7.! In I. I aflkw. . ywfirfiuwxiz up? .31 ‘ n.‘ .0.“2h.u~§.m-u I . 4:22: ‘ t .1. :ufiufififi .1. .1... an L: L $25,, :2"! #5:: "433-." 3» $53... . , 4......» man 7. :1. . i , its 11;: ‘v 3 ‘ Lrtq: 5‘: . I. 1! inn: , 3L1: “NJ ”in? » M...» . . A . é . wit: 3.}; .. . ‘ -‘ U ATE WNERSITY BRMI mmumuw 1w \Nlmjiil 27 MICHIGAN Immulmuiiu 3 1293 01026 LIBRARY This is to certify that the thesis entitled PERCEPTIONS OF OLDER PERSONS RELATED TO THE ADVANTAGES AND DISADVANTAGES OF ADVANCE DIRECTIVES presented by Jeannette Metes O'Berski has been accepted towards fulfillment of the requirements for Master of Sciencedegree in Nursing , , v 7 " ' ’ /," ‘ Major professor Date 11/2/93 0—7639 MS U is an Affirmative Action/Equal Opportunity Institution 4 ~——-—%,_vv _- ._ me: It RETURN BOXtomnavomlcdnckoutflom yourrooond. TO AVOID FINES mum on or baton m duo. DATE DUE DATE DUE DATE DUE J .1 -: i ii i] MSU I. An Affirmative Action/EM Opportunity Institution W E9 J D C I Illa-9.1 PERCEPTIONS 0F OLDER PERSONS RELATED TO THE ADVANTAGES AND DISADVANTAGES 0F ADVANCE DIRECTIVES By Jeannette Metes O'Berski A THESIS Submitted to Michigan State University in partial fulfillment of the requirements for the degree of MASTER OF SCIENCE IN NURSING College of Nursing 1993 ABSTRACT PERCEPTIONS 0F OLDER PERSONS RELATED TO THE ADVANTAGES AND DISADVANTAGES OF ADVANCE DIRECTIVES BY Jeannette Hetes O'Berski A descriptive study of six persons 65 years and older was conducted to explore older persons perceptions related to the advantages and disadvantages of advance directives for themselves. Six face to face interviews were conducted with six older persons in the community. Each interview was audiotaped and transcribed verbatim. A content analysis was done on the data set and common themes were extracted from the data. The themes that were identified as advantages of advance directives were "security”, I'peace of mind", and "prevention of prolonging an unacceptable quality of life". The themes that were identified as disadvantages of advance directives were "miscommunication", ”depression", and the ”potential for a premature death". The majority of the subjects perceptions were positive or associated with the advantages of advance directives. Through the qualitative analysis it was seen that most of the subjects were able to identify both advantages and disadvantages of advance directives for themselves. Copyright by Jeannette Metes O'Berski 1993 I would like to dedicate this thesis to my husband and life partner, David. iv ACKNOWLEDGEMENTS I wish to thank my thesis committee members for their guidance, expertise, and support in the development and refinement of this thesis, thank you: Dr. Barbara Given, Dr. Sharon King, Dr. Millie Omar, and Dr. Tom Tomlinson. I would like to thank my classmates Judith Fleishman and Shelly Liken for their moral support through graduate school and in the development of this thesis. I especially appreciate Shelly's work in reviewing the transcripts and her assistance with analyzing the data. Finally, I would like to thank my husband, David, for his encouragement and support in the pursuit of our dreams. TABLE OF CONTENTS Chapter I—-THE PROBLEM Page Introduction .......................... 1 Background of the Problem .................... 1 Purpose of the Study ...................... 5 Statement of the Problem .................... 5 Outline of Remaining Chapters .................. 6 Chapter II--CONCEPTUAL FRAMEWORK Introduction .......................... 7 Conceptual Definition of Perception ............... 7 Conceptual Definition of Advance Directives ........... ll Perception and Advance Directives ................ l7 Conceptual Framework ...................... 18 Assumptions ........................... 27 Limitations ........................... 27 Summary ............................. 27 Chapter III--REVIEH OF THE LITERATURE Introduction .......................... 29 Attitudes Related to Advance Directives ............. 29 Summary .......................... 35 Decisions to use Advance Directives ............... 35 Summary .......................... 37 Accuracy of Proxy Decision—Making ................ 38 Summary .......................... 41 Relevance of the Study ..................... 41 Summary ............................. 42 Chapter IV--METHODOLOGY Overview ............................ 43 Research Design and Question .................. 43 Design ........................... 43 Research Question ..................... 44 Operational Definitions .................. 44 Sample Selection ...................... 45 Interview Protocol ....... . ............. 47 Reliability and Validity .................. 48 Data Collection Methods .................. 50 Analysis of the Data .................... 51 Protection of Human Subjects ................ 53 Assumptions and Limitations ................ 53 Summary ............................. 54 vi TABLE OF CONTENTS (cont.) Chapter V--RESULTS OF THE STUDY Overview ............................ 55 Demographics of the Study .................... 55 Participant Perceptions Toward a Durable Power of Attorney . . . 56 Qualitative Analysis .................... 58 Sociocultural Advantage .................. 60 Sociocultural Disadvantage ................. 61 Psychological Advantage .................. 62 Psychological Disadvantage ................. 63 Physiological Advantage .................. 64 Physiological Disadvantage ................. 64 Final Analysis of the Qualitative Data ........... 65 Summary ............................. 66 Chapter VI--SUMMARY AND IMPLICATIONS Overview ............................ 67 Summary of the Study ...................... 67 Purpose of the Study .................... 67 Study Design ........................ 67 The Subjects ........................ 68 Interpretation of the Study Findings .............. 71 Implications for Nursing Practice ................ 77 Educator .......................... 77 Assessor .......................... 79 Advocate .......................... 79 Leader ........................... 80 Implications for Future Research ................ 80 Summary ............................. 83 References ............................. 84 APPENDICES Appendix A ............................. 87 Appendix 8 ............................. 88 Appendix C ............................. 89 Appendix D ............................. 90 Appendix E ............................. 91 Appendix F ............................. 92 Appendix G ............................. 96 vii Table Demographic Data LIST OF TABLES viii LIST OF FIGURES Figure Page 1 Three Determinants of Perception ................. 12 2 Components of Advance Directives ................. 14 3 Relationship Between the Components of Advance Directives and King's (1962) Three Determinants of Perception ......... 19 4 King's Interacting Systems Framework ............... 22 5 Relationship Between Advance Directives and Proxy Decisions and King's Interacting Systems Framework .............. 26 ix CHAPTER I THE PROBLEM Introduction The population of today's society in the United States is changing to one with increasing numbers of older persons. Siegel and Taeuber (1986) report that “the elderly population of the United States is growing much more rapidly than the population as a whole” (p.80). In fact, it is “the fastest growing age segment of the U.S. population" (Siegel & Taeuber, 1986, p.80). Zweibel and Cassel (1989) state ”with the number of persons living past 100 projected to rise from 25,000 in 1989, to over 100,000 in the year 2000, ethical dilemmas about quantity versus quality of life are inescapable" (p.815). Background of the Problem Age and quantity of life versus quality of life are not the only contributors to some of the ethical problems in health care, but also advances in medical technology. ”Advances in health care technology have dramatically increased the ability to prolong life“ (AACN Position Statement, 1990, p.1). Sometimes health care technology makes it possible to sustain life beyond the point in which a person can participate actively and deliberatively in his/her own health care treatment decisions, as in the cases of Karen Ann Quinlan and Nancy Cruzan. In the case of Karen Ann Quinlan, she was diagnosed as being in a 'chronic persistent vegetative state' therefore leaving her incapable of making decisions in her own behalf. Her father ”petitioned the court for appointment as her guardian with express power to discontinue all extraordinary procedures for sustaining her life" (Suber & Tabor, 1982, l 2 p.2250). After much debate and appeals, the New Jersey Court reasoned that the “right to privacy includes the right to decline medical treatment under appropriate circumstances“ (Suber & Tabor, 1982, p.2250) and appointed Karen's father as her guardian. Karen's father then had the authority to make health care treatment decisions in behalf of Karen, as she was unable to do so herself. In exercising his power of substitute judgment, Karen's father asked for the ventilator to be withdrawn. It was, and Karen eventually died a natural death without heroic interventions. A similar and more recent case is that of Nancy Cruzan. Nancy Cruzan was also diagnosed as being in a 'persistent vegetative state' in which her life was dependent on the use of artificial nutrition and hydration. Her parents petitioned the court to have the nutrition withheld. The court ruled against withholding the feeding tube as there was no clear evidence presented which stated Nancy would make the same decision for herself, if she were able. Eventually, the court allowed the feeding tube to be legally removed without repercussion against Nancy's parents or health care providers. As a result, Nancy died several days afterwards. In both of these cases the ethical dilemma of withholding and/or withdrawing life-sustaining treatment for a incompetent person was faced (Orentlicher, 1989). Some people choose to have an advance directive to ensure their treatment preferences will be respected or to appoint a surrogate decision maker and thereby reinforcing their autonomy. "Advance directives are recorded documents of choices made by competent persons intended to influence the care they receive, should they lose the capacity to participate in treatment decisions directly. Advance 3 directives may be informal oral instructions to a physician or family, or they may be formal written documents“ (Hackler et al., 1989, p.2). A living will and a durable power of attorney for health care are the two most common types of advance directives. A living will is a written document that represents the patient's choices regarding specific treatment options which the patient would permit or refuse. However, one problem with a living will is that the language can be vague, causing confusion as to what the patient would want in a variety of situations. A durable power of attorney for health care is a proxy directive in which the patient authorizes a selected person, the proxy, to make health care treatment decisions for the patient when the patient is no longer able to do so for themself (Hackler et al., 1989). An advantage to executing a proxy decision maker is avoiding the obscure language of a living will. However, a concern regarding the use of a durable power of attorney for health care is whether the proxy is acting in the best interests of the patient. A living will and a durable power of attorney for health care are two ways of extending a person's autonomy. Congress has recognized the importance of patient autonomy through the enactment of the Patient Self-Determination Act in October of 1990. The Patient Self- Determination Act became effective in December of 1991. The act ”requires hospitals, nursing homes, and hospices to advise patients on admission of their right to accept or refuse medical care and to execute an advance directive“ (LaPuma, et al., 1991, p.402). Furthermore, health care institutions must maintain written policies on advance 4 directives and provide education to staff on advance directives, to be eligible for Medicare and Medicaid reimbursement, under this act. It is speculated this act will encourage people to enact their own advance directive (LaPuma et al., 1991), by an increased public awareness of their rights. The arguments in opposition of the Patient Self-Determination Act are as follows: a) a paradoxical decreased communication among health care providers and patients may occur regarding advance directives, secondary to the belief that the communication is taken care of at time of admission to the hospital; b) admission to the hospital is an inappropriate time to begin discussion on advance directives often due to the amount of stress the patient and family are experiencing; and c) patients may not receive appropriate education prior to developing an advance directive. In this study the principle investigator examined what the perceived advantages and disadvantages of advance directives were from the patient's perspective. The focus of the research in the area of advance directives primarily has been concerned with the accuracy of proxy decision (Tomlinson. et al., 1990; Uhlmann et al., 1988; Zweibel & Cassel, 1989) and attitudes of physicians related to advance directives (Emanuel & Emanuel, 1989). There has been little research related to the patient's perception of using advance directives for themselves. The rationale for the development of this study was to increase an awareness among health professionals related to elderly persons' perceptions of advance directives, and to add to the existing body of knowledge (Davidson et al., 1989: Gamble et al., 1991). Furthermore, the results of the study may provide information to health care professionals that may help improve communication and educational counseling to patients regarding 5 the use of advance directives. For these reasons, this study was designed to explore the perceptions of persons, 65 years and older, related to the advantages and disadvantages of advance directives for themselves. Purpose of the Study The purpose of the study was to explore and describe the perceptions of persons, 65 years and older, related to the advantages and disadvantages of advance directives for themselves. Statement of the Probleu The study problem that was investigated is: flhat_ang_g1ggzly .- ., ' er .. 10 5 related to th- 2a .. .-- .n. . .. .1 1" . advance directives for themselves; The purpose of investigating this question was to explore and describe elderly persons' perceptions related to the advantages and disadvantages of advance directives for themselves. This study will serve as a pilot study for further research. The study has one variable which is, elderly persons' perceptions related to the advantages and disadvantages of advance directives. The variable of perception is a multidimensional variable, it will be developed from King's (1962) three determinants of perception: a) the physiological determinant; b) the psychological determinant; and c) the sociocultural determinant of perception. These determinants will be discussed in detail in Chapter II. The advantages and disadvantages of advance directives from the elderly persons' perspective, will be developed from the literature (Davidson et al., 1989; Emanuel & Emanuel, 1989; Gamble et al., 1991). The advantages of advance directives will include increased patient 6 autonomy, increased communication among patient's, their families and health care provider, and perceived decrease in the psychological burden of proxy decision making among families and health care providers. Outline of Renaining Chapters This thesis is presented in six chapters. In Chapter I, the introduction, the purpose of the study, the statement of the problem. In Chapter II the concepts, theories, and conceptual framework related to the study's subject matter are presented. The relationship of the concepts are linked to King's (1981) dynamic interacting systems framework. A review of the literature and research related to advance directives are be discussed in Chapter III. The research methodology including the research design, the proposed sample characteristics, the data collection techniques, the instrument, and the analytical procedures are described in Chapter IV. Chapter V consists of a narrative and statistical analysis of the research findings related to the research question. The summary and interpretation of the findings, the implications for advanced nursing practice and primary care, and the recommendations for further research are discussed in Chapter VI. CHAPTER II CONCEPTUAL FRAMEWORK Introduction In this chapter the conceptual framework for this study is presented. The purpose of the conceptual framework is to provide a systematic structure for describing the concepts under investigation. In the conceptual framework an integration of King's (1981) dynamic interacting systems theory and the concepts of perception and advance directives will be discussed. The chapter is divided into three main sections. First, the conceptual definitions of perception and advance directives are presented. Second, an overview of King's (1981) dynamic interacting systems theory are described. Third, a discussion and model of the relationships between the variables and King's (1981) dynamic interacting systems theory will be provided. Conceptual Definition of Perception ”Perception refers both to the experience of gaining sensory information about the world of people, things, and events, and to the psychological processes by which this is accomplished” (Kalat, 1984, p.497). The process of perception involves interpreting a variety of stimuli for the purpose of providing clarity to our world (Goldenson, 1970). In this study the concept of perception will involve not only the sensory reaction of perception but also the cognitive and behavioral processes of perception. Therefore, in the broad sense, the process of perception influences human thinking and behavior. King (1962) defines perception based on the interaction of three broad determinants of perception, which are: the physiological 7 8 determinant, the psychological determinant, and the sociocultural determinant (King, 1962). The interplay of the three determinants of perception helps to explain a person's ideas and behaviors towards a given situation. A description of King's three determinants will be discussed and used as the theoretical framework of perception in this study. According to King (1962) the physiological needs of a person help determine an individual's perception of the individual's environment. Examples of physiological needs are health, fatigue, age, height, weight, and sensory functions. Altered physiological states can affect one's perception, thoughts, and behavior related to one's situation (King, 1962). In the elderly, maintaining one's physical function is vital to one's independence and sense of well-being. An elderly person's physical function includes the person's ability to perform activities of daily living. These activities include being able to ambulate, travel outside the home, prepare meals, bathe and dress one self, and manage the household duties and finances. Physical function can be impaired by poor physical and cognitive health. Losing one's functional ability often leads to a loss of independence and decreased sense of well-being leading to alterations in one's self perception. Alterations in one's self perception due to loss of functional ability and/or poor physical health can influence one's decisions regarding specific health care treatment one would permit or refuse. The elderly may see an advance directive as a way of extending their independence at a time when they are no longer able. 9 Another determinant of perception described by King (1962) is the psychological determinant. The psychological determinant refers to factors affecting an individual's personality such as those things that motivate human behavior, maintain control, and provide for continuity in one's life. King (1962) divides the psychological determinant of perception into three components to further describe this phenomena, they are: psychogenic needs, adaptive and defense mechanisms, and ordering mechanisms. In the following paragraphs these three components will be described in further detail. Psychogenic needs are those needs which motivate a person to behave in a certain way. A person's psychogenic need involves internal desires, feelings, or emotions which drive a person to act in a certain way or pursue a selected goal (King, 1962). Adaptive and defense mechanisms are another component of the psychological determinant of perception. Adaptive and defense mechanisms help an individual cope with anxiety and stress. Examples of adaptive and defense mechanisms are avoidance, confrontation, denial and anger. The third component of the psychological determinant according to King (1962) is called ordering mechanisms. Ordering mechanisms help to maintain continuity and meaning in one's perception and everyday experience. A person's beliefs, attitudes, and values help to sustain continuity in one's cognitive perception and are the major components of. King's ordering mechanisms. The last determinant of perception according to King (1962) is the sociocultural determinant, which is described in the following statement: "The social milieu in which individuals are reared and in 10 which they live provides another set of factors that limit and determine the process of perception and of subsequent behavior (King, 1962, p.65). An individual's cultural beliefs and customs, also influence how he/she perceives his/her reality. Therefore, the socialization process people experience influences their thinking and perception of their environment. The relationship between the patient and the health care provider is a socialization process. The patient has specific perceptions concerning the role and behaviors of his/her health care provider. These perceptions influences what information the patient will share with his/her health care provider. Likewise, the health care provider has certain expectations regarding the behaviors of a patient and the patient's health care needs. It takes time and trust in this relationship to feel comfortable discussing issues surrounding advance directives and end of life treatment. A dialogue related to advance directives between a patient and health care provider may influence the patient's perceptions of the advantages and disadvantages of advance directives. The relationships between family and friends can also contribute to one's perceptions of advance directives. Conversations, values, and past experiences with significant others may direct one's thinking and behaviors related to the advantages and disadvantages of advance directives. In summary, King (1962) provides a general description of perception by categorizing the various components of perception into three determinants: physiological, psychological, and sociocultural. The three determinants help to illustrate how perception influences a 11 person's thoughts and behavior. The three determinants of perception were used as a framework in developing the interview questions used in this study. The physiological determinant of perception was evaluated by statements concerning physical and cognitive function. Affective and feeling statements were questions associated with the psychological determinant of perception. Statements reflecting the sociocultural determinant included questions concerning interpersonal relationships, values and/or beliefs. In Figure 1 the relationships between the three determinants of perception are presented, adapted from King (1962). For purposes of this study the theoretical definition of perception is an individual's cognitive, affective, behavioral and sociocultural interpretation of a given stimuli (King, 1962; King, 1981). Conceptual Definition of Advance Directives "Advance directives are recorded documents of choices made by competent persons intended to influence the care they receive, should they lose the capacity to participate in treatment decisions directly. Advance directives may be informal oral instruction to a physician or family, or they may be formal written documents” (Hackler et al., 1989, p.2). The two most common forms of advance directives are living wills and durable power of attorney. A living will is a written directive with instructions about the kind of health care treatment the patient would permit or refuse. A durable power of attorney is a proxy directive in which the patient authorizes a selected person, the proxy, to make health care treatment decisions for the patient when the patient is no longer able to do so for themselves. A person arrives at his/her advance directive or treatment preferences through a synthesis of his/her own perceptions related to 12 Figure 1. Three Determinants of Perception. PERCEPTION 1. PHYSIOLOGICAL DETERMIN ANT -physiological needs 2. PSYCHOLOGICAL DETERMINANT -personality traits a. psychogenic needs motivation b. adaptive/defensive mechanisms control c. ordering mechanisms continuity 3. SOCIOCULTURAL DETERMINANT Socialization Adapted from King, 3.8. (1962). 13 his/her health values, quality of life, death and dying, benefit versus burden of treatment, and selection of the best proxy that will approximate the patient's wishes. This author's model illustrates the integration of these concepts as an advance directive in Figure 2. The integration of a person's health values helps to determine what he/she would choose as end-of-life treatment and in formulating his/her advance directive, as illustrated by the model. Steel and Harman (1979) wrote 'a value is an affective disposition towards a person, object, or idea. Values represent a way of life, and they give direction to life. Values are those things which make a difference in living” (p.1). If a person's values are those things that make a difference in living and give direction to life, it is easy to see how a person's values help him/her in determining what kind of health care treatment he/she would choose. Haymeck and Taler (1988) support this statement by discussing the use of a person's value system in relation to advance directives. They state: Advance directives: The first, and most desirable, is determination of what that particular individual would want if he or she were capable of expressing such a wish. This determination rests upon having information concerning the patient's value systems prior to the loss of competency. Common sources for such information are a living will, durable power of attorney,...or information from someone who was close to the individual (p.38). Therefore, one can assume a person uses his/her value system in relation to his/her health care treatment choices. Figure 2. Components of Advance Directivg [ PATIENTS ADVANCE DIRECTIVE r I~ PATIENTS PERCEPTION PATIENTS PERCEPTION RELATED To RELATED To QUALITY OF LIFE BEST PROXY PATIENTS PERCEPTION PATIENTS PERCEPTION RELATED To 3mm vs. RELATED TO HEALTH VALUES BURDEN 0F LIFE-SUSTAINING TREATMENT PATIENTS PERCEPTION RELATED TO DEATH & DYING 15 A person's perception of his/her quality of life is also congruent with the determination of one's advance directive. A person's perception of his/her quality of life may be compromised because of his/her state of health and further more because of life-sustaining treatment. Tomlinson and Brody (1988) developed three rationales for the use of ‘Do Not Resuscitate' (DNR) orders in relation to quality of life. They are: no medical benefit, poor quality of life after cardiopulmonary resuscitation (CPR), and poor quality of life before CPR. The rationale for CPR as being of no medical benefit implies the concept of futility, which is when the patient's health status is hopeless and medical interventions such as CPR will not benefit or improve the patient's condition. The second rationale for implementing a DNR order is poor quality of life after CPR. This rationale infers that CPR would result in debilitating the patient to a state in which the patient finds unsatisfactory. Lastly, the third rationale for withholding CPR is because of a poor quality of life before CPR. “Although the patient may survive the resuscitation, his current quality of life is judged to be unacceptable, either to him or to his family if he is incompetent” (Tomlinson & Brody, 1988, p.43). Therefore, the patient's perception related to his/her quality of life is congruent with the determination of his/her advance directive in relation to the use of life-sustaining treatment measures. Moreover, quality of life should be defined by the patient's perception of what ‘quality' means to him/her as an individual. Another aspect of determining one's advance directive is by one's perception of death and dying in relation to life-sustaining treatment. 16 To some, the preservation of life at all costs is not worth living, others view death as an enemy. Each person's individual perceptions and values of death and dying influence his her health care choices and his/her advance directive. The theologian, Daniel Maguire's mother, once said “there are worse things than dying!“ (Maguire, 1984, p..xi). This view point illustrates how life can be seen as painful, in which death then becomes comforting. The delicate balance of weighing the burden versus the benefit of treatment also comes into play when determining an advance directive. According to the Hastings Center (1987) “the obligation to promote the patient's good involves identifying the benefits and burdens of the treatment from the patient's perspective” (p.19). In determining an advance directive it is important for the patient to be accurately informed on the benefits and burdens of life-sustaining treatment so as he/she may make an informed decision. A person's perception of the benefit versus the burden of treatment becomes an individual measurement, however it also involves accurate information sharing on the part of the health care professional that will empower the patient to make an informed choice. The last component depicted within the model is the patient's perception of the best proxy. This element of the model is important because it identifies who the patient perceives will best represent him/her if he/she lost decision making capacity. It is also understandable to assume the patient would choose someone to be his/her proxy who shares similar values related to health and quality of life. "In appointing another person with durable power of attorney, the appointer ideally selects someone who is well acquainted with his/her 17 views and can act from knowledge of them” (Tomlinson et al., 1990, p.54). The advance directive model helps to visualize some of the important components that need too be considered in arriving at an advance directive. Therefore, the theoretical definition of an advance directive is W 0‘ ‘0 .0 If i ' h‘.] h .1_‘ 0A.; 0 ' 0_‘._ l .10 0 . 0 v‘I'f' °r b .e if r:- [1. il' ‘ ‘ 1‘1 0 ' 9‘ . 0 An advance directive is an extension of one's self. Perception and Advance Directives As stated earlier "advance directives are recorded documents of choices made by competent persons intended to influence the care they receive, should they lose the capacity to participate in treatment decisions directly" (Hackler et al., 1989, p.2). Making an advance directive involves the patient effectively deliberating over their perceived situation and choices. Decision-making involves using one's perception of the situation to make a selection between choices for a desired outcome (King, 1981). Therefore, choosing to have an advance directive is a decision-making process in which the three determinants of perception can be applied. The relationship between King's (1962) three determinants of perception and the concept of advance directives are discussed next. From a physiological standpoint a persons age and state of health may influence his/her perception of the advantages or disadvantages of advance directives. For example as people age they undergo physiological changes. Some of the changes associated with aging put the elderly at risk for chronic illness (Heckheimer, 1989). The 18 physiological effects of chronic illness may force the elderly person or their family to make health care treatment decisions. In anticipation of future health care treatment decisions that may arise if the elderly person becomes incapacitated, he/she may perceive the need to have an advance directive to ensure their wishes are respected. An elderly person's perception of the advantages and disadvantages of an advance directive can also be related to the psychological determinant of perception. Some of the psychological tasks associated with aging include reviewing one's life and anticipating one's death (Carter & McGoldrick, 1988). An elderly person may perceive the use of an advance directive as a method of communicating his/her health care choices for a time when he/she no longer can choose for him/herself. The sociocultural determinant of perception may also influence a elderly person's perception of the advantages and disadvantages of advance directives. Hith the media's highly publicized reports of the Nancy Cruzan case and right to die legislation in over 40 states of the union a person's perception related to advance directives through socialization may be influenced (Hackler et al., 1989). A persons cultural beliefs related to quality of life, death and dying, and health care treatment choices may also affect an individuals perception of the advantages and disadvantages of advance directives. A model of the relationships between King's (1962) three determinants of perception and the concept of advance directives is, provided in Figure 3. Conceptual Framework King (1981) developed a conceptual framework for nursing integrating a systems model with the metaparadigm of nursing (i.e., person, 19 Figure 3. Relationship between the components of Advance Directives and King's (1962) Three Determinants of Perception. W PATIENTS PERCEPTION RELATED TO QUALITY OF LIFE ‘ 6 9 -BENEFIT VS. BURDEN OF TREATMENT I W ADVANCE DIRECTIVE PATIENTS PERCEPTION RELATED To (—) DEATH & DYING i W PATIENTS PERCEPTION RELATED TO E 3 -BEST PROXY 20 environment, health, and nursing). The interrelationships between the concepts of perception, advance directives and the concepts in King's (1981) conceptual framework will be discussed. King's (1981) framework is based “on the overall assumption that the focus of nursing is human beings interacting with their environment leading to a state of health for individuals, which is an ability to function in social roles' (p.143). In this statement King links the four metaparadigm concepts. Nursing is identified as a process of human interaction. The goal of nursing is helping individuals maintain their health, and ability to function in their social role. Health is identified as the ”ability to function in one's social roles emphasizes the importance of human interaction. Environment is mentioned in King's overall assumption, but not clearly defined. However, the concept of environment is linked with human beings interacting with it; this implies an exchange process between human beings and the environment. The concept of person is identified as human being and the process of human interaction. King has made specific assumptions related to human beings and nurse-client interaction. King's (1981) assumptions related to human beings are: human beings are social beings that are rational and sentient, capable of reacting, perceiving and controlling their environment in a purposeful manner. King further states that individuals have the ability to think and feel, set goals and make decisions. The focus of King's (1981) conceptual framework is the process of human interaction. Some of the assumptions related to nurse-client interactions are: a) individuals have the right to accurate information about themselves and their health; b) health care professionals have the 21 responsibility of providing accurate information to individuals in order to promote informed decision-making; and c) individuals have the right to be involved in decisions that affect their state of health, and the right to “accept or reject health care" (King, 1981, p.143). The philosophical assumptions that King (1981) makes in relation to human beings and nurse-client interactions are congruent with the concept of advance directives. Advance directives are rational actions taken by individuals to control their environment. Advance directives are based on individuals' perceived reality of their state of health and quality of life, leading to actions they are willing or not willing to take to change their health state. Individuals use information they obtain from health care professionals to make decision regarding accepting or rejecting health care. Therefore, the concept of advance directives is consistent with the assumptions of King (1981) interacting systems framework. As stated earlier in this chapter King's (1981) conceptual framework was derived from a systems approach of viewing human interaction and nursing. There are three dynamic systems within King's interacting systems framework, they are: the personal systems, the interpersonal systems, and the social systems. All three systems are open systems consisting of human beings or groups of human beings interacting with one another, influencing one another, and the world around them for a purpose (see Figure 4). King (1981) uses interrelated concepts to define all three interacting systems. Some of the concepts King (1981) uses to define the three interacting systems can be related to the concept of perception and advance directives. These relationships will be Figure 4. 22 King's Interacting Systems Framework SOCIAL SYSTEMS (Society) INTERPERSONAL SYSTEMS \ (GrouPS) ::> _______ I . I QRSONAL SYSTEMS l (Individuals) | Adapted from King, I.M; (1981). A Theogz for Nursing. New York: John'fliley 8 Sons \________;____________________/ 23 explained. First, an explanation of each system is necessary in order to understand the relationships between the concepts. Personal systems are represented by individual human beings who as stated earlier are rational, sentient, beings capable of thinking, perceiving, setting goals and making decisions. Two of the Concepts which helps to define individuals as systems are: perception and self. King (1981) states “perception is a process of organizing interpreting, and transforming information from sense data and memory. It is a process of human transactions with environment. It gives meaning to one's experience, represents one's image of reality, and influences one's behavior" (p.24). An individual's perception helps one define his/her world and reality through his/her senses. A person's perception is a unique individual experience, it is subjective and directs one's behavior (King, 1981). The concept of self also helps to better understand persons as open systems. According to King (1981) the 'self is all that I am” (p.26). The self encompasses a person's values, needs, beliefs, and attitudes toward life. A person's self is dynamic and complex influenced by his/her past experiences, culture, and ideas about the future. The self interacts with other human beings further shaping his/her perceptions of his/her internal and external world. To achieve one's needs, the self establishes goals and a means to reach them (King, 1981). In summary, King's (1981) personal system describes "an individual's perceptions of self, of body image, of time and space influencing (sec) the way he or she responds to persons, objects, and events in his or her life” (p.19). A person's behavior is influenced by his/her perception of his/her personal system. Hithin King's personal system the concepts 24 of perception and self can be related to the concept of an advance directive. Advance directives are based on a person's perception of his/her quality of life, health values, and willingness to accept or reject treatment. An advance directive is an action taken by and individual which is a reflection of his/her self. An advance directive describes components of a person's self; it gives direction in relation to behaviors, and is goal oriented. The goal being self-determination. Therefore, an advance directive is a decision-making process that guides behaviors based on an individual's perception of self. Interpersonal systems play an important role in the interaction between a proxy and a patient. King (1981) defines interpersonal systems as two or more individuals interacting with one another. Interpersonal systems interact through the process of communication. The outcome of an interaction is a transaction which is goal attainment. The individuals within interpersonal systems react and behave according to their expected societal roles. Some of the concepts of interpersonal systems are interaction, communication, and transaction. The concepts of perception and advance directives interrelate with the concepts of interaction, communication, and transaction within King's (1981) framework. When an individual selects a proxy it is usually based on the individual's perception of who could best be his/her voice if he/she were no longer able to speak for him/herself. There is an interaction between the individual and the proxy in which the individual communicates his/her perceptions of his/her quality of life, values, and treatment preferences to the proxy. If the individual becomes incapacitated the proxy then becomes the individual's decision 25 maker. Ideally, the proxy bases his/her decision for the individual on the interaction between himself/herself and the individual. The process of human interaction can lead to transactions. Transaction according to King (1981) would occur when the individual's preferences are adhered to by the proxy. King (1981) describes social systems as part of a person. A social system is defined by King (1981) 'as organized boundary system of social roles, behaviors, and practices developed to maintain values and the mechanisms to regulate the practices and rules" (p.115). Each individual interacts with social systems and internalizes the values and beliefs of that system. The knowledge and values the individual develops through time influences the decisions one makes and one's behavior. The concept of decision-making is incorporated within social systems. Decision-making is an ongoing process influenced by a variety of factors. King (1981) states ”decisions are usually based on one's values, goals, knowledge, and past experiences” (p.132). Knowledge, information and interactions with interpersonal systems influence a person's decisions. Decisions are purposeful and goal-oriented, directed by one's perception of one's alternatives (King, 1981). Advance directives are decisions regarding a person's preferences related to life-sustaining treatment. Based on King's conceptual framework a model illustrating the relationship between King's dynamic interacting systems and advance directives was constructed (see Figure 5). 26 Figure 5. Relationship between Advance Directives and Proxy Decisions and King's Interacting Systems Framework. K DECISION FOR ADVANCED DIRECTIVE BY PATIENT PROXY 'S\ I DECISION FOR INCOMPETENT PATIENT, BASED ON THE I PATIENTS ADVANCE DIRECTIVE l/ ““““““““““ \ PATIENT & PROXY & CNS INTERACTION I COMMUNICATION & TRANSACTION THROUGH ADVANCE DIRECTIVE ::> I I I I I I I I : ffimmmmmmfifi\ I I BASED ON PERCEPTION l l I OF SELF AND I | I Amwmmmm= > I I :Mmmmmmama' : : I I I I I I I | I I | I I | I I I l l I | l l : I I L____J:> | l ————— "l l I l l I l l | | l I l Adapted from King, LII. (1981). A Theory for Nursing. New York: John Wiley 8 Sons 27 Assumptions The researcher is making the following assumptions in this study: 1. Each study participant had the ability to read and understand the items on the questionnaire. 2. Each study participant responded honestly to the items on the questionnaire. Limitations The following limitations were identified by the researcher for this study: 1. A small convenience sample was used therefore limiting the generalizability of the study's findings to the greater population. 2. The perceptions of the advantages and disadvantages of advance directives by the subjects who agree to participant in the study may differ from those persons refuse to participate in the study. Therefore, the findings may reflect biases and may not represent the perceptions of all person's 65 years and older related to the advantages and disadvantages of advance directives. 3. The study will be a cross-sectional study, data will be collected at one point in time. Therefore, the results may not represent the subjects perceptions when they are actually faced with serious health care treatment decisions. Summary In this chapter the theoretical definitions of perception and advance directives were discussed. The relationships between the concepts were described and illustrated in Figures 1-3. Imogene King (1981) conceptual framework was used and applied to the concepts of perception and advance directives. A conceptual model was developed to 28 illustrate the relationships between King's (1981) dynamic interacting framework and the concepts in this study. In chapter 111 a review of the literature pertinent to advance directives is presented. An analysis of the research methods is discussed and support for this study is provided. CHAPTER III REVIEH OF THE LITERATURE Introduction In this chapter a review of research literature relevant to the advantages and disadvantages of advance directives is provided. The review includes a discussion of the research methodologies, statistical findings, and the strengths and limitations of the studies analyzed. The selection of the research literature analyzed focused on perceptions of advance directives. As defined in chapter two, the concept of perception included attitudes, values, beliefs, thoughts and behaviors. Therefore, this chapter is divided into three sections: studies associated with attitudes of advance directives (Davidson, Hackler, Caradine, and McCord, 1989, and Gamble, et al., 1991), elderly persons' decisions regarding the use of advance directives (Cohen-Mansfield et al., 1991), and the accuracy of proxy decision-making (Tomlinson, et al., 1990, Uhlmann, 1988, and Zweibel & Cassel, 1989). Attitudes related to Advance Directives The attitudes of physicians related to advance directives was examined by Davidson et al. (1989). One thousand two hundred ninety three physicians in Arkansas were surveyed to assess their attitudes and experiences with advance directives, in a descriptive study. Davidson et al. (1989) found 79.2 percent of the participants had a positive attitude toward advance directives while less than 2 percent expressed a negative attitude toward such documents. The purpose of Davidson et al. (1989) study was to describe and examine physicians' attitudes related to advance directives, and to explore physicians' experiences with the use of advance directives. The 29 30 investigators defined attitudes as physicians ‘opinions' of advance directives. The opinions were categorized as either positive or negative. Davidson et al. (1989) identified the positive arguments for the use of advance directives as: a) Extends patient autonomy. b) Relieves patient's anxiety about unwanted treatment. c) Relieves physician's anxiety concerning legal liability. d) Reduces family's strife over treatment decisions. e) Increases physician's confidence in treatment decisions. f) Lowers health care costs. (p.2415) The negative arguments for the use of advance directives according to Davidson et al. (1989) were as follows: a) Violates sanctity of life. b) Extends legal regulation of medical practice. c) Produces an adversarial physician-patient relationship. d) Leads to lower standard of care for all patients. e) Leads to active euthanasia. f) May fail to express patient's current wishes. g) Reduces physicians's authority over treatment decisions. (p.2415) The arguments for and against the use of advance directives were derived from the literature and utilized as a framework in the development of the questionnaire used in Davidson et al. (1989) study. The research design in Davidson et al. (1989) study was a nonexperimental descriptive design. Every physician in Arkansas who was currently practicing internal medicine, family practice, and general practice, were mailed a questionnaire during the fall and winter of 1987-1988, (n-1293). Seven hundred ninety physicians completed the questionnaire giving a 65.2 percent response rate. Included with the questionnaire was a cover letter defining the terms "advance directives," "proxy directive,” and "instruction directive." This was provided to ensure clarity and avoid ambiguity of the terminology. 31 The questionnaire was pilot tested to assess for the internal consistency and content validity of the instrument. The pilot test group consisted of fourteen faculty members affiliated with the University of Arkansas Department of Human Medicine. It was found there the instrument was acceptable for content validity and internal consistency. The questionnaire consisted of 14 questions concerning the arguments for and against advance directives. The responses were ranked on a five-point Likert scale. The level of measurement for the data was an interval measurement because the data was rank-ordered by using a five- point Likert scale. The investigators used multiple regression as the method of statistical analysis. Three different multiple regression models were used to analyze the variables. All of the variables were entered simultaneously in which each variable's contribution was evaluated. The results of Davidson et al. (1989) study indicated that 79.2 percent of the respondents had a positive attitude toward advance directives while 1.5 percent had a negative attitude, 17.6 percent had neutral attitudes and 1.7 percent had no opinion. All of the responses related to the arguments for advance directives ranked greater than 70 percent in the agree or strongly agree selection. Two areas were identified as a concern in greater than 50 percent of the responses, they were: “widespread acceptance of advance directives will lead to less aggressive treatment even of patients who do not have an advance directive“ (p.2416); and “A potential problem with advance directives is that patients could change their minds about heroic treatment after becoming terminally ill” (p.2416). 32 The results of the study also revealed that approximately 62 percent of the respondents felt they had a reasonably good knowledge base of advance directives and 38 percent agreed they were familiar with ' Arkansas state law. Overall the respondents supported the use of advance directives, with patient autonomy as the primary rationale. Some of the physicians surveyed had past experiences with the use of advance directives, for this group of participants an additional eleven question survey was completed. It was found this group of physicians had positive feelings toward the use of advance directives. The variable most associated with the physicians positive feelings was, the significant impact advance directives had with treatment decisions in critical situations. Several strengths can be identified in Davidson et al. (1989) study. The sample size was quite large, therefore increasing the ability to generalize the results to the population because there was a greater number of representation from the population. The tool was pilot tested for internal consistency and content validity by a group of experts and found to be acceptable. Lastly, the statistical procedures used to analyze the data were consistent with the type of data and purpose of the study. The primary limitation with Davidson et al. (1989) study was it's external validity for the sample was limited to the state of Arkansas. Therefore, the results are representative of a regional area. Another limitation was there were no open-ended questions included in the questionnaire. Open-ended questions may have generated additional findings the researcher had not considered, however the analysis would have been more complex. 33 Another study associated with attitudes of advance directives was developed by Gamble et al. (1991). The purpose of this study was to examine the knowledge and attitudes of a group of elderly persons related to the North Carolina Right to Natural Death Act, living wills. The individuals preferences regarding end-of—life treatment and their attitudes of communicating these preferences to family and physicians were also explored. The population of Gamble et al. (1991) study consisted of 75 ambulatory persons between the ages of 60-80 years old. Eighty five percent of the subjects reported their health status as being good or fair. Three of the participants lived in a nursing home. The research design of Gamble et al. (1991) study was a nonexperimental descriptive study. The data was collected at congregate dining sites in a rural county in eastern North Carolina. The method of data collection the investigators used was through a questionnaire: The 19 question survey consisted of questions concerning the following issues: ”perceived status of personal health, knowledge of the North Carolina Right to Natural Death Act and interpretation of the document, treatment preferences in terminal care, desire to discuss the subject with a physician or other person, and attitudes toward such a discussion“ (p.278). The results concerning the category of knowledge related to the North Carolina Right to Natural Death Act were as follows: Fifty-two percent of the respondents said they were aware of living wills, while 64 percent accurately articulated the meaning of living wills. Ironically, however of that 52 percent who report they were knowledgeable of living wills, 36 percent of those persons were not 34 familiar with the document when presented with it. Hhen the subjects were read the North Carolina living will, 60 percent reported not knowing they could sign such a document. The researchers concluded many persons were not knowledgeable of the language used in the living will document. The results concerning the category of attitudes towards end-of—life treatment preferences showed 86 percent of the elderly persons preferred conservative medical care over extraordinary measures if they were diagnosed with a terminal illness, 11 percent wanted everything possible to be done to maintain life, and 3 percent of the subjects wanted their physician to make end-of—life treatment decisions for them. In terms of the results regarding the respondents' attitudes toward communication patterns related to living wills and end-of-life treatment preferences 81 percent of the respondents wanted to discuss their treatment preferences with their physicians. Seventy-nine percent of the elderly persons thought a discussion of these issues should occur when they were well and on a routine visit; and 20 percent felt the conversation was more appropriate when a person was seriously ill. Ninety-three percent of the subjects stated they would elect their spouse or other family member as their proxy decision-maker if they were incompetent, 7 percent wanted their physician to act as their proxy. Gamble et al. (1991) concluded that ”many elderly patients want to share planning for terminal illness with their physicians but have never demanded or been given the opportunity" (p.280). Creating a dialogue through open communication will help to preserve patient autonomy. 35 The researchers reported several limitations in the study. First, the external validity of the study was limited to persons in rural communities with Christian religious beliefs. The reliability and content validity of the questionnaire was not determined. The statistical procedures were not very sophisticated and limited to only percentages of the respondents reports. The strengths of the study included the data was collected by one person, therefore, consistency was maintained. The simplistic design and statistical methods provided for increased clarity in the reporting the results. Overall, the study has more limitations than strengths. The results, therefore, should be scrutinized. The study serves as a good foundation for the development of further studies. Sumner! Both the Davidson et al. (1989) study and the Gamble et al. (1991) study were nonexperimental descriptive studies examining the attitudes of advance directives in two different populations, physicians and elderly persons respectfully. The Davidson et al. (1989) study was more sophisticated in design and analysis than the Gamble et al. (1989) study. Both used questionnaires as the data collection method. The Davidson et al. (1989) study measured attitudes as being either positive or negative while the Gamble et al. (1991) study measured attitudes in terms of knowledge, opinions, and behaviors. Decisions to use Advance Directives Cohen-Mansfield et al. (1991) conducted a study to help clarify issues regarding the use of advance directives in the elderly. There were four main study questions the researchers wanted to investigate: a) what framework do nursing home residents use to make decisions 36 regarding the use of advance directives for themselves; b) what factors influence their decisions; c) will alterations in their cognitive function differ their decisions; and 4) who do nursing home residents want to be their proxy? Basically, Cohen-Mansfield et al. (1991) found nursing home residents used a systematic framework for making decisions regarding the use of advance directives for themselves. Factors that influence their decisions were previous experiences with lifeésustaining treatment, religious beliefs, and their value system. The nursing home resident most often chose more conservative treatment measures in situations where the resident's cognitive function was impaired. Generally, the resident selected a son or daughter as the resident's proxy decision- maker. The population in Cohen-Mansfield et al. (1991) study consisted of 103 nursing home residents who met the qualifications to participate in the study. The mean age of the participants was 84 years old. The subjects for the study were residents of a 550-bed suburban Jewish skilled nursing care facility. The research design was a level two descriptive survey. The research methodology consisted of collecting data through personal interviews and through the use of a questionnaire. The questionnaire was tested for reliability by the test-retest method and found reliable at a 0.81 level. The statistical measures used varied depending on the study question. Descriptive statistics were used to describe preferences for life-sustaining treatment with percentile measurements. A two-way repeated measures analysis of variance was used to examine the 37 relationship between preferences for and against life-sustaining treatment and level of cognitive functioning. A t-test was used to test for the differences between the group of residents who chose to have an advance directive and those who did not. A one-way analysis of variance was used to analyze the relationship between the residents present level of cognitive function and treatment preferences. All of the statistical tests were consistent with the purpose of the study question. The limitations in the Cohen—Mansfield (1991) study includes the external validity of the study. The Jewish cultural background of the study's sample limits the research findings to populations with similar ethnicity. There were several strengths identified associated with the study's design. The statistical measures used were consistent with the purpose of the study. The sample was fairly large and similar in gender, types of disabilities, and cognitive function, to the national average for nursing home residents. The methodology used to collect data was found by the researchers as an effective method to use with nursing home residents. ummar In summary the Cohen-Mansfield et al. (1991) study was a descriptive study investigating the use of advance directives in a population of nursing home residents. It was found nursing home residents have a systematic framework of making decisions regarding the use of life- sustaining treatment. The framework the resident's utilized in making decisions regarding advanced directives was based on the resident's religious beliefs, values, and cognitive function. A questionnaire was 38 utilized and found to be an effective data collection tool. Overall, the study provides a good framework for further studies. Accuracy of Proxy Decision-Making Tomlinson et al. (1990), Uhlmann et al. (1986), and Zweibel & Cassel, (1989) examined the accuracy of proxy decision-making for the elderly patient. All three of the studies used hypothetical scenarios in which the elderly person was incompetent and was in need of a proxy decision-maker for health care decisions. There were three research questions in Tomlinson et al. (1990) research, they were: “Can family members make more accurate substituted judgments than the patient's physician? Can a person adequately predict how well another will be able to make treatment decisions that reflect his or her values? Can the accuracy of substituted judgments be improved by simple strategies on the part of health care providers?" (p.54-55). Forty-three mentally competent elderly persons and 115 proxies, which included spouses, physicians, or significant others, were selected for the study sample. Tomlinson et al. (1990) designed three hypothetical scenarios which described an incompetent elderly person in a critical medical situation and who was in need of medical treatment decisions. The elderly person's caregiver was faced with having to make these decisions. The outcome of the decisions were either life or death. The scenarios were read aloud to the elderly subjects and the proxies. The elderly persons' were asked what treatment modality they would choose for themselves, and the proxy's were asked what treatment modalities they would choose for the elderly person if the elderly person were not able to choose for him/herself. The elderly person's answer was compared to his/her proxy's answer. 39 It was found that the elderly person's decision for life-sustaining treatment depended on the situation presented in the scenario. A common theme when no treatment was opted by the elderly subjects was ”I would be a burden to others.” Family members' decisions showed better agreement with the elderly subjects' decisions than the physicians' decisions. ”The most important results of the study found was that those subjects who were asked specifically to make a substituted judgment did significantly better than those who were asked more vaguely to make their best recommendation” (Tomlinson et al., 1990, p.60). Therefore, the accuracy improved when the proxy was asked to make a decision as the patient would make for him/herself, rather than making the decision in terms of what the proxy would want. Uhlmann et al. (1988) and his colleagues studied “the ability of primary care physicians and patients' spouses to predict preferences of elderly outpatients for resuscitation from cardiac arrest" (p.M115). The study sample consisted of 105 primary care physicians, 90 spouses, and 258 elderly outpatients. The results of the study showed physicians generally underestimated patients' preferences for resuscitation, while spouses generally overestimated patients' preferences for resuscitation decisions. Therefore, the results "suggest physicians and spouses often do not understand elderly outpatients' resuscitation preferences” (Uhlmann et al., 1988, p.M115). The use of proxy decision-making was also studied by Zweibel and Cassell (1989) in relation to using adult middle-generation family members as proxy decision-makers for their elderly family member. Five hypothetical vignettes describing mechanical ventilation, cardiopulmonary resuscitation, chemotherapy, amputation, and artificial 40 nutrition were presented to the elderly person and his/her middle- generation family member. Both groups were then asked to make a treatment decision. It was found that the middle-generation proxies underestimated the elderly person's preferences for resuscitation. It is believed that adult children rate older persons quality of life lower than older persons do for themselves. This was the rationale given for middle-generation proxies opting against treatment (Zweibel & Cassel, 1989). The strengths and limitations of the described studies (Tomlinson et al., 1990; Uhlmann et al., 1988; and Zweibel & Cassel, 1989) are similar as they all were common in design as evidenced by the use of hypothetical scenarios to test the accuracy of proxy decisions. This methodology was identified as a limitation in all three of the studies by the investigators. The reliability of hypothetical scenarios is questionable because the instrument cannot illustrate all the extenuating variables that occur in reality. Second, the subjects in the studies had to make their decisions based on hypothetical circumstances, which could differ if the situation were reality. Therefore, there is a chance that what the proxy said he/she would decide, based on the information given in the scenario would not be what he/she actually would decide if the case were reality. Another limitation common in all of the studies was the possibility of chance agreement between the proxy's decision and the elderly person's decision. Tomlinson et al. (1990) and Uhlmann et al. (1988) provided statistical analysis to measure the level of agreement independent of chance. Although the use of hypothetical scenarios has not been repeatedly tested for reliability, no other tool has been 41 developed or tested to measure the phenomenon of proxy decision—making. The main strengths of the studies were they attempted to parallel real life situations in relation to the use of proxy decision-makers and life-sustaining treatment dilemmas. The study samples were all relatively large, thereby reducing the risk of chance agreement. Tomlinson et al. (1990) and Uhlmann et al. (1988) provided statistical analysis to measure the level of chance agreement. In summary, all three studies examined the accuracy of proxy decision-making in the elderly. Each group of investigators studied different populations of proxies and found similar results. The method of hypothetical scenarios was utilized in each study. Relevance of the Study The current literature related to advance directives has looked at: a) physicians and nursing home residents attitudes related to advance directives; b) older persons decisions regarding the use of advance directives; and c) the accuracy of proxy decision-making. The purpose of this study is to describe older persons perceptions related to the advantages and disadvantages of advance directives for themselves. Through this investigation it is hoped that a better understanding of older persons perceptions related to advance directives will be gained. A better understanding of older persons perceptions related to advance directives will help to provide for improved communication between healthcare professionals and older persons related to such a delicate subject matter. Summary In this chapter the literature related to perceptions of advance directive was described. Three primary areas were reviewed, they were: 42 a) studies associated with attitudes of advance directives (Davidson, Hackler, Caradine, and McCord, 1989; and Gamble, et al., 1991); b) elderly person's decisions regarding the use of advance directives (Cohen-Mansfield et al., 1991); c) the accuracy of proxy decision-making (Tomlinson et al., 1990; Uhlmann, 1988; and Zweibel & Cassel, 1989); d) a description of each study including the strengths and limitations were presented; and e) the relevance of this study was discussed in association with current literature. In Chapter IV, the operational definition of the variable will be discussed. The sample characteristics, research design, data collection methodology, and research questions will be presented. CHAPTER IV METHODOLOGY Overview In this research study the perceptions of persons 65 years and older related to the advantages and disadvantages of advance directives are described. The purpose of this chapter is to explain the research methodologies and design. A description of the variables, the operational definitions, the study's sample, the data collection . methods, analysis plan, and procedures used for the protection of human subjects is presented. Research Design and Question Men A qualitative interview format was used to examine the perceptions of persons 65 years and older related to the advantages and disadvantages of advance directives. A qualitative interview format was chosen because little research is available related to elderly person's perceptions of advance directives (Moody, 1990; Polit & Hungler, 1987). A qualitative interview format will allow for the subjects' open expression of ideas which is ideal for a descriptive analysis. Another rationale for selecting a qualitative design is to develop new knowledge and describe common factors or concepts related to the phenomena of elderly persons' perceptions of advance directives. The study has one variable, elderly person's perceptions, related to the advantages and disadvantages of advance directives. Single variable studies are consistent with the use of descriptive study designs (Brink & Hood, 1988). 43 44 R r h ion The research question for this study is: Hhat are elderly persons' perceptions related to the advantages and disadvantages of advance directives for themselves? Operational Definitions Perception is an individual's interpretation of a given stimuli. The stimuli was a brief definition of advanced directives (Appendix I) and the interview questions and process itself. Perception influences how a person thinks, feels and behaves. As defined in chapter two, the concept of perception involves the interaction of three broad determinants, they are: the physiological determinant, the psychological determinant, and the sociocultural determinant (King, 1962). 1. The physiological determinant of perception has been defined as a person's physiological needs such as health status, sensory function, cognitive function, physical and functional ability. Altered physiological states can affect a person's perception, which in turn affects their thoughts and behaviors. The subjects' responses related to questions number 33 8 34 will reflect the person's perceptions related to the advantages and disadvantages of advance directives, from the physiological determinant. 2. The psychological determinant of perception has been defined as the way in which a person's affect, emotions, and personality contribute to the way in which a person thinks and behaves. The subject's responses to questions number 37 A 38 will reflect the person's perceptions related to the advantages and disadvantages of advance directives, from the psychological determinant. 45 3. The sociocultural determinant of perception has been defined as the way in which interpersonal relationships, personal or social values contribute to a person's actions and thoughts. The subject's responses to questions number 24 3 27 will reflect the person's perceptions related to the advantages and disadvantages of advance directives, from the sociocultural determinant. After the subjects have been asked questions related to the three determinants of perception and have had time to start processing their own perceptions related to the issue of advance directives, two broad open ended questions, number 39 G 40, will be asked pertaining to the advantages and disadvantages related to advance directives in general. The responses to these questions will reflect a summary of the subject's perceptions related to the advantages and disadvantages of advance directives for him/herself. Sampla Salegtjog The population of this study consisted of competent male and female persons 65 years and older who live in the mid-Michigan area. The sample was a convenience sample recruited from various senior citizen sites in the Lansing area. Persons were excluded from the study if they were unable to express themselves verbally and unable to complete the data collection tool. Persons who were hospitalized at the time of the study were not included in the study. Seven elderly persons will be recruited from a variety of settings, including South Hashington Park Apartments, Grange Acres Senior Citizen apartments, a local AARP chapter, and from Michigan State University Alumni volunteer organization. 46 The elderly persons were contacted by the investigator after receiving their name from a contact person at each of the sites. The contact person identified elderly persons who would be willing to participate in the study and seek permission from the elderly person for the investigator to contact him/her by telephone. Once the investigator received the name and telephone number of a potential volunteer for the study, she called the elderly person by telephone, introduced herself and explained the purpose of the study. The length of the initial telephone contact was approximately five minutes in duration. The purpose of the initial telephone contact was to identify potential study subjects, screen subjects for the study's criteria, introduce the investigator to the potential participant, describe the purpose of the study, describe what will be expected of the subject to participate in the study, and arrange for a convenient meeting time and place for the interview. If the elderly person did not meet the study's criteria then the investigator thanked the elderly person for his/her time and kindly terminated the telephone intake interview. The admission criteria for the study's subjects were the following: 1. Competent male or female persons 65 years or older. 2. Competency will be defined as elderly persons who are able to understand and speak the English language and can verbally articulate their ideas to questions. 3. The participant must have at least a basic understanding of Advance Directives, this may be identified as “knowing what a living will is, or has heard of a living will”. 47 4. The participant must not have an Advance Directive to participate in the study. A heterogeneous group of elderly persons was desired because the nature of the study was to describe elderly persons' perceptions of advance directives and to obtain a diversity of viewpoints. The data was collected during a three month period from April, 1992 through June, 1992. The sample size was seven subjects, one subject served as a pilot study subject. A nonprobability convenience sample was used because the total population of persons who have a living will or durable power of attorney is unknown and not accessible to this investigator (Brink & Hood, 1983). Interviaw Eratocol After reviewing the literature on advance directives this researcher developed open-ended questions to assess the perceptions of elderly persons towards the advantages and disadvantages of advance directives. Demographic data will also be assessed to describe the sample. The demographic data included the following information: age, sex, race, religion, occupation, education level, income, marital status, state of health, type of housing, and proximity of significant others. The demographic data was used to describe the sample characteristics. The content questions were developed based on the definition of perception used in this study (King, 1962) and on the identified advantages and disadvantages of advance directives (Davidson et al., 1989; Emanuel & Emanuel, 1989; Gamble et al., 1991). There were three categories of questions pertaining to a person's perception of advance directives, they were: questions relevant to the psychological determinant of perception, questions relevant to the physiological 48 determinant of perception, and questions relevant to the sociocultural determinant of perception. The questions associated with the psychological determinant of perception were affective or feeling questions, the physiological determinant questions were statements related to physical or cognitive function, and the sociocultural questions were value or relationship questions. The content questions were open-ended questions intended to elicit responses from the subjects that reflected their perceptions of advance directives and the advantages and disadvantages of these documents. In order to assess the advantages and disadvantages of advance directives the respondents were asked this question directly. If the subjects were unable to respond to this question then cues related to the advantages and disadvantages of advance directives were utilized. The cues were developed from Davidson et al. (1989) arguments supporting/opposing the use of advance directives, respectfully. Baliabjljty and Validity ”In qualitative research reliability focuses on identifying and documenting recurrent, accurate and consistent or inconsistent features, as patterns, themes, values, world views, experiences, and other phenomena confirmed in similar or different contexts" (Leininger, 1985, p.69). Reliability is an issue of consistency and accuracy. To account for reliability only one trained researcher collected the data, therefore, a consistent method and style of interview was maintained in all interviews. All the human subjects were given the same instructions prior to and during the interview and the same questions 49 were asked to each individual, in order to ensure reliability in a qualitative study. Validity in a qualitative study “refers to gaining knowledge and understanding of the true nature, essence, meaning, attributes, and characteristics of a particular phenomenon under study. Measurement is not the goal; rather, knowing and understanding the phenomenon is the goal' (Leininger, 1985, p.68). Face-to-face interviews allows for the individual expression of ideas and is one method in gain knowledge and understanding of a particular subject. Face-to-face interviews also allows the researcher to question the subjects intensely, therefore clarifying ambiguities and exhausting the research questions. Face-to- face interviews is the ideal method of data collection for qualitative research. The interpretation of the transcripts were reviewed by one of the investigators, thesis committee members, and another trained expert to validate similar or dissimilar characteristics in the data, and to validate the true meaning of the transcripts. Potential threats of validity in a face-to-face interview are: the Hawthorne effect and bias of the investigator. In order to account for the aforementioned threats to validity the investigator used field notes to document the subjects' reactions, feelings, and interruptions at the time of the interview. Another method of ensuring the validity of the questions developed in the study, was to develop the questions from the known literature, this helped to obtain an adequate representation of the topic being studied (Brink & Hood, 1988). The measurement of perception used in this study was developed from King's, (1962) definition of perception. 50 The questions concerning the advantages and disadvantages of advance directives were developed from the literature which included the following authors, Davidson et al., (1989), Emanuel G Emanuel (1989) and Gamble et al., (1991). The understandability of the interview questions was pilot tested in one interview in which the subject was asked to critique the interview questions for clarity. This interview was not counted as one of the study's sample. at ll ion M tho The method of data collection that was used for this level I study is open-ended, face-to-face interviews with volunteer elderly persons. The interview protocol guide was verbally read to each subject, the same format was followed for each subject. The advantage of open-ended interviews allowed for flexibility which enhanced the exploratory nature of the study. Open-ended questions are congruent with the purpose of the study because they allowed for the expression of the subjects ideas reflecting their perceptions related to advance directives. Additionally, this method has a better response rate then questionnaires, clarification of ideas can be expressed in the interview format, and the interviewer can observe the subjects responses (Brink & Hood, 1983). As stated earlier there is little research in the area of advance directives therefore no tool is available to use as a guide in structuring a questionnaire. The open-ended questions were based on the three determinants of perception: physiological, psychological, sociocultural. The order of the questions was in a logical manner with the most sensitive questions in the middle of the 51 interview. The placement of the most sensitive questions is important because at the beginning of the interview the interviewer is attempting to establish trust and at the end of the interview the interviewer is attempting to allow for a successful termination. The interviews took place in the homes of the respondents or a mutually agreed upon designated place, to allow for the comfort and privacy of the respondent. The interviews were tape recorded and verbatim transcripts were made of the interview and entered into the computer using the Ethnograph program for data management. Code numbers were used on the transcripts to maintain confidentiality and anonymity of the study's subjects. The interviews were no longer than 60 minutes in length as not to fatigue the respondents. Post-interview field notes were made to record the time, place, and day of the interview, interruptions or difficulties during the interview, and subjective feelings and reflections of the interview. An i h ta Descriptive statistics were used to describe the sample characteristics in terms of the means, ranges, and percentages. Question numbers 1-19 were analyzed using descriptive statistics. Some of the content questions were analyzed using descriptive statistics as well, these questions will be numbers 20-23, 25, 26, 28-32, 35, 36, 3 41. The audiotapes were transcribed verbatim to analyze the perceptions related to the advantages and disadvantages of advance directives, question numbers 24, 27, 33, 34, 37, 38, 39, 40 were entered into the Ethnograph computer program. The tape recorded transcripts of the interviews were converted to computer files using the Ethnograph 52 computer program. The Ethnograph computer program aided in the management of the data set. The purpose of utilizing the Ethnograph computer program was to eliminate the mechanical tasks of qualitative data analysis and to create an organized output file of coded and sorted files from the original data set. Eliminating the mechanical tasks allowed the researcher to spend more time on analyzing and interpreting the data (Seidel, Kjolseth, & Seymour, 1988). A content analysis of the transcripts was done by the principle investigator. The content analysis was separated into four categories, based on the determinants of perception, each category was coded into four common themes using the Ethnograph computer program. The four categories are identified as follows: 1. Advantages and disadvantages of advance directives related to the psychological determinant. 2. Advantages and disadvantages of advance directives related to the physiological determinant. 3. Advantages and disadvantages of advance directives related to the sociocultural determinant. 4. Advantages and disadvantages of advance directives in general. The themes were reviewed by two nurse researcher who are content experts, the researchers looked for discrepancies in the themes and for accuracy and consistency. Once the themes were agreed upon by the principal researcher and the two nurse researchers, the unified descriptions were coded into the data set using the Ethnograph computer program, the created files of sorted and cross-referenced coded segments. 53 r t i n Specific methods were used to ensure the rights of the human subjects who participated in this study. The principal investigator submitted an application to Michigan State University Committee on Research Involving Human Subjects (UCRIHS) for approval to conduct research on human subjects. All participants were informed of the purpose of the study, how the data would be collected, the interviews would be tape recorded, how the results were to be utilized, and the expected length of time allotted for the interview. Hritten informed consent was obtained from each subject and participation was voluntary. Any individual could withdraw from the study at any time or refuse to participate. Confidentiality and anonymity was maintained by using code numbers on the transcripts. Each subject was assigned a code number for identification on the tape recordings of the interviews and the transcripts. At no time were the subjects names directly linked with the tape recordings of transcripts. The tape recordings were stored in a locked file cabinet at the investigators home after they were transcribed. All the tape recordings will be destroyed once the data has been analyzed to avoid the possibility of identification. Asagmptigna and Limitations 1. Persons who voluntarily participate in studies may not be representative of the population. 2. Not all biases can be accounted for in a small convenience sample. 3. The results of the study cannot be generalized to the population as a whole. 54 4. Persons who live in senior citizen complexes and are members of the AARP may have a greater exposure to issues surrounding advance directives. 5. Not all participants will have the same level of exposure related to the issues surrounding the advantages and disadvantages of advance directives, therefore the definition of advance directives presented to each participant in the study may serve as the stimuli in developing their perception of advance directives. Summary In this chapter the research methodologies and design of this study were explained. A description of the operational definitions, the study's sample, the data analysis, the study's limitations, and the procedures used for the protection of human subjects were discussed. In Chapter V, an analysis of the data will be presented. CHAPTER V RESULTS OF THE STUDY Overview The purpose of this chapter is to present the study findings. The contents of the chapter include: a) description of the sample; b) the study question answered through qualitative analysis; c) final analysis of the data; and d) summary. Demographics of the Sample The purpose of the study was to describe the perceptions of older persons related to the advantages and disadvantages of advance directives. Seven subjects were interviewed during a three month period from April 1992 to June 1992. One interview served as a pilot study to assess the clarity and format of the interview questions. The pilot study interview was not included in the data analysis, therefore N-6. The interview began with a demographic data assessment of the sample. The participants age ranged from 65-87 years of age, with a mean age of 71.8 years old. Sixty-six percent (N-6) of the subjects were female. The female subjects were all widowed. There were two male subjects, one was married and the other was divorced. All of the subjects were retired, caucasian, and of the Christian faith. The formal education level ranged from grade seven to post graduate education. Sixty-six percent (N=6) of the subjects had some college education. One subject reported his/her health to be excellent, three reported their health to be good, and the remaining two reported their health to be in fair condition. Sixty-six percent (N-6) of the subjects had hypertension as a primary health problem. 55 56 Sixty-six percent (N-6) of the subjects resided in an apartment, thirty-three percent (N=4) were home owners. The income range of the participants was from less than 10,000 to 30,000 per year. Only one of the subjects lived with another individual. All of the subjects had next of kin living within a sixty mile radius. None of the subjects had a living will or durable power of attorney. All of the subjects had previous knowledge of advance directives. The subjects reported their previous knowledge of advance directives to mostly information from the media they have seen or read about. Only one subject had a discussion with his/her family regarding a living will, none of the subjects had discussed advance directives with their health care provider. Four of the subjects stated they would have family members serve as their proxy, the other two subjects were unsure who they would ask/trust if they had a durable power of attorney. The two subjects that were unsure who they would trust to be their proxy gave the following reasons: a) one stated she would not know which family member she would choose or if it was right to ask family to make such decisions; and b) the other subject stated she did not have anyone close enough to ask such a thing. See Table 1 for summary of demographic data. Participant Perceptions Toward A Durable Power of Attorney The purpose of the study was to assess the perceptions of older persons related to the advantages and disadvantages of advance directives for themselves. The study question was ”What are elderly person's perceptions related to the advantages and disadvantages of advance directives for themselves? The study question was answered Table 1. 57 *Not sure who they would trust. Employment Retired Retired Retired Retired Retired Retired Previously Employed No No No No No Yes in Health Care Field? Education Level 1 Year BachelOr Bachelor High 7th Grade Master’s College Degree Degree School Degree Marital Status Widow Widow Widow Married Widow Divorced ] Health Status Good Good Excellent Good Fair Fair I Medical Problems Yes No Yes Yes No No I Medical Diagnosis HTN. HTN HTN Meniere's HTN None COPD Income Level $20- 510— 520-30,000 SIO-