integration (r = -.27; p < .01), and no correlation between board diversity and size (r = -.10; p < .29). 106 TABLE 17 CORRELATION OF HOSPICE PROGRAM SIZE AND INTEGRATION WITH BOARD MEMBERSHIP TYPES Membership types Size Integration Other hospice employer .08 -.07 (35) (48) p = .29 p = .33 Physicians .043 -.26 (35) (48) p = .40 p = .03 Home health nurses -.12 -.19 (35) (48) p = .24 p = .09 Hospital administrators .15 -.09 (35) (48) p = 020 p = .28 Lay consumers .003 -.37 (35) (48) p = .50 p = .01 Educators -.26 -.25 (35) (48) p = .07 p = .04 Clergy -.06 -.32 (35) (48) p : .04 p = .02 Insurers -.15 -.13 (35) (48) p = .20 p = .19 HMO representatives .48 .09 (35) (48) p = .002 p = .28 Nursing home -.09 -.198 representatives (35) (48) p = .30 p = .09 Private -.07 -.20 foundation (35) (48) representatives p = .34 p = .08 Board diversity -.099 -.37 (All professions) (35) (48) p = 029 p = .0]. 107 Results show the more integrated a program, is the more likely the program is to have a diverse board. Multiple Repression Results The correlations between the measures of the variables size, external relations, organizational creation, density, professional leadership and board diversity are shown in Table 18. TABLE 18 PEARSON CORRELATIONS BETWEEN DEPENDENT AND INDEPENDENT VARIABLES Manner of External program Professional Variables Integration Size relations creation Density leadership Size . 3656 * (35) p =.02 External -.0524 --.1101 relations (48) (35) p =.36 p =.26 Created .5241 * .2559 -. 0050 (48) (35) (48) p =.001 p =.07* p =.49 Density .2290* .0366 -.0657 .1856* (48) (35) (48) (48) p =.06 p 2.42 p =.33 p =.10 Professional -.0725 -.0849 .4470* -.0007 .0187 leadership (48) (35) (48) (48) (48) p =.3l p =.31 p =.001 p =.50 p =.45 Board -.3701* -.0999 .6214* -.3015* -.1915* .3898* diversity (48) (35) (48) (48) (48) (48) p =.01 p =.28 p 2.001 p =.02 p =.10 p =.003 * = significant at p < .10 or below Table 18 shows density and mode of creation are positively related to integration whereas diversity of board is negatively related to integration. No 108 relationship exists between professional leadership and external relationships and integration. In terms of other variables, a positive relationship exists between density and size, professional leadership and external relationships; board diversity and external relationships; and board diversity and professional leadership. This relationship shows that larger programs are located in area with other hospices nearby--generally larger urban areas. Further, diverse professional leadership is linked to greater board diversity and numerous external affiliations. A strong negative relationship exists between board diversity and mode of creation, and between board diversity and density. In other words, those programs created by other organization are likely to have boards which are not comprised of diverse interest groups. Further, programs existing in areas with several other hospice programs are also likely to have boards which do not have many diverse interest groups. A multiple regression analysis to predict integration used five variables: mode of creation, size, board, competition, and external relations. "Created by other organizations" was strongest in predicting integration. Further, the variables size and board composition were significant at the p < .10 level in predicting integration. The multiple regression analysis was recomputed so that each of the variables (size, competition, external relationships, board density, and mode of creation) would be the last variable into an equation. In that way, the independent contribution of each variable, holding all other variables constant, could be assessed. The results presented in Table 19 show that at the p < .10 level, the variables board diversity, density and mode of creation have a relationship with integration that is independent of all the other variables. 109 TABLE 19 SUMMARY OF REGRESSIONS SHOWING CONTRIBUTION OF EACH VARIABLE WHILE HOLDING OTHERS CONSTANT Variable entered last F to enter Significance _R_2 change Board 3. 09 . 089 . 06 Density . 50 . 483 . 01 Mode of creation 4. 30 . 047 . 08 External relationships 1. 15 . 293 . 02 Size 3. 16 . 086 . 06 Multiple r = .64305* p > .006 R Squared : .41351 *Correlation between integration and a linear composite of the predictor board, competion, created, external relations and size. When ordering the variables (size, mode of creation, density, external relationships and board diversity) into the regression equation, the variables entered statistically in the following order (Table 20): TABLE 20 STEP-WISE REGRESSION OF VARIABLES PREDICTING INTEGRATION Multiple R Overall Ordering of F to Signifi- percent of Simple Overall signifi- variables B** enter cance variance 3 E cance $9129. 1 Created . 33 12. 500 . 001 . 52414 . 52414 12. 500 . 001 2 Size . 26 2. 747 . 107 . 57625 . 36561 7. 954 . 002 3 Board -. 35 2. 342 . 136 . 61562 -. 37014 6. 306 . 002 4 External . 20 1. 222 . 278 . 63506 -. 05236 5. 069 . 003 relations 5 Density . 10 . 505 . 483 . 64305 . 22905 4. 089 . 006 *Variables contributing at least one percent to explained variance are reported ** B = Standardized regression coefficient or beta weight R Squared = .41351 110 Other factors that might influence integration were examined. Does the multiplicity of donors (Question 29) influence integration? Are programs with many varied types of donors more likely to be integrated than those with only one or two types of donors or vice versa? The variables in Question 29 were reviewed for reliability. A coefficient alpha of .77139 indicates high correlation among items. Therefore, items can be added and used as a scale of donors. A correlation between multiplicity of donors and integration was not significant at the p < .10 level and therefore, not reported in this analysis. Physician and Home Health Agency Response Rate Earlier it was mentioned that physicians and home health agencies were surveyed in an attempt to understand their involvement with area hospice programs. Results from the physician and home health survey as they relate to hospice program involvement are noted below. Physician Survey Response One hundred and forty-three responses were received; 55% of the allopathic physicans responded and 58% of the osteopathic physicians responded. Of the 143 responses, seventy-six percent (109) were M.D.s and twenty-four percent (39) were D.O.s. The majority of the respondents were in general practice (70 respondents), while approximately one-third were in internal medicine (35 respondents), and one-fourth (28 respondents) were in oncology. Table 21 below shows the respondents by specialty and practice type. 111 TABLE 21 PHYSICIANS PRACTICE TYPE AND SPECIALTY General practice Internal medicine Oncology M. D. 50 35 24 D.O. 20 10 4 Totals 70 45 28 Home Health Survey Response F orty-two of the 57 home health agency directors selected for this study responded to the research questionnaire (74% response). The majority of the programs (60%) were nonprofit home health agencies; twelve programs (29%) were health department affiliated programs, two programs (5%) were affiliated with a hospital, two programs (5%) were for profit (proprietary) agencies and one was a hospice program. TABLE 22 RESPONDENT BY AGENCY TYPE Type of organization Freguency Percent Nonprofit non-affiliated 25 59. 5 Nonprofit health department affiliated 12 28. 6 Nonprofit hospital affiliated 2 4. 8 Nonprofit hospice 1 2.4 Proprietary 2 4. 8 Total 42 100. 112 Involvement Physicians. In general, physicians with higher numbers of terminal patients are more likely to be on hospice program boards of directors or willing to serve on hospice program committees than those with fewer terminal patients. Tables 23 and 24 show that as the number of terminal patients seen by physicians increases, so does their willingness to serve on a hospice board or committee. TABLE 23 PHYSICIAN MEMBERSHIP ON A HOSPICE BOARD BY NUMBER OF TERMINAL PATIENTS Membership on a hospice board Number of terminal patients Member Non-member Low (less than 14) 2 37 High (greater than 15) 11 28 N = 78 Chi Square = 5.908 D.F. = 1 p < .02 TABLE 24 PHYSICIAN WILLINGNESS TO SERVE ON A HOSPICE BOARD OR COMMITTEE BY NUMBER OF TERMINAL PATIENTS Willing Not willing Number of terminal patients to serve to serve Low (less than 14) 18 18 High (greater than 15) 26 9 Chi Square 2 3.47 D.F. = 1 p < .06 113 Tables 25 and 26 show physician service on a hospice board or committee and willingness to serve in relation to physician specialty. A greater percentage of oncologists are members of a hospice board. However, there is a strong change in terms of physician willingness to serve. A greater number of people indicate a willingness to serve than actually serve. TABLE 25 PHYSICIAN HOSPICE BOARD MEMBERSHIP BY SPECIALTY Specialty Member Non-member General practice 4 62 Internal medicine 2 41 Oncology 13 14 Chi Square = 32. 784 D.F. = 2 P < .00001 N = 136 TABLE 26 PHYSICIAN WILLINGNESS TO SERVE ON A HOSPICE BOARD BY SPECIALTY Specialty Member Non-member General practice 33 31 Internal medicine 16 19 Oncology 16 6 Chi Square = 4.219 D.F. = 2 P<.12 N=121 An analysis, using the scale of involvement, shows that there is a significant positive relationship between physician involvement and referral of 114 patient to a hospice program. Table 27 shows the relationship between program involvement and referral. TABLE 27 PHYSICIAN INVOLVEMENT AND HOSPITAL REFERRAL Degree of involvement Referral No referral None (0) 23 42 Little (1) 25 27 High (2) 18 1 Chi Square = 20.7415 P < .0001 D.F. = 2 N = 136 Home health agencies. Results show that there is no significant difference between agencies with high and low terminal case loads and participation on a hospice board or committee (Tables 28 and 29). TABLE 28 TERMINAL PATIENT LOAD AND HOSPICE BOARD REPRESENTATION Board representation Terminal Patients _ _\_/§_§ N_o 1-12 6 6 13-39 4 6 40-69 5 3 70+ 6 6 Chi Square = .900 D.F. = 3 P < .83 N=42 115 TABLE 29 TERMINAL PATIENT LOAD AND HOSPICE COMMITTEE REPRESENTATION Committee Representation Terminal Patients Yes E 1-12 6 6 13-39 4 6 40-69 5 3 70+ 6 6 Chi Square = .900 D.F. = 3 P < .83 N = 42 Using the involvement scale, results also showed no significant difference between the number of terminal patients an agency had and the degree of involvement in a hospice program (Table 30). TABLE 30 TERMINAL PATIENT LOAD AND HOSPICE PROGRAM INVOLVEMENT Number of terminal patients _S_p_c_nle_§ 12 or fewer M 49-11 71+ Not involved (0) 0 0 1 1 Slightly involved (1) 5 4 3 5 Involved (2) 2 1 2 2 Highly involved (3) 5 5 2 4 Chi Square = 3.85 D.F. = 9 Sig. : .92 N = 42 Although the number of terminal patients a home health agency had did not affect involvement, other factors such as the number of competing home health agencies did. This relationship is described further in the discussion section. 116 Methodological Problems Construct of size. This section describes the problems of variable measurement, instrument design and sample selection. The size of the hospice program is used as an independent measure constructed with a variable using average hospice staff, budget and patient load for the years 1981-82. The reliability of the size measure was computed using all nine variables. However, because of the large amount of missing data for the variables entering into the construct size, the size measure was computed if m program had two or more variables used to measure size. That is, if a program had a measure for items such as number of patients and staff 1981, it received a size measure. Using any two of the indicators is not as reliable as using all nine. There may be a reliability problem. Construct of goal change. The change of organizational goals was measured by two questions asking respondents to recall initial organizational goals and subsequently (one page later) to identify current goals. There was little, if any, variance between initial and current goals as reported by the respondents. Based on a review of the results it appears that respondents were unable to differentiate between goals over time because of the close proximity of the questions. Further, the question on goals was too general to use in the constructing of a measure of organizational goal change. Other questions used to construct a measure of change yielded no results. Therefore, there was no measure of goal change which could be used to construct a variable of program goals. 117 Construct of density. It was assumed that the more programs per population in a geographic area the more likely the programs were to experience competition. The program density measures constructed to measure competition fail to consider need for the service (e.g. number of cancer deaths per county) or the specific proximity of one program to another. Programs were considered in a 25 mile radius but conceivably programs within 15 minutes are more competitive than programs located within a half hour's drive. Construct of integration. Two judges were used to construct independent definitions for the construct integration. Their definition was then used to rate each of the 48 programs. While judges advised the researcher that they were "familiar" with each of the programs, the degree of familiarity varied greatly. After the analysis was completed, one judge stated that she was a bit unsure about some of the programs and was making an "educated guess." Realizing the inadequacy of two judges, attempts were made to find a third individual. Ten individuals were contacted all of whom advised the researcher they did not have adequate knowledge of all 48 hospice programs to participate in the rating. The inability to obtain additional researchers is viewed as a handicap. Professional leaders. The question involving the leaders or founders of the hospice organization asked program respondents to check from a list those types of professionals involved in the formation of the program. The question did not ask for the number of individuals in each category. This proved to be a mistake and could have dramatically changed the results. Finding out that a physician was involved is not as important as knowing whether there were one or four physicians involved. Results may have shown that a highly integrated program 118 had more than one physician involved in the formation of the program where as a non-integrated program had only one. In the redrafting of the questionnaire, this question should be revised to ask respondents for the number of individuals in each category involved in the formation of the program. Board diversity. Similar to the case of professional leaders, the question measuring board diversity did not ask for the number of individuals involved in various professions, but rather whether or not a profession was involved on the board. This is a poor measure. There was little variance among respondents. Differences may have resulted if the question asked for the number of each type of professional on the board. A board with seven physicians, three hospital administrators and three nurses, might impact hospice program development much differently than a board with one physician, one hospital administrator and one nurse. A project is being designed to examine hospice board composition more fully. The project is described in detail in the section on additional research issues. Sample selection physicians and home health agencies. Even after four revisions and several reviews there were problems with question wording on both questionnaires. In the physician survey, the questionnaire contained a typographical error which caused one question to be completely illegible. Although a letter explaining the error was sent to respondents, data were lost on 28 questionnaires. Of even greater concern is the fact that these surveys were not designed as part of the major study. It was after research on the hospice programs was underway that the researcher sought answers to questions concerning community 119 support. Because the instruments were not designed as part of the original research, statements regarding the relationship of integration to community involvement cannot be statistically supported. Two additional problems were the instrument design and sample selected. The instrument for the physician study was purposefully designed to be very brief because the researcher had been told by other investigators and members of the medical profession that a physician would not answer any questionnaire longer than one page. Interested in a high response rate (the average physician response rate is 25%, the response rate for this study was 55%) the investigator excluded some questions which would have been valuable to the study. In hindsight, this trade-off should not have been made. In the home health agency questionnaire, the researcher identified several poorly phrased questions. For example, question 4 and 5 asked the respondent whether they are a member of a hospice board or committee. The question should have asked whether anyone in the agency was a member of the board or committee. Fortunately, a second question, included for the purposes of reliability, did ask the respondent whether someone in the agency was a member of a hospice board or committee. The sample sizes were too small. Had ample resources been available it would have been preferable to sample physicians in other specialties--in addition to internal medicine, oncology and family practice--to determine their understanding and familarity with the hospice concept of care. In this way the researcher would have had data on the extent to which physicians with low terminal patient loads are involved with area hospice programs. For the home health industry, a few additional dollars would have allowed inclusion of all agencies in Michigan. This would have been a better and richer data base than a sample of half the programs. Because the sample size was 120 small, some of the statistical procedures are questionable. For example, cell sizes in chi square analyses may be too small to provide any information regarding significance of the events under question. 121 CHAPTER V DISCUSSION Earlier it was shown that hospice program integration is most strongly influenced by how a program was created and secondly by its size. This section reviews the previous findings and provides an analysis of other factors which may influence the results. Interview data and additional survey material are presented to enhance the findings. §_i_z_e_ The works of Blau (1970), Hall et al (1967), Blau and Schoenherr (1971), Zald and Ash (1966) and McCarthy (1973) were employed to describe the concept of size and its possible effects on a social movement organization. It was proposed that the larger the size of an organization, the more likely it is to become integrated. Results showed that size is significantly and positively related to integration. Size has also been shown to affect other aspects of the hospice program. A review of the 48 programs surveyed shows that as a program increased in size (e.g. gained staff and budget) other changes occurred. The program became more formalized, division of labor among employees became more refined and tasks were specified. The informal network of relationships within the hospice programs changed as the size grew. As one director noted, "We used to all know everything about the patients we handled. Now we find we spend less and less time discussing cases in depth. There are just too many of us now . . . . Our relationships seem to have changed, we have more specific duties." Hospice program membership was also impacted by size. Directors repeatedly commented on how the community had become more willing to 122 support the program once they hired staff and had an operating budget. Analysis of social movements by Olson (1968), Clark and Wilson (1961), and McCarthy and Zald.(1973) point to the importance of membership growth as an element in solidifying collective action. While a variety of factors influence group solidarity (such as shifting incentives, resources available and leadership), membership growth functions as an important determinant in the movement's long-term survival. As Judkins (1983) noted in his study of the brown lung movement, the organizers needed to recruit members and to develop a constitutency. Once the organization grew to a certain size it began to gain political clout and members' incentives changed from individual to solidaristic (for the group) to purposive (for the good of the cause). Olson proposes that the size of a group is dependent upon the benefits it is able to provide to its members. It appears, following Olson (1968, p. 50) that hospice programs are an "intermediate group in which the collective good cannot be obtained without group coordination or organization. Further no single member has sufficient incentive to provide the collective good alone." Similarly, as the hospice movement grew in size it was able to affect legislative policies which would aid in the development of more hospice programs. Changes in federal and state reimbursement policies guaranteed new hospice programs an income as well as providing them with a legitimate standing in the traditional health care system. The guarantee of program funding also allowed programs to attain some degree of size by hiring staff and caring for patients. New volunteers were recruited into the program at the same time that fundraising campaigns were increasing. As one hospice employer said, I think we're going to stay the size we are for a while. . . . At first we were small and I noticed that some of the early members were getting burned out and spending less time with the program. . . . This national legislation was a shot in the arm. As more people learned about the federal program, our phones began ringing. We had a 123 dozen new patients and at least 50 new volunteers within two months of the passage of the Medicare rules. . . . At first we enjoyed the attention and growth. After a while, we realized we'd better settle down and have put things on hold. It's odd though, the more people we get the more individuals are interested in volunteering their energies. . . . I guess we're going to have to be more careful in our volunteer screening. While size impacted the organizational structure of a hospice program, it also had an effect upon the way in which the community (consumers as well as professionals) viewed the program. "I noticed," said one nurse, "that as we added patients and received outside funds the doctors in the community took us more seriously. They were more willing to participate and listened to our concerns." Size also impacted the number of external relationships the hospice program was able to acquire. Hypothesis 1-A proposed that the larger the size of the hospice the larger the number of external relationships. Results showed no relationship between the number of external relationships and size. Yet, interviews with hospice program directors indicate that the number of relationships did in fact increase. How can this discrepancy be explained? In the survey respondents were asked to check those agencies with which their hospice had an affiliation. However, the questions did not ask for the number of affiliations in each agency group. Larger programs could have had relationships with two or more home health agencies and the data would never have appeared in the survey responses. It appears, from interviews, that as hospice programs increase in size, particularly in funding, they gain increased support and participation from the community. Thus, external relationships are expanded. As one volunteer coordinator noted, "A few agencies came to me and offered their members as volunteers. I was delighted and surprised. I just don't think this would have 124 happened a few months ago." (The hospice program recently received a grant from an area foundation.) Exchange relationships between area providers and the hospice also changed as a result of size increases. "The types of relationships we set up with area physicians and home health agencies changed as our program grew," noted one director. "As we began to hire our own staff, some of the relationships dampened." This issue is examined more fully in later pages. Size not only provided a measure for assessing program integration, but also provided some insight into changing organizational structure and function. Larger organizations appear to develop new links to the community and found acceptance from previous skeptics. As the size increased, the internal structure of many programs also changed, division of labor was increased, formal communication mechanisms were established and the organizational structure became more tightly defined. The larger the hospice organization the more it began to take on the characteristics of the traditional system. Personnel schedules were organized, tasks were structured and responsibilities were assigned. The major goals of the organization shifted and were more concerned with obtaining funding, than, with educating physicians about hospice or promoting the hospice concept of care. As Weber and Michels pointed out the goals were oriented toward "organizational maintenance," thereby meeting the presupposition for bureaucracy. Organizational Creation It was proposed that programs created by other organizations would be more likely to be integrated than those created by independent supporters. Work by Zald and Ash (1966), McCarthy (1973) and Litwak and Hylton (1966) describe the importance of interorganizational relationships in the development of new 125 SMOs. While at first it appears tautological to suggest that a hospice program created by a hospital would be more likely to be integrated than one created by individual supporters, a review of histories of several highly integrated hospice programs shows this is not the case. Of the four program histories examined, three programs were created by efforts of hospital staff, two of which terminated formal relationships with the hospital in order to become "community oriented." The hospital administrators remained on the hospice board of directors, but the hospice left the confines of the hospital, operated in a separate building, and refused to continue to take money from the hospital. As one board member stated, "We were beginning to feel that the hospital was taking us over. That's not what we wanted. I may work for the hospital, but I didn't want to start a program to benefit the hospital. I was interested in addressing a need of our community." In one case, a hospice created by a hospital decided to establish its independence, refused all support from the hospital, established its own community-based program and eventually merged with a local home health agency. The home health agency was not involved in the very early organizational stages of the hospice program, but did eventually work with the program in its development. This same program at one time applied for certification as a home health agency and was planning to compete for the same patient load with the home health agency which it is now affiliated. "There were some hard feelings," said the home health agency director. "We had worked closely with the local hospice and felt they double-crossed us. We were pleased to see that they were not going to be affiliated with the hospital and tried to work with them. When we saw them moving to compete with us, we withdrew from their board. It was open warfare. . . ." 126 The way in which an organization is created provides insights into future structures of the organization. Generally, an organization's goals are developed by initial creators. A hospital creating a hospice program is more likely to emphasize traditional medical care than an independent community-based program. However, this factor also varies depending on the geographic area, who in the hospital is involved, and the importance of the program to the overall goals of the hospital (Elling and Lee, 1972). While this research did not specifically focus on uniqueness of each program's creation, oral histories were taken from directors of six different programs in order to understand the impact organizational creation can have on integration. The interviews appear consistent with the findings; that is, programs affiliated with an existing health care organization did, in fact, exhibit characteristics of the parent organization. For example, hospice programs created by a hospital generally had a physician involved in the early planning while those which did not have hospital affiliation relied on a nurse or social worker for early planning assistance. Hospice programs created by existing institutions began discussing issues of funding earlier than those created by individuals in the community. Finally, programs created by other organizations moved more quickly to organizational tasks, such as conducting a needs assessment, than those programs which were linked to individual supporters. In the case of the latter, participants spent more time discussing the problems of the existing system and examining the poor system of treating the dying in local hospitals. In addition, the growth of hospices seems to reflect the first three stages of the Mauss typology of social movements: Phase one: inc_ipiency. This phase consists of discussions initiated by a small group of individuals concerning their experiences dealing with a 127 death within the existing health care system. The participants begin by discussing the grief associated with the death of a loved one and end with an exchange of horror stories about family members who died in a cold, isolated room in a hospital or nursing home, in pain andwithout the benefit of the warmth of family. Discussants include local clergy members, nurses, lay consumers, and a counselor. Phase One ends when the group has developed an organizational structure, formalized its goals and objectives, established regular meeting times and accepted donations from the community for out- of-pocket expenses. Phase two: coalescence. During this phase the hospice programs organization is firmer. A volunteer medical director and executive director have been recruited, community education and information sessions are underway along with active solicitation of funds and volunteer energy. A program for training volunteers is established and an assessment is undertaken to determine the need for the hospice program. Community leaders are contacted regarding donation of resources and expertise. Sometimes they are asked to serve as members of the board. Organizations such as hospitals, home health agencies and nursing homes are asked to participate in the development of the program. As one respondent noted, "In our area, we thought we were becoming one big family. The hospitals, nursing home and a home health agency were working cooperatively with our founders." Phase three: legitimation. At the end of the second phase and the beginning of the third programs begin to employ some type of paid staff. 128 Generally an executive director and part-time secretary are hired. If additional funds are left over, the program begins its search for a volunteer and patient care coordinator. Plans are made to admit patients and a pilot project may be underway; the pilot project allows the program to take a few patients on a trial run before full-scale operations are underway. A second board of directors has been selected and original organizational goals are assessed. By the end of this phase whether or not the program will become integrated and to what degree becomes clear. Mergers with existing agencies are discussed at board meetings. The role of the hospice program in relation to other health care providers is discussed, and the continued viability of the hospice program as an independent organization is evaluated. Board members ask, is there sufficient community support to sustain the organization? Can patients be serviced adequately? Is the program financially viable? Are there changes which need to be made in the organizational structure to facilitate development? If one were to speculate on a fourth phase it might be called "conflict and change." Many of the programs, after some experience with patients, begin to reassess what it is they are doing and where they want to end up. As one informant noted, Something happened. . . we began to feel different. We weren't discussing the hospice concept of care at board meetings. Instead we were discussing the day-to-day administrative operations. This had to stop. . . .It was almost as if everyone was feeling the same thing. We decided on a retreat and spent a good deal of time discussing our differences and future orientation. . . . A few people decided to resign after that but the majority of us are still struggling with new directions. 129 There is increasing evidence, as noted earlier, that programs are entering stage four, fragmentation. Conflicts are occurring among programs and between programs and external organizations. Michigan Hospice Program's Profile Based on October 1982 responses from 48 hospice programs a profile of the typical Michigan hospice program can be detailed. (See Appendix 7 for marginal totals.) A typical hospice program in Michigan is home-based in its orientation, has been incorporated since late 1981 and accepts an average of 37 patients and families per month. Patients admitted to the program have a terminal diagnosis of cancer with six months or less to live, have a primary care giver at home and have received the consent of the patient's physician. The hospice program is located in a county of between 10,000 and 250,000 inhabitants. Its annual funds total $35,000 with an average staff of two paid individuals (an executive director and a patient care coordinator) and two volunteers (a secretary and a medical director). The primary goals of the hospice program are to promote the hospice concept, improve the comfort of the dying patient and care for the patient at home. The hospice seeks community memberships, requiring members to pay a small fee. It has a board composed of one or two physicians, two hospital representatives, at least one home health agency representative, a funeral director, an area educator and lay consumers including some hospice volunteers. The hospice has affiliations with area hospitals, nursing homes, home health agencies or local health departments, and local churches. It offers the following services: basic nursing, companionship, psychological counseling, personal care, symptom control, social work, skilled nursing, bereavement 130 counseling, errand running, housekeeping, home meal preparation, transportation and education about hospice care. It took two years from the time of the first organizational meeting for the hospice program to begin accepting patients. Organizational Densi t1 Density was considered to be a function of competition. Based on the work of Hawley (Scott, 1981), it was proposed that hospice programs in close proximity would compete for patients and both would have a strong emphasis on goals which related to program integration. At the .10 level, density was significantly positively related to hospice program integration. The question regarding density asked respondents how many other hospice programs existed in the immediate area. The researcher plotted programs on a map. Two or more programs within a 25-mile radius were considered potential competitors. One important variable was excluded from this analysis: the number of home health agencies in an area which potentially provided hospice care to patients. In the southeast corner of the state, for example, a number of hospital and home health agency-based hospice programs were excluded. The primary reason for exclusion was that these institutions had not formally announced that they provide hospice care. A discussion with local providers in a separate study described later shows that both home health agencies, hospitals and in some cases physicians, see themselves in competition with the local hospice program. As one home health agency director noted, "We don't call ourselves a hospice because there isn't reimbursement. But we do provide hospice care to our patients and very much resent the start-up of this new group. We didn't mind 131 helping the hospice when it was talking about voluntary free care, but now it wants a share of the pie. . . . It's a whole different ball game." Density and competition are important variables which need further investigation with more refined measures. Hospice directors working in areas with other hospice programs describe strategies they are undertaking to ensure that they will have "their fair share for the third-party money." As one director noted," We don't really see ourselves in competition with the home health agency. They care for those people who are getting well and we care for those who are dying." When the researcher pointed out that the local home health agency had a 30% terminal patient population, the hospice director responded, "I simply don't believe it's that high. If it is, then it's about time their patients had some options. We can offer the same type of basic nursing and more." As the interview progressed, it became increasingly apparent that the differences between the local home health agency and the hospice program in terms of actual services offered was not great. The hospice planned to add new services such as financial counseling and physical therapy, but at the time the interview was conducted had not. The director of the program prided herself on how similar her staffing was to the home health agency's but also mentioned that there were "differences in the intensity of the care delivered and the type of nursing personnel employed." Organizational Goals Obershall (1973), McCarthy and Zald (1973), Tilly (1978) and others point to the importance of goals in directing and mobilizing collective action. In his account of the brown lung movement, Judkins (1983) describes the goals 132 employed by the movement organizers to gain credibility and to provide participants with some feelings of accomplishment. Similarly, organizational leaders provide employees with goals which not only state the organization's primary purpose but also provide some means by which employees can measure the organization's growth and development. For hospice programs, organizational goals reflect the philosophy of the larger social movement and also provide the hospice program with both long- and short-term objectives. In this research it was proposed that the greater the inter-organizational competition, the more likely a hospice program would be to transform its goals and tactics to facilitate integration into the larger society. The survey asked respondents to rate a series of goals noting the changes over time. While the measure showed no significant results, interviews with board members and hospice program directors suggest that goals are indeed shifting.l As one hospice director stated: We were first concerned with building a reputation. Our goal was to educate the community about the hospice philosophy and about our program. After we got started things started changing. We downplayed the education aspect and began to set fundraising goals. Every month, it seemed like we set a higher goal for ourselves. The board also began to discuss the importance of lobbying for third-party reimbursement. They wanted me to spend more of my time pursuing this goal. Looking back, I never would have believed that the goals or the organization would change so much. Directors interviewed indicated that the biggest changes in their program's goals were toward seeking outside funds and the development of reimbursement mechanisms. In the case of the latter, it can be argued that this is a strategy for integration. Four programs noted that hiring personnel was a priority goal after Reasons for this result discrepancy are two-fold. First, the measure was inadequate (see Problems section). Second, interviewees felt more restrained in their written answers but provided additional and unsolicitated information in the interviews. 133 the first year of operation planning. Again, one can see that programs becoming increasingly interested in strategies which allow them to mimic parts of the existing system. It can be argued that a desire to participate in the existing reimbursement system, hire medical care personnel and to seriously consider licensure as a home health agency (as several program directors indicated became new goals) are all manifestations of strategies toward integration. It is unfortunate that the questionnaire did not provide a mechanism for collecting goal change. The problems with this measure are discussed in a section on "methodological problems." Professional Leadership Research by Zald and Ash (1966), Gusfield (1968), Tierney (1981), McCarthy and Zald (1973), and Judkins (1983) identify the influence leadership has on social movements and their organizations. They stressed the early involvement of "outside" leaders--those who are not involved in the problem but who are able to organize others. For example, the Brown Lung Association, described by Judkins, provides an illustration of the way in which outside organizers identified the problem for workers and began organizing those affected by the disease. While many social movement theorists point to the importance of "outside" leadership, there is a need to look at what motivates organizers to become involved in a cause which does not directly affect them.1 While it is not the point of this research to understand the reasons leaders become involved in promoting the hospice concept and hospice programs, it is important to note that hospice leaders are affected by the problems raised within the movement. For an interesting discussion of social movement psychology see Hadley Cantril, The Psychology of Social Movement, New York: John Wiley and Sons, 1941. 134 Cicely Saunders and Elisabeth Kubler Ross--prominent movement advocates-- are both physicians who have expressed their frustration and outrage with patient care in the traditional system. It is interesting to note that a number of the leaders in the hospice movement have been women. The president of the National Hospice Organization is a woman physician, Josephine Magno. Many state organization directors are women. In Michigan women direct more than 95% of all hospice programs; only two programs in the state were headed by men at the time of the survey. Further, nurses, social workers and clergy comprised the majority of the early hospice founders. It was not the patients or the families of patients per se that led the hospice movement. Although they became an important force, it was a cadre of female health care professionals who pointed to the stressful, dissatisfying system under which they had to care for patients that formed the basis of the first public outcry.1 It was the physician and the hospital administrator who became the targeted enemy. As one organizer said, We all knew who was at fault. It wasn't the system in general terms, it was the physician and the hospital administration. They designed the system so that they could get the biggest profits. Damm the rest of us. If they make the most money by viewing us as a piece of meat to be carved at their will, then that's what we were going to be. . . . Now the nurses, they are more sympathetic. After all, they're also viewed as a piece of meat, a helper. It's no wonder they are dissatisfied and have decided to speak out on behalf of their patients. . . . They know more about the patient's problems than most doctors. The nurse briefs the doctor, assists with the treatment, and gets thrown a peanut for a reward while the physician makes thousands of dollars. It just isn't fair and it isn't humane. l Veblem (1931) in his theory of the leisure class argues that the role of upper and middle class women is to support social movement which improve the "welfare" of society. Usually these women serve as volunters, although in the past decade, their role has been altered by the feminist movement. 135 Leadership of the hospice program does make a difference. During observations this researcher noted differences between programs in the same area based on the leadership. Programs organized by health care professionals had a different orientation toward patient care than those organized by lay citizens. Health care professionals placed a higher emphasis on meeting standards of patient care than did lay organizers. Social class and sex of the organizers appeared to impact development but information gathered is only speculative and based on limited observations. Further study should focus on these issues. The section on "other research suggestions" identifies related topics of investigation. Board Diversity Zald (1974), Elling and Lee (1966), Riska (1976), Holloway, Artis and Freeman (1963) identify the importance of an organization's board in influencing program decisions, providing organizational linkages and obtaining community resources. Earlier it was mentioned that membership on a hospice board is not as high in terms of organizational status as is membership on a hospital board or home health agency board. It was also indicated that the board membership diversity will change over time as the board becomes more highly integrated. The greater the diversity, it was proposed, the greater the probability of integration. Results show a significant negative relationship between integration and diversity. That is, the lower the diversity the greater the integration. At first glance this result is surprising. However, a review of ten lists of original and current board members shows that as the programs adopt strategies for integration, they begin to alter the composition of the board. While early members were primarily hospice program founders, once a program hired an 136 executive director and began to review critically its board composition several changes were made. Program directors replaced the variety of lay representatives on the board of directors with a more narrow band of individuals representing the medical care and business community. The lay composition was reduced and aggressive attempts were made to recruit physician members. Members of voluntary foundations were also sought after as were other individuals of high status who could provide the program with greater prestige as well as economic resources. The board began to represent a few dominant types of memberships rather than many divergent ones. Those dominant members also appeared, in some way, to control resources important to program integration. The Status of Integration of Hospice Programs The drive for institutionalization in hospice programs is also a call for integration. In order to achieve this end, hospice organizers have taken a series of steps, including promotion of legislation to provide Medicare reimbursement for hospice patients, support from third-party insurers, and status as official providers of care for the terminally ill through licensing statutes. In general, efforts toward integration have been successful--so successful, in fact, that organizations that once shunned the idea of hospice care as being too costly are now becoming a major force in the development of new programs. According to NHO Executive Director Josephine Magno, 40% of the hospice programs developing are hospital-based. Another 20% are home health agency affiliated. Increasingly, existing providers are entering into the hospice industry. Similarly, some hospice programs are seeking alternative status as home health agencies. Hospice programs were recently granted "independent provider" status under the federal Medicare regulations. This allows the programs to receive 137 reimbursement for patient care. The hospice program is responsible for determining patient care plans, hiring appropriate personnel, etc.--in short, has a provider classification and can be considered a part of the traditional health care system. It must conform to standards and protocols, including licensed personnel responsible for patient care, if it is to receive federal funds. The success of the integration drive has been met with mixed feelings among the hospice program directors. For some, classification as a provider and entrance into the existing health care service delivery is the "source of salvation" as one director noted. Proponents, short of funds and worried about long-term program survival, view the receipt of third-party funds as beneficial. As one staff physician recounted, We thought we might go under. . . . This Medicare money will save us. We can now be a part of the larger system. We can charge appropriately and provide much needed services. I think we're on the long road to good fortune. While some applauded the passage of the bill to fund hospice care, others were deeply upset by the future. We didn't want to become involved with all these rules and regulations. We're just a small volunteer program and we wanted to keep funding without government interference.... You know, people keep saying hospice is cost effective, it saves dollars. Well, this is true. But if we become part of the larger system, we're going to have to charge more just to comply with all the regulations. Soon we won't be able to use volunteers. . . we'll be too worried about malpractice. . . . Things are changing and I don't think it's for the better. The conflict between hospice programs seeking integration and those which desire to remain outside of the traditional system continues. In Michigan a coalition of rural hospice programs has been formed and has lobbied successfully against passage of licensing rules to regulate hospice programs. Without the rules, according to one state public health official, it is "impossible to license hospice programs." An official of the coalition said its tactics were organized to 138 ensure that proposed rules did not prevent the small hospice programs from continuing. We are upset with the Michigan Hospice Organization (MHO). We don't think the organization represents the interests of the small, all-volunteer programs. When we opposed the licensing law, the state organization (MHO) lobbied for it, now we are concerned that the rules written by the state may wilpe out small volunteer programs. . . . The MHO isn't listening to our concerns. It's made up of those larger hospice programs that want regulation. . . . That's what made us decide to start our own organization. Conflicts between programs represent one area which may affect the ability of hospice programs to become integrated. Another potential problem is the divergent acceptance of hospice programs among home health agencies, physicians and hospitals, attitudes which may be due to exchange relationships which develop among the hospice program, physician and home health agency. The physician refers a patient to the hospice program and receives, in exchange for the referral, access to the hospice program patient care plan as well as to the volunteers and support staff the program can provide to his terminal patient. For some physicians, the hospice program provides a way of caring for a patient after the physician has diagnosed the case as terminal and beyond curative care. Many physicians view death of a patient as a failure (Parson, 1957; Parsons, Fox and Lidz, 1973), and helplessness is a common feeling among physicians with terminal patients. The hospice program offers an option. The physicians's time with the patient is better spent if the physician can use hospice technologies to keep the patient comfortable and also to provide a source of support for the family. 1 At the time of this writing, meetings were being held between MHO representatives and the rural hospice association to try to work out a compromise regarding the rules. According to Carolyn Fitzpatrick, MHO representative, "1 think we have something worked out. I feel confident the problems have been resolved." 139 The physician, in addition to gaining support services, also has an opportunity to be reimbursed fully for services rendered. Under new Medicare regulations, a physician can bill for 100% of the hospice visit, while costs for a home visit under the old system could not be recovered. The hospice program acts as a source of support for the patient, family and physician. A physician retains control over his patient's care plan, assists in symptom control and will soon be paid well for his or her efforts. The patient's physician is an integral part of the hospice care program, in sharp contrast to that of the home health agency. Home health agencies receive a different type of exchange from hospice programs than do physicians. For many home health agencies, the nursing services they provide form the core of a hospice program of care.1 Many home health agencies are linked in an informal arrangement with an area hospice program. In fact, a majority of community-based hospice programs receive the largest share of the patient load from health agency referrals. The advantages to home health agencies are three-fold. First, the agency receives monetary compensation for the care of the hospice patient. Second, the agency receives the benefit of volunteer support services and bereavement counseling for patients, which free nurses' time and allow them to devote more time to more profitable nursing services.1 Third, the agency may gain patients through physician referrals to a hospice program. A physician may refer a patient to a local hospice program even though the patient has no designated home health provider. 1 This will change if current Medicare regulations are passed. 140 Although the home health agency and the hospice program has a mutually beneficial exchange relationship established, the relationship between the two organizations is changing and the advantages to the home health agency are diminishing. In a few months Medicare will pay for hospice care for patients. Under the proposed rules, the hospice program will be mandated to hire its own nursing staff to make home visits. It will not be allowed to subcontract with the area home health agency. According to one hospice program director who is lobbying for change at the national level, This is essential. We hospice programs are separate providers. What we do is unique and much different from what home health agencies do. Home health agencies are designed to care for those people who are going to get better. We care for people who are not. This is a much different type of care. . . . I think we need to hire our own nurses. I don't care what you say, you can't run a program and know what's going on if you contract with other agencies. Hospice Y and Hospice Z are examples of the problems faced. They contracted with Visiting Nurse Services and are no longer able to control care for their patients. It's just not working. . . . If you're going to be another provider in the health care system, you need to establish your own program of care. Hospice is a new health care provider. . . . It's as simple as that. The recently proposed Medicare regulations will encourage home health agencies to develop hospice programs. The advantages are fourfold. First, the home health agency is capable of providing the essential core of a hospice program, home based nursing. While the hospice program must either hire or contract for nurses, the home health agency is already established and functions to provide patient care. Second, home health agency referrals from hospice programs are diminishing as hospices grow in size and begin hiring their own staff. 1 Counseling is a non-billable item. 141 Third, competition to provide hospice care is coming not only from community-based hospices, but also hospitals who are attempting to establish their own hospice programs. Fourth, agencies stand a chance of losing a referral patient to a hospice program. This is especially problematic for agencies which are not sole affiliates to area hospice programs. In Community X, for example, the hospice program is serviced by three home health agencies, each of which is concerned about maintaining a relationship with the patient referred to the hospice. Under the new regulations, hospitals will also be encouraged to develop hospice programs. The Medicare regulations require access to an inpatient facility and a home care program. Since hospitals are inpatient facilities, this first requirement is met, and an increasing number of hospitals are developing home care programs. As one administrator noted, "We started our program so that we could offer the patient a complex of services. We didn't like the idea of shifting the patient's care plan. . . ." In other words, the hospital can regain control over the patient's care, which has two advantages for the hospital. It can diversify its cost centers and increase its revenue, and it gains community loyalty by caring greater health needs of the patients. One area hospital, upon offering a home care service, held an open house for the community and distributed brochures which identified the hospital as "your home away from home." While the hospital retains control over the patient, it can also use the hospice as a way of maximizing efficient patient use of hospital facilities. Hospitals are paid if beds are filled. They are able to profit more from individuals with treatable disease than they are from terminally ill individuals who are on a maintenance regime. A hospital can use a hospice to rotate patients out of a bed which can be more profitably used by an acute patient. 142 The federal Medicare regulations provide the hospice program with some degree of autonomy. Reimbursement allows programs to establish their own cadre of hospice professionals able to treat patients in their homes. However, the proposed rules also reduce the probability of coalition building between hospices and home health agencies. This benefits those hospice programs, and home health agencies which want to be independent and permits hospitals a free entry into the field of hospice care. A system of cooperating, interdependent organizations is thus proscribed by the proposed rules. A hospice program, according to several area hospital administrators, is not to date a "money maker"; however, it does offer the hospital good public relations. Hospice denotes a "caring, nurturing attitude," said one administrator. We really don't profit from the hospice, in fact, now we're losing money. We do, however, get a good image from the program. It's like our home birth program. The community loved it and patients asked physicians to refer them to our hospital. We had some referrals last year from physicians who were on staff at another hospital. Their patients demanded a service only we offered. . . . While hospitals claim that they hospice program has not been a "moneymaker," once the federal requirements are passed, hospice will certainly pay for itself. Home-based care will be reimbursed as well as physician home visits. Hospitals will not be reimbursed for any aggressive care under the hospice program, e.g. surgery. However, if a dying patient needs some type of surgery to ease the pain, the patient maybe shifted off the hospice plan. This is not to imply that the hospital can arbitrarily shift cost centers to get the most funds from the Medicare payment system. However, the rules do contain a provision allowing the patient to be taken off the hospice program if the disease can be cured because of some new treatment, or if a procedure is required to relieve the discomfort of the patient in the last stages. 143 In Michigan, there is no restriction on the development of hospices for at least the remainder of the year because licensing rules have not been passed and there is a moritorium on certificate-of—need requirements. The moritorium, according to one legislator, was passed to encourage the development of small community-based programs. Based on the data, the number of community-based programs is dwindling and the number of institutionally affiliated programs is growing. This suggests that hospitals are beginning to dominate the field of hospice development and that the larger hospice programs are becoming more bureaucratically oriented. What will the future hold? Probably there will be a greater number of home health agency and hospital-based hospice programs with concomitant reductions in community-based hospice programs. Physician involvement in hospice will continue to grow now that hospice has gained a strong foothold in achieving legitimacy as a new form of health care for the terminally ill. The recognition of hospice by third-party payers has increased the credibility of such programs among providers and will make them more attractive in the medical care marketplace. As hospice programs become increasingly institutionally affiliated, their philosophy of care may remain the same, but program elements will undoubtedly change. Volunteers will play a lesser role in caring for the terminal patient. Counseling, spiritual services and bereavement care will be handled according to legislated standards of care. The proposed Medicare rules require hospice programs to provide bereavement services, but contain no provision for reimbursement of these services. Without funds, many hospice programs may provide only minimum bereavement and counseling services. In time, this unique form of hospice care may be eliminated completely. 144 The physician will play a dominant role in the care of the patient as the involvement of home health agencies is reduced. Increasingly, hospice programs will hire their own nursing personnel. Some hospice programs will become home health agencies to increase their financial base of support. Hospital-based programs generally do not contract with local home health agencies for care. As the number of hospital-based home health programs increases, hospitals will reduce the number of patients they refer to home health agencies. As medical professionals point to the importance and need for a specialty in care for the terminally ill, they will also require places in which to practice. The care for the terminal patient will likely become a recognized specialty in both medicine and nursing which will affect hospice as a social movement. For physicians, it may well become a subspecialty of oncology or geriatrics.1 The nursing profession is currently discussing the development of a specialty in care for the dying. Continuing nursing education classes in care for the terminally ill have been offered and some nursing programs now list specific coursework for caring for hospice patients. A 1980 Michigan Nurses Association position paper calls for the direction of hospice nursing care by a "registered professional nurse with experience and education in the care of the terminally ill" (p. 11). As the supply of physicians grows thereby encouraging entry into specialties such as geriatrics,1 and as reimbursement for hospice care increases thereby providing monetary incentives for hospice treatment,2 the devel0pment of specialties in care for the terminally ill will become increasingly promoted. The development of hospice care as a specialty will undoubtedly not only provide legitimacy to the movement but also escalate program development. For l Geriatrics is not an American Medical Association recognized specialty. However, plans are underway to make it a specialty and some medical schools are offering special courses in geriatrics as part of training in family practice and internal medicine. 145 example, as more nurses graduate with training in care for the terminally ill, they will need places in which to practice their skills. In a sense, the development of this specialty will take on a character of its own. As Bucher and Strauss (1961, p. 326) pointed out in their discussion of specialization in the medical profession, as specialties begin to develop they look out for themselves and proclaim unique missions. They issue a statement of the contribution that the specialty, and it alone, can make in a total scheme of values and, frequently, with it an argument to show why it is peculiarly fitted for this task. The statement of mission tends to take a rhetorical form, probably because it arises in the context of a battle for recognition and institutional status . . . . Research on hospice program deveIOpment is only beginning. Because it is a relatively new social movement, more information needs to be collected. Time based data will show if the trends predicted above occur. l The 1980 nursing supply totals 1.3 million, up 340,000 from 1970. (Johnson, 1982). The 1980 physician supply totals 467,679, a 40 percent increase from 1970 (GMENAC, 1980). The Michigan Nurses Association 1980 position paper on hospice recommends, "nurses through the professional association should establish criteria and guidelines for reimbursement of nursing care in hospice programs as a model for third party payers" (p. 11). 146 CHAPTER VI CONCLUSIONS Chapter I described the concept of hospice and its divergence from the traditional health care system. Hospice programs are designed to treat emotional, spiritual and physical needs of dying patients, and focus on palliative and not curative care. Hospitals, and other traditional health care organizations, are structured to focus primarily or the patient's physical needs and are designed to help the patient "get better." It was noted that although hospice programs are not new, their current form developed in the early 19703 as an outgrowth of the larger death and dignity movement. Chapters I and 11 examined the forces that led to the development of hospice programs, including the growing concern over consumer health rights, medical care costs, use of medical technology and fear of cancer. Chapter II combined organizational and social movement literature to identify propositions which could be used to understand the concept of social movement organizations and their integration into the traditional health care system. Integration, the independent measure, was constructed by outside experts and was selected as the basis for this research because hospice programs--similar to other types of health care reform organizations such as home birth programs--were designed by the founders to work cooperatively with the existing system, to offer consumers choices for types of care and to eventually become an integral part of the existing system. Integration was a goal identified by at least a dozen hospice program directors interviewed. As one director noted "we wanted to be a part of the system. . . . This is the only way we could survive and offer dying patients a choice. Eventually we hoped the system would change and adopt our goals." 147 The data showed the way in which the hospice was created and the size of the program were the two most important factors influencing its integration. The dissertation examined other factors such as program density, professional leadership, board diversity and external affiliations. These factors proved to be of little value in predicting integration. The hypotheses proposed in Chapter II are based primarily upon the work by Zald and Ash (1966) predicting the changes social movement organizations undergo in order to survive over time. The data in this dissertation were not longitudinal and hospice programs are so new that it was impossible to predict survival. However, integration is certainly one strategy used to achieve survival (Selznick, 1953). Therefore, an organization's ability to integrate is related directly to its potential for long-term survival. Zald and Ash (1966) noted that size was an important aspect of organizational survival. While their concept of size related to organizational memberships, the concept of size was borrowed from organizational literature (Blau, 1962) and is related to items such as budget and staff. It was shown that a significant positive relationship existed between a hospice program's size and integration, that is, larger programs are more likely to ad0pt integration strategies than smaller programs. Thus, it can be argued that the larger organizations are also more likely to survive over time than are the smaller organizations. Zald and Ash (1966) also noted that social movement organizations created by other organizations are more likely to "go out of existence following success" than social movement organizations with their own linkages to individual supporters. They noted that organizations created by existing organizations would be more likely to be "becalmed when the organizations goals are achieved and that this would lead to the demise of the organization." The social a.0: 148 movement organizations described by Zald and Ash in 1966, however, are goal- specific (for example the NAACP in its push for school desegration). The hospice movement, on the other hand, is designed not just to change a part of the system, but to actually offer an on-going alternative. Therefore, their linkage with an already legitimated entity will enhance efforts toward success in offering that service or integration. It is here where the Zald-Ash hypotheses are modified. Individual links are seen as less integrationist and counterproductive for long-term survival. It was proposed (Chapter II) that those hospices created by other organizations, such as hospitals or home health organizations, would have a higher chance of integration than organizations created by individual supporters. The one problem in this analysis is the inability of the research to measure whether the original goals of the hospice program changed over time as a result of its close affiliation with providers in traditional health care system. This question needs to be addressed in further research, Has the movement and the programs which represent the movement been "becalmed?" Is it undergoing demise as Zald and Ash would predict? As one board member said, "We only take paying patients now. We used to take anyone, but you can't run a charity system. The hospitals learned that a long time ago. . . . Hospice programs were originally founded by a bunch of do-gooders. Well, they certainly didn't know much about running and maintaining a program did they?" Zald and Ash (1966) noted that external affiliations were another important indicator of long term success. They noted linkages could lead to coalition building and mergers which might enhance organizational survival. In this dissertation, it was argued that external affiliations would indeed influence integration. Although the measures were poor, the material collected on home health agencies and physicians showed that a series of exchange relationships had 149 been established that provided the hospice program with an entry and necessary purpose within the traditional system. These exchange relationships, however, created competitive problems among home health agencies, hospice programs and hospitals with respect to control and access to patients. Increasingly, home health agencies are viewing hospice programs as competitors and are building up strategies to hinder future hospice expansion. As one home health agency director noted, "The state is such that we are going to apply for hospice status. We've been refering our patients to the local hospice program, but I'll be damned if I keep it up. . . . They want our expertise and our economic base. . . . They started out as a volunteer group. They wanted to work along side of us. Now they want third party reimbursement. . . . It seems as if they're changing their tune." Zald and Ash (1966) discuss goal change and goal fragmentation within social movement organizations. The early history presented in Chapters I and 11 provides some background as to the intent of early and future founders. Early founders wanted the hospice movement to "wake up" existing providers, and as one founder noted, "get the doctors and nurses off their butts to provide the kind of care dying patients needed." As the movement progressed, attempts were made to keep hospice programs separated from the existing system, To give hospice programs "a separate provider status." The debate over developing a cooperative relationship with existing providers and becoming more competitive with existing providers caused fragmentation within the hospice movement and, as Zald and Ash predicted, led to a time of goal reassessment. In Michigan, hospice program directors debated over the development of state regulatory standards. Program directors desiring greater integration and a close liaison with existing providers referred to themselves as "volunteer" programs. They emphasized their supportive role for terminal patients. They were opposed to 150 any state control. Program directors favoring separate provider status on the other hand, argued for the build-up of patient care staff and emphasized the importance of having a distinct role in the existing system. Zald and Ash contend that leadership and board composition also affect the ability of social movement organization to change. A hypothesis stating the greater the board diversity, the more likely the program's goals would be to reflect integration was tested. Similarly, the greater the number of leaders from the traditional system (e.g. physicians and nurses), the more likely the program would become integrated. The data did not support this hypothesis. Integration is a useful concept for understanding the relationship of a new social movement organization to the larger society but unfortunately it is also a vague concept which needs further modification. It is hard to determine just which interactions between the larger health care system and hospice programs may be co—opting and may be integrating. Perhaps we should follow the lead of H. Simon (1962) and K. Weick (1976) and view different parts of an organization and varied types of interactions. Viewing organizations as "loosely coupled systems" Simon (1962) and Weick (1976) argue that most organizations do not function according to very rationalized plans, goals and organizational charts. Rather, they are run by people and have parts which prove "intractable to analysis through rational assumptions" (Weick, 1976, p. 2). Weick uses the term "loosely coupled system" to convey "the image that coupled events are responsive, but that each event also preserves its own identity and some evidence of its physical or logical separateness." (1976, p. 3). The concept of separateness allows the researcher to examine how subunits of an organization may function according to prescribed goals while others may break down because of external pressures. In the case of hospice programs, we can see 151 the relationship between consulting physicians, the hospice director, the patient care coordinator (generally a nurse) and the volunteer coordinator. Each of these individuals may be tied to one another by organizational policy but may in fact operate in a very independent and separate way. The clearest example of separateness can be seen in the interaction between a patient care coordinator and a physician. Both individuals are responsible for the physical comfort of a terminally ill patient, yet communication between the two may be limited and the responsibility for the patient may be divided so that very little interaction needs to occur. In an analysis of loosely coupled systems, the researcher is responsible for identifying the elements, noting their attachments and the boundaries of the elements coupled. The advantages to studying hospice from this perspective are numerous. First, loose coupling allows some portions of an organization to persist. Second, these systems preserve independent sensing elements and therefore "understand their environment better than tightly coupled systems." Third, adaptation to the larger system is easier. Fourth, it allows for a greater number of mutations and permutations than the tighter system. Fifth, if there is a breakdown in one portion of the system, the breakdown is sealed off and does not affect other portions of the organization. Sixth, it provides greater room for self-determination. Seventh, it is less expensive to run than tightly coupled organizations since it takes less time and money to coordinate people. An implied theme in Weick's analysis is that people tend to overrationalize their activities and attribute greater meaning and predictability to them. Hospice programs claim to have fairly concise organizational charts--that is, those organizations which are established and have accepted patients--however, observation of those claims reveals that the relationships are not always in concert with the organizational scheme. For example, I was advised that the 152 nurses in Program X called the physician at least once a week to discuss the patient's change and medications necessary. However, nurses generally called the physician as needed. Sometimes this was several times a week or after 4 or more weeks. The scheduled "check-in" often did not occur. Much of the work done by hospice programs is fairly diffuse and difficult to use in exacting a specific organizational structure. From the Simon and Weick model we can critically examine the subparts of a hospice program and try to understand their linkages. Instead of creating a measure of size for the entire program, for example, we can view the number of people (size of a group) working to perform specific tasks. Other types of analyses include examining linkages between hospice professionals and lay providers, among hospice professionals and between hospice program resources and those of other area agencies. Viewing hospice programs as loosely coupled systems may prove more beneficial in further research than organizational analyses which try to fit the hospice program into a particular mode thereby ignoring many of the distinctive features. 153 CHAPTER VII POLICY IMPLICATIONS AND SUGGESTIONS FOR FURTHER RESEARCH Studies on hospice program development and change over time are just beginning. While this study analyzed factors affecting integration of hospice programs into the traditional health care system, there are other aspects of this movement which warrant investigation. This section discusses policy implications and options for further research including: board composition, quality of patient care, costs benefits, socio-economic factors, and death and the family. Policy Implications Hospice programs are a much needed addition to our existing medical care system. They address a broadly defined social need: the humane treatment of terminally ill patients. The development of these programs throughout the United States has raised the consciousness of health care providers, consumers and third-party reimbursers. It has provided a forum around which the public can rally to alter the current health care delivery system. It has been described by some as the single biggest cost savings approach to health care in the past decade. The new Medicare regulations will have both positive and negative impacts on the future of hospice programs. Positively, it has provided small programs with some hope of surviving long after community funds dry up. It has also provided national and statewide legitimation for for the continued development of hospice programs and has encouraged the involvement of the medical community. 154 Negatively, the new regulations separate hospice care as a distinct form of patient care rather than encouraging integration. The regulations maintain the dominance of the existing system, which is something early advocates opposed. Physicians continue to serve as the "gatekeeper" to hospice care. Because of their lack of training in the care and treatment of the dying, the ignorance of physicians in this area may slow down or even stop gains made by hospice advocates in their effort to care for the dying. Several nurses interviewed complained that physicians are still too cautious in prescribing pain medications and have "a long way to go" in understanding the hospice philosophy. As one nurse said, "They still don't know what's going on. They are too locked into their old ways and are doubtful of any new concepts. It's the nurse that plays the biggest role in the care of the dying. She should have at least the same authority as she does in the current home health system." The nurse continued to explain that under home health regulations, the physician supervises the home health agency but it is the nurse who really assists and cares for the patient. She expressed her displeasure at the fact that physicians are encouraged to make home visits under the hospice regulations because they receive 100% reimbursement. "It will be just like the hospital is now," she said. "The physician will stop in for a few minutes, bill $40 or $50 and leave orders for the nurse. I think this is a rip-off in the rules." The proposed regulations encourage hospice program independence and discourage program interdependencies. Programs are required to have their own nursing services rather than contracting with existing home health agencies. Access to an inpatient unit is also required and some hospice programs are considering building their own instead of contracting with a local hospital, 155 reasoning that hospital space isn't properly organized to meet the needs of the hospice. Further, she noted, "having our own inpatient unit will allow us to control patient inpatient days more carefully." If the big push behind hospice is cost containment, then it seems most logical to have the programs intimately linked to existing health 'care organizations to prevent duplication of services. In the long run, the projected cost savings may be lowered. The proposed regulations also provide physicians with 100% reimbursement for home visits to hospice patients. Depending on the final wording, this provision could open a Pandora's box and escalate the cost of hospice care. Recall, the early founders envisioned a rather small, community—based service with minimal medical intervention. The current programs are becoming increasingly dominated by the medical profession and are expanding rapidly in size and in type of services offered, including legal counseling, funeral service assistance, dietary counseling, vocational therapy, physical therapy, and a host of other services which duplicate those of existing agencies. Another important policy concern is the use and development of bereavement technologies. At the heart of the hospice concept is the use of bereavement counseling as a form of mental illness prevention. Because bereavement service for terminal patients and their families is a fairly new field, there are few data which evaluate or describe the most effective types of bereavement care. For some hospice programs, bereavement consists of phone calls and mailed cards to the family shortly after the death, and at six- and twelve-month intervals, requesting the family to call the hospice if they have problems. Other programs send social workers or volunteer staff to the home and work closely with the family for the year following the patient's death. 156 As programs become more integrated there appears to be greater concentration on aids to controlling pain in the patient and less on other types of services such as bereavement. As one hospital administrator developing a hospice program noted, "We have to make this program solvent. In order to do so we are concentrating our efforts on the services that the third party will reimburse. Now we do provide bereavement therapy, but it's pretty limited. I doubt whether we'll expand that service in the next few months but we're trying to improve it." Hospice programs are becoming increasingly structured and less flexible. The Joint Commission on Hospital Accreditation has been developing standards for hospice care. The Michigan Department of Public Health has written rules on hospice program development. These and other attempts are designed to standardize hospice care by providing mandates for staffing levels, staffing division of labor, requirements of boards of directors (governing bodies), types of services which must be offered and so on. While these standards are designed to protect patients and ensure that dying patients have good quality care, they also require the development of certain types of services and staff which cannot be met by small, all-volunteer community-based programs. In an earlier chapter, the conflicts between small, all-volunteer programs and larger programs with paid staff were discussed. While the conflicts in Michigan seem to be addressed, new programs deveIOping will be discouraged by the plethora of rules and regulations which they will have to address. Prior to the passage of the Medicare regulations, most of the hospice programs developing were small, community based organizations. In the past 18 months, the new programs have been institutionally linked. This trend has been happening across the country (Magno, 1982). 157 The federal regulations combined with state regulations are encouraging the development of more sophisticated types of hospice programs which are similar, in many ways, to programs existing in the traditional system. As one rural hospice administrator noted, "The regulations are taking away the flexibility of the smaller programs. They are trying to convert us and make sure we all look alike. Well, we're not going to buy into it. If we have to we'll change our name and stop calling our program a hospice but we're not going to buy into the system they want us to." In sum, hospice has provided an impetus for alterations in the traditional medical system. Hospitals are more conscious of caring for the dying. Physicians are more willing to try varied approaches to pain control and are able to call for assistance from the community in caring for the terminally ill. The hospice movement has had a positive effect in raising societal consciousness and bringing about change. As Mauss (1971) noted, there is a reciprocal interaction between a movement and its host society. The movement changes some aspect of the tradiational institution and the society in the process of adopting some aspects of a movement "tames" the movement's goals. . . . reformist movements tend to be tamed or absorbed through accomodation in which both sides make compromises and come to terms with the other's position. . . . (Mauss, 1971, p. 60) In the process of becoming integrated into the traditional system hospice proponents have altered their organizational structure to reflect those of the existing system, have given up some of the earlier flexibility they sought and have altered their long-range goals. Patients are taken, in a majority of programs, only if they have the means to pay. Volunteers who are not trained in nursing or related health areas generally do not participate in caring for the patient. Functions which could be performed by volunteers are done by professionals if there is some reimbursement for those procedures. This is, 158 program directors admit, good business sense. However, it has also shifted the orientation of the original hospice idealists. Programs, in their requirement that patients entering are able to pay for service, have limited their market to generally white, middle- and upper-class patients who can afford their services. While this issue is discussed in the following section, it warrants mention as a matter of concern for policymakers. The hospice movement in the process of shifting its goals has reached out to a particular segment of our society. Lacking the abiliuty to pay for services, economically disadvantaged individuals--generally minorities--will be unable to enter the hospice system. Although there is a push at the national level to lobby for Medicaid reimbursement for hospice care for this population, there is no current system in place to treat these patients. Further Research Board composition. Legally, boards of directors are created in order to ensure continuity in management of organizations and to fix a locus of responsiblity for the control of independent organizations. In addition to these two functions, boards play another important role. They aid in the accomplishment of "desirable ends beyond the capabilities of individuals" by bringing important resources to the organization (Zald, 1969, p. 173). By studying board composition of hospice programs, it is possible to understand the types of resources brought to aid the organization in its growth and change over time. For example, a program may ask a lawyer to serve in order to assist in drafting bylaws and incorporating the program. In addition to resources, board members are an important source of power to the organization. Zald (1969) identifies two sources of board power: internal and external. Internal power refers to the board's ability to control the on-going 159 operations of the organization. Organizations which have boards that perform a managerial function operate much differently than those with boards which are strictly advisory. External power refers to the resources the board members can bring to the organization to benefit its future growth. For example, a bank president may arrange a long-term loan for a developing hospice so that it can hire staff and begin its operations. Riska (1975) noted that a study of boards of directors of hospitals is an indirect method of studying the community power structure. While hospice board membership may not represent community power, changes in the organization as it become integrated into the health care delivery system may be highly correlated with increased status of board members. For example, a hospice program in its early stages may have a board comprised of persons whose chief credential is interest in the hospice concept. As the program develops, board members change so that founders are replaced with members who have important resources, e.g. a hospital social worker is replaced by the hospital administrator. Finally, studies of demographic characteristics of hospice board members will enhance sociological knowledge about the interface between organizational development and board composition. Will hospice board members be drawn from members of higher socioeconomic reaches as the programs become increasingly integrated? Do societal role definitions associated with sex still influence board member participation as Babchuk, Marsey and Gordon (1960) noted? Are women more likely to be on boards of smaller and low-prestige organizations than on the boards of larger voluntary agencies such as hospitals and universities? It there a relationship between individual socioeconomic status and board membership? 160 These are just some of the research suggestions for this area. An in-depth study of board membership among a sample of hospice board members may add important insights to sociological literature on organizational board of directors. Socio-economic factors in health care. Hollingshead and Redlich in Social Class and Mental Illness (1958) described the relationship between social status and treatment for mental illness. The facilities, services rendered, and type of medical care were all influenced by the socio-status of a patient in the community. Antonovsky (1967), Goldscheider (1971) and Mechanic (1978) described socio-demographic effects on mortality and morbidity, noting that non-whites of lower classes die at a younger age and of different diseases than their white counterparts. Sudnow (1967) in his description of death and the social worth of corpses noted the "strong relationship between the age, social backgrounds, and perceived moral character of the patients and the amount of effort which is made to attempt revival when 'clinical death signs' are detected." The findings of these and other researchers regarding relationship between the socio-economic status of a patient and their care appear to hold true in the area of hospice care. By and large, dying patients in hospice programs are white, middle class and have some college education. Studies by Vincent Mor, Sylvia Sherwood, Howard Birnbaum, et al (1982) indicate that nationally hospice patients are more than 65 years of age, white (89%), Protestant (41.1%), married (57.4%), have a median income of $10,000 yearly, have at least a high school diploma, and are dying of cancer. There is no sex difference among hospice patients. The findings of the national studies raise questions regarding the development of hospice as a program of dying for a certain class of the population. Questions for future research include: (1) Have other health care 161 programs, such as home birth, been class-related? (2) Are there racial differences in care for the dying that render hospice programs unnecessary for non-white populations? (3) What factors motivate the use or non-use of hospice and other forms of health care by socio-economic groups? Do these differences exist in other countries (such as England, Sweden, France) with nationalized health services? These suggestions for research may illuminate the specific problem of the social inequality which seems to be present in the treatment of the dying and may suggest alternative solutions for diminishing such inequalities. Quality of Patient Care "Quality of care" is an elusive term. Many writers have tried to define it without success (Donabedian, 1966). Hospice program directors and advocates boast of the "quality of life for the dying" as part of the hospice program's goals. According to these individuals, quality of care for the terminally ill consists of several factors, including freedom from pain, ability to live at home with support of family and friends, assistance in dealing with death and the fear of death. These goals have been identified because of the belief among hospice advocates that the care of the dying in acute care hospitals is inappropriate and that hospital services should be limited to patients being actively treated for a curable illness. A review of the literature on hospice program development shows no assessment of the quality of care received by patients in a hospice program. There is a wide range of material which describes the services a patient should receive but none which specifies whether or not these services are necessary in order to reach the goals of the program. Further, there has been no in-depth assessment of a h08pice program to determine patient outcomes. This is 162 especially difficult since the outcome is death and it is very hard to ask a person-~unless you can some how communicate with his or her spirit--how he or she felt about the care given. Some research is currently being conducted on surviving family members which may shed some light on the subject. It is suggested that a participant-observer investigation be considered. An investigator could participate in the hospice patient care by serving as a volunteer. He or she would have first-hand insights about the care given to the patient, may be able to draw inferences about the patient's satisfaction with the services, and ultimately make a concrete assessment of the concept "quality of care." An investigator may be able to observe first hand, for example if a patient is comfortable dying at home or would prefer to stay in an inpatient facility but is not comfortable asking for a dispensation from the hospice program. The researcher would also be in a position to record the intensive nature of the hospice program and address questions policymakers are asking regarding the benefits of hospice care over traditional health care. Cost-Benefit Analysis Hospice promoters claim that costs for caring for terminal patients in hospice programs are far lower than costs of caring for that same patient in the traditional health care system. Studies by Carney (1981), Berger-Friedman (1982), Kassakian et al (1979), Widmer et al (1978), and Creek (1982) suggest that hospice care is indeed cheaper than traditional hospital care. Some of these studies, however, also show that hospice care is more expensive than home health care and, in some cases, skilled nursing home care. Hospice advocates contend that there is an overall cost savings of the hospice program since most terminal patients spend their last few weeks in a hospital because the family is unable to care for them at home.1 With the 163 support of hospice personnel, 8 patient is able to remain in his or her home until death and the family receives the support it needs to assist the patient. Since data on hospice costs have been collected during the past two years--Health Care Financing Administration (HCF A) demonstration projects and work by individual researchers are the primary data sources--it is important to conduct other assessments after Medicare regulations are in effect and additional third-party payers offer hospice as a covered benefit. Will costs remain the same? What will be the new exchange relationships established between hospice programs and other health care providers? Will these new relationships affect the costs for care? Will the degree of integration (high, moderate, or none) influence costs of care? Will services change as Medicare and other third party insurers pay for hospice care? How does this interface with the questions of quality of care? These are just some of the questions which should be considered in future research endeavors. 1 A recent study by Blue Cross/Blue Shield, funded by the Department of Health and Human Services shows that the average cost for health care for a terminally ill cancer patient during his or her last six months of life is almost $16,000. Of the $16,000, 78 percent is for hospital expenditures, 16 percent is for physician's costs and less than one percent is for home care or skilled nursing facilities. 164 Death and the family. The focus of modern medical care has been the patient and the institution with a goal of curing the patient (Lerner, 1970). The vast majority of health care resources are allocated along these dimensions. In 1981, for example, hospital care costs totalled $118 billion or 46.3 percent of all health care expenditures (American Medical Association, 1982). The pivotal role of home health care for dying patients is an important aspect of the hospice program. A complex of social, familial and residential changes in the past several decades have militated against dying at home. The change of locus of physician care from home to hospital, with the resultant decrease of availability of home medical care, has created a tendency to move seriously ill and dying patients into hospital or nursing home settings. In addition, home care requires the willingness and ability of a family member or members to become primary care-giver(s), with the physician, visiting nurse and other personnel as back-up support. The absence of a consistent and competent family agent makes home care virtually impossible (Krank, 1978). The movement back to the home as a place for birth and death may alter family structure. Support systems, previously determined through institutional relationships, will be developed through extended family ties. There may be a reassessment of the family structure as members negotiate who will be the primary care-giver(s). The development of the hospice concept may provide an impetus for a reassessment of our family system. If people are successful and fulfilled in the process of caring for their loved ones at home, they may also begin to reassess other systems (such as education) which place the major responsibility for the development of a child outside the home. The hospice movement provides opportunities for further research in this area. It allows us to examine among other issues the changing family role in the Parsonian sick role analysis, the ability of the family to participate in hospice 165 care requirements, the long—term changes in family life styles and relationships as a result of caring for dying family members, the interactions among patients, families and health care providers, and the changes in attitudes and beliefs about death. Because the hospice movement is so new, it provides researchers with a wealth of issues to investigate. The five areas described above are a few examples of the type of research in which sociologists can engage. Further work in the area of social movement organization growth, decay and change; integration and co-optation of social movements; division of labor in the treatment of the dying; professionalization of health care providers; and the re- involvement of the church in the provision of health care1 are other examples of ideas for future research. 1 Church involvement in the care for the dying is specifically sanctioned in the proposed Medicare regulations which includes "spiritual services" as a form of counseling (Section 418.88). Counseling services are mandated under the proposed regulations. Perlstadt, in a conversation with the researcher, suggested that hospice may, in fact, be an expression of a "return to religion." He noted, "We've had different stages of social expression in our society. In the 19303 people 'dropped out' of society and became boxcar burns, in the 19403 people 'dropped out' because of World War II, in the 19503 you had the bohemians, in the 19603 you had political 'dropouts,' in the 19703 there was communal sexual orientation, in the 19803 there are the religious dropouts (e.g. Moonies). This is an example of the return to religion, return to the spiritual. You can see this spiritual movement in the development of hospice programs. Just look at the influence of the clergy in hospice development. It's a way the clergy are gaining control over people's lives. . . in a sense taking it away from the medical establishment." 166 Glossary Bereavement care: The period of time during which a person or group of people experiences, responds emotionally to, and adjusts to the loss of another person through death. Home health agency: An agency which coordinates nursing and related health care services to patients in their homes. Hospice: A centrally administered program of palliative and supportive services which provides physical, psychological, social and spiritual care for dying persons and their families. Services are provided by a medically supervised interdisciplinary team of professionals and volunteers. Hospice services are available in both the home and an in—patient setting. Home care is provided on a part-time, intermittent, regularly scheduled, and round-the- clock basis. Bereavement services are available to the family. Admission to a hospice program of care is on the basis of patient and family need (National Hospice Organization, Hospice Standards Draft #6) Types of hospice programs (National Hospice Organization, Final Report, September 1979) 1. Hospital Based a. Acute care hospital with centralized palliative care or hospice unit: Separate unit within a general hospital with the staff and beds designated for the provision of care for the dying. 2. 167 b. Acute care hospital with consultant program: Specially designated interdisciplinary hospice team or existing staff of social workers, psychologists, and others provide services to hospice patients dispersed throughout the general hospital. c. Hospital-based home care program: The hospice team may be separate from the home care staff or may be members of the home care staff with special training in hospice care techniques. Hospital-affiliated free-standing A separate facility with all beds and staff assigned to providing care to the dying patient. The facility is located adjacent to the hospital or in the community but is owned by the hospital. (Independent) free-standigq A separate facility with all beds and staff assigned to providing care to the dying patient. It is an independent economic entity governed by its own administrative staff and board. Home care (hospice without walls) A program which provides and coordinates hospice services in the home, but does not own or operate an in-patient facility. The program is administratively and economically autonomous. Hospice team members are available for services in the home 24 hours a day. Extended care facility or nursing home A nursing home or extended care facility program which has converted beds or established a separate unit for the provision of hospice care. Staff is trained in the provision of hospice care. The facility is governed by its own board and administrative staff. 168 Interdisciplinary health care team: A group consisting of a physician, nurse, social worker, clergy, volunteer and members of related disciplines who interrelate in an effective working relationship enabling the provision of hospice services to patients and families. 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The Theory of Social and Economic Organization, Glencoe, Illinois: The Free Press, 1957. Wood, James R. "Unanticipated Consequences of Organized Coalitions: Ecumenical Cooperation and Civil Rights Policy," Social Forces 50:512-519. 190 Zald, Mayer N. and Robert Ash. "On the Social Control of Industries," Social Forces 57:79-102, September 1978. ------ . "Organizational Control Structures in Five Correctional Institutions," in Human Service Organizations (eds.) Yeheskel Hasenfeld and Richard A. English, Ann Arbor, Michigan: University of Michigan Press, 1974. ------ . "The Power and Functions of Boards of Directors: A Theoretical Synthesis," in Human Service Organizations (eds.) Yeheskel Hasenfeld and Richard A. English, Ann Arbor, Michigan: University of Michigan Press, 1974. ------- "Social Movement Organizations: Growth, Decay and Change," in Studies in Social Movements (ed.) Barry McLaughlin, New York: The Free Press, 1966. ------ and John D. McCarthy (eds.). The Dynamics of Social Movements, Cambridge, Massachusetts: Winthrop Publishers, 1979. Zola, Irving Kenneth. "Medicine as an Institution of Social Control," The Sociological Review 20:487-504, November 1972. Zorza, Victor and Rosemary Zorza. "Conquering the Cruelties of Cancers: A Young Woman Leaves Life Happily in the Arms of an English Hospice," The State Journal, Febraury 15, 1978. - ----- . "Hospice Care: It's All About Living," Washington Post, October 16, 1978. Zurcher, Louis A. "Functional Marginality: Dynamics of Poverty Intervention Organizations," Social Science Quarterly 48:411-421, December 1967. Zurcher, Louis A. and Russell L. Curtis. "A Comparative Analysis of Propositions Describing Social Movement Organizations," The Sociological Quarterly 14:175-188, Spring 1973. 191 INTERVIEWS Arango, Julia. Volunteer Coordinator, Cottage Hospital Hospice, Grosse Pointe, Michigan. Interview, May 22, 1982. Baldwin, Joan. Volunteer Coordinator, Hospice of Jackson, Jackson, Michigan. Interview, October 12, 1982. Ballew, Ann. Executive Director, Hospice of Washtenaw, Ann Arbor, Michigan. Interview, October 19, 1982. Cunningham, Jo. Bereavement Volunteer Coordinator, Good Samaritan Hospice, Battle Creek, Michigan. Interview, March 29, 1983. Eldred, Jill. Executive Director, Kalamazoo Visiting Nurses Association, Saginaw, Michigan. Interview, October 5, 1982. Erhardt, Pat. Director of Bereavement, Hospice of Jackson, Jackson, Michigan. Interview, October 12, 1982. Eurich, Maggie. Secretary, Hospice of Saginaw, Saginaw, Michigan. Interview, May 28, 1982. Fitzpatrick, Carolyn. Executive Director, Good Samaritan Hospice, Battle Creek, Michigan. Interviews, May 28, 1982 and January 24, 1983. Green, Barbara. Former President of board, Hospice of Lansing, Lansing, Michigan. Interview, September 11, 1982. Haan, Mary. Michigan Right to Life Representative, Michigan Hospice Organization Board of Directors, East Lansing, Michigan. Interview, March 13, 1983. Halporn, Roberta. The Center, Brooklyn, New York. Interview, November 8, 1982. Haman, Ann. Former Executive Director, Hospice of Lansing, Lansing, Michigan. Interview, January 11, 1982. Hamilton, Rosemary. Former Vice President, Michigan Right to Life; Cofounder Michigan Hospice Organization, East Lansing, Michigan. Interview, March 13, 1983. Hamm, Susan. Greater Lansing Visiting Nurse Services, Lansing, Michigan. Interview, September 1, 1982. Hoetzel-Seipo, Lilo. Director of Michigan Home Health Agency, Traverse City, Michigan. Interview in Lansing, Michigan, October 14, 1982. Hollers, Kay. Director, Visiting Nurses Association of Lansing, and member Hospice of Lansing Board, Lansing, Michigan. Interview, September 13, 1982. 192 Hollister, Dave. State Legislator, Lansing Area and Sponsor of the State Hospice Licensing Law, Lansing, Michigan. Interview, June 21, 1982. Hufton, Willford. President of the Hospice of Saginaw Board, Saginaw, Michigan. Interview, October 5, 1982. Ivy, Susan. Patient Care Coordinator, Hospice of Washtenaw, Ann Arbor, Michigan. Interview, October 10, 1982. Kamjathy, Nancy. Hurley Hospital Hospice Director, Flint, Michigan. Interview, September 12, 1982. Lammy, Sandra. Director, Bay Valley Home Health Agency, Flint, Michigan. Interview, May 12, 1982. Lattanzi, Marsha. Bereavement Specialist, Boulder County Hospice, Boulder Colorado. Interview in Mt. Pleasant, Michigan, at Central Michigan University Hospice Conference, April 15, 1982. Leaver, William. Hospital Administrator, Board Member, Grand Traverse Area Hospice, Traverse City, Michigan. Interview in Lansing, August 19, 1982. Levine, Pete. Community Hospice Director, Staff, Greater Flint Area Hospital Assembly, Flint, Michigan. Interview, April 18, 1982. Lewis, Albert. Rabbi, Founder and Former President, Hospice of Greater Grand Rapids. Interview in Detroit, December 23, 1982. Luxon, Marian. President, Michigan Hospice Association, Lansing, Michigan. Interviews, September 15, 1981; December 2, 1981; February 28, 1982; April, 1982; May 28, 1982; June 8, 1982; October 6, 1982. Madden, Margaret. Director, Hospice of Greater Kalamazoo. Interview, January 24, 1983. Magno, Josephine. Director, National Hospice Organization. Interview at Blue Water Hospice Conference, Port Huron, Michigan, April 25, 1982. Markstrom, Keith. Executive Director, Hospice of Saginaw Board, Saginaw, Michigan. Interview, October 5, 1982. May, Margaret. Director of Nursing, Hospice of Jackson, Jackson, Michigan. Interview, October 12, 1982. McNamara, Paul. Administrator, Clinton Memorial Hospital, St. Johns, Michigan. Interview, December 18, 1982. McNiven, Margaret. Executive Director, Hospice of Lansing, Lansing, Michigan. Interviews, July 20, 1982; October 27, 1982. McQuistion, Peg. Executive Director, Hospice of Southeast Michigan, Southfield, Michigan. Interview, April 16, 1982. 193 Meredith, Richard. Executive Director, Hospice of Shiawassee, Owosso, Michigan. Interview in Gaylord, Michigan, November 30, 1982. Naylor, Dave. Former Executive Director, Hospice of Saginaw Board, Saginaw, Michigan. Interview in Lansing, Michigan, September 17, 1982. Neidzwieck, Mary. Director, Hospice of the North, Gaylord, Michigan. Interview, September 13, 1982. Opferman, James. Secretary, Blue Water Hospice Board, Port Huron, Michigan. Interview, September 13, 1982. O'Shaughnessy, Charles. Director, Medical Services, Hospice of Southeast Michigan, Southfield, Michigan. Interview, November 30, 1982. Patrick, Josie. Patient Care Coordinator and Board Member, Lake Superior Hospice, Marquette, Michigan. Interview, July 7, 1982. Penner, Dorothy. Executive Director, Visiting Nurses Association of Midland, Saginaw, Michigan. Interview, October 5, 1982. Ramm, Marilyn. Director of Home Health Services, Bay County Health Department, Saginaw, Michigan. Interview, October 5, 1982. Rombach, Marge. Nurse Supervisor, Tri-County Home Health Agency, Detroit, Michigan. Interview in Gaylord, Michigan, November 18, 1982. Rosen, Jay. Director of Planning, Office of Health and Medical Affairs, State of Michigan, Department of Management and Budget, Lansing, Michigan. Interview, October 13, 1982. Ryan, Barbara. Patient Care Coordinator, Good Samaritan Hospice, Battle Creek, Michigan. Interview, March 29, 1983. Seely, Sondra. Executive Director, Cottage Hospital Hospice, Grosse Pointe, Michigan. Interview, May 22, 1982. Schultz, Jill. Director, Visiting Nurses Association of Saginaw, Saginaw, Michigan. Interview, October 5, 1982. Stratz, Sister Augusta. Executive Director, Northern Michigan Hospice Conference. Interviews in Lansing, Michigan, September 13, 1982; September 26, 1982. Udow, Marianne. Manager, Blue Cross Reimbursement Policy, Blue Cross of Michigan, Detroit, Michigan. Interviews, October 27, 1981; November 12, 1982. Wainstock, Susan. Founder and Board Member, Hospice of Central Michigan, Mt. Pleasant, Michigan. Interview, November 18, 1982. Zeigler, Karl. President, Michigan Hospice Association Board, Member Hospice of Southeast Michigan Board. Interview in Lansing, Michigan, October 29, 1981. 194 Zieger, Allen. President, Hospice of Southeast Michigan Board, Southfield, Michigan. Interview in Farmington Hills, Michigan, October 27, 1982. Zerbel, Thomas. Former President, Bay de Noc Hospice, Escabana, Michigan. Interview, July 6, 1982. Zimmerman, Kris. Home Care Coordinator, Good Samaritan Hospice, Battle Creek, Michigan, Interview, March 29, 1983. APPENDICES APPENDIX 1 Tax: of the Tax Ecapity and Fiscal Responsibility Act of 1982 Eur ll—Cnsxccs m Bavcrrrs. Pncmurrs. AND Exnocusavr assassin: cannot or rcocnu cursors“ ' 5:: 12!. For provisions providing csrtain employees of the United States and instrumentalitm thereof with entitlement to.haspital in- surance bans/its under part A of title XVIII of the Social Security Act. us section 276' of this Act. Home: CAR! 5:: 332. (al’l) Section 1811 of the Social Security Act is amended by rating out "and home health scruicss" and inserting tn lisu them.’ "norm health services. and has icc tut-c". (:‘I Ssction 71d)!” of the Rail Retirement Act of 1.971 is anusa'cc' by irscrtin "hospice cars. " after "home health serving". (of!) Sccttor: film) of the Social Security Act is amended by 889.4811: out "and" at the and of paragraph (2). by striking out the ps-.'.~.‘.' at the and of paragraph (3) and insertinl in lieu thcrco/ “.' and". and by oddzn; alter paragraph (3) the following new paro- “in? “(U in licu of certain other benefits. hospice care with rcspcct to the individual during up to two periods of” days each and our subssqucnt period of :0 days with mpsct to which the indi- vidual mass: on election under subsection (dill. ". . 1:. Section 1522 of such Act is further amended by inserting after subrcctton (cl the followin new subsection: "'dll) Pay-men: under tits part may be mad: for hospice cars pro- vided with respect to an individual only during turo periods of .90 ' dc»: coal: and one subsequent period of .90 days during the individ- ual s liftams and only. with respect to each such period. if the indi- czs'sal makes an election under this paragraph to rsccwc hospice can under this part provided by. or under arrangements made by. a . nit-altar hospice program instead of certain other benefits under tats tit c ‘ “31.4.! £scspt as provided in subporagrophs (B) and (Cl and except in such accptlonal and unusual circumstances as the Seas- srfx may p-ot-za'c. if an individual makes such an election for a prior! with "196:! to a particular hospice program the individual shall be dccmcd to have waived all rights to have payment made under this title with respect to— "(:l hospice care provided by another hospicspro ram (other than una’cr arranpcmcnts made by the particular osplcs pro- gram) during the period. and Emu &Whinn:y Comments Summary: This provision wands Median covcrogc to federal cmployccs and molta that subject to Social SCMU)‘ hospital insurance tascs. Etlcctrvc Date: January 1. I983. Implications: This provision sacks to pro'vids o more cqm’toblr sinno'on for individuals in the private sector who pay FICA tascs. Prior to this new law, federal employees could secure jobs in the private sector [or a short period of am: after retirement and thus be eligible for Mcdicors coverage. To the men: that this is true. hospitals may not apericncc significantly incrsascd numbers of Medicare patients: however. the increased revenue: from these new tam should help the financial condition of the Hospital Insurance Trust Fund. Summary: Bcncficiarics o! the Medics" Part A program may opt to receive hospice care instead of certain other benefits associated with murmur of terminal canccr. Th: bsncfit period consists o! no periods of 90 days and one period of30 days during the individuals lifetime. When on individual elects a particular hospicc propam. hc waivcs his right to care under other hospice programs and to othcr services near-tally provided under the Medicare program. His physician '3 services will still be covered. however. An individual is entitlsd to one change in hospice program clccu‘on in and! period withoaafory'sitin; benefits. If. during a 90-day period. on individual elects hospice cars and than changes his mind. no payment will be made for the balance of the period. To be eligible for hospicc cars. the individuals physician and the medical dircaor a] sh: hospice program must certify that the individual is terminally ill (i.e.. has a life expectancy ofsis months or last) and mus: prepare a written plan for that individuals core. Reimbursement trill be mods to a hospice program based on reasonable cost. Bereavement caunssllng ml! not be on allowable cost l'mn. u ...o_-- _ Text of the Tax Equity and Fiscal Responsibilitj Act of 1982 "(ill services furnished during the period that are determined (in accordance with guidelines of the Secretary) to be- - "(ll related to the treatment of the individual 's condition with respect to which a diagnosis of terminal illness has been made or .. _ "(Ill equivalent to (or duplicative o9 hospice care: except that clause (ii) shall not apply to physicians' services fur- nished by the individual's attending physician (if not an employee of the hospice program) or to other than services provided by (or under arrangemenu mode by) the hospice program. ”(8) After an individual mahes such an election with respect to a .00- o' Sir-day period. the individual may revohe the election during the period. in which case- ”(il the revocation shall act as a waiver of the right to have payment made under this part for any hospice care benefits for the remaining time in such period and {for purposes of subset» tion (all) and subparograph (All the individual shall be deerzéd todhave been provided such benefits during such entire ri an ”(ii! the individual may at any time after the revocation :- ecute a new election for a subsequent period. if the individual otherwise is entitled to hospice care benefits with respect to such a period "(C/An individual may. once in each such period. change the has- pi'ce program with respect to which the election is made and such change shall not be considered a revocation of an election under subparaeraph (3). "(DJ or urposes of this title. an individual's election with re- spect to a ospice program shall no longer be considered to be in effect with respect to that hospice rogram after the date the indi- vidual's revocation or change of e etion with respect to that etec- tion tahes effect. ”. ' ' _ (a!!! Section lilac) of the Social Security Act is amended“ iv striking out "and” at the end of ragraph (6‘). by striking out tne period a: the end a.’ paragraph ) and inserti in lieu thereof “.- aric‘". and by inserting after paragraph (7) the fillowing new para- rap}; ”(5} in the case of hospice care provided an individual- ‘YAl‘t‘l in the first 93-da period— . “(1) the individual s attending physician-(as aef'ined in section JIdllddXJA’BL’. and "(11) the medical director (or physician rriernberaf the interdisciplinary group aescr'ibed _in section lit)!dd)‘§x’3)l of the hospice program providing (or ar- ranging )or,‘ the care. . _ each certi/y. no: later than two days after hospice care is initiated. that the individual is terminally ill (as defined in section léb‘lldd 31AM and . . . “(til in a subsecuent 90- or JO-daéperiod. the medical di- rector or physician described in c use (in!) recerttftq at the [beginning of the period that the individual is terminal- ls-i l: ' “(3) a written plan for providing hosioe care with re- spect to such individual has been estab ished foe/ore such care is provided by. or under arrangements made by. that hospice program) and is periodically reviewed by the. inat- vidual's attending physician and by the medical director (and the interdisciplinary group described in section lbt‘lt’a’dx’i’l'Bll a,’ the hospice program." and "(C/ such care is being or was provided pursuant to such plan of care. . . _ . lift/i) Section lilt’b) of such Act is amended .by inserting “(other than a hospice program providing hospice care)' after “The amount paid to any provider of servtca". Ernst & Whinnay Comments The amount of payment made to a hospice program for each pattern will be 'capped' -' according to the region in which it is located. The 'cap amount’ will be determined based on a national average of Medicare per capita expenditure amounts. which is then adjusted for regional dificrences in the cost a] care. For each region. the 'cap amount" is equal to ‘0‘}. a] the regional average. adjusted by the medical care expenditure component of the CPI. Hospice sen-ices include the following: a. nursing care. b. physical and occupational therapy, speech-language pathology. a. medical social serin'ces. d. home health aide services. e. medical supplies (including drugs and biologicals). [. physician'servim. g. short-term inpatiau care. not to exceed five oonseaitive days. and h. counseling for the terminally ill A hospice program is a public or private organican'on which: a. Makes theseservicas available on a24- hour basis: 1. Provides the services identified above in the patient's home. and on an inpatient and outpatient basis: 2. Provides nursing. medlcalsoatd' services. physician union and counseling directly; 3. Assures the Secretary that the total number of inpatiast days of care provided Medicare hospice beneficiaries . in any Ill-month period does not exceed 20% of the total days ofhospia care a’un‘ng that l2-month penod; l. Pros-ides bereavement counseling for family members. b. Has an interdisciplinary group of personnel. c. Maintains central clinics! records on all patients. I» -J Text olthe Tex Equity and Fiscal Responsibility Act ol1982 (SI Section Jill of such Act is further amended by adding at the end the following new subsection; . "Povment for Hospice Care ”(ih'll Subject to the limitation under paragraph (.Iand the provi- sions of section IL'JtaXJI. the amount paid to a hospice program uith resbeet to hospice care for uhich papment mas be made under this part shall be an amount equal to the costs uzhieh are reason- able and related to the cost of p’ociding hospice care or uhich are based on such other tests of reasonabieness as the Secretarn mas pre- scribe in regulations (includinp those autho 'ised under section Jffitil‘ls'st. accept that no payment me) be [or bereavement mun seitn; and no reimbursement mm be made for other counseling sen» ices tincludtn; nutritional ant: dietan counseling} as separate serv- ices 72:9“ The amount o’ pennant made under this part for hospice care provided b\ to' under arrans-ements made W a hospice pro- pram located in a "flat: (as defined b the SecretanI for an ac- cc-.. ntin; vea r new not exceed the 'cap amount 'for the region for the vear teomputed under subparapraph (BI: multiplied b the number of medicare beneficiaries in the hospice program in that year (deter- mined under subparagraph (CII. (BI For purposes of subparapraph (A). the 'cap amount' for a region [or a year is computed. as foliou's. “’iiI The Secretary, using records a," the propam under this title. shall identifs individuals (or a representative sample of such individual.»— "(1) tiho died during the base period (as defined in clause (i I). "(III with respect to whom the primary cause of death was cancer. and “(411/ who, durir n; the sis-month period preceding death were provided bene,tts unaer this title. "'tiiI t "he Secretary shall determine a national average medi- care per capita expenditure amount bv (II determining (or esti- mating) the amount ofpcs-ments made under this title saith re- saeet to serui’ces provided to individuals identified in clause (i) durin; the sis months before death and (III dividing such amount ofpcyments b) the number ot’sueh individuals. ‘liiu The Secretary. usin; the best available data. shall then compute a repional average medicare per captia expenditure amount for each region. b~ adjusting the national average medicare per capita expenditure amount (computed under clause (ii/I to re, tee. the relative difference between that region 's average cost of delivering health care and the national average cost of delivering health care. “MI The 'cap amount 'for a region for an accounting year is 10 percent 0’ the regional average determined under clause tiiiI for that upon. increased or decreased by the same percentage as the percentage increase or decrease. respectively. in the medi cal care aspenditure categow of the earuurner price index for all urban consumers (0.5 city average). publuhed bv the Bureau of Labor Statistics. from the fourth month of the base period to the fifth month o’the accounting par. "tit For purposes of this subparat'reph. the term ‘base pet-iad' means the most recent pe o’ 12' months (ending betore the aate proposed regulations are first issued to earn out this para- (raphr for uhich the Secretan determines he has sufficient data to mate the determinations required under clauses In th rough (titI. 3S Ernst d: Whinncy Comments d. Does not discontinue needed care based an inability to pay. c. Uses volunteers. f. ls licensed under applicable state law. Beneficiaries receiving hospice care will be required to pay coinsurance in the amount of: l. Tne iesser of” or 5% of the charge per prescription. 2. fire home health copoyment amoimt. beginning with the 20:): Visit for home health aide sen-sea. 3. Five percent of the reasomble cost of respite care. not to exceed the cost a] the inpatient hospital deduaible. Current demonstration praparns relating to . , hospice care will be continued unc: December 31. I983. Prior to January I. 1986 the Secretary will submit a report to Congrad an the experience of hospice care reimbursement of the past two years. Hospices in operation prior to Januar'} I. I 9 5 mm be granted exceptions to certain limitations if the Secretoqs deems a necessary. Refs-lotions regarding hospice we. standards of aualification and MHO!" will be developed by September I. 198. Effective Date: Applies to hospice care provided on or after January 1. 1554 and prior to September 30. 1986. Estimated Savings Impact on the Federal Budget: FiscalTears 1 1953 )9“ I985 S Um) 3 (Im) 3 l6m Since this provision does not because effectiv. until January I. 1981. the estimated increases outlays in fiscal years 1953 and IFS-I rcprcsest the costs associated with develops-.3 the methodoiop- and start-up. Tne eseimated stamps in fiscal rear 1955 will rust: at beneficiaries opt for ho. piee care in lieu of costlier inpatient sari-ices. Text of the Tax Equity and Fiscal Responsibility Act of 1982 “(CI For purposes of subparograph (A). the 'number of medicare beneficiaries ‘ in a has ice program in an accounting year is. equal to the number of indivi uoLs who have made an election under subsec- tion It!) with respect to the hospice program and have been provided hospice care by (or under arrangements made by) the hospice pro. pram under this part in the accounting year. such number reduced to reflect the proportion of hospice care that each such individual was provided in a previous or subseqvent accounting year or under a plan of care established by another hospice mgr-am". (3) Section lilac.) of such Act is amends. by adding at the end therec,’ the following neu'panagrapl'.‘ "(SI .‘~'otu:itr.standing any other provision of this title. the Secre- tc'y shall designate the agency or organisation which has entered into an agreement under this section to perform functions under such an agreement with respect to each hospice prop-arr. cceot that with respect to a hospice program which is a subdivision of a pro- vide.’ o,’ servicu (and such hospice program and provider of services are under common controlJ due regara shall be given to the agency or organisation which performs the functions under this section for the rovio'er of services. ". (aI‘lI Section 156104 of the Social SecurityAct is amended by in- sertin "hospice program. " after ”home health agency. ". (2) etion IMJtu-XJI of such Act is amended by stalking out "or home health agency" and by inserting in lieu thereof "home health agency. or hospice program '. .3) Section £651 of such Act is further amended by adding at the end the following new subsectiorv ”Hospice Care; Hospice Program "(ddI'lI The term 'haspice care' means the following items and services provided to a terminally ill individual by, or by others under arrangements made by. a hospice program under a written plan (for providing such care to such 'ndividualI established and periodically reviewed by the individual's attending physician and by the medical director (and by the interdisciplinary group deo scribed in paragraph (178)) of the program— ”(AI nut-sir care prov' ’ or under the supervision of a registered pro essionol nurse. h"$BI physical or occupational therapy or speech-language poo t a on. "CI medical social services under the direction of a physi. ion. ”(DIt’iI services of a home health aide who has successfully completed a training program approved by the Secretary and (it) homemahc.’ services. ”(£1 medical supplies (including drugs and biologicalsI and the use of medical appliances. while under such a plan. "(Fl physicians ' services. “(GI short-term inpatient care (including both respite care and procedures necessary for pain control and acute and chron- ie symptom management) in an inpatient facility meeting such conditions as the Secretary determines to be appropriate to pro- vide such care. but such respite care may be provided only or. an intermsttent. nonroutinc. and occasional basis and may not be provided consecutively over longer than five days. and "ll-l! covrseling (including dietary counseling! icith rapes: to carehof the terminally ill individual and adjustment to his deat The care and services described in subaragrophs (A) and (Dr may be provided or. a L’s-hour. continuous basis only during periods of crests (meeting criteria establushed by the Secretary) and only as nee- essa-y to maintain the terminalty ill individual at home. Ernst 8; Whinney Comments Implications: Currently. certain hospitals. nursing homes and home health agencies are reimbursed when they provide hospice-type services. frat-idea such as these may scant to (murder establishing qualified hospice propane: if there is a need for hospice servica in their area. To be reimbursed. providers mustfile a separate cost report. ' Recognition of the benefits of hospice care to many terminally ill patients has prompted tni‘: section of the law. Nevertheless. organisations providing this type afar: . must consider severe: limitations. Among the more tmpOHMh-tnpmcfll care for Medicare hospice beneficiaries cannot eseaed 20% of total hospice days; reimbursement is at only We of the regional average cast of care (odiuited by the CPI); and the benefit is limited to a total of 210 days. Hospica will have to carefully monitor case to avoid acceding the caps. Hospitals may experience some decline in utilisation if mart Medicare beneficiaries opt for hospice care. Puh“ .c Acts — Appetite: :3 2:9 Oczoaec 17. :4? 9 STATE OF MICHIGAN BOTH LSGlSLATURE REGULAR SESSlGR OF 1980 lat-advent: by Reps. Hollis-tea. Forbes. Bryant Spaaiok Mose-sign Biz-khnltes. Cowoy. Bee's Banned. Mes-v C. Bros-T. Stsbeoow. Mom's Hood. 1:. Thorns H. Brown. Run Hat-cisoa. Joe Young. Jr. Hears. Trice. Pacific. Evans. 565?." iom'oouiiaa. Iondsii Chm BetteL Doap'i'iio. Ci'itoea. Campbell. Niel: Snitch Ma’s'atnoe. Hedda. O'Neil “elbord Hogans-is. Brocheetotu Bahamian. Cream and RNOL LED HOUSE BILL No. 4909 ' AX AC7 to amend seadaa 23106 of Act No. 355 a! the Public Acts of 1978. entitled ‘9; set to protect and promote the pubu’c heath; to codifir. revise. consolidate. ain't-3y. and acid to the inn raising :a public been; to provide la: the prevention and canal of diseases soc disabizitias: to provide for the dutih‘cso aa' ..sc‘. "citation. read... “an. assoc-Lag. sad antennae: of personal. ens-‘coazicatsl and othec health sec-shes and sass-i:- inc: to cceste a: condone. sod pica-go: the powers and duties at. dean-=53 boards. ca:.':_-.ss:o..s. councils. con—mines. task forces. said axis: ageoaies: to prescibe the powccs and duties of eaves-.zcatal caches and oil-Seals; to train: ac-spsa'oas. lscz'u'des. and agendas time; the public health; to promote the e. ‘ficnea: soc! «canonical dc'ziva-y of health case sci-Vices. to pros-ice for do i; erect-ate udlL. “sac: of health we faculties and services. and to provide la: the eiosuce of botpasis o: cc ..salz‘a'saoa c. bat-pink ac sessions: to :zrow‘ae far the collection and use of clsa sad marzipan: to aces-ice for the 31:3: e: o. crops-:5: to provide carcass annexes. frat: liabilzcv: to provide for penalties and . remedies: sad to repeal certs:- seas and par: of s 3.“ being section “~"‘ M20106 oi the Coccpiied Laws of 1570. and to add pm 224. i l The People of the State at Michigan enacc: i Sec-ice l. Semen $9205 of Act No. 365 of the Public he: at “57$. being secciaa 25.20205 al the; Caz-pi e-a' Laws of 2570. is mended and per. 214 is added to end as follows: Sec. 2306.. (1) ’Healza tacit} at scar-5" .a-r-.,,: as provided i: section 23115.. means: (a) fish-ulna: cpecsa‘aa ac ads nice-d acci‘ie e=cc;c=cy case sconce. ('c} C‘azsezi labor-racy. lc‘: Caz-:3 2:55:22 cace eEaaz'.“a-. .3) : :eeczsadzc. ; iv. rpm} cant-dent feasts. .‘e; 3'5... “ sustenance accusation. ft, 5::- .ie 5:: the sged. (ME' .-Vd’ (j) A facilitv or agents, listed it: subdivisions (a) to (h) located in a cotteet'iooal institutiot. or a unis-etsm. coiiege. o: othe: educatio. al institution. (2‘ ’Health maimet- .anee organiean'on' means a health fac’lm' or agenu' that: n) Delivers health maintenance set-vices to entolle-es since: the tests c! its health niaititenahee cot... -ac'. e: e..i\ ot thsouph arrangements int}. affiliated ptos'idcts. (h‘. ls responsible for the as aiia‘niht). acoessihilm. and quality o.‘ the health canteeahee traces ptm'ioed. (3) 'Home lot the aged' means a supervise-:3 personal ere .acllin'. ethos that a hotel adult foster can isothty. hospita‘. nursing home. or county medical care iacs'li'}. t..at provioes too- ..hoasd. and supervised petsohal can to 7 o: more unrelated noacahsient. indisscufis £2 yeus oi aee ot cities. (4% 'Hospice' them a health are ptopatn which ptowces a coo. c'tnatec set of setvioa noticed at oczne ct u: outpatie: : o: institutional songs {or iodine-sag slice-.:.; hoax: a disease o: conch-ho: nth a t tress-J prognosis. :5 'I'iospstal‘ means a iac’litv offering hip atietiu W633"! case. and sct‘dces for ohm-static: claposis. an: arm e neat-heat of 2: inc'mcual with a medics. 83.";CL ohstettsc. chrnci- ct teha'niitt at-ve co; .."aon tee-.:- .:g the dill) direction ot rupees-mo: ot’ a physics; a ’ne tetan does not include a hospstai licezsed ct cpetaiec h} the oepa.'-.:he:t of mental health. (6‘ '3‘ .ospt't Ll lcnptc: czte init‘ new a mars-ta: use lain“; owned and operated b3 and as pct ot'a hospt’.a'. pros-tits; orgahteed nth-r‘s; we and special neat-then: to 7 at those uhae‘aatec tacti- .dua‘as suit "" .:.; o: ICCOVLWJ‘ “.:. 22:3th .:.-3'. or ital-“.14“. - PART 214. HOSPICZS Sec 21401. Ardcle 1 con: aihs geeetal cef‘hitions ahé pianclpies of construction applicable to all ardeles in this code and 7a.. 201 contaios dettnit'iors appaicahie to this par. Set-.2 4-.. (l) A hospice shall he lieased undo: th'a ardcie. 2; 'chspice shall not he used to desc'i'oe ot ref: to a health gimp-:2. Sac-3:33 o: agency unless that psopa: ‘ac‘lia' o: agecq' is licensed as a hospice luv the éepctthent node.- this arade. (3" A hospital. nuts-b; home. house for the aget’. counts nselical ca:e ladity o. as oth: health facflit} o: agent-v which ope-ates _a hospice shall be licensed as a hospice unde.’ this uncle. (4)13 a hospice provides .:patieht se.-Vices which: meet the definitiou o. a hospital hunch; ho=e :‘o: the aget'. eotzt'v zed: cal caee facility. o: as" othct health ‘ac-Lsts ot agency the hospice shall ohtai: a separate 2..--..se as :ecuatec' use: this uncle in: that hospial. nu. '52; hotne. hcthe lot the agei conga ”3“: case t'azs't}. e: othe: health. ‘ -'._":‘-\- ota 31:1. (5‘. This put shall not tern: any aettsttv of a health :‘aciitq- o: agency 2' the ars'vitv is pet-hissed cad: the home held b\' that health facility or agency. {5212' sepcate lie- use is secured made: this set-Joe. the deem-=2 ..t shall conduct ins-poetic: and same the request licezses conch-testis. Sec. 214.13. We came. opentot. and governs: hoc'y o.’ a hospice licensee undet this article: (a) Ate tespotnihle lot all phases o! the operation of a hospice and in: the quality of case no scvices tehdzec' 'ew the hospice. (h Shall eoopetate with the dang-taut ih the chic-cement 0! this part. and tequi'e tthe plant-tans .nc o'he: $3633ng wos‘ic‘h; i: the hospice no {or who: a hceose o: se.;scatio: is secured he ext-cath- iteesec' ct segmeteé. 5“; 21415 (1) A hospice shall ptovioe a yoga: o.‘ p.a:tieé and continuous hospice case. the aedieal components of u hieh shall be under the ism-acts ot' a pin-aim. -:Hospioe case shall wrists ot' a coottiinatec' set of sets-ices tenéeeec' at home at is. out- P.atiee-it o: test-.tut: has setticcs for individual: sttt'ier'h; .‘tom a éuease ot contittioo W:' .h a sexual proposu. The castes: tics: of se.—v. oe-s sha'.’ astute that the :ahts et :5 a :atiect .‘to': 1 se. “3:; to math: “"2 be teeth-.:.: :shee' utth a ==:=u:: c'sst': pact. and chsoezztzutt- of can nospiee seniees shall a:':; £3. :5. .3“; ;.- 3:39;: a.‘. total. a:.:' :;-.-.tua.' :eecs of in: Lie—"Uld'éi... mc' st. a... he den-Ses' t: =ee: the .. . 9: ,-.—_; :5 :‘:_e :‘wzfiuals :mi‘) ::tou;: .he pet-.3; e: "' _-:.esi ahc' heteaw-e --. .:ieee hes-pee "fix. ,3; . ‘fcxfiétf thee-.:.: a cottons: : ':.'.e:::s:-.',=..:'.a-_ tea: uhieh :4} ' :. ~- _ -:.-u :e se.-rice: :.-=..-.;.=' by: -===‘ wine": I?! Sec. 2141?. An individual shall not he admitted to or retained tor care by a hospice unless the L'oCMOUIJ ‘3 ““9“”: from a disease or condition With a terminal prognosis. An individual shall be considered to have a disease or condinoo with a terminal prognosis ii. in the opinion of a physician. the individuals death is anticipated within 6 tnonths alter the date of admission to the hospice. The fact that a peeaon lives beyond a E-tnonth or less prognosis shall not disquahn the person from command hospice care. See. 21419. (I) Not later than 1 yea: alter the effective date o! this past. the department shal‘ submit for a public hearing proposed rules necessary to iratpletnent and administer this part. (2‘. The rules promulgated pursuant to subsection '1) shall not establish standards related to the, credentials of an individual pros-riding care in a hospice program. whether as an employee of a prop-ant or enhance: in a prop-asst. unless. nth respect to the type of cue the indin’duz’ would provide in the hospice prom a license or other credential is secured by law to: an individual providing that care. Sec. 21423. Notwithstanding any othe: province of this so; all hospices shall he esenipt .. 2 license tees for .“i yea.-s after the I- t nospiee is liceue-d undet this asp'cle. Sec. 2142‘. This past shall expire 7 years after its effective date. // ssh/,4. gradgzé’ Geri: ot' the Home of Representatives. Sec-eras? oi the Senate. Approved Governor. ' ‘. Sec.2 '2.l (1) Before issuance of a nursing home license under this artis-.le tne owner. operator.us gm .‘min: hods of the nursing home shall use a bond sutli a surety approved hs the department if the nursing home elects to set up patient trust lunds. The bond shall insure the slqsnrtrnent for the benefit of the . patients. The bond shall be conditioned that the applicant shall do all of the lullnss inc: \ 1.... ) ' ‘J _ pruence of patients. (a) Hold separately and in trust all patient funds deposited with the applicant. (b) Administer the funds on behalf of the patient in the manner directed by the dmositor. (c) Bender a true and complete account to the patient. the‘dcpositor. and the department when requested. id) Account for the funds reeeised. expended. and held on hand on termination of the deposit. (2) The bond shall be in an amount equal to not less than l- 1/4 time the average balance of patient funds held during the pres inus sear. The department mas require an additional bond. or permit the filing of a bond in a loss er amount if the department determines a change tn the av eracc balance has counted or may occur. An applicant for a new license shall file abond an an amount which the department estimates as l-l/t times the average amount of patient funds Which the applicant. upon the issuance of the licease. is likely to hold during the first year of operation. See. 2l731. A licensee of a nursing home operated for prolit is considered to be the consumer. and not hhoem retailer. of the tangible personal property purchased and used or consumed in the operation of the e. . . g ‘h Sec. 21733 (I) A nursing home licensed under this article shall adopt a poliq regulates; the width; of tobacco on the nurs'ot; home premises. (2) A nursing home policy gos eming smoking shall at a minimum provide that: (a) Upon admission each patient or person responsible for the patient's admission shall be asked i! there is a preference for placement with smokers or nonsmokers. .. (b) Smoking bs patients shall be restricted to private rooms. rooms shared with other smokers only. or othe designated smoking areas (e) Visitors shall not be permitted to smoke in rooms or w ards occupied by patients who do not smoke. (d) Visitors shall be pe-mitted to smoke only hi dais-stated areas. _ (e) Staff shall be permitted to smoke in designated areas onl). ' (f) Staff shall not he permitted to smoke hi patients' rooms or while performing then duets 'm the (3) Eating areas shall have sections for smokers and nonsmokers. (h) Cigarettes. cigars. and pipe tobacco shall :dot be sold or dispensed within the licensd facfity acept . as provided for by the owner or cos eming (l) A sign indicating that smoking is prohibited in the facility except in designated areas shallbeposted a: each entrance to the facility. Sadr designated smoking area shall be posted as such by sign. ~- (3) A nursing home licensed undu this article shall retain a copy of the smoking polio sshich will be ‘ available to the public upon request. ‘ - APPENDIX 3 -e'.. . ' . PART 221. CERTIFICATES pr .stco Sec. 22101. (1) For purposes of this part. the words and phrases defined m sections 22102 to 22)“ have the meanings ascriaed to them in those sections. (2) In addition. article 1 contains general definitions and pn'nciples of construction applicable to all ' articles in this code. (3) The definitions in part 3)) do not apply to this part. . Sec. 22102. (1) 'Addition' means adding patient rooms or beds. ancillary service areas. or other . accommodations to a health facility. (2) 'Capltal erpendinsre' means an expenditure for a single project which exceeds SlSO. 000m include; cost of construction. eoeinecring. and find equipment sshieh under generally accepted accounting principles is not properls chargeable as an expense of operation. It includes a lease or comparable arrangement by or on behalf 0! a facilirs by rahich a pason obtains a health facnliry or licensed part than! or enuipment for a facilits. the expenditure for sshich would hase beat considered a capital apardmre unda this part if the person had acquired it b) purchase. It includes cost 0! studia. surveys, destgns. pins. 13'. \ l a 6} . a... replacement. and renovation of an raisltn: liuildin: and initial equipment and the replacement of obsolete . equipment in an existing buflduig. it does not include normal maintenance and operational crust-rises. f2) 'New construction' means construction of a health facilitv where a health facilit) does not exist or V construction replacing an existing; health facilit). (3) 'Oreanized ambulatory health care faciltn' means a facilitv other than a physician' s private of free that prov ides medical care on an organized basis to patients not requiring hospitalization and that is not part of a hospital but is organized and operated to prwide medical care to outpatients. The department may promulgate miles to differentiate an organized ambulatory health care facilit) from a private office of a practicing phi sician. dentist podiatrist. or othe pm ate practice office. (4) ‘Person' means a person as defined in section 1196 or a governmental entity. Sec. 2105. (l) ”Secretar)" means the United States secretary of health. education. and welfare. (2) ‘State ago-icy" means the state health planning and development agency designated pursuant to section l52l of title 15 of the public health services act. 42 U5. C. 303m (3) "Suharea" means the health facility sea ice area defined by the department (4) "Tertian healt' '2 care sg ice faciljg‘ means a facfli rv t M by a pMthongs to gamut. -i;.:...l°_does not include a lawn y operated by an indnitiual or individuals licensed to practice medicine. osteopathic medicnie and surgery. dentists}. or podiatr) who perform tests or procedures personali) or through their employee solely as an adjunct to treatment of the licensee's patients. - ~t Sec. 2211!. A certificate of need program shall be established and shall: (a) Prov ide for rev in and determination of need before new institutional heal h serwces. faeilitia, and organizations are offered or developed or substantial expenditures are undertaken in preparation for the of ferin: or development. 0:) Provide that onh needed services. facilities. and organizations shall be offered or developed in this state. (e) Meet the policies and procedures governing the issuance of certificates of need required for projectsQos stride federal grant-in-aid programs and federal loan guarantee programs. /‘ See. 22113. (l) Except as pros ided b} this part and rules promulgate! under this part. a person ihall not begin operation of a new health facilit). make a __e_:_ha an“ ubed capacit). e a eh we undertake a capital expenditure for the conmctio't'f- conversion. addition to. or moocrntntaon in excess "of $150.00.!” of a health facilitv or make a commitment for financing the offering or development of a new institutional health service without first obtaining a certificate of need which dousrnents a demonstrated need and grants permission for the proposed project. 2)Eacept as provided in section 211029003). a certificate of need is not rquired fora health facility to reduce its scope of services or bed capacity (3) Recommendations made bv the health sv stems acute} and decisions madeby the department under the certificate of need program shall specify approval of the application. disapproval of the application. or approval of the application with mndinons. if the conditions are explicit and the conditions specify anrne. not to exceed l vears. by which the conditions shall be met. Before issuing a certificateof need with conditions. the department shall provide the appropriate health systems agency with a list of the proposed auditions for review. (4t A certificate of need shall not be rcquird for a dance in service in a facflity defind in section 2.2105(3). See. .121. (l) The council and the state agencv shalt (a) Approve proposed rules for the administration of the certificate of need program established under 0:») Advise on administration of the certificate of need program. the administration of Act No 299 of the Public Acts of 1937. as amended. being sections 3150] to 33155 of the Michigan Compiled Laws. and the requirements of the hospital and medical facilities amendments of 1954. 42 U5 .C. 29) to 510. (c) Biennialh conduct a review and prepare a written evaluation of the certificate of need program including recommmdatfon's considered a ,propriate hi the council. (d) Assist the departing" in othe- related matters as it reasonabl) requests. :5" (2) The certificate of need board it created in the department. The certificate of need board shall 179 g-ft ‘ —~ M”; .._.-- __ —_._..-... i working drawings. nieciftcations. and other activities essential to the acquisitidn. improvement. expansion. ailtlition. conversion. modernisation. new construction. or replacement of physical plant and equipment. (3) 'Certificate of need' means a certificate attesting to need of a new health facility. change in bed capacity. change in service. or capital espcnditure by or for a health facility issued is acwrdance with this part. (4) 'Change._'gi_bed_capaciry:m.eans either of the following: 7:: - . /5) An incfease of licensed bed capacity of a health facility. "" \ . (b) A redistribution of beds which does not result in a reduction in licensed bed capacity. but which, with respect to hospitals. does result in an increase «decrease b beds in an obstetrical department. long // '\-term care unit..or psychiatric unit. .. , °”" (5) "Change in service“ means health services which are'offered iti'or through a health facility and which were not offered on a regular basis in or through that health facility within the lzmonth period before the time the services would be offered. ' (6) 'Consumer'. except as provided in section ESL means a person who is not a provider of health care as defined in section 1531(3) of title 15 of the public health se.-vices act. (2 U.S.C. 3%. (7) 'Conversion' means converting an existing building not previously licensed as a health facilin' to such use or converting of an area of any othu truncation to health facility use or converting the facility from one licensed use to another licensed use. (8) 'Couneil" means the state health coordinat‘cig council designated pursuant to section 152A oftitle 15 of the public health services act. 42 U.S.C. 300rns'r. Sec. 2210!. (1) 'Health facility" means: (a) A facility or agency licensed or authoriad under parts 201 to 217. or a licensed part thereof. except a facility or .agency licensed under part 203. ~ (b) A mental hospital. prvchiatrie hospital. psychiatric unit. or'mental retardation_f_a_gfl.int operated by the depa-mtal rm or uccnseo under Act .-\o. m the Public Acts of 197‘. as amended. being sections 330.1001 to 350.2105 of the Michigan Compiled Laws. _ . (e) A facflia’am'jiig. outpatient physical therapy services. mclud'mg speech pathology services.) (d) A kidney disease treatment center. including a freestanding hemodialysia unit. (e) Ar. orcantzev’ xiv-“Mm h-zlth care facfliry. (f) A tertiary health care service facility. 344. 3310’ 3F) / (g) A substance abuse treatment program offer'mg inpatiait treatment. to be included for certificate of 3ch need 2 years after the effective date of this code. ' '56 (h) Ar. outpatient nn-chirtric clinic. _ (i) A home health agency. This subparagraph shall not be effective until home health agencies are licensed irvthis state. (2) For the purposa of this part. 'health facility' does not mean any of the following: :45 5;: (a) An institution conducted by and for the adherents of a church or religious denomination for the purpose of providing facilities for the care and treatment of the sic}: who depend solely upon spiritual means through prayer for healing. (b) A health facility or agency locatd in a mectional institution. (c) A veterans facility operated by the state or federal government. (3) 'f-lealth systems agency’ means a health system agency designated pursuant to section 1512 of title 15 of the public health res-vices act. 42 US.C. m1. (4) 'Home health agency' means an agency that provides to individuals. in their place of resideiee othc than in a hospital. nursing home. or county medical care facility. registered nurse services and l or more of the following services: nursing services by 'mo'ividuals other than registcrd nurses. therapeutic se.-vies. social work services. homemaker services. home health aide services. or other relatd services. (5) "Hospital", for purposes of sections 22156 to 355 only. means a hospital as regulatd under part _ 215. but shall not include a veterans faciliry operated by the state or federal govcmmcit. (e; 'lnstitutiana! health sen-ices’ means health services provided it or through health facilities and include the entities in or thrOugb which the services are provided. I .0. ..I.'l-I '-.... Sec. 22105. (1) 'hfcc'errdsation c.‘ the physical plant' means a major upgrading. alteration. or chanze in function of a part or area of a health facilzty. it includes in: alts-anon. expansion. major repair. remodeling, 175 ' ("l consist of 5 members appointed by the governor with the advice and consent of the senate. The members shall serve for a term of 4 years. except that of the members first appointed. 2 shall serve for a term ofvl ‘ ..\ years. 1 for 3 years. 1 for 2 years. and l for l year. One of the memhers shallbe a physician licensed under ? 3"- part 173. 1 shall be a physician licensed under part 173. and 3 shall be consumer rqiresentatives of thei' ,3 l a. general public. The members shall he paid compensation and reimbursed for expenses as determined ,; f .7” annually by the legislature. ' . ‘ I (3) A health facility which is not granted a certificate of need upon application may appeal to the l certificate of need board. The certificate or' need board shall hold a hearing on the appeal within 30 days '5' after the appeal is filed. The hearing shall be conducted pursuant to the administrative procedures act of 1969. lf the certificate of need board finds any'of the follow'mg. it may grant the certificate of need or I ' modify the bed reduction order for that health facility: - (a) The bed reduction plan or the limitation on the number of beds for the health facility is arbiu-ary and l capricious. . (b) The denial of the certificate of need application was arbitrary or not in accordance with law or the ! appropriate bed reduction plan. (e) The denial will cause a significant reduction in services by physicians of a partiarlar school of '- mdicine. /" ° .fll’ department. with the nipervision of the state agency. shall develop and administer the state medical 'facilities plan and administer the state certificate of need program in a manner consiste'it with th. requirements of Public Law 9&6“. 42 U.S.C. 217a nt. 2'25 nt. ESlb at. 33094. and 300k to 300s. and this part. The governor shall request that the secretary approve the agreement pursuant to section 1523(5)“) of title 13 of the public health services act. 42 US.C. 300m-2. , (2) The department shall promulgate rules necessary to implement this part. The rules may include: (a) Requirements for letters of intent to inform appropriate agencies of the nature and scope of proposed construction projects at the earliest possible opportunity in the course of planning the project. (b) The form and content of applications for regular. emergenq'. and nonstibstantive certificates. (cl Procedures for state and local review of applications for issuance of a certificate of need and modification including time limitations. hearings. periodic reports by applicants. and other requirements necessary under federal law. The administrative demands concerning facility utility services shall not i need requirements established by federal law. (d) The duration. modification. and extension of certificates ismed under this part. (3) The department shall promulgate rules to differertiate an outpatiatt psychiatric clinic from aprivate office of a practicing physician. . Sec. 221%. (1) The state agency and the department shall enter into an agreement under which the L —. -4. _‘__‘ See. 3124. Where a health systems agency is not formed or is found hcapable of amassing remonsihilities for review of certificates of need. the department. with approval by the state agency. may enter into agreements with other appropriate public or private local agencies to review certificate of need applications. The agencies shall have the duties and responsibilities for review of applications described in this part for a health systems agenq. Sec. 22131. (1) In making determinations and conducting reviews for certificates of need. the department and a health systems agency shall apply at least the following criteria: (a) The relationship of the health care facilities or services being reviewed to the health systems plan and annual implementation plan. if any. for all health services areas to be served. (b) The relationship of the health care fac'Isb'es or services being reviewed to the bog-mgg development plan. if any. of the person providing or proposing the facility or service. (c) She need of the population sen/ed or to be saved for the health care facilities or saviour being review . (d) The feasibility and availability of less costly alternatives or more effective methods of providing the health care facilities or services being reviewed. . (e) The relationship of the health care facilities or services being reviewed to the existing health care system of the health services areas in which the facilities or services are provided or proposed. including the probable isnpact on 'the costs of providing health services it the areas served. (0 In the ease of health care facilities or services proposed under a certificate of need or other application. the availability or the potential availability of resources. including health personnel. management personnel. and funds for capital and operating needs for the provision of the facilities or ' ‘-_ . I” (“ul- services. and the potential for altemative uses of those resources for the provision of other health care services. . . lit) The special needs and eirwnistances of institutional health care facilities and other entities whi . .' provide 3 substantial part of their services or resources to individuals not residing in the health service areas in which the facilities or other entities are located or in adjacent areas. The entities may include medical Other health professional schools. multidisciplinL-y clinics. and specialty centers. (h) The special needs and circumstances of health maintenance orzanizations and other comprehensive health care programs. The needs and circumstances include the needs of. and costs to. members and projected members of the health maintenance organization in obtaining health services and the potential for a reduction in the use of inpatient care in a community through an extension of preventive health sax-ice and the provision of more systematic and comprehensive-health service. (i) in the case of a construction project proposal. the costs and methods of financing the proposed project; the probable impact of the project reviewed on the costs of providing health services by the applicant; and the specific requirements of law for building. zoning. fire. and safety standards and other permits and inspections applicable to the project. . (j) The degree to which the residents and physicians of the immediate community and region affected are provided access to the services and programs of the health facility app'tying for the certificate of need. 0:) The special needs and circumstances of biomedical and behavioral research projects which an designed to meet a state need and for which local conditions offer special advantages. (I) That the health facility does not discriminate because of race. religion. color. national originooge‘or sea in its operations including employment. patient admission and can. room assignment. and professional or nonprofessional selection and training programs. and that the health facility governing body does not discriminate in its seleCtion and appointment of individuals to the physician staff of the health facility or its cairtirig rograms on the butt of licensure or registration or professional education as doctors of medicine. osteopat ic medie'ute and surgery. or podiatry. ' .(m) That in the case of a nonprofit health facility. the facility is in fact gova-nedby a body comod of . a majority consumer membership broadly representative of the population saved. (it) When an application is made for a certificate of need to construct or expand an osteopathic or allopathic facility. the need for that facility on the basis of the need and availability in the community for sea-ices and facilities for osteopathic and allopathic physicians. other licensed health care professionals. and their patients and the impact of the application for a certificate of need on existing and proposed institutional training programs for doctors of medirn'ne and osteopathy and other liccised health care professionals at the student. internship. and residency raining level. This subdivision shall not be construed to dictate a departure from good health planning principles or to mandate unnecessary duplication of services or facilities. (2) in order for a certificate of need to be grantd toahealth facility the following fmd'mgsshallbe made in writing by the department and the health systetns agency: . (a) As to the efficiency and appropn'ateoeas of the use of existing inpatient facilities providing inpatient set-vies similar to those proposed. - (b) As to the capital and operating costs. and their potential impact on patient masses. efficimcy. and appropriateness of the proposed new institutional health service. (c) That superior alternatives to inpatient services in terns of cost. efficiency. and appropriateness do not exist and that the development of those alternatives ‘a not practical. (d) That in the case of new construction. such as modernisation or sharing arrangements. alternatives tr- new construction have been considered and have been implemented to the maximum extent practicable (e) That patients will experience serious problems in terns of cost. availability. or accessflsility. or pipe problems identified by the reviewing agency in obtaining inpatient care of the type proposed in the absence of the proposed new service. . (f) That in the case of a proposal for the addition of beds for the provision of skilled nursing or intermediate care. the relationship of the addition to the plan of other agencies of the state responsible for provider; and financing long-term care has been considered. (3) ln case of a churchspomored health facility or if the natttre of the nonprofit health facility is web that the legal riphts of its miners or sponsors might be impaired by a requirement as to the composition of in governing body. an advisory board with majortn' consumer membership broadly representative of the p:pul:.t:on sewed maybe construed tc be coon-alert: to the govern-:1: beard dose-rifled in subsection (Him) if the role attuned to tht‘ aévb‘cn' boat-d Lt rtieanmct'ul. its functions ate clearly prescribed. and it is :n-c: an opportunity to influence poiiq- formulation by the legally recognized govgg-mn- body. . lSl .._ _*.-. —o .4- _. . e (4) As used in this section. 'tonsumcr' means a person who is not a direct provider as defined in section 1531(3lfA) of title 15 of the public health services act. (2 U53. amp. . . Sec. filllfl. In reviewing a request for a certificate for construction of. conversion of. addition to. or modemiaation of a health facility. including a project to correct a licensing deficiency. approval shall be ° based on. but not limited to. a demonstrated current and future need for the facility or a part of the facility. We determination of need shall be consistent with the citeria and guidelines published for this purpose in the state medical facilitia plan. ' ' ‘~-..p ' to ,‘a. a ’. Sec. 22135. (1) The department may promulgate rules to govern the application of special needs and circumstances under section 2.2131(1)“) and (h). The rules applicable to mental health services shall be submitted to the department of mental health for review and recommendation before promulgation. (2) The appropriate health systems agency may adopt and shall publish before their application additional criteria to any out responsibilities under section 3131. Criteria applicable to mental health services shall be submitted to the department of mental health for review and recommendation before i adoption. The criteria shall not be inconsistent with this part. ' Sec. 32135. In applying for a certificate of need. an applicant shall include a statemmt addressing card: of the citeria established by section “£131. See. 9.2137. Before issuing a certificate of need. the department shall obtain the following: (a) From the person applying for the certificate. evidence of the applicant's ability to finance the ‘ construction. conversion. addition. or modernization project for which the certificate is requested and abiliw to finance the operation of the new. convened. added to. or modernized facilitia after completion s of the construction. conversion. addition. or modernization. - (b) The recommendations submitted by the appropriate health systems agent). as to the new 'aistitutional health services proposed to be offered within this state. If the department makes a decision inconsistent with the recommendations of the health systems agency. it shall submit to the appropriate health systems agency a detailed statement of the reasons ’for the inconsistency. The applicant and systems agent? may appeal a departmental decision pursuant to section $65. (c) Recommendations submitted by the department of mental health as to new institutional mental health services proposed to be offered within this state. . Sec. $139. The department shall promulgate rules establishing a formula for certification fees. The rules shall provide that at least 1/2 the cost of implernent'mg this part shall be provided by certificate of need ees. Sec. 22151. The department. after consultation with the appropriate health systerm agency. and as appropriate with the department of mental health. may waive certain otherwise applicable procedural requirements and criteria for review of projects considered nonsubstanrive in nature and not warranting full review. The projects may include those meeting an already demonstrated need acceptable to the appropriate health systems agency and the department. ’a‘ the projects are daigned to meet state and local regulations or a full review of the projects could increase the art by nnnecasary delay or squire 3 inefficient use of staff review time. - V \r Sec. 2.2152. (1) The department. after consultation with the appropriate health systems agency. and. as ‘ appropriate. the department of mental health. may waive otherwise applicable prov'uions of this part and : procedural requiremmts and criteria for review upon a showing by the applicant. by affidavit or at a \; public. 'ctformal hearing. of all of the following: \\ (a) The necessity for immediate or temporary relief due to natural disaster. fire. nnforesem safeq g \‘ consideration. or other circumstances. _ ~ {' fb) The serious adverse effect of delay on the applicant and the community that would be occasional "’t by compliance with the regular requirements of this part and rules promulgated tmder this part. (c) The lack of substantial change in facilities or sweet which existed before the ernerttcm)’ situation. (d) The temporary nature of the construction or services which “13 not preclude different disposition of longer term determinations in a subsequent regular application for a certificate of need. l (2) The department may issue an emergency certificate of need after necessa-y and appropriate review. A record of the review shall be made including capies cf affidavits and other docsmentat:or.. Findztgs and conclusions shall be made as to the applications whether the certificate 3 issued or denied. 182 - (3) An emergency certificate of need issued under this section ‘is subject to special limitations and rstrictions in regard to duration and right of eatension or renewal or other factors imposed by the department. - ' ' Sec. 22154. (1) Within 45 days after the effective date of this section. the department. after consultation with the health systems agencies and with the approval of the state agency. shall prepare and submit to the council: 5(a) Cuidel‘mes for identifying the appropriate hospital eapacicy and excess hospital beds 'at each m ”a. ' “ .e- a (b) Criteria to be used to review and approve the plan developed by a health systems agency pursuant to subsection (7). One of the criteria shall be the potential of the plan for assuring appropriate access to and quality of medical care se.-vices for residents of the area served and for achieving economic savings consistent with this objective. (2) The guidelines and criteria submitted by the department and approved pursuant to subsection (5) and the plans developed pursuant to subsection (7) shall consider the factors and criteria in section 22131 and the following. where appropriate: h (a) :Special circumstances of hospitals which are more than 25 miles or 30 minutes from the nearest . ospita . (b) The immediate and long-term impact of the actions proposed on the costs and charges for-providing health services in the area. (c) The relationship of the services proposed to be discontinued to the health care system of the as; including the impact on health manpower. . - - (d) The relationship. including the organizational relationshiphof the health services proposed to be discontinued to ancillary or support services. (c) The degree to which physicians and surgeons who are affected by the closure or consolidation of hospitals or professional savices have access to the physician staffs of other hospitals is the area affected. (3) Subsection (2) shall not be construed 'to dictate a departure from good health planning pr'mciples or to mandate unnecessary duplication of services or faciltties. (4) The council may approve the guidelines and criteria within 93 days after it receives the guidelines and criteria pursuant to subsection (1). The council may modify the guidelines and criteria before it approve.s them. 1f the council does not approve the guidelines and criteria Within 90 days after the council receives them. the guidelines and criteria shall be considered approved as submitted by the department. The guidelines and criteria shall be included in the state health plan developed pursuant to section 13% of title 25 of the public health services act. ‘2 USC. 330m§§ :11: # 2.3. 5.3. 5.3 5.3. 514.35%, Luncxas, C.G-lfCI-‘Jfil., 323.255, 13.239. 12.-.35 855 £2 72 841 636 180 43 108 985 292A 82 2063 2067 170 257 1271 168 S 301 4356 4422 5050 #452 2367 . 37E :3 NEWS FROM SOCIETY FOR THE RIGHT TO DIE 250 “Es! 57m Street/Ne“ \‘ork. .\‘\‘ 100194212. 2466973 1952 Rich: to Die Bills Sponsor Don Clockson/Brian Rogers Judiciary Co==itcee Paul E. Steinberg Virginia Rosen Richard L. Greene Dr. J. Roy Rowland, :5 1 Clifford 7. Uuaine Richard Henderson. £3 a; Dance K. Carpenter, £5 a_l Benjazin CayecanolJ. Kuroda Dennis R. Yanda, _e_c .a_1 Maxie Eirono Connie Chun flarold A. Kat: Bernard 1. Enron Janus Abraha: Loren E. Ringer Julia Genrlenan Berry Jean Clark Sheila Bixson Richard A. Voke Salvatore Dinasi Royal L. Bolling, Jr. David Hollister bob Dsey Baincn xiller Bardin Cox Larry E. riead 9/16/82 _ Aa’..~—~._—O~C - - Co:r:i tree IS tatus Session adjourned PASSED SEKATI 25-7 Lost in House 67-78(4/27/ Session adjourned 0| '9 Session adjourned OI I. Session adjourned Study Cor-.sittee Session adjourned Session adjourned Session adjourned Session adjourned Session adjourned Judiciary Judiciary Judiciary Public Health Session adjourned Session adjourned Session adjourned Session adjourned :5, mum, :35: mzm, I a o- n a a— 0' a: 2:37.73: Quanta, case's. 2.3.5. 3;.S:Z!u?0!~, an: :he n:s..—.1c: or c:..::_.u. l—-\ ecu-o g.“ a 0‘ GI ‘&:-evo\‘ (~I” [CL] __...--——— ————-—-'..-.._--- .: LJSKA 8.5. 555 JDKXECTICU: 5.5. 62 TLGRIDA “ ’J 0". ZEORGIA 5.3. 638 3.3. 180 I-L's'u‘AIl S .3 . ‘3 5.3. 108 8.3. 985 5.3. 2926 8.1. 2063 3.3. 2067 ILLIDOIS 8.3. 1 2.5. 170 ::\DIA:\A no 257 B. 1271 :oxa .B. 168 £0 91 23£YLAND .3. 301 S E 8 ILASSACHUSETTS 8.3. 6356 8.5. L£82 H B. 5050 E HZCEJGAR . 4492 ZSSISSIPPI 2367 S . E. . 378 5553;"; 3.2. L56 1'52 FJSZ':: :0 32’ -a- EL-“S I"; as... \-.'.D 3; T_ F; T’s:— E 5:22. o e a o a e o a o a e o e e a 00(0.‘-£R) ;_;_s L....__."l"""‘ : ILI£!3J-. h‘J'JSSLS, o:.19c.=:m.. organs. IDfiJiD. KANSAS. 1313A. 3:33: .‘22'2 . 02:30:, rants “53:33:93, and ' orr- 3.922.133. , a'vasn-n 1982 Rich: to Die Bills Sponsor Don Clockson/lrian Rogers Judi ciary Cocrsi ccee ?aul B. Steinbsr; Virginia Rosen Richard L. Greens Dr. J. Roy Rowland, to Clifford I. Uuaine Richard Henderson, er al Dance x. Carpenter,- er al Benjandn Cayecano/J.— Xuroda Dennis R. Yannda, £5 £1 manic Birono Connie (mun Harold A. Rat: Bernard I. {pron James Abrahan Loren E. Ringer Julia Gentlenan Berry Jean Clark Sheila Eixson Richard A. Voka Salvarore Dinasi Royal L. Bolling, Jr. David Hollister lob Dsey Sainon Killer Hardin ch Larry t. head 1. water: (4/5 152) the DIS?“ 9/16/82 Coari tree/S cams Session adjourned PASSED SEKAID 28-7 Lost in House 67-78(b/27/8. Session adjourned Session adjourned 00 Cl Session adjourned 0' Study Committee Session adjourned ‘ Session adjourned , Session adjourned Session adjourned Session adjourned Judiciary Judiciary Judiciary Public Sealth Session adjourned Session adjourned Session adjourned Session adjourned .1 CI 0'." {221.251}. . APPENDIX 5 Hospital and Home Deaths Hichigan Occurrences, 1971. 1975, 1981 ' Total Home Hospital Other and lost Deaths Deaths Deaths Unnnown 1971 76,&99 10.026 69.880 16.593 1975 73,779 9,445 48,209 16,125 1981 74.685 9.634 66.654 15.397 1Includes enroute to hospital. convalescent and nursing homes. other hospitals, institutions, jails, State hospitals, all other and unknown. Source: Table 43DP, Deaths- County and Hospital of Occurrence by Hench of Death. Hichigan Occurrences, 1971. 1975, 1981. Prepared by: Information Request Unit Office of Vital and Health Staci tics Michigan Department of Public Health 3500 N. Logan Street Lansing. MI 48909 APPENDIX 6 UPDATED LIST OF HOSPICE PROGRAMS AS 0? APRIL, 1983 ORGANIZATION DIRECTOR/CONTACT PERSON SERVICE AREA Lenawee, lnc., Hospice of Jan Gurdjisn, Administrator Lenawee County 1394} N. Main Street H (517) 263-4727 Adrian, Ml 49221 (517) 263-2323 Wings of Hope Hospice, Inc. Ann Murphy Allegan City Area 555 'Linn St. (may expand in Allegan, m aimo ‘ future) (616)673-8024 Gratiot Community Hospital Home Care Margaret Boyd Cratiot County, 300 Warwick Dr. Montcalm County & Alma, Ml 08801 hospital service area (517) ass-1101 Alpena, Hospice of Chris Woleban Alpena Couty 155 Gilcrest . Alpena, Ml £9707 (517) 354-5258 Washtenaw, Inc., Hospice of Ann Ballew Washtenaw County 2530 S. Main Ann Arbor, MI 48103 (313) 995-1995 ' Bay County Inc., Hospice of June Michalski Bay Caunty P.O. Box 253 H (517) 662-6042 Auburn. Ml 48611 (517) 892-2507 Good Samaritan Hospice Care Carolyn Fitzpatrick Calhoun County 450 N. Avenue Battle Creek, Ml 09016 (616) 965-1391 Mecosta Comm. Council on Aging 8. Schroyer L03 Elm. Room 209 Ezg Rapids, Ml c9307 Cranbrook Hospice Program Priscilla Sommers Birmingham 1669 W. Maple Rd. Birmingham, MI 48009 (313) 634-6116 ORGANIZATION Charlevoix County Hospice P.O. Box 233 Boyne City, MI 49712 (616) 582-2576 Cheboygan, Hospice of Community Memorial Hospital 749 S. Main Cheboygan, MI 49721 (616) 627-5601 Branch County Citizens for Hospice 27 E. Chicago St. Coldweter, MI 49036 (517) 278-4655 Bay De Noc Hospice, Inc. Suite 120, Doctors Park Escanaba, MI 49829 (906) 786-3915 Fenton Area, Hospice of 111 Trealout Dr. Fenton, Ml 48430 (313) 629-9818 Bay Valley Home Health Service 1014 Gilbert Street Flint, MI 48504 (313) 733-3050 Hurley Medical Center Hospice Program One Hurley Plaza Flint, MI 48502 (313) 766-0654 Hospice Support Services P.O. Box 383 Garden City, MI 45135 (313)522-4214. KER DIRECTOR/CONTACT PERSON Rev. Kathleen Smith Kim Sangster or Carol Hicks Barbara Colvin Rick Chickering : H (906) 786-7431 Carol Sinclair (313) 750-02 80. LaVerne McCombs Jackie Kass Therese Price Clinton Hecorial i-Lcspitalliioce Health Services 13105 Shave}~ Road, Suite 4 Dewitt, .‘11 $5520 (517) 665-8302 or 224-6551 Janet Gradic'n, 2.2:. SERVICE AREA Charle-.-oix County ChebOygan County + outlsying areas Branch County Eacanaba Area Fenton - 10 Mile radius of Genesee County e Flint o Westland, Livonia, Garden City, Dearcom heights, Redford e ORGANIZATION Hospice of the North, Inc. P.O. Box 846 Gaylord, MI 49735 (517) 732-2602 North Ottawa Community, Hospice of 1309 Sheldon Rd. Grand Haven, MI 49417 (616) 842-3600 Grand Rapids, Inc., Hospice of Greater Emeritus Center Acquinas College Grand Rapids, MI 49506 (616)454-1426 Grant Hospital (In conjunction with Newaygo County 6: St. Barthlemew's) 41 N. Lake Grant, MI 49327 (616) 834-5694 Bon Secours Hospice 468 Cadieux Grosse Pointe, MI 48230 (313) 343-1000 Cottage Hospice Cottage Hospital of Grosse Pointe 159 Kercheval Ave. Grosse Pte. Farms, MI 48236 (313)884-8600 Holland, Inc., Hospice of 21 West 16th Holland, MI 49423 (616) 396-2972 DIRECTOR/CONTACT PERSON Mary Niedzwiecki Grace Stanton Marsha Zandbergen O (616) 454-1426 Bea Do: or Sr. Rosaria or Joanne Doublsky Sondra Seely H (313) 247-0551 Sibilla Boerigter SERVICE AREA Otsegc County 6: fringe area‘ Grand Haven area inland to I94 HWY 30 mile radius of Grand Rapids (redefining borders) 1 I Northern Kent County I Newaygo County ’ Reasonable distance of Bon Secours Hospital Open Holland-Zeeland d: Douglas Hospital area ‘ l I ORGANIZATION Livingston Care Center Hospice 1333 W. Grand River Ave. Howell, MI 48843 (517) 548-1900 Memorial Hospice, Inc., The Box 344 I lron Mountain, MI 49801 (906) 779-1830 Iron County Hospice Petrucelli d: Petrucelli 131 Genesee Street, Box AA Iron River, MI 49935 (906) 265-5123 Jackson, Hospice of 309 S. Jackson St. Jackson, Mi 49201 (517) 783-2648 Kalamazoo, Inc., Hospice of 247 W. Lovell St. Kalamazoo. Ml 49007 (616) 345-0273 F’ISH Hospice for Voluntary Support 2220 W. Clarkston Lake Orion. MI 48035 (313) 693-8170 Lansing, lnc., Hospice of 631 S. Waverly Rd. Lansing. VI LES-‘17 "Q-‘ 1" ' (31 I,’ 341-593!) Lansing General Hospital Hospice Care Concept in Bereavement 6: Grief 2800 Devonshire Lansing, MI 48909 DIRECTOR/CONTACT PERSON Marlene Smith Kristi Cellelo Nora Angeli Petrucelli Jan Hendricks Executive Director Margaret Madden Karen Kacperski .argaret McNiven t-iaryles- Stapleton (517) 372-8220 SERVICE AREA Livingston County Iron Mountain Area Iron County Jackson County Kalamazoo County Oxford/Orion Pontiac/Waterford Drayton Plains/ Union Lake/Troy] Clarkston/Utica/ Rochester/Romeo] Mt. Clemens Lansing 6- Greater Metropolitan Tri Comty Area Lansing Genera; Hospital Patient only ORGANIZATION Lapeer Area Hospice 1375 N. Main St. Lapeer, MI 48446 (313)664-8511 X 150 Northern Lights Hospice 205 Osceola , Laurium, Ml 49913 (906) 337-3100 Manistee Area Hospice, Inc. 5700 Coates Highway Manistee, MI 49660 Lake Superior Hospice P.O. Box 819 Marquette, MI 49855 (906) 226-2646 St. Josephs Hospital 215 N. Avenue Mt. Clemens, MI 48043N. of 17-Mile Rd.) (313) 286-7700 Hospice of Central Michigan 400 S. Main Mt. Pleasant, MI 48858 Muskegon County, Hospice of 313 W. Webster Muskegon, MI 49440 (616) 728-3442 R.P. Hicks Memorial Hospice 502 W. Harrie St. New Berry, MI 49868 (906) 293-5181 Shiawassee, Inc., Hospice of 626 V0,. King, Rf“. 2L1 Owosso, MI 48867 (517) 723-5211 X 1565 DIRECTOR/CONTACT PERSON Donna O'Toole Cheryl Karvonen Julie Foltz ifi Secretary Cynthia Nyquist or Josie Patrick 3 Patricia Allen Betty Harris‘y' Karen Nelson Theresa Shifflet Rick Meredith SERVICE AREA Lapeer County Northern Houghton County and Kewanee County Hospital Service rea (McComb County ' Muskegon County New berry area 4 30 mile radius "I ‘9 niawass a County ORGANIZATION Petoskey, Hospice of P.O. Box 2091 Petoskey, MI 49770 (616) 348-4253 Michigan, Hospices of 73 Oakland Blvp. Pleasant Ridge, Ml 48069 (313) 577-1822 St. Joseph's Mercy Hospital 900 Woodward Ave. Pontiac, MI 48053 (313) 858-3000 X 4250 Blue Water Hospice, Inc. Marian Manor 305 Bard St., P.O. Box 501 Port Huron, MI 48060-0501 (313) 982-1990 St. Mary's Hospice Care Program 830 S. Jefferson Ave. Saginaw, MI 48601 (517) 776-8000 Saginaw, Hospice of Division of Visiting Nurse Assoc. 3037 Davenport Saginaw, MI 48602 (517) 799-6020 St. Johns, Hospice of Clinton Memorial Hospital 805 5. Oakland St. Johns, Ml 48879 (517) 669-8332 Hospice at Home, Inc. 913 Lane Drive St. Joseph. Mi 49085 (616} 983-0432 DIRECTOR/CONTACT PERSON Dale LaBrie H (616) 526-2274 Bill Simpson + l Ronnie Martin ”L Ann Arcieri Audrey Machul Keith Markstrom ' Michelle Weisman Jane Gast H (616) 983-3396 SERVICE AREA Emmet County ‘ Hospital Service Area N. Oakland City St. Clair County _ Part of Sanilac County Part of Lapeer County N.W. Part of Tuscola County Saginaw 6: Surr0unding counties as identified by patient need Saginaw County Berrien County ORGANIZATION Sault Area Community Hospice P.O. Box 936 Sault St. Marie, MI 49783 (906) 635-1508 Hospice of Southeastern Michigan 22401 Foster Winter Dr. Southfield, Ml|48075 (313) 559-9209 Tri-County Home Health Care 23155 Northwester Hwy. Southfield, MI 48075 Tawas-St. Joseph‘s Mercy Hospital Hospice Program 200 Hemlock St. Tawas, Ml 48763 (517)362-3411 Grand Traverse Area Hospice Sixth 8: Madison Streets Traverse City, MI 49684 Michigan Home Health Care (includes Hospice Program) 955 E. Commerce Drive Traverse City, MI 49684 (616) 943-9540 Hospice of Helping Hands, Inc. P.O. Box 276 West Branch, MI 48661 (517) 345-7460 3': tier ‘nos;ice prograzs not included DIRECTOR/CONTACT PERSON Ned Bromley or Tina Hall Peg McCuistion Karen Hoffner, Administrator Director of Nurses Rose Blackmore or Michael Jones Margaret McChrystal Dr. Lilo Hoelzel-Seipo Gail lssette iosco County in study SERVICE AREA Sault Ste. Marie Area (not yet defined Southeastern MI 30-35 mile radius of the hospital Grand Traverse County, Leelenau County 6: Benzie County Grand Traverse County. Leelanau County, Benzie County, Antrim County 8: Kalkaska County «a Roscommons County Ogemaw County APPEXDIX 7 Dear hospice Propre: Leader: Efforts are underway to eezpile data on characteristics related to the growth and developpeat c! hospices in xichipsa. You are asked tc psrttcipst :: the study by cczpl tip; the ttached survey. Although the cuest.ca- asire =sy sppesr leap, :: has tee: designed so that you can cczplete 1t 1: spprcxtaetelr 20 cinutes. 1: would be helpdul if the to :vidcel eozplettnp :: for your crpaattstdc: 1s kocvledpestle about the develop at of your propra: and has access to data about funding, patieat load, staffing, etc. lateraetio: received will he cc:r11ed 1a a report and 'preseated to all participating hospice proprsps. 1! you do not want to have tafcr=atioa about your hospice acluded 1a the report, please check the appropriate box below and rotor: this letter with your coopleted :rvey. ?Zeese cc:plete the survey sad recur: it to the addressed. steeped eavelooe. a: later th a July 10, 1982. If you have any questions, please call me at (517) 355-0676. tioo obtained will be used as part of as dis- ‘oa : the change 1: hosp.ce orpsattatiops over d will also he avatlatle for use ty all particl- s as they debate state and federal severance: doi:1- ues coocerrtap hospice licensure, regulation. reto- seneat and coatinustiot. "'s- fl n I s- o. g n I greatly appreciate your cocperati a. Thank you. Sincerely, Lenora ?i:: ?ersdts 2g , Yes. I rent tafcrzsttcr s:o-t r? :rcgre' .c-piied 1: stetettde repcrt. 9‘ ’ - o . -0 l-‘ — ou’ e- o- o -. --ano‘- nun-..J . a‘ . it ..c. “--o -.caC.--‘o-¢o- ‘vu-g - rou'o - bvuroo - . ...———_—A .. XZCEIGAR 33-?152 S?RTEY INSTRUCTION The following questionnaire is designed to collect i ‘ornation shout tachipsn‘s hospice oroprens. Ouestions asked deal uith the site, location. type of patient population, fundin sources, etc. of your hospice propran. while the questionnaire seens a bit long, it is designed to take about 20 einutes of your time. Flease ansver as oonpletely as possible. Along the left hand no: in you will see a space with s nunber below it (e.g. __ __) . The nunher is for conputer codin purposes. lou - C are asked to insert the correct data in the blanks above. For exszple, if you are asked to “please indicate the ownership type of your hospice progre: and are given several choices, please insert the nunoer corresponding to the correct choice. IFor exenple: l. nonprofit 2. profit 3.‘~Other The "2" tells the ccnputer that your hospice propra: is classified s for profit. - a» 4” In some cases you vill see s cuestioo divided by the word ”Card” fol- lowed by a nunber, for excnsle. "Card 2". Please continue to ensues the question. The "Card 2" is an instruction to the keypunch operator an is not an instruction to you. If you have any questions about filling out this survey, please call Lenora Finn Paradis (5i?) 353-0676. Please return the questionnaire in the enclosed, stanped enveloped by July Thank you in advance for your cooperation. M~--..- F’ - 5.87 ncdian - 6.84 F - 2.45 xediau - 2.76 MRGINALS ——— HOSPICE 0'.‘ 25710535. msnucnoxs: Please complete the questionnaire as fully as posible. For each questi check or circle the appropriate answer. Please RETURN this questionnaire by I. 061157 5 in the enclosed, addresed and stamped envelop. if you feel a question can best be answered by attaching meeting minutes and other written materials please do so. if you have any. questions please call Lenora hm Paradis (517-353-0676) if you would like the questionnaire returned after it is computer scored for your files please check the box below. Thank you for your assistance. ”i D i would like the questionnaire returned for my files. 1. Which statement best reflects your primary focus of care? (circle one) 5 a. hospital based hospice program-scattered or floating beds 2 b. hospital based hospice program-separate unit 3 c. hospital basad oncology unit '3 0 6. hospital based palliative care unit ~ ; k 1 . 1 e. free-standing facility f. free-standing hospice facility 35 g. home based hospice program 1 h. home based nursing care i. other (please specify) 2. Which statemer t best describes your hospice program at present? (circle one) 10 a. it is in the planning stage and hes not officially identified itself as a hospice program 3 5 b. it is a corporated hospice program but has not yet accepted patients ‘ 31 c. it is an incorporated hospice program and has accepted patients 0 d. it is NOT considering becoming a hospice program but will provide hospice ca: 2 0 c. it is NOT considering becoming a hospice program and will not provide hospice care IF YOU CIRCLED "e" PLEASE SKIP to question .3_§. 3. What is the approximate pOpulation of your service area. Circle the letter that corresponds below: i 1 a. Less than 1, 000 9 e. 10,000-“.999 9:. 100 non-2‘9. can I :0 o. 1 moo-4,999 ' E e. 2:,000-49.999 7b. 252. out 99,999 . 3 c. s,ooo-9.:29 e :. st,coc-9s,999 at. sco,ooc or more K - 5/29/80 edian - 5/19/79 l7 4. 8A. What counties and cities does your organization serve. Please list in the space below: cities counties Are there other hospice programs in your county or city! (circle one) a. yes 31 b. no Which category best describes your organization? (circle one) i a. for profit 45 b. nonprofit 0 c. does not apply Below is a time line. Please place an “X“ on the month and year which m accurately describes when you program began; that is, when was it firs identified as a hospice program. Earlierthan/JFMAhinASOh’D/JPMAMJJASONDI Jmfilfls 1575 1979 JPMAMJJASONDIJFMAMJJASOND/JPMAMJJ T580 1951 1982——_’J‘ Thinking back to when your organisation began. please use the scale below t rate the extent to which individual members of each profession were involve in your organization. Circle the number which best describes the involvemett categories of individuals listed below: KEY: I l I 2 I 3 I 4 I not only regularTy frequently : involved occasionally involved involved . involved I 0 1 35 a. nurses Il/2I3I4I 5 5 lb 17 b. physicians Il/2I3I4/ 2 ll 2: If e. lay community members I l I 2 I 3 I 4 I 1:. ~' 7 3 d. hospital admin'tttrators I l f‘2 I 3 I i I a. disease related organization representatives (ie., Michigan Cancer Society, Michigan 1;. 13 g 5 Heart Asociation, etc.) I l I 2 I 2 l 4 I 26 ll 3 5 ' f. medical society representatives I l I 2 I 3 I i I O 7 l? 21 g. clergy (includes rabbis, priests, etc.) I l ’ 2 l 3 I d I h. survivors of dying patients I .1. I? I Z. ' .4.I .o‘ t ' i. insurance ccmpanyrepresentatives I 'l' I l I 3" (I é l6 1: 1‘ j. educators / l I 2 I l I I -2- i - 1.9 .‘iedian - 1.9 Elanl: - d 41 D- .‘u 30 13 BA. 9A. Continued HEY: I l I 2 I 3 I 4 I not only regularly frequently involved occasionally involved involved involved 2 S 1125 k. socialworlters _ IlI2/3I4/ 1. other (pleasespecify) I 1 I2 I 3 I d I . Are the individuals who aststed your prop-am in in early foundation still asociated with your program? (circle one) a. yes, all of them are still involved b. yes, most of them are still involved c. yes, some of them are still involved d. none of them are still involved - IF YOU ANSWERED 'b'or "c‘| in the space below please describe why thee individuals are no longer involved with your organization. (Attach separat sheets of description if necesary) Is there a CORE group of individuals in your community responsible for your program‘s development? (circle one) a. ‘ yes 5 b. no c. don't know (skip to 98) (skip to 10A) (skip to 10A) if YES from the list below, please check the occupational categories of C01! individuals. (check all that apply) a. physicians b. nurses c. " social workers ‘ professionals outside of medicine homemakers f. clergy g. hospital/nursing home or home health administrators h. other( please specify) lOA. Remembering back, what were the OPJGINAL goals of your ortanization. From the list below, circle the number on the scale which best describes the importance of each goal which was selected by your program. (Please one any relevant iniormationi.e. minutes, brochures, etc. which list original gods.) KEY: I l I 2 I 4 I not selected somewhat important highly as a goal important important a. To promote the hospice concept 3 3 15 2;, in the community I 1 I2 I 3 I 4 I b. To improve the comfort of the o o o 1.7 dyingpatient Il/2I3I4I c. To change community attitudes 3 10 20 13 towardthedying ll I2I3I41 d. To help the dying patient be as 0 1 l. 42 alert andsymptom freeasposible I l I 2 I 3 I 4 I e. To include the family in the care 0 O I. £3 ofthepatient [112/3/4I f. To care for the patient at home as long as it is within the wishes and O 0 3 u. ability of the patient and family g. To increase physician participation in emotional support in the care for the dying h. To become a self-sufficient hospice program i. To obtain funds from third party insurers, private donations, etc. 5. To increase funds from third party insurers, private donations, etc. It. To establish linkages with other health care providers (i.e. nursing homes, hospitals, etc.) 1. To recruit members in. Other (please list in the space below) 108. In the space below, please describe how your program‘s lh’l‘nAl. goals . were developed (i.e. who drafted them, how were they approved etc.) (Please attach any relevant information) I. a 17 is 1112/2/4/ 12 a n 16 IlI2I3/4/ 12 7 ll. 14. Il/2I3I4/ 17 9 7 11 [112/314! (- 7 2013 Il/2I3/4I I“: ll / a“? PI 0 O 00 Ll/2I3/4/ .....A... r»---— .. 10C. 11A. mswsn 'lOC" ONLY is your: r'nocnm is part of A hospital, nursing home, or home health agency. if you are an independent community based hospice, please skip to question llA. What role did you hospital, nursing home, or home health agency administrator, board, or staff have in the development of your hospice program‘s goals. (circle one) a. he board determined hospice program goals b. The board in conjunction with administration determined hospici program goals ‘ c. Staff involved with the hospice program determined goals which weri reviewed by the board and administration. d. Staff involved with the hospice program determined goals which we: NOT reviewed by either the board or administration. a. The administration determined the hospice program goals f. Other (please specify) i I i i CURREKTLY what are the goals of your program. Use the same format a previously described for the rating in question 105 circling the number whij best describes the importance of each goal. Please place an 'X‘ alongsi those goals which your program has largely accomplished. ' KEY: / l I 2 / 3 I 4 I not Elected somewhat important highly as a goal important important Place “X“ here + a. To promote the hospice concept 1 0 1b 30 in the community I l I 2 I 3 I 4 [ b. To improve the comfort of the dying O u. patient IlI2/3I4j c. To change community attitudes 2 6 l 22 toward the dying I l I 2 I 3 I 4 I d. To help the dying patient be as 0 0 3 41 alert and symptom freeasposible I l / 2 I 3 I 4 I e. To include the family inthecare O o 1 1.3 ofthepaticnt llI2I3I4I f. To care for the patient at home as . long as it is within the wishes and O O l (.3 ’ . ability of the family and patient I l I 2 I 3 I 4 I g. To increase physician participation in emotional support in the care ; 3 1e 23 forthedying Il/2I3I4I llA. Continued KEY: I l I 2 I 3 I 4 I not selected somewhat important highly as a goal important important Place “X“ here . 6 h. To become a self-sufficient 9 3 15 15 hospice program I l I 2 I 3 I 4 I i. To obtain funds from third party 10 3 u, 14. insurers, private donations, etc. I l I 2 I 3 I I i. To increase funds from third party 13 3 12 14 insurers, private donations, etc. I l I 2 I 3 I 4 I it. To establish linkages with other health care providers (i.e. nursing 5 2 ll. 23 homes, hospitals, etc.) Ivl I 2 I} I 4 I l _ 1. To recruit members I31 I 2’] 3"]14 I G 0 in. Other (please list in the space below) I l I 2 I 3 I 4 I . . i, . ‘ 118. IF YOUR GOALS RAVE CHANGED OVER TIME PLEASE DESCRIBE THE. REASON FOR THE CHANGES in the space below (For example, goals have! changed as a result of changing leadership or earlier goals have been accomplished or current goals are more specific etc.) 12A. Some hospice program invite the general public to join'g as members. For a small f ec those individuals receive a newsletter and other information. Does your program have members? h'o (skip to 12?) 28- a. Yes 1: b. (sci; to 123) - .,_——.~ c. 30: yet. but planning to (skip to 13) i l ! 15 20 20 12C. .18 12D. 122. 27- 13. lie-5:. Hear. Esank-Date 10-6/79 12-5.’£1 15—5/82 5-5/82 122. ll" YES. in the space below please indicate the methods used for recruiting members (circle all that applv) a. by advertising 5 d. through affiliations with ’ religious organizations b. by word of mouth 5 a. through affiliations with area hospitals, nursing homes, etc. o. other (please specify) Are there requirement for membership (i.e. payment of a fee, participation as a volunteer, etc)? (circle one) a. yes a b. no I, c. notyet,butbeingplanned 4 3' YES, in the space below please describe the membership requirements and attach any membership policy. in the space below indicate how heavily you rely on members for assistance ii your program (i.e. to work as volunteers) (circle one) 1 1 7 19 KEY: I l I 2 I 3 I 4 I do not rely rely on rely on rely on on members members members members at all occasionally regularly heavily Has your membership increased, decreased, or remained the same since your program began? (circle one) . a. increased 0 b. decreased 3 c. remained the same Please indicate those actions you have taken by putting the .month and year i. which the activity BEGAN or WILL BEGIN in the space provided in the lef hand margin. if any activity does not apply, put an "X‘ in the space provided. for example: June 1981 organized community members organized community members conducted an asessment to determine what your comm needed selected a board of directors employed an executive director or hosp.ce program coordinator (employment refers to paid, voluntary, full or part-time) ’ draf ted rgar.izaticnal goals and objectives . ‘ -1- l3. Continued gmuk‘flaan ? 3-sfiii' “..s 2-5/82 31-3/51 36-3/81 41-4/82 3.3-3I89 13-4/82 35-9/61 22-6/81 25-6/81.8 22-4/81 26-L/79 16-6/79 ll-6I82 21-6/80 15-6/81 11-6/75 19-6/za.7 23—4/80.7 16-6/82 £2-5I51 .2—e'ez £2-é.’£2 {.5-SIé3 altered organizational goals and objectives (if more than once, most recent date) developed an organizational structure altered the organizational structure (if more than once, most recent date) applied. for a certificate of need applied for a license as a hospice applied for a license as a home health agency accepted one or more patients completed a pilot program prepared a plan for developing the hospice service with time frames - employed a medical director employed a patient care coordinator employed a volunteer coordinator developed staff training developed volunteer training developed a newsletter developed community education programs began to accept donations/contributions began to solicit funds employed nursing services began bereavement counseling considered merging with other hospice progr ms considered merging with a hospital considered merging with a home health agency considered merging with a nursing home .2. . ....——o-——-»— \n I [J a 14. 15A. 31 158. 16. Describe briefly the circumstances surrounding vour program‘s beginn .ng. (For example "because a community res: dent needed special care, or because Elizabeth Kubler-Rom came to speak“, etc.) if you have any written history, please enclose. Does your hospice have an admission policy identifying who may admi patients? a. yes (skip to 158) 11 b. no (skip to 16) 11“ YES, please describe the policy in the space below or attach the policy to this document. if your program HAS NOT El’PLOY ED ANY INDIVIDUALS (on a voluntai basis or for pay), please skip to question_ 18. Below is a list of individuals who typically are employed (for pay or on voluntary basis) by hospice programs. in the space provided on the left hai margin indicate “1" if you employ the individual for pay, '2" if employed f pay on a part-time basis, etc. Please Note: 1 I employed for pay full-time 2 a employed for pay part-time 3 8 employed as a volunteer 4 I intend to employ for full-time 5 I! intend to employ for part-time 6 I intend to employ on a voluntary basis 7 8 employed as a volunteer but will be paid when funding is available I 8 no plans for this position Medical Director, M.D./DO. Executive Director Administrative Progr m Coordinator Patient Care Coordinator 16. Continued Volunteer Director Education Director __ Research’Es-aluation Director __ Chaplain Other (please specify) 17. in the space below please indicate the average number of paid staff in your program irom 1979-1982. Put an “X' by those years in which you did not have paid staff. if - 4.6 r Blast): 2 - 12.3 r Slant {tedian - 4.0 a paid staff 1979 1.3 ' Median-4.2 a paid start 1931 36 ii - 5.6— i Blank i - ii .9' m liedfan - 2.5 I paid staff 1980 60 Hedda-4.6 O paid staff 1982 (Jan-July 1) 18A. Has your hospice program had more than one executive director since inception. (circle one) 37 a. yes 6 b. no 0 e. does not apply (skip to 188) (skip to 19A) 3 183. )1" YES, How many? - I 18C. Was your current executive director recruited from your geographic area? 2‘ a. yes 0 b. no 1823. Was your current executive director recruited from your hospice board? 23 .a. yes 0b.no 19A. What types of individuals comprise your program's board? (circle all I apply) ! 12 a. other hospice program employees ’ 3‘ b. physicians 9 or. home health nurses (in for profit industry) 29 d. home health nurses (in non-profit industry) 19A. Continued 30 a. hospital administrators or representatives 3!. f. lay consumers 25 g. educators f 35 h. clerg' 5 i. insurers 3 j. lit-t0 representatives 11 k. nursing home administrators/staff 17 1. private foundation or service organization employees l 0 m. other | 198. How is your board selected? (circleone) , 32 a. by a vote of members' 1 ' c. selected by the executive director I 3 b. sell-selected o d. other (please specify) 20. Does your program provide bereavement services or is it planning to provide- these services? 43 a. We currently provide bereavement services b. We plan to provide bereavement services c. We are not planning to provide bereavement services. (If YOUR ANSWER IS "c", please skip to question 25.) 21. On a monthly basis what is the average number of individuals for which you provide bereavement services? Use an estimate based on last year's (1981: average. - teem-7.5 f p” 22. What is the average length of time, in months, for which bereavement service: are provided. (circle the appropriate time period) 2 a. Under 2 months I- d. 64 months 0 1. 10-15 months 0 b. 24 months 0 e. E-lO monthsI-i g. Over 15 montiu 3 o. 4-6 months 23. Do you provide bereavement :zrviccs to individuals regardless of whether a‘ family member was in your respice pr:;rarr.? 26 a. yes 0 b. no 7 c. undecided to Is: '0 12 10 12 26 17 21 'J OJ 0.! 2) 2‘. 25. it» 11 12 18 13 16 18 16 11 1!. 12 15 16 15 -- Q o . .0“... in the space below please briefly describe your bereavement program. Attach separate sheets i! necesary. | Please indicate which agencies your hospice has a relationship with by placin) a'l" in the space in the left hand margin i’ the relationship is formal (1; contract has been written describing the relationship), '2' if informal (n: contract describing the relationship exists), "3" if service is available but you have no formal or iniormal agreement. 1 I formal 2 as informal hospitalis) home heal h egencv(s) nursing home(s) health maintenance organization cleaning/chore services ambulance services auxiliary services (i.e., P.‘l"., 3.7.) social services other hospice“) local health department local. mental health department disease related organization (i.e., hiichigan Cancer Society) church other C5523: 2 (infernal starry) -11- 3 8 service available 26. Using the scale below circle the number of the category provided which describes the degree to which your program provides or plans to provide the? following services: I 1 I 2 I 3 I 4 I not presently provide? not presently provided provided NOT but h’lLL NOT provided BUT and WILL PLAN NED be continued PLANNED 3be continued - 29 a. companionship I l I 2 I ‘3 I 4 I . S C 13 19 b. financial counseling I l I 2 I 3 I 4 I . 15 O 11 13 c. legal counseling I l I 2 I 3 I 4 I . . l 0 1:. 'b d. psychological counseling I 1 I 2 I 3 I lsl 1 13 g “’9 a. personal care I 1 I 2 I I Z I . 13 o 17 9 f. recreational therapy I l I 2 I 3 I 4 I . 2 O 13 29 g. socialwork IlI2I3I4I 9 O 15 19 h. childcare I1I2I3I4I . s o i: 25 i. housekeeping I 1 I 2 I 3 I 4 I l- 0 li‘. 27 j. errand running I l I 2 I 3 I 4 I 6 O 11 25 it. home meal preparation I l I 2 I 3 I 4 I 7 0 11 26 l. transportation I l I 2 I 3 I 4 I . , 1 o 11 31 in. basic nursing I 1 I 2 I 3 I 4 I ,. O C 12 32 3 n. client education about hospice I l I 2 I 3 I 4 I ' . 5 9 £3 26 0. emergency answering service I l I I I 4 I A c 1:. 23 p. hospice doctor for patient consultation I 1 I 2 I 3 I 4 I 5 , , 12 o :52 17 q. hospice doctor for patient management I 1 I 2 I I 4 I 15 O 16 ‘C r. occupational therapy I l I 2 I 3 .'J4 I . ' ( l- 2: s. syzptom control 1 I 2 / 3 ' I t. physical therapy I l I 2 I .1:- 9-5 / a C 2' la u. respiratory / 1 I 2 I 3 I 4 I v. skilled nursing ' ~ I l I .2 I3. I? I 2: c. 1;- 1‘ w. speech control I 1 i 1 .- - 2 I If C if t x. art/music therapy I l I 2 3 ‘ 4 ’ 22 11 7 2 27A. Do you charge, or IN END to charge, patients fees. (circle one) a. no, fees are not or will not be assessed (skip to question 28) b. fees are not or will not be asesed to patients, but to third party payors (skip to 278) c. fees are and will continue to be asessed both to patients and also to third party payors (skip to 278) d. yes, fees are or wil be assesed to patients (skip to 27B) 278. If YES: How are fees amassed? (circle one) 1 a. per hour 1 b. per service 7 c. per visit 6 d. other (please specify) THE FOLLOWING INFORMATION IS ABOUT YOUR PROGRAMS BUDGET ALL RESPONSES WILL REMAIN CONFIDENTIAL. 28. In the space below indicate the total amount of funds your program he received beginning in the year 1978. If you have received no funds put a “0" in the appropriate space. _ i - 27.300 Blank x - 57.033 aim. Median - 450 amount 1579 42 Median-1,769 amount 1921 30 E - 33.100 Blank ii - 67,114 stink - 22 Median - 25,C00 amount 1980 39 Median-(.081. amount 1982(Jan-July 29. Which of the following contribute to your overall budget. ' (circle all that apply) 3],. - .“‘/'.‘l'( ‘53 :Zr 1’ '1‘“ C(I.'{:.'4.:L'(L? 7 a. United Way ' 35 b. private individual donations 35 c. memorials 1‘ d. memberships 1" a. public foundations 15 f. third party insurers g. service organizations h. other (please specify) 18 31. 33 328. 32C. 32D. Do you have or are you planning to seek funds from third party insurers? (circie one) a. yes 11 b. no 15 c. don‘t know Do you have or are you planning to seek funds from private individuals or foundations? (circle one; a. yes 6 b. no 5 c. don‘t know THE FOLLOWISG QUESTIONS REFER TO PA‘I'iENTS OP. FAMILIES :5 YOUR PROGRALZ. 1? YOUR PRDGEAM DOES NOT ACCEPT PATIENTS OR FAMILIES SKIP 1‘0 QUESTION ‘33. .——_~ - . in the space below, please indicate the number of patients/families you have accepted in your program since it began. 1 since inception j ' " ( in the space below, please indicate the average number of PA‘i'iEh‘TS pei month in your program from 197$~1982. Put an "X“ in the space fo those years your program did not see patients. ‘ # patients 1979 f patients 1980 t patients 1981 f patients 1982 (Jan-July l)_ in the space below, please indicate the monthly average number a FAMILIES seer. in your program from 1979-1982. Put an ”X“ in the spacs for any years which your program did not see families. t families 1979 i families 1980 t families 19:! t families 19E2 (Jan-July l) in the space below, write in the average number of days patients remain i your program. average length of stay per patient (in days) (0. V" in the space below, please list any problems your program has faced since i' inception. (For example, problems attracting qualified personnel, or cbtainir funds) ttach a separate page if necessary. Federal legislation (HE 5180 and ..S lSSEHs being debated. The purpose the legislation is to provide Medicaid/Medicare reimbursement for hospi services. Using the scale below, please indicate whether your program (cir. onek - 35 0 5 I. O 0 / 1 / 2 / 3 / d I 5 I 6 Strongly Support lV0 I J. STA-=2 w to“ socm'w 0-- .~--.—J.~-b- Ao-Ll EC. 120 \tsr SACINAI STIEIT tasr LANSth MICHIGAN 43833. ruont 337-135: November 5. 1982 Dear Doctor: Enclosed you will find a self-addressed. stacped survey. The survey contains questions about your awareness and involvement in the field of "hospice care". The ques- tionnaire vas designed by Rs. Lenora Finn Paradis as part of her doctoral dissertation research at Hichigan State University. The topic of her dissertation is. ”The Inte- gration of Hospice Care into the Existing Health Care Delivery System." As the Kichigan State Hedical Society representative to the Hichigan Hospice Organization. 1 am interested in learning about the extent to uhich physicians' knov about and participate in hospice programs. Therefore. I encour- age you to take a minute or two to complete the enclosed questionnaire. The results of the survey will be reported in an upeocing issue of Xichigan Hedicine. If you have any questions or vould like more information about hospice programs in Hichigan. please contact Hr. Kevin Kelly at HSKS headquarters ($17-337-l351). Thank you for your participation. Sincer / 0 2. Joe Alberh HD P.S. Please try to return the enclosed survey form prior to November 26. I thank you in advance for your response tc this survey. _M’*. W. W. “rayon: N Xovenber 9, 1982 Enclosed you will find a self-addressed, stamped survey. The survey contains questions about your awareness and involvement in the field of "hospice care". The questionnaire was designed by Hs. Lenora Finn Paradis as part of her doctoral dissertation research at Fichigan State University. The topic of her dissertation is, "The Integration of hospice Care into the Existing Health Care Delivery Systen". As the Dean of the the College of Osteopathic fiedicine at Hichigan State university, I an interested in lcarnins about the extent to which physi- cians know about and participate in hosnice programs. Therefore. 1 en- courage you to take a ninute or two to connlete the enclosed question— naire. Results from the survey will be presented in the College of Osteopathic Medicine ££~runioue. If you have any questions or would like more information about hospice programs in Michigan, please contact Ms. Lenora Finn Paradis at (517) 353-0676. Thank you for your participation. Sincerely, Xyron S. flager, D.O. Dean HSX:LFP::pv , P.S. Please try to return the enclosed survey fcrr prior to hoverbcr -6th. APPENDIX 15 ~o 0‘ OJ Kov mbcr 5, 1 Dear Enclosed you will find a self-addressed. stamped survey. The survey contains cuestions about your awareness and involvenent in the field of "hospice care." The questionnaire was desirned-by~Hs. Lenora Finn Paradis as part of her doctcral dissertation research at Michigan State University. The topic of her dissertation is, "The Integration of Hospice Care in to the Existinr Health Care Delivery System." As the President of the Michigan Home Health Assembly. 1 an interested in learning about the extent to which Home Health Agencies participate in hospice programs. Please take a few minutes to complete the enclosed questionnaire. The results of the survey will be reported to you shortly after the data has been received. _Elease connlcte the survev by Novenber 26. If you have any questions or would like more infornation about hospice procrans in Vichigan please feel free to contact Ms. Lenora Finn Paradis at (517) 353-0676. Thank you for your assistance. I'm sure the infernation will be useful for all of us. Sincerely, Ray Hollers Director KH/crd Enclosure canon: 16 tatenent on the Purpose of Hospice Dissertation Research Lenora Tinn Paradis Xany people have asked me to detail, in writing. the purpose of :y research on the growth and development of hospice procraas in niobigan. This stateaent was developed as a broad overview of the purpose of the research, its design and ultinate use. Purpose The research on Richipan hospice procrazs has been designed to serve two purposes. first. to collect descriptive data on the growth and developnent of hospice prograas in nichipan for use by health care providera(uhich includes hospice providers), health care decision nekers and legislators. Second. to provide ecpirical data to assess sociological hypothesis regarding the in- tegration of social movezent organisations into the larger social systez. a: the practical level. the recent upsurge in the nuzber of hospice progress throughout Xichipan has forced health care policycahers to re-esacine the existing health care systec. especially in relation to its provision of care for the dying patient. Yet, the rapid growth in hospice prograzs through- 3 out the state(iro= a handful in 1978 to 53 in 1982) has hanpered the development . of an adequate infornation base retarding hospice progra: structure, policies. . goals. patient load, focus of care, bereavenent programmine. and so on. because l d-!iiculty sharing propra: inicr- tie: and in providing icportant infcrzation ‘ of the lack o: a coordinated data base, hospice programs in Hichigan have had I I to state health care ntlicynauers. ; A: the theoretical level. th study of hospice as a social reverent organ- l itatirn provides ins.;ht for testing sociological thecries about the integration Statement of purpose of hospice dissertation research p 2 for the purposes of this research. a social novenent is defined as consciously and purposively structured types of collective behavior which sin at changing individuals or societal institution: and structures. An integral part of any social novenent is the organization which coordinates and directs actions toward the nenbors' goals. The process of a social novenent organisation's integration into the larger society nay be for=a1(throuph avowed public agree- ments) or infornal(a response of individuals within a cozzunity). The process by which hospice is integrated into the existing health care syste: is the focus of the research. Survev Technioues The researcher is using survey technioues in cocbination with focussed interviews to obtain a broad base of data about the development of hospice proprams in Hichigan. their growth over tine. their linkages and affiliations with other health care organizations. such as hone health agencies and hospitals. and the direction of their leadership. A closed ended survey has been sent to all hospice proprans listed in the lfichigan Hospice Organization directory. A total of 56 proprans were surveyed, k of which indicated they were not a hospice progran. Response rate fro: the questionnaires was 92:. Ten programs indicated they were hospital-based, two indicated they were freestandin;. and thirtyésix indicated they were hone-based hospice prograns. Ten of the prograns are in the planning stage and have not officially identified thenselves as hospice crcprans. Sin cf the progress in- dicated they were an incorporated hospice propra: which has not yet accepted patient and thirty-one protra-s’tii) indicated tfe" were an incorrzratei trstice progra: and hac accepted patients. Statement of purpose of hospice dissertation research p 3 lnforzation fro: the survey is being su::arited in a report which will be presented at the Richigan hospice Organization annual board pectin; scheduled for Novenber, 1952. ln addition to the closed-ended survey, interviews are planned with hospice staff, volunteers, board nenbers and executive directors. as well as with hope health agencies. hospital acninistrators.. local public health departments and physicians. The findings of the interviews will be incor- porated into the research. Research results will be available to hospice program directors. state legislators and policynakers. and other researchers. Ho individual or progranwill beidentified in.the research and all field notes will be destroyed once the dissertation is cc:;leted and approved by the University. ....--—.