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TELEHOSPICE: CHANGING HEALTH CARE POLICY TO ENHANCE SOCIAL
SUPPORT FOR CAREGIVERS IN RURAL AREAS

presented by

Jennifer L. Gregg

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TELEHOSPICE: CHANGING HEALTH CARE POLICY TO ENHANCE SOCIAL
SUPPORT FOR CAREGIVERS IN RURAL AREAS

By

Jennifer L. Gregg

A DISSERTATION
Submitted to
Michigan State University
In partial fulﬁllment of the requirements
For the degree of
DOCTOR OF PHILOSOPHY
Department of Telecommunication/Mass Media

2002

ABSTRACT
TELEHOSPICE: CHANGING HEALTH CARE POLICY
To ENHANCE SOCIAL SUPPORT FOR CAREGIVERS IN RURAL AREAS
By

Jennifer L. Gregg

Until the early 20th century death could occur at any age, usually from acute
infectious disease or accident (Stillion, 1995). Death in childhood is rare today, however,
because of antibiotics and immunizations. An adult child is much more likely to provide
care for an elderly parent who is slowly dying from chronic illness. Accessing the
services they need may prove to be a signiﬁcant challenge for people living in rural areas
(Buckingham, 1996; Buehler & Lee, 1992).

Hospice caregivers deal with a wide range of stresses every day, both physical
and emotional. Not only is a hospice caregiver dealing with their own emotional
adjustment to the death of a loved one, often a spouse, but also they are managing the
physical symptoms of the illness for the patient. According to the 1997 National
Caregiver Survey, more than 22 million US. households--nearly one-quarter of the
population-contain someone caring for an older relative or friend (Caregiving & Persons,
1997). The value of family caregiving to society is estimated conservatively to represent
nearly $200 billion per year (Caregiving, 2002). Caring for a loved one at the end of life
is difﬁcult, to say the least. Caregivers often feel isolated and experience stress from the
burden of caregiving itself and from balancing caregiving, work, and other family

responsibilities (Caregiving, 2002).

Telemedicine, the use of telecommunication technologies to deliver health
services over a distance, may be one means of potentially alleviating the stress on
caregivers. The purpose of this dissertation was to examine the role of telehospice in
providing support to caregivers of hospice patients. The researcher's goal was to evaluate
the feasibility of using telehospice to meet the emotional needs of caregivers in the home
setting and to examine the legislative context surrounding this added dimension of
service to caregivers.

Using a framework of social support theory and both qualitative and quantitative
methods, the researcher found that perceived social support was correlated with caregiver
quality of life. Furthermore, caregivers in rural Michigan reported that although they
have a social support network in place, very little respite care is available, and there is
very little, if any, support from extended family. Although pilot projects with hospice
patients have shown that patients and physicians feel telehospice is a beneﬁcial service,
caregivers are hesitant to use telecommunication technologies for their own support.

The researcher concludes that for telehospice to be successful in enhancing social
support networks of caregivers in rural areas, a signiﬁcant education component from
hospice providers is necessary to illustrate beneﬁts of the service for caregivers.

Furthermore, policy needs to be enacted to provide for telehospice services to caregivers.

ACKNOWLEDGMENTS

This project would not have happened without the help of several people. First,
I'd like to thank my dissertation committee, Jacob Climo, Gary Doolittle, and Carrie
Heeter. Your guidance and support has made it possible for me to pursue a line of
research to which I am genuinely dedicated. I look forward toicontinuing our work
together. A special thank-you to my dissertation advisor and mentor, Pam Whitten. I'm
proud to be your ﬁrst doctoral student, and I look forward to future projects together.
Your training has been invaluable. Your friendship has been even more important.
You've shown me how to be a scholar while proving it's also possible to be a mom.

Jeanne Parzuchowski, vice president of research at Hospice of Michigan, was an
essential resource during this project. Thank you for your insight into the challenges and
rewards of end-of-life care. I'd also like to thank Terri Rush at HOM for helping with
subject recruitment and for answering all my questions without laughing.

I'd also like to thank the oﬂice staff of the telecom department at Michigan State,
particularly Denise Mahoney and Vanessa Pollock, for putting up with me for all these
years. I owe you much more than a dozen-or-so plastic forks.

Several people pitched in as babysitters so I could work nearly round-the-clock.
Deb McKenzie and Lisa Meniketti juggled their own schedules so I could have more time
to write. Hillary Morrison holds a special place in our family. Without your care of "the
monsters," I never would have made it. We'll miss you.

Last, but deﬁnitely not least, I'd like to acknowledge the sacriﬁces made by my

husband, Paul Sisler. You took on the role of both mommy and daddy so that I could

iv

pursue my goals. This was not an easy journey and I sincerely appreciate your support

through all of it.

TABLE OF CONTENTS

LIST OF TABLES ........................................................................................................... viii

LIST OF FIGURES ............................................................................................................ x

CHAPTER 1

INTRODUCTION ................................................................................................ 1
Hospice: A Concept of Caring ................................................................................. 3
Purpose of This Study ............................................................................................. 10

CHAPTER 2

LITERATURE REVIEW AND THEORETICAL FRAMEWORK ................................. 12
The Burden of Caregiving ..................................................................................... 13
The Role of Social Support in Caregiving ............................................................. 18
Health Care Policy and End-of-Life Care .............................................................. 25
Communication Technologies ............................................................................... 31
Summary ................................................................................................................ 37
Research Questions ................................................................................................ 38

CHAPTER 3

METHODOLOGY ............................................................................................................ 39
Subjects and Sampling ........................................................................................... 41
Data Gathering Procedures .................................................................................... 43
Data Analysis ......................................................................................................... 48

CHAPTER 4

RESULTS .......................................................................................................................... 51
Frame of Reference ................................................................................................ 51
Research Question 1 .............................................................................................. 58
Research Question 2 .............................................................................................. 68
Research Question 3, Caregiver Sample ................................................................ 71
Research Question 3, Policy Sample ..................................................................... 74
Research Question 4 .............................................................................................. 78

CHAPTER 5

DISCUSSION .................................................................................................................... 84
Caregivers in Rural Michigan ................................................................................ 84
Policy Implications ................................................................................................ 91
Policy Recommendations ....................................................................................... 95
Implications and Future Directions ........................................................................ 98
Strengths and Limitations ...................................................................................... 98

vi

APPENDIX A

CAREGIVER QUALITY OF LIFE INDEX ....................................................... 102
APPENDIX B

MULTIDIMENSIONAL SCALE OF PERCEIVED SOCIAL SUPPORT ........ 103
APPENDIX C

OPEN-ENDED QUESTIONS ............................................................................. 104
APPENDIX D

SOCIODEMOGRAPHICS .................................................................................. l 05
BIBLIOGRAPHY ............................................................................................................ 106

vii

LIST OF TABLES

Table l: Caregiver/Patient Relationship ............................................................................ 54
Table 2: Caregiver Marital Status ...................................................................................... 54
Table 3: Caregiver Gender ................................................................................................. 55
Table 4: Caregiver Age ...................................................................................................... 55
Table 5: Caregiver Education ............................................................................................ 56
Table 6: Caregiver/Patient Living Arrangements .............................................................. 57
Table 7: Caregiver Personal Time per Day ........................................................................ 57
Table 8: Caregiver Time with Patient per Day .................................................................. 58
Table 9: Caregiver Sources of Perceived Social Support .................................................. 60
Table 10: "My friends really try to help me" ..................................................................... 60
Table 11: "I have friends with whom to share my joys and sorrows" ............................... 61
Table 12: "I can count on friends when things go wrong" ................................................ 61
Table 13: "I can talk about my problems with my friends" ............................................... 62
Table 14: "My family really tries to help me" ................................................................... 62
Table 15: "I get the emotional help and support from my family" .................................... 63
Table 16: "I can talk about my problems with my family" ................................................ 63
Table 17: "My farme is willing to help me make decisions" ............................................ 64
Table 18: "There is a special person who is around when I am in need" .......................... 64
Table 19: "There is a special person with whom to share my joys and sorrows" .............. 65
Table 20: "There is a special person who is a source of comfort to me" ........................... 65

viii

Table 21: "There is a special person who cares about my feelings" .................................. 66
Table 22: Caregiver Quality of Life Index ........................................................................ 70

Table 23: Correlation Matrix, CQOL and MSPSS ............................................................ 7O

ix

LIST OF FIGURES

Figure 1: Map of Michigan detailing rural counties participating in the study. 53

CHAPTER 1
INTRODUCTION

Life is a progression from birth to death, and until the early 20"I century, death
could occur at any age, usually from acute infectious disease or accident (Stillion, 1995).
Death in childhood is rare today, however, because of antibiotics and immunizations. An
adult child is much more likely to provide care for an elderly parent who is slowly dying
from chronic illness. Due to advances in medical technology individuals today are living
longer than ever, oﬁen living well beyond what some consider a positive quality of life.

Added to the stresses of advanced age is that of ﬁnancial constraint and access to
services. Patients and their families are faced with rising healthcare costs and insurance
providers that reject claims as "not medically necessary” or "noncovered beneﬁt" when in
fact the person reviewing claims works for the insurance company, has never seen the
patient and probably is not a healthcare practitioner (V ogin, 1999). Furthermore, for
people living in rural areas just getting access to the services they need may prove to be a
signiﬁcant challenge (Buckingham, 1996; Buehler & Lee, 1992) In addition, the United
States is facing a widespread critical nursing shortage. Projections estimate that by the
year 2020 the number of registered nurses working in America will be 20% below the
estimated need (Brownback, 2002). According to the American Hospital Association,
hospitals arotmd the country today have 126,000 nursing vacancies, or 12 percent of
capacity (Janofsky, 2002). Health industry experts predict the number could triple over
the next decade as baby boomers age.

Increased cost, difﬁculty accessing services, and the shortage of nurses and other

providers mean that families and neighbors are taking on more of the responsibility for

providing care to patients near the end of life. While the role of caregiver has many
beneﬁts for both the patient and the care provider, it places considerable stress on the
relationship and on the individual lives. Becoming a caregiver places the individual in a
unique position on two spectra of social support: on the one hand, they are acting
primarily as the donor of support to the person for whom they are caring, on the other,
they are the recipient of support ﬁ'om members of their social network. The caregiver
may be providing extensive personal care such as bathing and feeding the patient, or less
personal care such as cleaning the patient's home, paying bills, or cooking meals. As a
care recipient, the may be receiving ﬁnancial assistance from other family members,
receiving respite care from volunteers and ﬁ'iends, or receiving spiritual or emotional
counseling from professionals. A person's ability to provide support may depend on the
support they receive from their network, and vice versa, the support they receive from
their network may depend on the care demanded by the patient-(Pearlin, Aneshensel,
Mullan, & Whitlatch, 1996).

Nearly 75 percent of caregivers are women. They devote an average of four-and-
a-half years to caregiving, but often 10 or more (NAC & AARP, 1997). Fifteen percent
of all caregivers, and more than 30 percent of those providing the highest levels of care
report signiﬁcant physical and emotional stress (NAC & AARP, 1997). Furthermore,
those who report mental or emotional strain associated with the chronic stress of
caregiving had a mortality risk more than 60 percent higher than individuals in
noncaregiving roles (Schulz & Beach, 1999).

Telemedicine, the use of telecommunication technologies to deliver health

services over a distance, may be one means of potentially alleviating the stress on

caregivers. The purpose of this dissertation is to examine the role 'of telehospice in
providing support to caregivers of hospice patients. The researcher's goal is to evaluate
the feasibility of using telehospice to meet the emotional needs of caregivers in the home
setting. The remainder of this chapter will provide the reader with a brief history of
hospice care in the United States, the background necessary for studying caregiving at the
end of life, followed by a discussion of the purpose of this study.

Hospice: A Concept of Caring

Hospice is care designed to provide comfort and support to patients and their
families at the end of life, when a life-limiting illness no longer responds to cure-oriented
treatments (HF A, 2002a). It represents a supportive philosophy of providing care to
those whose life expectancy is measured in weeks or months. Hospice recognizes death
as the ﬁnal stage of a life journey, and enables patients and families to live their ﬁnal
days to the fullest in the comfort of home, surrounded by loved ones.

Hospice care is primarily provided in the home by a team of specially trained
professionals, volunteers and family members, who address all symptoms of a disease. A
family member typically serves as the primary caregiver and helps make decisions for the
terminally ill patient (NHF, 2002b), though the primary caregiver could be a life partner,
ﬁiend, or other relative. The goal of hospice care is to improve the quality of a patient's
last days by offering comfort and dignity (HFA, 2002a); hospice neither prolongs life nor
hastens death. The core interdisciplinary team of professionals and volunteers provides
medical, psychological, and spiritual support to the terminally ill and their families
(HAA, 2002a), with a special emphasis on controlling a patient's pain and discomfort.

The team, which typically includes the patient's personal physician, hospice physician,

nurses, home health aides, social workers, clergy, volunteers, and speech, physical and
occupational therapists as needed, coordinates an individualized plan of care for each
patient and their family (Web, 2002). Hospice staff is on-call 24-hours a day, seven days
a week, and there is no age limit for hospice care. Though approximately two-thirds of
hospice patients are over the age of 65 (HF A, 2002b), both children and adults can
receive the support of hospice during the ﬁnal stages of life.

The majority of hospice patients have cancer, while others suffer from AIDS, Lou
Gehrig's disease, heart or lung disease, and other fatal conditions (Web, 2002). About 63
percent of all hospice enrollees have at least one type of cancer as their primary diagnosis
(Gage, 2000). The role of hospice remains the same, though, whatever the disease or
condition-40 provide professional medical care, to manage pain and other symptoms, and
to meet social, emotional, and spiritual needs of the patient and their family.

Hospice services for patients and caregivers '

Services available through hospice include: medical and nursing care; personal
care; homemaker services; social work services; grief and counseling services; volunteer
assistance; spiritual care; case management; and family training in patient care (Web,
2002). Because the nature of dying is unique for each person, the goal of the hospice
team is to be sensitive and responsive to the patient's needs. A typical plan of care
includes intermittent nursing care (often one visit each week) with 24-hour on-call
nursing available for emergencies. A registered nurse specially trained in evaluating and
caring for the terminally ill serves as case manager (HPA, 2002b). The case manager is

the ﬁrst and foremost contact the patient and family have with the hospice.

Physician's services, medical appliances and supplies related to the terminal
illness, and outpatient drugs for symptom management and pain relief are also included
in the plan of care (Web, 2002). Short-term acute inpatient care, including respite care, is
also available to hospice patients and their families. The plan of care may also include
home health aide and homemaker services. The hospice home health aide (sometimes
called "CNA") provides basic bedside care for the patient (HPA, 2002a). The home
health aide will often be the team member who actually spends the most time with the
hospice patient and family because they are providing the basic care in the home and
helping the patient with the routine activities of daily living (HPA, 2002a). The home
health aide will make regular visits to the patient and family and provide help as needed
for bathing, dressing, and eating, for example.

Hospice volunteers provide a wide range of services for patients and their
families. The hospice industry started out as a service comprised primarily of volunteers,
and volunteer services of a hospice are actually required by the Medicare federal
standards of care (HPA, 2002c). Sometimes the help provided by volunteers make it
possible for a patient to remain at home till the very end. Volunteers may sit with the
patient, allowing the primary caregiver to go out. They may go shopping, run errands,
prepare meals, read for the loved one and do many other tasks to help out (HPA, 2002c).
Volunteers are a very important part of the hospice team

Non-denominational spiritual counseling is available to patients and their families
upon request. Dietary counseling is available to patients and caregivers, and patients

have access to physical therapy, occupational therapy and speech/language pathology

services if needed. Bereavement services and counseling are available to the patient's
family for approximately one year after the patient's death (HospiceNet, 2002).
mm

Though the concept of hospice dates back to ancient times, it wasn't introduced in
the United States until the 19703. In 1974 the ﬁrst hospice legislation was introduced to
provide federal funds to support hospice programs, however, the legislation was not
enacted (HAA, 2002b). Later that same year, the National Cancer Institute (N CI)
provided funding for Connecticut Hospice, Inc., to begin providing in-home services
(HAA, 2002a). In the late 19703 and early 19808 additional hospices received similar
_ contracts ﬁom NCI (HAA, 2002b). In 1982, Congress provided a Medicare beneﬁt (with
a cap on overall per-patient expenses and inpatient hospital use) for hospice services
(HAA, 2002b), and by the late 1980s the Medicare hospice population dramatically
increased, primarily due to a Congressional mandate to increase reimbursement rates
(HAA, 2002a). The Medicare Hospice Beneﬁt was made permanent by Congress in 1986
(HAA, 2002b), and the reimbursement rate was increased by 10 percent. Today there are
more than 3,100 hospice programs in the United States, caring for nearly 700,000 people '
each year (NHPCO, 2001). In 2000, the Department of Health and Human Services
released "Medicare's Hospice Beneﬁt: Use and Expenditures," conﬁrming cost
effectiveness of hospice in the last six months of life (HAA, 2002b).

While there has been growth in the number of hospices in the last twenty years,
for many reasons only 15 percent of the dying in this country access this specialized
service (Von Gunten, Neely, & Martinez, 1996). Furthermore, while the number of

patients entering hospice continues to grow, the length of stay in hospice is getting

dramatically shorter (Klein, 2000). The average length of stay in 1998 was 59 days,
down 20 percent from 1992 when the average length of stay was 74 days (Klein, 2000).
Furthermore, 28 percent of hospice patients die within weeks or days of enrollment
(Klein, 2000). According to a recent Gallop Poll, 90 percent of Americans would prefer
to be cared for and die in their homes if faced with a terminal illness (Gordon, 2002a).
Nursing homes are often the site of death for many elderly patients, yet nursing home
residents have limited access to hospice care (Zerzan, Steams, & Hanson, 2000).
Challenges in rural areas

For rural populations, hospice expertise may not exist locally (Buehler & Lee,
1992). Buckingham, (1996) reports that hospice is more diﬁicult to access in rural areas.
Fifty-six million Americans live in nonmetropolitan areas. They make up one-ﬁfth of the
US. population but are spread out across four-ﬁfths of the land area (ERS, 2002). There
is a shortage of health providers in rural areas, and even though rural America has 33
percent of the population, only 12 percent of physicians and 18 percent of nurses choose
to practice in rural areas (Buckingham, 1996). While the physician-to-population ratio
has more than doubled since 1960, it has risen by less than 15% in the smallest rural
communities, those of less than 10,000 population (Greene, 1999).

Also, geographically dispersed patients in rural areas are a challarge for hospice
providers. Travel expenses and road conditions pose additional barriers. Because of
these obstacles, many rural residents are forced to use inpatient or long-term care
facilities for hospice services instead of having the choice of dying at home. Also, some
patients experience their illness in isolation, without the support of family or friends

serving in the caregiver role (Smith, 1994). For some, cost may prohibit access to

hospice professionals (Cher & Lenert, 1997). African Americans face additional barriers
to accessing hospice services. For many, there is a lack of knowledge about hospice
services and a lack of trust in the health care system as a whole (Reese, Ahem, Nair,
O'Faire, & Warren, 1999) and fear about their own role in care.

Hospice care is often praised for its focus on emotional, psychological, spiritual,
and social support. It also deals with the emotional impacts of the disease on the patient
and the patient’s family and friends, and offers a variety of bereavement and counseling
services to families before and after a patient's death. Family members are integral
participants in the process as they provide day-to-day care, often stepping into a caregiver
role that is entirely foreign (Brown & Stetz, 1999). For this reason, the hospice team
provides counseling and support to family members as well as patients.

Pain management is integral to excellence in the care of a hospice patient. This
focus on pain as a symptom is due to its frequency; pain is the chief complaint of more
than 70 percent of hospice patients (Cockburn, 1983; Perra & Schonwatley, 2001).
Furthermore, the fear of pain is deeply interwoven into our society’s fear of the dying
process. Researchers have documented that a comprehensive pain assessment is the
cornerstone for creating an effective hospice management plan (Forman & Sheehan,
1996; NCCN, 2000; Petra & Schonwatley, 2001). Pain must be controlled and contained
before other symptoms can be handled effectively (Given, Given, Azzouz, Kozachik, &
Stommel, 2001). Inadequate relief of pain has been shown to be related to depression,
anger, isolation and even thoughts of suicide in a cancer population (Grossman, Sheidler,

Swedeen, Mucenski, & Piantadosi, 1991).

Limited research exists regarding patient assessment of the quality of their care
(Bredart et al., 1999). However, patients have told professionals that care at the end of
life is less than optimal (Emanuel, Alpert, Baldwin Jr, & Emanuel, 2000). Satisfaction
with hospice care appears to be more closely associated with quality of life than physical
symptoms (Tierney, Horton, Harman, & Tierney, 1998). Symptoms do, however, become
important in later stages of hospice care. While pain and symptom management are the
most signiﬁcant factors to patients, other items also are consistently rated as important to
quality at the end of life (Steinhauser et al., 2000). Steinhauser (2000) found that
preparation for death, achieving a sense of completion, being involved in decisions about
treatment preferences, and being treated as a "whole person" were also important to
patients at the end of life. Patients also felt it important not to be a burden on others. In a
recent report from the Robert Wood Johnson Foundation (RWJ, 2001), patients, family
members and other caregivers rated having a nurse with whom one feels comfortable as
one of the top ﬁve attributes important in end-of-life care. Other attributes important to
respondents were: to be kept clean; to be able to name a decision-maker; to know what to
expect about one's physical condition; and to have someone who will listen (RWJ, 2001).

While hospice care may be available, some physicians fail to refer patientsor
provide referrals very late in the course of dying (Johnson & Slaninka, 1999). In fact, a
report by the Robert Wood Johnson Foundation found that physicians often ignore the
last wishes of terminally ill patients, even when patients ﬁled advanced directives
(Gordon, 2002b). Mor, Hendershot, and Cryon (1989) found that use of hospice services
is limited by lack of referrals and general unawareness of available services by the public.

Furthermore, Christakis and Escarce (1996) found that older adults, the very individuals

most likely to need the services, are even less likely to be aware of hospice care.
Prigerson (1991) found that patient acknowledgement and physician disclosure of
terminality were major determinants to access. The role of hope for caregivers also plays
an important part in accessing hospice services. Some caregivers may perceive that
hospice means giving up hope for their loved one (Herth, 1993; Johnson & Slaninka,
1999).

P_ur;pt_)se of This Study

As noted earlier, most patients at the end of life prefer to die at home in the care
of loved ones. Furthermore, due to increases in healthcare costs and shortages in skilled
nursing care, families are looking for alternatives for providing end-of-life care at home.
However, healthcare policy has not kept up with changing medical needs in this country.
Current reimbursement structures for end-of-life care do not allow for alternatives such as
telemedicine. Also, issues of privacy and liability place limits. on the utilization of
technology in healthcare.

In order to fully understand the role that telernedicine might play in the lives of
hospice caregivers, the current research will take a two-pronged approach. First, it is
crucial to speak directly with hospice caregivers to determine their needs. At the same
time, it is vital to examine the current policy structure for hospice in the United States to
understand the potential for shifting delivery systems. In an effort to rigorously study
this context, an appropriate method of inquiry is the case study. According to Yin
(1989), "a case study is an empirical inquiry that investigates a contemporary
phenomenon within its real-life context; when the boundaries between phenomenon and

context are not clearly evident; and in which multiple sources of evidence are used" (p.

10

23). This case study employed multiple methods to study social support within the
context of caregiving. It combined the analysis of quantitative data, policy analysis, and
individual interviews. These methods resulted in an in-depth understanding of the
challenges of being a caregiver and how telemedicine might provide support to
individuals in this role.

This dissertation is composed of ﬁve chapters. The ﬁrst chapter introduced the
concept of hospice care and provided the rationale for the basic issue to be examined.
The second chapter outlines existing research relevant to this study. Chapter three
outlines the methods employed in this study. The fourth chapter presents the results of
the investigation. Finally, chapter ﬁve discusses the implications of the ﬁndings and

provides recommendations for future study.

11

CHAPTER 2
LITERATURE REVIEW AND THEORETICAL FRAMEWORK

Americans are social creatures. For the most part we live in communities, we
attend public schools, we go to birthday parties, and we have friends with whom we
enjoy spending time. These social relationships are believed to enhance our feelings of
self-worth and self-esteem (Antonucci, 1990), and are the very relationships we rely on in
times of need. Social support is the instrumental, emotional and informational assistance
provided to us by others (Miller et al., 2001). It is prevalent in our daily lives and plays
an especially vital role in times of stress. Although social support can be seen in many
ordinary exchanges of daily life, it is by no means universal. Not everyone has access to
supportive relationships. Those with supportive relationships do not beneﬁt from them
equally. In fact, some supportive relationships are actually problematic. As noted
earlier, the purpose of this study is to determine what role, if any, telemedicine might
play in enhancing social support relationships of hospice caregivers. It is important to
determine what roles are particularly important to hospice caregivers, and how to
enhance access to these relationships.

This chapter will begin by providing the context for studying the role of
caregivers and the challenges of those faced with caring for the dying. The next section
will discuss social support and its role in the lives of caregivers. Social support has been
studied extensively for more than 20 years, though conclusively deﬁning it is still elusive.
A brief historical perspective and review of the social support literature will provide the

theoretical framework for the current project. Finally, this chapter will provide a brief

12

history of telemedicine and its role in providing hospice services, concluding with a
discussion of its potential for addressing challenges of hospice caregivers.
The Burden of Caregiving

Hospice caregivers deal with a wide range of stresses every day, both physical
and emotional. Not only are hospice caregivers dealing with their own emotional _
adjustment to the death of a loved one, often a spouse, but also they are managing the
physical symptoms of the illness for the patient. The caregiver may be making ﬁnancial
decisions with which they are uncomfortable or unfarrriliar, making emotional decisions
regarding care of their loved one, and may in fact be dealing with deterioration of their
own physical well-being.

According to the 1997 National Caregiver Survey, more than 22 million US.
households—nearly one-quarter of the population-contain someone caring for an older
relative or friend (Caregiving & Persons, 1997). The majority cf caregivers are women
with an average age of 45 (Wagner, 1997), who report higher levels of depression and
social isolation than male caregivers (Cossette, Levesque, & Laurin, 1995). More than
half of female caregivers are employed full-time (Group, 1997). The value of family
caregiving to society is estimated conservatively to represent nearly $200 billion per year
(Caregiving, 2002).

Research has shown that families provide the overwhelming majority of care at
home for ill people (Given & Given, 1991), although neighbors, friends or other
volunteers may take part in caregiving. Caring for a loved one at the end of life is
difﬁcult, to say the least. Caregiving begins at diagnosis or when the patient ﬁrst

becomes ill, and continues several months after the patient dies (Brown & Stetz, 1999). It

13

includes physical care, economic strain, stress, helplessness and depression (Boucher &
Jackson, 1996), and can be either formal or informal. Caregivers often feel isolated and
experience stress from the burden of caregiving itself and from balancing caregiving,
work, and other family responsibilities (Caregiving, 2002). A major reason for admission
of hospice patients to the hospital is exhaustion of the primary caregiver (Brarnwell,
MacKenzie, Laschinger, & Cameron, 1995).

Brown and Stetz (1999) proposed a theoretical model for people taking care of
ﬁiends or family with terminal illness. Four phases of the model of caregiving include:
(1) becoming a caregiver, (2) taking care, (3) midwiﬁng the death, and (4) taking the next
step. These phases include managing family issues, dealing with the health care system
and preparing for death.

Becoming a caregiver has a profound effect on the lives of caregivers, and often
requires signiﬁcant changes (Brown & Stetz, 1999). For many, signiﬁcant work occurs
at the onset, and may include gathering information about the disease for themselves and
the ill person. Hospice caregivers deal with a range of emotional responses. They may
face emotional shock and disbelief at the patient's diagnosis, and may become a caregiver
as a natural or expected role because of the nature of their relationship with the patient.
Taking care of the patient includes guiding, giving and doing for the patient to meet his
or her needs (Stetz & Brown, 1997). This may include managing family issues, dealing
with the health care system, and preparing for death. Stommel et a1. (1995) found that
caregivers face a wide variety of tasks when caring for a loved one.

As the caregiving role progresses, caregivers take a central role in managing

events and interactions during the ﬁnal days and hours of the patient's death. Midwifing

l4

the death involves providing comfort and coordinating resources during the dying
process. Caregiving at this time can be traumatic, as many caregivers have never
witnessed a death before while also providing care. The ﬁnal step in Brown and Stetz's
model is that of taking the next step. After death occurs, caregivers must work to bring
closure to their caregiving roles. Activities of closure take place during the days and
weeks after the patient's death and require adjustments by the caregiver (Brown & Stetz,
1999).

For some, death brings relief and freedom from intensive caregiving. For others,
the intensity of grief might outweigh the caregiver-'3 sense of relief. Bouton (1996) found
that formalized bereavement services assist in this ﬁnal step (see also Reirner Penner,
1996; Siebold, 1992). Delivery of effective bereavement care is often impeded, however,
because it occurs in isolation from other hospice services (Bouton, 1996). Staff and
volunteers who provide bereavement care do so without the active involvement of the
team that provided hospice services to the patient, even though caregiver bereavement
services are an integral part of the continuum of hospice care.

Literature in this ﬁeld documents the importance of the overall health and well
being for caregivers. Effective services are crucial to minimize the damaging impacts of
caregiver burden. For example, research has shown that increased overall mental health
is associated with a better quality of life for caregivers (Weitzner, Jacobsen, Wagner Jr,
Friedland, & Cox, 1999), while more emotional distress and worsening patient
performance status are associated with poorer caregiver quality of life. For families
living in rural areas, Buehler and Lee (1992) found that the greater the decline of the ill

person and the longer the dying process, the more families saw their role as difﬁcult and

15

perceived resources to be inadequate. Given et a1. (1993) found that patient symptom
severity and patient immobility predicted caregiver burden and depression. As patients'
symptoms and functioning improved, caregivers' negative reactions to caring declined.
Chentsova-Dutton et a1. (2000) found that caregivers reported experiencing high levels of
depression, anxiety, and anger. Hospice caregiving was associated with deterioration in
physical health and in social and occupational functioning. However, awareness of
distress symptoms among hospice caregivers could lead to timely proactive clinical
intervention that may prevent bereavement complications (Given et al., 2001).

Chang et a1. (2001) found that arranging help from conﬁdants and friends was
relatively easy for caregivers, while arranging paid and unpaid help in the home was
more difﬁcult. Difﬁculty in arranging help was signiﬁcantly correlated with caregiver
burden and depression, and negatively correlated with satisfaction (Chang, Brecht, &
Carter, 2001). Chang et al. (2001) also found that younger caregivers reported greater
amounts of burden. The burden of caring for terminal patients often has a negative effect
on a caregivers quality of life (Smeenk et al., 1998), and accumulates over time
(Duijnstee, 1994).

Supmrt for caregivers

Caregivers are both psychologically and physically impacted by the caregiving
process (Baurngarten et al., 1994; Given, Collins, & Given, 1988; Kiecolt-Glaser, Dura,
' Speicher, Trask, & Glaser, 1991; Schulz, Visintainer, & Williamson, 1990; Schulz &
Williamson, 1991). However, support for caregivers provided by hospice care
(McMillan, 1996a) and good terminal patient care appear to ameliorate these negative

effects. Hull (1991) found that 24-hour phone access to hospice nurses was a vital aspect

l6

of hospice care. Caregivers who keep busy, think positively, and learn more about the
patients' illness have better coping strategies (Steele & Ritch, 1996). Hull (1992) found
that caregivers who compared themselves to others in similar situations were encouraged
in their own circumstance and had increased self-conﬁdence. Furthermore, Hull (1992)
found that creating time away from caregiving responsibilities allowed caregivers to rest
and recuperate by participating in other activities and focusing on personal goals.
Caregivers were better able to cope with impending death by shifting their focus to more
controllable activities such as preparing the patient's favorite food. Caregivers who felt
uncertain and out of control were helped by focusing on the present and by taking one
day at a time.

Langner (1993) found that establishing a routine also increased a sense of control
for caregivers. Talking through problems with friends and family was also an effective
coping strategy. Caregivers need encouragement to maintain hope and a positive attitude
so that they can continue caregiving. Ricard (1991) found that caregivers supported by a
neighbor experienced a decrease in emotional distress. Social, volunteer, and
professional supports all demonstrate a positive impact on caregivers (Steele & Ritch,
1996), and those with more ﬁ'equent positive contacts with family and friends report
lower levels of burden than those with less frequent or more negative contact (Li, Seltzer,
& Greenberg, 1997).

Often, responsibilities associated with the caregiving role continue into the
bereavement period. For example, managing health care bills may continue to be time-
consurning as well as challenging. Moving ahead may be facilitated by supportive

services for caregivers. Perhaps caregivers who receive positive feedback from others

17

about their caregiving contribution will reafﬁrm their own role in the dying process.
However, obtaining bereavement services in rural settings is an additional challenge
because of the smaller population (W ilker & Lowell, 1996).

To further understand the responsibilities associated with caregiving it is
important to understand the social network in which a caregiver lives. Although social
support and social network are distinctly different concepts, they are inextricably linked
because all of a person's support is located within the web of their surrounding

relationships (W ellman & Wortley, 1990). As noted in chapter one, the hospice caregiver
I is working with a team of providers from the hospice organization. They may also be
receiving support from family members, neighbors, and member of their religious
community. It is vital that researchers be aware of the caregivers support network, not
just their individual role as spouse, sibling, child or friend.
The Role of Social Suppprt in Caregiving

Social support is a multifaceted concept that has a long history in both sociology
and psychology. In fact, Durkheim (1951) highlighted the importance of social ties in his
classic work on suicide. Freudian theorists often point to problems with attachment and
social relationships in early childhood as leading to psychological problems later in life.
Social support involves a multitude of activities and relationships. Vaux (1988), in fact,
states that "no single and simple deﬁnition of social support will prove adequate because
social support is a metacOnstruct: a higher-order theoretical construct comprised of
several legitimate and distinguishable theoretical constructs" (p. 28).

Cassel (1974) laid much of the groundwork for the study of social support in

health outcomes, focusing on social support and its role in stress-related disorders.

18

Cassel viewed support as being provided by primary groups (family and close friends)
and serving in a protective function, protecting the individual from stressful experiences
(Vaux, 1988). Caplan (1974) extended the study of social support to include groups other
than family and close friends, particularly neighborhood-based groups, community
caregivers such as clergy, and formal caregivers. Caplan emphasized the importance of
support systems for individuals facing everyday demands (Vaux, 1988). Finally, Cobb
(1976) provided an early conceptual deﬁnition of social support in which he proposed
that social support be viewed as information leading a person to believe he or she is cared
for and loved, is valued and esteemed, and belongs to a network of communication and
mutual obligation (Vaux, 1988). Cobb's major emphasis was social support as a buffer
for stress, and concluded that adequate social support can protect people in crisis (Cobb,
1976).

Two general models of social support have come out of years of research: stress-
buffer model and direct effects model. In the stress-buffering model, social support
protects individuals from the effects of stressful conditions. According to Cohen (1985),
a buffering effect is dependent on the level of stress. A direct effect of social support, on
the other hand, occurs no matter what the level of stress (Cohen & Wills, 1985); it is
independent from the Stress process (V aux, 1988). Many previous studies of social
support have found that a direct effect consistently occurs regardless of the severity of
stress while a buffering effect occurs inconsistently or weakly (Hashimoto, Kurita,
Haratani, Fujii, & Ishibashi, 1999). Pearlin et a1. (1996) found, however, that in addition
to direct moderating effects on depression, social support also exerts important indirect

effects by moderating the stressors leading to depression. However, these moderating

l9

effects were only found with instrumental supports, not with emotional supports (Pearlin
et al., 1996). Methodological and conceptual problems cause a great variety of ﬁndings
for these models.

Studies of social support primarily center on three issues: the range of social ties
that are relevant to support, the relative importance of social relationships and behaviors
versus the individual's perception of these, and the forms that support might take (Vaux,
1988). Although the forms and types of support caregivers receive from their network
varies greatly, most forms of support can be categorized as either instrumental or
expressive support (Pearlin et al., 1996). Instrumental support refers to services and
resources to help with caregiving demands. Expressive support is the actions, gestures
and words that engage the caregivers thoughts, feelings, and perceptions (Cohen &
Wills, 1985). Both types of support can be divided into formal or informal support.

Research has demonstrated that the adequacy of social support is directly related
to the reported severity of psychological and physical symptoms (Zimet, Dahlern, Zimet,
& Farley, 1988) Greater amounts of support reduce caregiver burden and increase well-
being (Given, Stommel, Collins, King, & Given, 1990; Stommel, Given, & Given, 1990).
Pearlin et a1. (1996) found that more than 60 percent of caregivers report that there is "no
one who regularly helps to look after the impaired relative" (pp. 285). Clipp (1990)
found that caregivers who continued to maintain their social network through telephone
calls, visits with ﬁiends and family, and club attendance reported high instrumental
support. Conversely, caregivers who report low social networks through these variables
also reported low instrumental support. Furthermore, research has shown that the type of

support has an effect on caregiver burden. For example, Dwyer and Miller (1990) found

20

that informal networks such as family and ﬁiends generally reduce the amount of burden.
Barusch and Spaid (1989) found that formal sources such as paid providers do not
necessarily reduce burden, however, this has been contradicted in later studies by
McMillan (1996) and Given (2001).

Occasionally, social support is unhelpful. It may not be the result of willful
hurting of one person by another, but in fact may occur because of unsuccessﬁrl attempts
at support (Pearlin et al., 1996). For example, a neighbor may provide misguided advice
or have inappropriate timing for offering support. Support is usually given when one
perceives the presence of need for support. Pearlin et al. (1986) found that caregivers
often mask their problems from others. This is especially common among spousal
caregivers who want to shield their adult children from knowing the extent of their own
hardships or the extent of the patient's illness (Pearlin et al., 1996).

Caregivers who have difﬁculty arranging respite care or feel their social support
network is not helpful may be at increased risk for distress. George & Gwyther (1986)
and George (1987) found an inverse relationship between caregiver burden and
satisfaction with support received. Social support may increase caregivers' health
outcomes, but also may cause stress for the caregiver if there is conﬂict within the
support network (V rabec, 1997). Other studies have shown that greater conﬂict in the
caregiver network increases burden and depression (Kiecolt-Glaser, Dyer, &
Shuttleworth, 1988).

Cm’ver isolation
Chang et al. (2001) found that caregivers who were married had less difﬁculty

arranging support, while caregivers who were handling more roles such as employment

21

and caring for other dependents had more difﬁculty arranging help. Female caregivers
and married caregivers reported more ﬁequent contact with members of their social
support network (Chang et al., 2001). Isolation, however, is a common problem for
caregivers. Pearlin et al. (1996) reported that about 60 percent of caregivers reported
seeing friends once a month or less. Among caregivers with relatives in the area, about
one-third reported seeing relatives once'a month or less (Pearlin et al., 1996).

Isolation is the deprivation of social contact and content. It implies barriers to
interaction. Voluntary isolation occurs when an individual disengages himself ﬁ'om
society (Bennett, 1980). For the hospice caregiver, voluntary isolation may be the result
of reﬁrsing to allow others to care for a loved one. Involuntary isolation is the result of
physical deterioration coupled with the death of a spouse and/or other peers (Bennett,
1980). A caregiver may be involuntary isolated because she does not have readily
available respite care for the hospice patient and is therefore unable to maintain her social
network. For the hospice caregiver, isolation may begin during the caregiving process
and may continue even after the death of the caregiver's loved one. Studies have shown
that isolation and lack of connectedness to others are predictors of morbidity and
mortality (LaVeist, Sellers, Elliott Brown, & Nickerson, 1997; Rowe & Kahn, 1997).
Isolation, coupled with other stresses associated with caregiving, could pose a serious
health risk for caregivers.

While isolation and loneliness are not the same thing, isolation often leads to
feelings of loneliness. Isolation, as noted earlier, is often deﬁned as having few contacts
with family and friends, while loneliness is an unwelcome feeling of lack or loss of

companionship (Townsend, 1973). Weiss (1973) even referred to loneliness as emotional

22

isolation. The effects of isolation and loneliness may be reversible through
resocialization and communication (Rathbone-McCuan & Hashimi, 1982).

Clipp and George (1990) found that female caregivers also were most often in
situations of high support and male and older caregivers were most often in low support.
Furthermore, they found low-income caregivers had low support and caregivers with low
life satisfaction also had low support. Interestingly, however, they found that spouse
caregivers providing care at home were likely to have low support, while adult child
caregivers noted an increase over time (Clipp & George, 1990). This suggests that those
in most need of support, older adults, caregivers providing in-home care and those with
low income and low life satisfaction, are also the ones receiving the least support. Rapp
et al. (1998) found that older adult caregivers who were able to create and be a part of
helpful social relationships reported better perceived health, less depression, more
perceived beneﬁts of caregiving, and a better quality of life. V

Race plays a role in determining social support of caregivers. Miller and Guo
(2000) found that white men and women caregivers reported adult children and
friends/neighbors as their largest source of support. African American women also
mentioned adult children and other relatives as the largest source of support, while
Aﬁican American men were more likely to rely on ﬁiends and neighbors. White
caregivers reported larger support networks than African Americans, and were more
likely to use formal resources (Miller & Guo, 2000).

Role of technology in social suppprt
Research has begun to explain how new technologies may support or hinder

social networks. In the much-publicized "Internet Paradox" study, Kraut et al., (1998)

23

found that the Internet actually decreased the size of the individual's social circle and
increased the individual's depression and loneliness. This study has been widely
criticized, however, and Larose, Eastin, & Gregg (2001) in fact found Internet
communication with friends can alleviate depression. In a replication of the "Internet
Paradox" study, Wastlund, Norlander, & Archer (2001) found that no variables used to
measure psychological well-being were correlated with any variable measuring Internet
usage. Communication, including contact with neighbors, friends, and family, and
participation in social groups improves social support and well-being (Cohen & Wills,
1985; Diener, Suh, Lucas, & Smith, 1999). If communication is a user's major reason for
using the Internet, it follows then that the Internet should have positive social effects on
the user's life. In a follow up to the "Internet Paradox" study, (Kraut et al., 2002) found
that any negative effects of using the Internet had dissipated. In fact, the researchers
found that participants experienced positive effects on communication, social
involvement, and well-being from using the Internet. Using the Internet did, however,
have better outcomes for extraverts and those with more social support but worse
outcomes for introverts and those with less support.

Researchers at the University of Washington found that Internet newsgroups and
chat rooms function like offline public places in which people meet and form friendships
(Parks & Roberts, 1998). Friendships formed online were no less valuable than face-to-
face ones, and a signiﬁcant number of them moved from virtual to physical acquaintance.
Studies have shown, however, that heavy e-mail users have weaker social relationships
than those who do not (Riphagen & Kanfer, 1997), and heavy Internet users spend less

time communicating with family members (Cole, 2000). Other studies, however, have

24

found that heavy Internet users report more social support and more in-person visits with
family and friends than those who use it less (Project, 2000). Walther and Boyd (2002)
found that online social support has a number of attractions to users, including
availability at any time and anonymity to others.

Social support has been shown to have a positive effect on health or illness
outcomes (Rowland, 1989), and has been linked with compliance with medical treatment
(Levy, 1983). The beneﬁts of improved mental and physical health from modiﬁed Social
support suggest that social support is an area that may be easy, effective, and economical
in which to intervene (Rowland, 1989). Interventions to increase social support for
caregivers do not take place in a vacuum, however. Researchers and clinicians
attempting to provide innovative ways to increase social support must deal with
economic and political system surrounding health care in this country.

Health Care Policy and End-of-Life Care

Health care policy can either support or impede options for providing innovative
care to patients at the end of life and their families. According to the National Hospice
Work Group (2002), policy makers must address issues regarding patient enrollment in
hospice, hospice enrollment review process, a rural hospice waiver, and ﬁnancing of pain
medications. As for telemedicine, the technology behind the service is advancing faster
than the laws that apply to its use. Three broad issues regarding regulation of
telemedicine are quality of care, access to services, and cost (Volker, 2000; Whitten,

2001).

25

Telemedicine mlicy

Regulation of the quality of care of telemedicine involves licensure, and medical
malpractice, among others. Licensure is a state-based patient protection system (Volker,
2000; Whitten, 2001 ). Because telemedicine has the potential to involve service across
state lines, state cooperation or federal regulation must be considered. The Federation of
State Medical Boards of the United States, Inc., proposes a limited license for physicians
who "regularly or frequently" practice telemedicine (Whitten, 2001). The American
Medical Association, on the other hand, proposes that states require a full license for all
physicians practicing telemedicine within a state (Whitten, 2001). Professional medical
organizations have other recommendations for physician licensing standards. Nurse
licensing must also be addressed for widespread use of telemedicine.

The threat of malpractice action is another issue which impacts the widespread
use of telemedicine. Malpractice liability is a potential concern for practitioners already
dealing with complicated issues due to technology. Telemedicine may in fact affect a
patient's quality of care, and the use of technology itself could lead to malpractice
liability suits. There is no evidence so far, however, that malpractice claims have
increased as a result of telemedicine (Volker, 2000). In fact, telemedicine may reduce the
incidence of malpractice by bringing care to a patient who might not otherwise have
healthcare. Volker (2000) suggests that informed consent may be a more feasible
approach to regulating telemedicine. A patient needs to be advised of possible
alternatives and enough information provided that would enable the patient to make an

informed decision.

26

Access is another issue which must be considered from both a state and federal
viewpoint. At the federal level, the 1996 Telecommunications Act requires the FCC to
ensure that rural health care providers have access to essential telecommunications
systems to deliver services at rates comparable to those offered in urban areas (V olker,
2000). Each state shares the responsibility for implementing the Act. Regulating
software and hardware is another potential deterrent to the diffusion of telemedicine.
Cmrently the FDA is responsible for regulating telemedicine devices. While the FDA
has taken a proactive approach in this area, the guidelines they rely on are vague and
ambiguous (Volker, 2000). Finally, patient privacy and conﬁdentiality must be protected
during telemedical exchanges. The use of telemedicine often increases privacy concerns
because of the transmission and storage of personal information. During a telemedicine
consult, for example, the patient's records and medical history will be shared with
consulting physicians and staffs supporting the telemedicine system (V olker, 2000).
Without privacy protections, telemedicine will not be considered a viable treatment
altemative. The Health Insurance Portability and Accountability Act of 1996 (HIPAA)
required the Department of Health and Human Services to develop regulations relating to
privacy standards (Whitten, 2001). Entities related to the provision of health care must
comply with HIPAA by April 2003. The Bush Administration, however, has proposed to
repeal the privacy provisions of HIPAA (Pear, 2002).

Regulating cost is another primary concern for the successful widespread
implementation of telemedicine. The issue of paying for telemedicine is a complex issue.
The search for cost containment solutions to rising health care costs signal a strong future

for telemedicine (V olker, 2000). As the population ages and-medical science continues

27

to prolong life and cure disease, there will me more chronic conditions needing treatment.
Telemedicine has the potential to address these needs. Medicare has traditionally
covered telemedicine services that do not involve face-to-face interaction with patients
(Whitten, 2001). Medicare now covers consults in professional shortage areas. Home
health visits also pose a unique challenge for reimbursement. Medicare authorizes home
health care agencies to use telemedicine as part of their services, however, telemedicine
consults are not considered visits for purposes of payment (Whitten, 2001). Medicaid
regulation is determined on a state-by-state basis. Telemedicine is covered under
Medicaid in about 20 states (Whitten, 2001).
Hospice p_olicy

The high cost of medical care for the dying raises concerns for families facing the
death of a loved one. Families and care providers are seeking innovative ways to provide
the highest caliber care to patients while containing costs. This is especially important
for families in rural areas. Many people in rural areas are self-employed or work for
small, privately owned business, and may have limited, if any, health insurance (V rabec,
1995). People in rural areas often rely on informal networks of family and friends for
assistance with health care needs (Vrabec, 1995). According to Vrabec (1995), older
adults in rural areas use fewer formal services because of several barriers: l. Inadequate
ﬁnancing of rural health centers; 2. Lack of awareness of existing services; 3. Decreased
availability of health care providers and 4. Geographic distance from services.

Providers who attempt to provide comprehensive care for patients facing fatal
illness must work through complex reimbursement structures (Fowler & Lynn, 2000)

Approximately 75 percent of deaths occur while the patient is in the Medicare system,

28

and reimbursement rules differ for acute settings from long-term care facilities to home
health to physician visits to hospice (Fowler & Lynn, 2000). Consequently, providers
may not know how to bill for appropriate care when a patient is expected to die. Hospice
care, however, is seen as a cost-effective alternative to the high costs of hospitals and
traditional institutional care (HAA, 2002a). Much of the savings is realized because
families provide general services such as meals and personal care. Forty-ﬁve states also
offer hospice care as an option under Medicaid, and hospice is covered under most
private insurance plans, HMOs, and other managed care organizations (HAA, 2002a).
Hospice agencies also rely heavily on grant and community money to support
unreimbursed care for patients with no insurance (HAA, 2002a).

Hospice users tend to be older than the general Medicare population (Gage,
2000). Approximately ﬁve percent of hospice users in 1996 were younger than 65,
compared to 12 percent of all beneﬁciaries (Gage, 2000). Nearly 40 percent were
between 75 and 84 years old, and more than 25 percent were at least 85 years old,
compared to only 10 percent of the total Medicare population. It is estimated that nearly
half of Medicare expenditures are used for care of eventually fatal illnesses (Fowler &
Lynn, 2000) The Medicare Hospice Beneﬁt was implemented in 1983 and is primarily
based on a per diem rate—the home care hospice rate multiplied by the number of days on
service (Fowler & Lynn, 2000). In the late 1980's the Medicare hospice population
dramatically increased, due in part to Congressional mandate to increase reimbursement
rates by 20 percent (HAA, 2002a). In 1996, hospice expenditures from Medicare totaled

$2 billion, up from $8 million in 1984 (Gage, 2000). The number of hospices

29

participating in Medicare increased from 31 in 1984 to nearly 3,000 in 2000 (HAA,
2002a).

Hospice reimbursement under Medicare is quite comprehensive, often including
most prescription drug costs, but is limited to people with a prognosis of less than six
months to live and avoiding hospitalizations and high-tech interventions (Fowler & Lynn,
2000). Under the Medicare Hospice Beneﬁt, patients elect to receive non-curative
treatment and services by waiving the standard Medicare beneﬁts for treatment of a
terminal illness (NHF, 2002a). While receiving hospice services, Medicare will continue
to pay for treatment of health problems not related to the terminal illness (N HF , 2002a).
Patients are eligible for hospice beneﬁts under Medicare for two 90-day periods,
followed by unlimited 60-day periods. The patient must be certiﬁed as terminally ill at
the beginning of each period (HospiceNet, 2002). A recent report from the Institute of
Medicine calls on policymakers, providers and the public to embark on a variety of
measures to improve end-of-life care (Medicine, 1997), including developing "better
tools and strategies for improving the quality of care" (p. 8). Furthermore, recent
recommendations to the Medicare Payment Advisory Commission (MedPAC) include
revisiting the deﬁnition of prognosis for hospice referrals (Von Gunten, Ferris,
D'Antuono, & Emanuel, 2002).

Currently only limited beneﬁts for caregivers are speciﬁcally designated by the
Hospice Medicare Beneﬁt: respite care, chaplain services, and bereavement counseling.
"Respite care may be provided in a Medicare-approved facility such as a freestanding
hospice facility, a hospital, a nursing home or other long-term care facility, which is

covered by Medicare for up to ﬁve days at a time" (NHF, 2002a). To facilitate caregiver

30

well being and quality of life, it is important to consider additional services for them. For
caregivers in rural areas, however, accessing support networks may be difficult.
Communication technologies could play an important role in providing access to friends,
. family, and other supportive individuals.
Communication Technologies

Studies of the introduction of the telephone suggest that it solidiﬁed and deepened
social relationships (Fischer, 1992). What the telephone did in the 19203, new
communication technologies can do in the new millennium. Advances in technology in
recent years have expanded the options for using new communication technologies for
providing home healthcare. As noted earlier, telemedicine, the use of telecommunication
technologies to deliver health services over a distance, may be one means of potentially
alleviating the stress on caregivers.
Histog of Telemedicine

As early as the 19508, innovative applications of telemedicine were being tested.
Wittson and colleagues used telemedicine in 1959 when they set up telepsychiatry
consultations via microwave technology between the Nebraska Psychiatric Institute in
Omaha and the state mental hospital 112 miles away (Jones & Colenda, 1997; Wittson ,
Aftleck & Johnson, 1961; Whitten & Gregg, 2001). Groundbreaking teleradiology work
was attempted that same year in Montreal, Quebec, by Jutra (1959).

The 19703 included a ﬂurry of telemedicine activity as several major projects
developed in North America and Australia (Whitten & Gregg, 2001). Although none of
these projects survived after external funding was withdrawn, program evaluations

suggest that the equipment was reasonably effective at transmitting the information

31

needed for most clinical uses and that users were for the most part satisﬁed (Dongier,
Ternpier, Lalinec-Michaud & Meunier, 1986; Conrath, Puckingharn, Dunn & Swanson,
1975; Fuchs, 1974; Murphy & Bird, 1974).

A series of telemedicine pilot projects were demonstrated in the 19603, 19703, and
19803 (Whitten & Gregg, 2001). The 19903, however, exhibited incredible growth in
telemedicine. In 1990, there were four active telemedicine programs. By 1997, there
were almost 90 such programs (Grigsby & Allen, 1997). Many of these programs were
created because of clinical need (Whitten & Gregg, 2001). For example, the program at
the University of Kansas was originally proposed by rural practitioners who required
access to certain medical subspecialties (Allen, Cox, & Thomas, 1992).

In the early 19903, new and fairly inexpensive digital technologies became
available that enabled video, audio and other imaging information to be digitized and
compressed (Whitten & Gregg, 2001). This facilitated the transmission of information
over land lines with relatively narrow bandwidths, instead of through the more expensive
satellite or relatively unavailable private cable or ﬁber optic lines. Technological
enhancements in recent years have further expanded the telemedicine paradigm.
Telemedicine providers have a wide range of choices for the equipment and delivery
structures they can develop for provision of care.

Tec ' 'ﬁ '0

Traditionally telemedicine analysts have looked at telemedicine services in
relation to the level of interactivity inherent in the service (Whitten & Gregg, 2001). In
the past, this has often meant the amount of bandwidth available. A traditional analog

telephone line can transmit audio signals at a rate of 64 kilobits per second (kbps). This

32

is quite adequate for audio transmission, but when one wishes to send additional
information such as video signals, additional bandwidth is needed to make the
transmission smoother (Whitten & Gregg, 2001). Recent developments in
telecommunications, however, are reshaping the way bandwidth is viewed. For example,
the availability of new transmission services such as cable modems, ISDN, and DSL are
reshaping the amount of bandwidth available for telemedicine applications (Whitten &
Gregg, 2001).

Telemedicine services are typically delivered in three formats: store and forward,
Internet, and synchronous interactive video (Whitten & Gregg, 2001). During a store-
and-forward application, a piece of health data is collected and transmitted to a medical
provider who retrieves the information, analyzes it and responds at his or her convenience
(Whitten & Gregg, 2001). Common store-and-forward applications include
teleradiology, teledermatology, and telepathology. Store and forward telernedical
services are the least interactive of the three modalities.

Internet medicine is now one of the fastest growing segments of health care
(Whitten & Gregg, 2001). It can be interactive, such as chat rooms where multiple
participants are on-line discussing an issue, or simply an information service ﬁom which
users download information. Medical services provided over the internet include medical
equipment and supplies, clinical services, health insurance, medication, alternative
medicine, and health information and continuing education (Steinﬁeld, Whitten and
Kingsley, 1999).

Interactive video (ITV) telemedicine services are fully interactive (Whitten &

Gregg, 2001). In these cases, medical care and education are conducted between two or

33‘

more parties that are both physically present in ﬁ'ont of some form of [TV equipment.
They can see and hear each other in real time and even share documents from which they
are working. Videoconferencing can occur on room-based systems running at very high
transmission speeds or can occur from a desktop personal computer at lower speeds.
There are even videoconferencing technologies that can run through traditional analog
phone lines. Within this category are traditional notions of telemedicine: a physician in a
city treating a senior citizen located hundreds of miles away where he or she would not
have access to this type of physician (Whitten & Gregg, 2001).
Potential for enhancing social supp_ort

On-line networks have the potential to minimize isolation and loneliness and
provide opportunities to meet people with similar interests (White, McConnell, Clipp, &
Bynum, 1999). New technologies have been used successfully to provide support to a
variety of users. Whitten, Collins et al., (1998) found that telehealth equipment could be
installed and used to see patients in their homes. Patients perceived the system as a
valuable resource felt that the technology lived up to their expectations. The CHESS
project at the University of Wisconsin, Madison, is a computer-based system designed to
help individuals cope with a health crisis or medical concern (CHESS, 2000a). CHESS,
or Comprehensive Health Enhancement Support System, combines various services and
resources into one system so patients can easily access information and other support
services as needed. Research has shown that CHESS improves the quality of life for
patients, improves emotional well being, and improves the relationship between patient

and physician (CHESS, 2000b).

34

Similarly, teleconferencing has been used to support isolated rural women
undergoing treatment for breast cancer (Curran & Church, 1998). This study found that
patients were satisﬁed with the teleconferencing technology and that the technology itself
was not a deterrent or inhibiting factor for the self-help support group. Furthermore,
respondents favorably compared the teleconferencing support group to face-to-face
support groups in terms of group cohesion, formation of strong emotional and personal
bonds among participants, and development of positive self-image. The authors
concluded that teleconferencing could help satisfy the needs of isolated rural breast
cancer survivors.

Patients of Kaiser Permanente Medical Center liked using a home video system,
found it simple to use, and stated that it felt very reassuring (Johnston, Wheeler, Deuser,
& Sousa, 2000). Furthermore, staff satisfaction using the system was very high. In
Germany, elderly people were connected via a broadband video communication system
to a telecare center. The system, known as the TeleCommunity, was designed to allow
elderly and mobility-impaired people to live independently while reducing the demand on
social service resources (Erkert, 1997). Patients reported positive satisfaction with the
system and considered it an “irreplaceable enrichment to their lives.” For many of the
elderly clients, the system gave them a feeling of security and involvement. They
reported it was important for them to know daily contact was available to them if needed.

In Japan, videophones using full-color motion pictures and sound have been used
to assess at-home rehabilitation programs of the disabled elderly. Use of the videophone
increased the communication abilities of older persons, stimulated the patients’ attention,

and improved their comprehension and expression. While these results are physical and

35

cognitive, rather than emotional, the videophone improved patients’ self-esteem and
sense of belonging to society (Takano, Nakarnura, & Akao, 1995).

Seniors in isolated areas have used communication networks to communicate with
people their own age through electronic mail, computer bulletin boards and computer
forums, on a wide variety of topics (Elmer-Dewitt, 1990). Use of the Internet and e-mail
has also been shown to have positive effects on seniors in nursing homes (McConatha,
McConatha, Deaner, & Dermigny, 1995; McConatha, McConatha, & Dermigny, 1994).
On-line networks can provide an opportunity to communicate on emotional and social
issues that are particularly relevant to older adults (Furlong, 1989).

Telecommunication technologies have the potential to address barriers to
accessing support services for hospice caregivers. To date, however, telemedicine has
been used to support the care of patients. This dissertation addresses the feasibility of
groundbreaking care for families and other caregivers. Hospice care has been
successfully delivered directly into a patient’s home via telehealth (telehospice) for
clients in underserved rural locations and for those with limited caregiver support
(Doolittle, Yaezel, Otto, & Clemens, 1998; Doolittle, 2000). Whitten, Cook, and
Doolittle (1998) found that caregivers perceived that telehealth might improve access and
conceivably decrease costs for hospice patients. Furthermore, users were generally
satisﬁed with the telehospice system, and nurses and social workers acclimated to the
video calls (Doolittle et al., 1998). Telehospice allowed the nurses to visit and treat
patients without leaving their home/ofﬁces (Doolittle et al., 1998), reinforcing the

advantages of not having to drive long distances in rural settings. Doolittle et al. also

36

examined the cost concerns of telehospice, and for traditional hospice services the cost
was approximately $135 per visit while the telehospice visit was $29 (Doolittle, 2000).

A telehospice pilot program on West Prince Edward Island, Canada, is evaluating
the effectiveness of home-based technology in the provision of palliative care to patients
in rural and isolated communities (OHIH, 2001). Though the hospice infrastructure is
less formalized in Canada than in the US, data from this project suggest telehospice is a
useful tool to supplement volunteer services.

Finally, a bi-state Kansas and Michigan telehospice project addresses the issues of
cost, access implications, and delivery of telehospice service in both rural and urban
settings. Hospice providers are highly satisfaction with the telehospice equipment,
speciﬁcally in terms of increasing access to patients, delivery of hospice care, and overall
enjoyment of the telehospice visits, and felt a high comfort level while using the
telehospice equipment (Whitten & Doolittle, 2002; Whitten, Doolittle, Hellmich, &
Cook, 2000). Hospice patients reported that telehospice increased their access to their
provider, especially during the night hours or in case of an emergency. Further,
caregivers reported that an increased level of comfort was associated with the equipment
due to the video component of the service, suggesting that the equipment could be used to
enhance social support to caregivers.

Summit:

In summary, social support plays in important role in the lives of caregivers of
hospice patients. However, for caregivers in rural areas, accessing those most important
to them may be difﬁcult or even impossible. The use of communication technologies

could prove to be an innovative way to address issues of caregiver health and well-being.

37

This study posits that to fully understand the role that communication
technologies could have in the lives of caregivers in rural areas, one must understand the
importance of social support to caregivers and the political and economic context in
which caregiving at the end-of-life takes place. Therefore, the primary objectives of this
research are (l) to understand the needs of hospice caregivers in rural areas and (2) to
make healthcare policy recommendations for using technology to enhance support to
hospice caregivers. These objectives will be met through a series of speciﬁc research
questions designed to address the issues at hand.

0 RQl: What do hospice caregivers perceive as their sources of social
support?
0 R02: What is the relationship between perceived social support and the
caregiver's quality of life?
- RQ3: What is the potential for telehospice to address caregiver needs?
. o RQ4: What legislative and regulatory mandates are in place that affect
delivery of mediated social support? What changes will be necessary

to facilitate use of communication technologies to support hospice

caregivers?

38

CHAPTER 3
METHODOLOGY

Choosing the appropriate research strategy for collecting and analyzing empirical
evidence is crucial to completing any research project. Each strategy, an experiment, a
survey, a case study, etc., has its own advantages and disadvmtages. One strategy is not
inherently better than another, although one particular strategy may be more appropriate
in a given situation. Choosing the most suitable strategy can be based on 1) the type of
research question being asked; 2) the extent of control an investigator has over actual
behavioral events; and 3) the degree of focus on contemporary as opposed to historical
events (Yin, 1989, 1994). When a study focuses on exploratory "what" questions, as this
one does, the goal is to develop pertinent hypotheses and propositions for further study.
The current research is a case study which uses social support theory as a guide to
investigating the help that caregivers of hospice patients receive from their support
network. Furthermore, this case uses policy analysis techniques to prescribe legislative
and regulatory changes necessary to make telemedicine successful in providing support
to hospice caregivers. According to Yin (1989), "a case study is an empirical inquiry that
investigates a contemporary phenomenon within its real-life context; when the
boundaries between phenomenon and context are not clearly evident; and in which
multiple sources of evidence are used" (p. 23).

After choosing the appropriate strategy it is necessary to determine a plan, or
research design, for the study. The research design, in effect, is a plan for getting ﬁom
here to there, where here is the set of questions to be answered, and there is some set of

conclusions (Yin, 1994). The main purpose of the design is to address what questions to

39

study, what data are relevant, what data to collect, and how to analyze the results (Yin,
1994).

For the case study on rural caregivers, this investigation centers on each
participant's experiences as a hospice caregiver. The purpose is to get at the main
signiﬁcance of the experience to individuals when they discuss their social support
network and the effect being a caregiver has had on their quality of life. To achieve this
goal, a topic-centered narrative was gathered to enable the researcher to identify major
themes, concerns and experiences that relate directly to the individual's adjustment to
becoming a caregiver. Data for part I of this project were gathered through sani-
structured interviews with hospice caregivers. The use of open-ended questions enabled
the participant to describe individual experiences in a coherent manner (Agar, 1980; Agar
& Hobbs, 1985), a "key-informants" approach for collecting data (Pelto & Pelto, 1979).
Key-informants are selected because they are knowledgeable about the topics being
researched. They are also able and willing to communicate their knowledge (Kumar,
Stern, & Anderson, 1993). According to Borg and Gall (1989), using the key-informant
approach has many advantages. Key-informants can "provide insights that no amount of
observation would reveal. They can also provide insights into processes, sensitize the
researcher to value dilemmas, and help the researcher see the implications of speciﬁc
ﬁndings" (p. 399).

A For the policy analysis section of this research project, data were gathered through
analysis of documents and interviews with pertinent pe0ple involved in hospice
governance. The National Hospice Work Group provided archival data related to hospice

regulation and proposed changed to the Medicare Hospice Beneﬁt. Law articles and

40

research reports related to telemedicine were also used as archival data. Gloria Dana,
governmental affairs director for Hospice of Michigan, provided information directly
related to hospice care in the state of Michigan, Ken Drees, technical assistance director
for the National Hospice and Palliative Care Organization provided background
information regarding Medicare and Medicare funding for hospice, as did Ted Feaster of
the Chicago Regional ofﬁce of the Center for Medicare and Medicade (CMS). Finally,
Sally Newman of the F arnily Caregiver Alliance provided information about grassroots
efforts to expand services to caregivers nationwide.
Subﬁtspnd Sm

Hospice caregiver case study

To carry out this study, a purposive sampling technique was used. The population
for part I of this project was English-speaking caregivers of cancer patients living in rural
Michigan who were enrolled in Hospice of Michigan in the last six months. As noted
earlier, cancer is the dominant diagnosis in the hospice population. Because of such
prevalence of cancer among hospice patients, the current project is limited to caregivers
of cancer patients. As part of the requirements of the University Committee on Research
Involving Human Subjects (UCRIHS), one hundred letters to potential participants were
mailed from Hospice of Michigan two weeks prior to telephone interviews. However,
due to the nature of hospice care, one-third of the potential participants had died within
the two weeks before telephone calls could be started. Therefore, ﬁfty-one subjects were
successfully recruited through the research and regional ofﬁces of Hospice of Michigan.

Telephone interviews took place over a three-week period in May 2002.

41

Hospice of Michigan (HOM) is one of the largest nonproﬁt hospice programs in
the United States, serving more than 7,000 patients a year in 45 Michigan counties
(HOM, 2002a). HOM is licensed by the State of Michigan and is certiﬁed by Medicare,
and offers a full range of medical and support services (HOM, 2002a). Services include
physical support such as pain management and symptom control; emotional and spiritual
support; grief support for families and friends after the loved one's death; volunteer
services for respite care, household chores, listening; and ﬁnancial assistance regardless
of the patient's ability to pay (HOM, 2002b). HOM provides 85 percent of care in the
patient's or family's home, at one-third the cost of traditional care (HOM, 2002b).
Research shows that nearly 90 percent of HOM patients experience a decrease in the pain
level within 36 hours of admission (HOM, 2002b).

Hospice of Michigan was originally founded in 1980 as Hospice of Southeastern
Michigan until its merger in 1994 with nine other hospices (HOM, 2002b). It is the
oldest and largest hospice program in Michigan, and serves a wider geographic area than
any other nonproﬁt hospice in the country (HOM, 2002b). It provides 25 percent of all
hospice care in Michigan, and has more than 500 full- and part-time employees, and 900
volunteers (HOM, 2002b). HOM is one of only a few hospices in the world with a
dedicated pediatric team, and was the ﬁrst hospice in Michigan to care for patients with
AIDS (HOM, 2002b).

Policy analysis
Data regarding cost and reimbursement of telehospice was primarily obtained

from Federal documents related to the Medicare Hospice Beneﬁt and ﬁom interviews

42

with relevant experts. Experts also provided information regarding licensure and
liability.

Data Gatheripg Procedures
Hospice caregiver case study

Approval ﬁ'om the University Committee on Research Involving Human Subjects
(UCRIHS) was obtained prior to interviewing. Before data collection, participants were
assigned a code number, and were sent a letter brieﬂy describing the project. At the start
of each interview the caregiver gave verbal consent to continue the interview.
Furthermore, they were reminded of their right to refuse to participate at any time during
the interview. No names or identiﬁers that could single out a caregiver were used.
Participants were assured conﬁdentiality. Each interview took approximately ten to
twenty minutes, and was conduced from the researcher's ofﬁce at Michigan State and
from the researcher's home, primarily because they occasionally took place in the evening
and on weekends.

Because participants were asked open-ended questions about their experience as a
hospice caregiver, and due to typically low response rates of mail surveys, telephone
interviews were used as the primary data collection method when working with
caregivers. Previous research has shown that there are few consistent differences in data
quality between in-person and telephone interviews (Lavrakas, 1998). There are several
advantages to using telephone interviewing. For example, the equipment is readily
available and relatively inexpensive; there are no travel costs associated with the method,
and the minimal long-distance charges are much less expensive than travel costs. Finally,

the interviews were conduced at the convenience of the caregivers, based on the

43

availability. There are a few risks when conducting telephone interviews that must be
addressed. For example, there could be unexpected and unexplained disconnections.
Telephones may strengthen conﬁdentiality, but also limits the interview's knowledge
about the participant's affect. Finally, the length of the interview is necessarily shorter
than face-to-face interviews because most people do not want to spend long periods of
time on the telephone. Despite the lack of indications of affect, the telephone interviews
did communicate the personal and sensitive aspects of the caregivers' perspectives more
clearly than using only numerical data from standardized instruments.

Caregivers were asked to describe what they perceive to be their sources of
support through a series of open- and closed-ended questions. The open-ended questions
allowed the caregiver to volunteer information he or she thought appropriate and was not
led or biased by the interviewer. One problematic area with open-ended questions is
getting the respondent to give full detailed responses (Seidman, 1998). To address this
concern, probes were developed to encourage caregivers to continue, amplify or clarify
an answer. An interview guide was developed to assist in collecting the data from the
interviews. The interview guide was divided into the following four sections:

1. Caregiver Quality of Life Index (CQLI). The CQLI (McMillan, 1996b) was
designed for use speciﬁcally with hospice caregivers and consists of four items that
assess emotional, social, ﬁnancial and physical quality of life. Each item is rated from 0
(lowest quality) to 100 (highest quality), though a modiﬁed lO—point scale was used to
facilitate telephone interviewing. Empirical data have supported both the validity and
reliability of the scale (Salek, 1998). Internal consistency of the index ranges from .76 to

.88. See Appendix A for items of the CQLI.

2. Multidimensional Scale of Perceived Social Support (MSPSS). It is
undisputed that those providing informal care to an ill or disabled older adult are
vulnerable to burden and psychological distress. However, perceived social support can
reduce the detrimental effects of stress on psychological or emotional well being
(Atienza, Collins, & King, 2001). Research suggests that perceived social support is far
more related to predicted outcomes than the actual support received (Huff, 2001). The
MSPSS (Zimet et al., 1988) was designed to assess perceptions of social support from
family, friends, and signiﬁcant others. It consists of 12 items measured on a 7-point
rating scale ranging from very strongly disagree (1) to very strongly agree (7). Reliability
for the scale is .88, and the test-retest reliability for the scale is .85, demonstrating good
internal reliability and adequate stability over time. See Appendix B for items of the
MSPSS.

3. Open-ended questions. Open-ended questions were used to give participants
an opportunity to elaborate about the challenges of being a caregiver, details of their
social support network, and the effect caregiving has on their physical and emotional
health. See Appendix C for open-ended questions asked during telephone interviews.

4. Sociodemographics. Sociodemographics were used for comparison
between caregivers of similar and different backgrounds. See Appendix D for
sociodemographic questions asked during telephone interviews.

Each participant received a letter giving a brief description of the study two weeks
prior to the telephone interview. Subjects were then called and verbal consent for the
interview was obtained. The researcher conducted the telephone interviews during May

2002, using the guide to focus the data-collection process. Flexibility was retained to

45

probe into each participant's statements and replies and to pursue additional issues related
to the focus of the study that were not included in the interview guide. Extensive notes
were taken during each interview. The interviews lasted from 5 to 15 minutes, with an
overall average of 10 minutes.

Through telephone interviews, extensive data were collected in order to produce
an in-depth understanding of the current status of caregiver quality of life and access to
support services in rural Michigan. The data provided by the participants consisted of
words in the form of rich verbal descriptions (qualitative data) as well as quantitative
data. The use of quantitative data allows for comparison of this data with previous studies
of social support, and comparison between measures.

' Policy Analysis

Part II of this project is the policy analysis of current regulations as they pertain to
providing social support services to hospice caregivers, and making recommendations for
providing enhanced services to caregivers. Policy analysis is a social, as well as political,
activity that is more art than science (Bardach, 2000). It involves personal decision-
making that draws on intuition as much as method. It goes well taking intellectual
responsibility for the quality of the work, however. The subject matter of a policy
analysis concerns the lives and well-being of a large number of people (Bardach, 2000).
Also, the process and results of the analysis involve other professionals and interested
parties. These parties contribute to a quality product. Bardach (2000) provides an eight-
step ﬁ'amework for successfully conducting a policy analysis. The ﬁrst two steps,
deﬁning the problem and assembling the evidence, pertain directly to this section of

Chapter 3, data gathering procedures. They will be addressed in Chapter 4, Results. The

ﬁnal six steps, described below as part of data analysis, will be addressed in Chapter 5 as
they pertain to implications of the project and recommendations for policymakers.

0 Deﬁnition of the problem-Deﬁning the problem is a crucial step in a policy
analysis. It gives the researcher a reason for doing the work and a sense of direction for
gathering evidence. It is a deceptively simple step subject to two dangerous pitfalls
(Bardach, 2000). The ﬁrst hazard is implying a solution when deﬁning the problem.
"Projected solutions must be evaluated empirically and not legitimated merely by
deﬁnition" (Bardach, 2000) (p. 5). For example, to say "Federal regulations prohibit
access to services for caregivers in rural areas" implies that the solution to access for
caregivers is to change federal regulations. This cannot be determined until the problem
has been empirically studied.

The second concern when deﬁning the problem is causal claims implied in
diagnostic problem deﬁnitions. Causes of problems must be real, not simply assumed to
be real. The causal chain that is alleged to cause the problem must be evaluated in order
to determine if in fact the problem is actually a problem. For example, to say "Lack of
social support causes a decrease in quality of life” implies that lack of social support is a
problem. The situation must be evaluated to determine if there is a lack of social support
in the lives of caregivers, and if it is in fact causing a decrease in their quality of life. In
the current research, the mblem is that caregivers of hospice patients are undsr;
W.

o Assemble the evidence-Gathering data that can be turned into evidence is one
of the most time consuming tasks of a policy analysis (Bardach, 2000). Gathering data

includes reading documents, hunting in libraries, poring over studies and statistics,

47

interviewing people, and so on. Unlike most social science research, part I of this
dissertation for example, most policy research is derivative rather than original. Analysis
is conducted on data and ideas already developed by others. The policy analyst is
primarily charged with discovering, synthesizing and interpreting existing data.

Original data for the current project will be collected from interviews with
legislative counsel at Hospice of Michigan and with national hospice experts. Existing
data that will play a prominent role in the analysis include state and national government

documents and current research pertaining to telemedicine, among others.

Data Analysis

Hospice caregiver case study

Data from open-ended questions were then content analyzed, allowing the
researcher to analyze the narratives according to established protocols for the project.
Content analysis is a research technique for systematically examining the content of
communications—in this instance, the interview data. Participants' responses to interview
guide questions and related issues that arose during the interview process were read and
ﬁled according to the topic or issue addressed. The topic-centered narrative enabled the
researcher to identify major themes, concerns and experiences that relate directly to the
participant's role as a hospice caregiver. Namely, the information was sorted into
categories. Responses were analyzed thematically with emergent themes ranked by how
ﬁequent they were mentioned and subsequently categorized.

Descriptive statistics from the closed-ended questions were analyzed using SPSS.

48

Polisy analysis
Using the Bardach (2000) framework, the ﬁnal six steps for successfully

completing a policy analysis are described below. These will be addressed in detail in
Chapter 5, Discussion and Implications.

0 Construct the alternatives--Alternatives are policy options or alternative
courses of action to solve or mitigate the problem. In the early stages of analysis it is
important to consider a variety of alternatives. Alternatives might be ideas of political
actors, proposals of relevant institutions, political ideologies relative to the subject being
studied, or interventions in the system that holds the problem in place or keeps it going.
One alternative to be considered during analysis is the status quo, or the outcome if
current conditions continue undisturbed. In later stages of the analysis, however,
alternatives will be limited to three or four principal options. Bardach (2000) suggests
creating amodel of the problem in order to identify alternative solutions.

0 Select the criteria-Criteria are evaluative standards used to judge the
goodness of the projected policy outcomes associated with each of the alternatives. In
other words, the criteria are the researchers value judgments and subjective standards
applied to the projected outcomes. Selecting criteria requires the researcher to make
judgments as to whether and why an outcome is desirable. Possible criteria include: (1)
efﬁciency, an important evaluative consideration in cost-effectiveness and cost-beneﬁt
studies; (2) equality, equity, fairness and "justice"; (3) freedom and community. Some
criteria are practical in nature and have to do with what happens to an alternative as it
moves through the policy adoption process. These are generally categorized as legality,

political acceptability, robustness under conditions of administrative implementation, and

49

irnprovability (Bardach, 2000). For example, a feasible policy must not violate
constitutional or statutory law.

0 Project the outcomes-~Projecting outcomes is the hardest step in a policy
analysis, and is often omitted altogether. This is the heart of the current case: projecting
outcomes that might reasonably apply to providing support services to hospice
caregivers.

o Conﬁont the trade-offs--This requires clarifying trade-offs between possible
outcomes associate with different policy options for providing support services to hospice
caregivers. According to Bardach (2000), the most common trade-off is between money
and service. In this case, the trade-off may be between cost and social beneﬁt.

0 Decide-This step involves making a decision based on the completed policy
analysis. If the decision is difficult at this point, it may be an indication that ﬁrrther
analysis is necessary.

0 Tell the story--After completing the above steps, policy recommendations will

be made so as to provide social support services to hospice caregivers.

50

CHAPTER 4
RESULTS

This study was descriptive in nature. The primary focus was to understand the
social support networks of caregivers of cancer patients living in rural Michigan and the
effect these support networks have on the caregivers' quality of life. This study then
sought to understand how telecommunication policy impedes or encourages the role of
new communication technologies in enhancing social support among caregivers.

The purpose of this chapter is to report ﬁndings based on interviews with hospice
caregivers and hospice policy experts, which provide rich and detailed information for
the case study. Furthermore, reported here are ﬁndings ﬁom in—depth analysis of a
variety of documents related to hospice and healthcare policy. The chapter begins with a
discussion of the context in which the research took place. The remaining sections
address the speciﬁc research questions which sought to understand the support networks
of rural caregivers, the effect caregiving has on their quality of life, and what
governmental policies are in place that impact the efforts of new technologies to mediate
and enhance current caregiver networks. A discussion of the results follows in the ﬁnal
chapter.

W

The purpose of this dissertation is to examine the potential role of telehospice in
providing support to caregivers of hospice patients. Medical care in the United States is
at a crossroads. Providers are seeking ways to provide better service while containing
cost. As noted earlier, Whitten and Hellmich (2000) and Whitten and Doolittle (2002)

found that hospice providers were highly satisfaction with a telehospice pilot project,

51

speciﬁcally in terms of increasing access to patients, delivery of hospice care, and overall
enjoyment of the telehospice visits. Providers were highly comfortable while using the
telehospice equipment (Whitten & Doolittle, 2002; Whitten, Doolittle & Hellmich, 2001;
Whitten et al., 2000). Furthermore, the hospice patients reported that telehospice
increased their access to their provider, especially during the night hours or in case of an
emergency. Telehospice has proven to be an innovative way to provide services to
patients, and needs to be tested as a revolutionary means for supporting caregivers of
patients at the end-of-life. Services for caregivers are languishing in a model ineffective
at supporting healthcare in rural areas. In particular, telehospice may be a means of
providing services to caregivers in rural areas, those who may not have access'to services
in any other way.

In order to better understand the current case, it is necessary to understand the
context in which the research took place. The sample of participants was drawn from all
primary caregivers who were English speaking and caring for a hospice patient with a
cancer diagnosis in rural Michigan. Letters were sent to 98 potential participants from
Hospice of Michigan two weeks prior to telephone interviews. F ifty-one subjects (52 A
percent of the original sample) were successfully recruited through the research and
regional ofﬁces of Hospice of Michigan. Caregivers in this study received services
through the Alpena, Big Rapids, Cadillac, Freemont, Gaylord, and Ludington ofﬁces of
Hospice of Michigan. In all, caregivers were in 15 counties in Michigan; one caregiver

was located in another state. See Figure 1'.

52

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Figure 1: Map of Michigan detailing rural counties participating in the study.

Eighty percent of the caregivers were family members; nearly 40 percent of the
caregivers were spouses, while slightly more than a third of the caregivers were the
patient's adult children. Nearly 80 percent of the caregivers were women, slightly higher
than the national average at 73 percent (NAC & AARP, 1997). The average age of
caregivers in this study was between 51 and 60 years old. The youngest caregiver was in
her 203 while the oldest caregiver happily reported she would be 91 in two weeks.
Nearly 80 percent of the caregivers were married, more than 95% were Caucasian, and
the large majority (70 percent) had a high school education. Tables 1-5 demonstrate the

demographic breakdown of the hospice caregivers.

53

Table l: Caregiver/Patient Relationship

40
6V. A V...

   
   

 

K‘ a 37% I Spouse
I Child
Cl Other
Cl Parent
I Sibling

 

 

 

33%

Table 2: Caregiver Marital Status

4%
8%

10%

 

I Married
I Divorced
Cl Widowed
CI Single

 

 

 

 

Table 3: Caregiver Gender

22%

I Male
I Female

 

54

Table 4: Caregiver age

 

 

 

 

 

percent

 

Percent

 

Caregivers in Michigan spend an average of 14 hours each day with their hospice
patient. More than a third, however, (36 percent) report spending 24 hours per day with
the patient. Caregivers report an average of slightly more than two hours per day for
their own activities, away from caregiving, work and other family roles. Thirty percent
of caregivers, however, report having less than an hour to themselves each day, while ten

percent report six or more hours per day for their own activities. The majority of

55

caregivers, 58 percent, live with the hospice patient, while an additional 28 percent live

either next door to the patient or in the same town.

Table 6: Caregiver/patient Living Arrangements

14%

    

 

I Live with patient

I Next door/same town

 

 

23% f 53% Cl Live in another town

 

Table 7: Caregiver Personal Time per Day

 

I< 1 hour
I1-3 hours
D3+hours

 

 

 

 

I 40%

56

Table 8: Caregiver Time with Patient Per Day

 

E < 3 hours
I4 - 10 hours
1:112 - 23 hours
[324 each day

 

 

 

 

[122%

Twenty-two percent of the patients being cared for by participants in this study
were diagnosed with lung cancer. This follows national data suggesting lung cancer is
the most common of all cancers. Cancer is the second leading cause of death in the US.
(NCHS, 2002), and about 63 percent of all hospice enrollees have at least one type of
cancer as their primary diagnosis (Gage, 2000). The total number having some type of
cancer is even greater. Cancer accounts for six of the top ten primary diagnoses in the
hospice population, with lung cancer being the most common (Gage, 2000). Ninety-eight
percent of hospice patients with cancer die during hospice enrollment (Gage, 2000). Ten
percent of the patients in the current study had colon cancer, and eight percent of the
patients had either prostate or breast cancer. Remaining patient diagnoses included
leukemia, kidney, ovarian, pancreatic, and lymphoma, among others.

In order to address the purpose of this research, namely to understand the role of
social support in the lives of caregivers, its effect on quality of life, and the potential for

enhancing support to caregivers through mediated communication, the speciﬁc research

57

questions will be addressed in order. The caregiver case study will be discussed in detail

followed by the policy analysis.
Wu;

Caregiver Sample

RQl: What do hospice caregivers perceive as their sources of social support?

Two primary methods were used to answer this research question. First,
perceived social support was measured in part by the Multidimensional Scale of
Perceived Social Support (MSPSS) (Zimet et al., 1988). As noted earlier, this 12-item
instrument measures three factors of perceived support from family, friends, and
signiﬁcant other. Second, interview data from open-ended questions were content
analyzed to determine participants' perceptions of social support.
thitative measurement

The majority of caregivers of hospice cancer patients in Michigan have a support
network of friends, family, and signiﬁcant others that they feel they can rely on if
necessary. As measured by three factors of the MSPSS, 80 percent of caregivers agreed
that they have a friend whom they could call on for help; 86 percent of caregivers can
rely on family for help, and 92 percent of caregivers reported that there is a special
person in their life whom they could count on for support. The seven-point measurement

scale of the MSPSS was collapsed into three points for ease of reporting. See table 9.

58

Table 9: Caregiver Sources of Perceived Social Support

 

 

“

r:

8

g C] Disagree
I Neutral
I Agree

 

 

 

The ﬁiendship support factor was measured by degree of agreement/disagreement
on four items: "friends really try to help me;" "count on friends when things go wrong;"

"friends with whom to share joys and sorrows;" and "talk about problems with friends."

See Tables 10 - 13 for details on these items.

Table 10: "My friends really try to help me"

Percent

    

Disagree Neutral Agree

Caregiver agreement

59

Table 11: "I have friends with whom to share my joys and
sorrows"

Percent

    
     

Disagree Neutral

Caregiver agreement

Table 12: "I can count on friends when things go wrong"

Percent

   

Disagree Neutral Agree

Caregiver agreement

60

Table 13: "I can talk about my problems with my friends"

 

 

Percent

    

.l
Disagree Neutral Agree

Caregiver agreement

The family support factor was measured by degree of agreement/disagreement on
four items: "family really tries to help;" "emotional help and support from family;" "talk

about problems with family;" and "family is willing to help make decisions." See Tables

14 - 17 for details on these items.

Table 14: "My family really tries to help me"

Percent

    

l

Disagree Neutral Agree

Caregiver agreement

61

Table 15: "I get the emotional help and support from my

Percent

 

Disagree Neutral Agree

Caregiver agreement

Table 16: "I can talk about my problems with my family"

Percent

 

Disagree Neutral Agree

Caregiver agreement

62

Table 17: "My family is willing to help me make
decisions"

 

Percent

    

r l
Disagree Neutral Agree

Caregiver agreement

The "signiﬁcant other" factor was measured by degree of agreement/disagreement
on four items: "special person around when I am in need;" "special person to share joys
and sorrows;" "special person is a real source of comfort;" and "special person cares

about my feelings." See tables 18 - 21 for details on these items.

Table 18: "There is a special person who is around
when I am in need"

Percent

 

Disagree Neutral Agree

Caregiver agreement

63

Table 19: "There is a special person with whom to share
my joys and sorrows"

Percent

 

Disagree Neutral

Caregiver agreement

Table 20: "There is a special person who is a source of
comfort to me"

Percent

     

Disagree Neutral Agree

Caregiver agreement

Table 21: "There is a special person who cares about
my feelings"

Percent

 

Disagree Neutral Agree

Caregiver agreement

Interestingly, none of the factors, family, friends, signiﬁcant other, was
signiﬁcantly correlated with gender, marital status or education. Education, however,
was signiﬁcantly correlated (F -.369, p=.001) with support from a signiﬁcant other. This
mirrors existing research, as well as simple logic.

Qualitative measurement

Caregivers were asked to discuss who helps them in their caregiving role. Half of
the caregivers interviewed reported that other family members help in the caregiving role.
"My brother and sister-in-law come over to visit, help with the grocery shopping, take
[the patient] out to dinner. I'm very satisﬁed with the help I get." "My stepdaughter
comes on weekends to mow the lawn and give me a break." "My dad is good for a reality
check. He helps keep things in perspective." About a third of the caregivers reported
that they received help from friends and neighbors. "My friends, family and neighbors
have been very supportive. They make meals for me, come over so I can get out. I have

one friend, I call her my 'honorary grandma,’ she's my steel spine. She goes with me to

65

doctor visits and helps explain medical terms." "I have a very special friend, who's been
a friend for many years. We've been through tough times together." Caregim. rely on a
variety of ﬁiends for emotional support. "I talk with my hairdresser a lot because she's
also lost someone to cancer. She can understand what I'm going through." ”I have a
ﬁiend who lives out of town, but she's very busy. Oﬁen she's not available. But she's
been there forever. I can talk to her about my fears, my hurt, my anger, my sadness.”
One caregiver pointed out an important aspect of being a hospice caregiver. "My family
tries to provide help. My sister is far away, but I have aunts who are available. Even
with help, though, the load lands on one or two people."

Caregivers also received help from professional caregivers such as hospice
providers, and ﬁom members of the spiritual community. As one caregiver noted, ”My
sisters have helped in the past, but mostly I rely on my Christian ﬁiends. They provide
emotional support, watch my kids, provide food, whatever I need." Another caregiver
commented that her immediate family tries to help, but her extended family does not.
”The only help has been from hospice and my immediate family, my husband and kids.
My brothers and sisters would call but not come over to help. My extended family hasn't
provided any help. I would've died without hospice." Several caregivers commented that
their family helps when it can, but that they have responsibilities of their own. ”My
daughter helps when she can. Both of my parents live here, so she'll come over and clean
my house when she has time. But she has a family of her own to take care of." One
caregiver noted she was satisﬁed with the help she currently received, but expressed
concern about help in the future. "My husband is doing well right now. I get enough

support from my friends and my church. But what about later, when he gets bad? Will

66

people be around to help then?” Another caregiver seemed to echo her concern. "I had
help at the beginning but now no one helps. People back away. No one wants to be
around now."

Several caregivers reported that the only help they receive is from hospice. Many
commented that family members are too far away or physically unable to help, so they
must rely on professional support. "My sisters would help if they were here, but they live
in California, so the only help I get is ﬁom hospice." "My brother helps as much as he
can. He comes to visit about once a month. My mother's friends can't help. . .she's 93 and
they're as old as she is." Another caregiver commented that even with family at home she
feels she is the only one in the caregiving role. "My husband travels so much that he isn't
around to help. I need more help. I can't get my father-in-law to eat lunch if I'm not
there to ﬁx it. I work and when I'm not home he won't eat."

For most caregivers, Hospice of Michigan is an important resource. "My husband
helps some, but hospice is a blessing. I couldn't do without them." One caregiver
commented, "I live out of state. My sister-in-law helps when she can, but we couldn't do
it without Hospice. The nurse, social worker, and minister have been such a help."
Another caregiver commented on the difﬁculty of asking for help. "They're my kids but I
can't dump on them. They want to help but I just can't [accept help from them]. I've
been in their situation and you don't know what to do, so at least they're trying. It's not
easy."

Caregivers are not always satisﬁed with the help they receive, however. Some
caregivers feel they shouldn't always have to ask for help, and wish their support network

would offer assistance more often.

67

In summary, caregivers relied most heavily on immediate family for support but
also considered friends an important source of assistance. While some caregivers
commented that they receive help ﬁ'om their extended family, many caregivers reported
that their families are too far away, or unwilling to provide instrumental assistance.
Several caregivers received emotional assistance ﬁom distant family and friends through
frequent telephone calls. One caregiver mentioned that she used e-mail to keep in touch
with friends and family in another state. However, the majority of care comes from
family members in the immediate area, from neighbors, and from professional sources
such as Hospice of Michigan and the local Area Agency on Aging. Even when
caregivers had a network of support, the primary caregiver reported being just that, the
one involved in the majority of care. The next section of this chapter explores the
relationship of support and caregiver quality of life.

R02: What is the relationship between perceived social support and the caregiver's
quality of life?

Two primary methods were used to answer this research question. First, the
Caregiver Quality of Life Index (McMillan, 1996b) measured caregiver quality of life on
four factors: emotional, social, ﬁnancial, physical. Second, interview data from open-
ended questions were content analyzed to determine participants' perceptions of their
quality of life.

Mtitaﬁvg mment

Hospice caregivers in Michigan generally report a positive quality of life on the

four dimensions reported here. The Caregiver Quality of Life Index CQLI was originally

designed as a lOO-point scale to be administered in person. Means on the CQLI in

68

national samples range from 54.1 to 88.3 (McMillan, 1996b). To facilitate telephone
interviews, participants were asked to rate their quality of life on a scale of one to ten.
Means ranged from 6.57 to 7.10. See Appendix x for the four items of the CQLI.

Tab1e22, below, shows the mean score for quality of life on each of the factors.

Table 22: Caregiver Quality of Life Index

    

 

 

10 was: , .
9 _ __ .

8

7

6

5

4

3

2

1

\ _ \ \ \

$99, of". 0°"? $9
Q {9 RV

s»

A correlation was conducted to test the relationship between quality of life and
perceived social support. Support from friends and signiﬁcant others were signiﬁcantly
correlated with the caregiver quality of life index (r=.488, r=.394, p=.Ol), however,
family support was not signiﬁcantly correlated (r=.257).

Table 23: Correlation Matrix, CQOL and MSPSS

 

 

 

 

 

 

 

 

 

 

 

Caregiver QOL Support from Support from Support from
Index ﬁiends family signiﬁcant others
Caregiver QOL r=l .000
Index
Support from F.488" r=l .000
ﬁiends
Support from r=.257 r=.586** r=l .000
family
Support from r=.392** r=.675** r=.542" F1000
signiﬁcant
others
**p=.01

69

 

Several of the individual items from the two measurements were signiﬁcantly
correlated. Support from friends was signiﬁcantly correlated with emotional quality of
life (r=.407, p=.01); social quality of life (r=.344, p=.05); and physical quality of life
(r=.560, p=.Ol). Support from a signiﬁcant other was also correlated with emotional
quality of life (r=.298, p=.05); social quality of life (r=.466, p=.01); and physical quality
of life (r=.453, p=.Ol). Interestingly, however, support from family, was only correlated
with physical quality of life (r=.349, p=.05), suggesting family members take on the role
of providing instrumental support but emotional support comes from friends and
signiﬁcant others. This logically follows that a caregiver would rely on a friend or
conﬁdant for emotional support before an extended family member.

The caregiver's quality of life was signiﬁcantly correlated with living
arrangements (r=.279, p=.05). People not living with the patient have a more positive
quality of life. This makes sense in that caregivers who are able to go home to a different
location have more respite from their caregiving role. Interestingly, marital status was
not correlated with caregiver quality of life, nor was time spent with patient or time for
personal activities.

Qualitative measurement

When asked how being a caregiver has affected the participants' physical health,
many caregivers reported being "tired", "worn out", and "drained." When asked about
their emotional health, caregivers reported that the experience had made them anxious
and depressed. "This has been rotten. It's really affected me. I got so depressed I had to
go on medication." "I'm tired all the time. I work full time then come home to caring.

It's emotionally draining too. I don't let my worries out. I didrlt want to put him in a

70

nursing home, but I just couldn't take care of everything." For participants with their own
health concerns, the role of caregiver takes an additional toll on their lives. "This is
really stressful for me. It causes my ﬁbromyalg'a to ﬂare up. When the stress level is
high, I have to try harder or else I get overwhelmed." Caregivers also report increased
blood pressure, weight gain, difﬁculty sleeping, and exhaustion. ”I don't sleep too well.
If he coughs I wake up. I'm always worried."

Several caregivers reported that they work to keep themselves physically and
emotionally healthy. "I've learned to take care of myself. I keep laughter in the house
and don't allow pity parties. I've learned the beneﬁts of staying active 3111 I exercise on a
regular bases." Many participants also commented on the ups and downs, "the
rollercoaster" of caregiving. "I'm generally a positive person. I have a good cry, then I
feel better." "I had a deep depression but when that happens I talk myself out of it."

In summary, ﬁiends and conﬁdants play an important rele in hospice caregivers'
quality of life. As with social support, extended family have a limited impact on quality
of life. Caregivers report that their role is exhausting and emotionally taxing,
emphasizing the need for respite care. This is echoed by the fact that caregivers who do
not live with the patient, who are able to go home to other responsibilities, have a more
positive quality of life.

RQ3: What is the potential for telehospice to address caregiver needs?

From a caregiver perspective, research question three was measured by asking
caregivers if they would be interested in using new communication technologies,
speciﬁcally videophone equipment, in their caregiving role. Caregivers were told that the

videophone would connect to another party via standard telephone lines, and that they

71

could use the system to connect with hospice nurses, social workers, spiritual care
workers, ﬁnancial counselors, members of their church or religious community, and
family members in other towns or states. Seventy percent of caregivers said they would
not be interested in using telehospice equipment. Caregivers commented "The hospice
staff is so responsive that I don’t need anything else," and "The phone works just ﬁne. I
can page the hospice staff if I need them." Caregivers also commented that the patient
wouldn't want any other technology in the home. ”We tried to get him to use a lifeline
but he refused. He wouldn't want this around." Other caregivers thought telehospice
might be useful for emergencies, but did not envision it for other circumstances.

It is interesting that hospice caregivers did not envision telehospice equipment as
a resource for themselves, but only as a resource for the patient. Caregivers repeatedly
mentioned that the patient would not want the equipment in the home, or that when there
was a concern for the patient the caregiver could call the hospice nursing staff. Even
when prompted, most caregivers could not conceive of a situation in which they would
want to use videoconferencing equipment, reinforcing the traditional paradigm that
hospice services are for patients, not caregivers.

Also interesting is that caregivers in rural areas did not refer to limited hospice
resources or cost of providing care. Caregivers commented that if they needed services
for the patient they would page the nurse, not mentioning the travel time it might take the
nurse to reach them. Caregivers did not mention any difﬁculties with reimbursement,
instead commenting that ”the hospice ofﬁce takes care of all that." A few caregivers
expressed frustration when a bill was inadvertently sent to the home instead of the

hospice ofﬁce, reinforcing the idea that they're not responsible for costs of care.

72

Caregivers did not exhibit much insight into actual costs associated with end-of-life care.
It is important to recognize that the majority of patients being cared for by caregivers in
this study were receiving hospice services through Medicare. Because of the nature of
Medicare reimbursement, the patient and caregiver are shielded from costs associated
with care, as all bills are taken care of directly by the hospice provider. None of the
caregivers discussed difficulties in receiving care, although a few caregivers mentioned
having several different nurses. This could be related to nursing shortages in rural areas.

Services that the caregiver needed for themselves included respite care, a break
from caregiving to sleep, the opportunity for personal care such as haircuts and massage
treatments, a chance to visit grandchildren in other states, someone to run errands or help
with housework, time for exercise on a regular basis. In situations where the patient was
living is a residential facility, professional staff frequently comments they needed better
staffing at the facility. They also commented-they would like a break room away from
families because it was sometimes difﬁcult maintaining composure in ﬁont of visitors.
Family members of patients in residential facilities commented they would like the ability
to see the patient at any time. Some of these family members had a signiﬁcant commute
to reach the facility.

While telehospice cannot address all the needs of caregivers, it has the potential to
address some of them. For example, family members who live some distance from the
patient could use videoconferencing to keep in touch with the patient. Caregivers could
use the equipment to keep in touch with other family members in distant locations, such

as seeing grandchildren in another state when they are not able to leave the patient for

73

any length of time. It has the potential to provide respite in certain situations depending
on the patient's health at the time.
Policy Sample

As noted in Chapter 3, part two of this project is the policy analysis of current
regulations as they pertain to providing social support services to hospice caregivers.
Using the framework provided by Bardach (2000), the ﬁrst two steps in the policy
analysis are described below, as they pertain directly to the results chapter of the
dissertation. The remaining six steps in the framework will be addressed in the following
chapter, as they pertain to discussion and recommendations for providing enhanced
services to caregivers.

Deﬁning the problem is a crucial step in Bardach's framework for a successful
policy analysis: It gives the researcher a reason for doing the work and a sense of
direction for gathering evidence. The problem as deﬁned for the current research is:
caregivers of hospice patients are under considerable stress. The evidence used to
address the problem is described within the research questions below.

RQ3: What is the potential for telehospice to address caregiver needs?

From a policy perspective, research question three was addressed through analysis
of current research about telemedicine, archival data, and interviews with policy experts
from state and federal organizations.

In testimony before the U. S. House of Representatives, Robert Berenson,
Director of the Center for Health Plans and Providers, Health Care Financing
Administration, said,

T elemedicine, with its ability to provide medical services via
telecommunications systems, holds great promise for extending

74

access to care in rural and other medically underserved areas. We

understand that rural beneﬁciaries face unique challenges in

accessing the medical care they need, particularly access to

specialists. Helping them is a high priority for us (Testimony of

Robert A. Berenson, M.D., Director, Center for Health Plans &

Providers, Health Care Financing Administration, 2000).

As noted earlier, providing hospice care in rural areas poses unique challenges.
Hospice is more difﬁcult to access in rural areas Buckingham, (1996). Travel expenses
and road conditions posephysical barriers, while a shortage of health providers poses
access barriers. Even though rural America has 33 percent of the population, only 12
percent of physicians and 18 percent of nurses choose to practice in rural areas
(Buckingham, 1996). Medical specialists, including physicians with hospice expertise,
may not exist locally (Buehler & Lee, 1992).

In addition to access issues, many people in rural areas are self-employed or work
for small, privately owned business, and may have limited, if any, health insurance
(Vrabec, 1995). While people in rural areas have lower overall incomes and less
. education, cost of providing services is actually more expensive. Furthermore, the
majority of caregivers in the current study were older than 50. Rural older Americans
have characteristics and needs that differ from their urban counterparts. They are often
more isolated, have lower incomes, and have greater challenges actually accessing health
services due 'to transportation needs. Rural residents are more likely to stop care as a
result of cost (Blazer, Landerman, Fillenbaurn & Homer, 1995). Rural residents are also
less likely to obtain health care at a hospital. Even though the older population is almost

universally covered by Medicare and Medicaid in the US, substantial differences in out-

75

of-pocket expenses such as transportation mean that health care is not equally accessible
to all.

The majority of caregivers in the current study were women, mirroring previous
caregiver data. In addition to geography impacting economic variables, there are also
gender-based disadvantages to rural caregivers. For example, elderly women in the US
outmunber elderly men three to two (Whitten & Gregg, 2001). As the death of a husband
often leads to acute economic changes for the surviving wife, health analysts need to
consider changing needs due to economic constraints. Services available through
telemedicine have the potential to impact access to health care for such economically
challenged older Americans.

In a recent report to the Governor, the Michigan Commission on End of Life Care
emphasized the importance of the needs of caregivers while they are caring for the dying,
and for the grief and bereavement that accompanies and follows the death of a loved one
(Commission, 2001). Support for caregivers must include attending to the emotional,
physical and ﬁnancial danands on families caring for a loved one at home. The
commission recommends incorporating caregiver services directly into the patient's plan
of care. Furthermore, the commission recommends improving reimbursement streams to
ﬁll the need for skilled respite care (p. 36).

Because of the nursing shortage, Gloria Dana, government affairs director for
Hospice of Michigan, reports that Hospice of Michigan is looking for alternatives that are
less dependent on nursing staff. "We're trying to ﬁgure out the model that's less nurse-

dependent. Telehospice might provide support where there are no nurses" (Dana, 2002).

76

Telehospice could be one means for providing one-on-one grief and bereavement
counseling in areas of the state where limited nursing staff exists.

Furthermore, Dana reports that the average reimbursement for HOM is $116 per
day. The reimbursement rate is actually less in rural areas, even though providing
services may in fact cost more. Furthermore, the reimbursement rate is constant between
adult and pediatric patients, while the cost for providing services for pediatric patients is
much higher. Dana reports that the reimbursement rate has not kept up with inﬂation as
HOM's average cost for service is $155 (Dana, 2002).

The Rural Policy Research Institute (RUPRI) Center for Rural Health Policy
Analysis recommends changes to the Medicare program to obtain and then maintain
equality for beneﬁts and costs for beneﬁciaries, regardless of where they live (Panel,
2001). Furthermore, the Center recommends that any changes to Medicare should ensure
that beneﬁciaries have comparable choices available to them and have access to all
medical services.

As noted earlier, hospice care has been successfully delivered into patients' homes
via telehealth. Telehospice allowed nurses to visit and treat patients without leaving their
home/ofﬁces (Doolittle et al., 1998), reinforcing the advantages of not having to drive
long distances in rural settings. Hospice providers are highly satisfaction with
telehospice equipment, speciﬁcally in terms of increasing access to patients, delivery of
hospice care, and overall enjoyment of the telehospice visits (Whitten et al., 2000).
Hospice patients reported that telehospice increased their access to their provider,
especially during the night hours or in case of an emergency. Further, caregivers reported

that an increased level of comfort was associated with the equipment due to the video

77

component of the service, suggesting that the equipment could be used to enhance social
support to caregivers.

RQ4: What legislative and regulatory mandates are in place that affect delivery of
mediated social support?

Providing mediated social support takes place within a larger context of hospice
policy and telecommunications policy. For purposes of clarity, these two perspectives
will be addressed separately.

Hospice policy

Since creation of the Medicare Hospice Beneﬁt in 1982, hospice has
demonstrated its capacity for expert and compassionate care of the dying. However,
according to the National Hospice and Palliative Care Organization (NHPCO), along
with the growth of hospice has come increased governmental oversight which creates
barriers to access (Swiger, 2002). Despite hospice's growth, the Medicare Hospice
Beneﬁt is one of Medicare's smallest programs, accounting for approximately two
percent of Medicare's total outlays (Mahoney, 1998). Historically, care in the last year of
life is the most costly in the healthcare timeline (Swiger, 2002). In a report to Congress,
the Medicare Payment Advisory commission (MedPAC) stated that end-of-life care
accounted for approximately 25 percent of Medicare spending between 1994 and 1998
(MedPAC, 1999). Medicare payments in the ﬁnal year of life averaged $26,000 in 1997,
six times what Medicare spent on other beneﬁciaries. According to Swiger, because
physicians view death as a failure, every medical and technological advancement is used
to ﬁght the inevitable, making dying the most expensive health-related episode (Swiger,

2002). As noted earlier, even though hospice referrals have increased, time spent in

78

hospice has decreased. Because of increased cost during the ﬁrst and last days of
hospice, a recent study ﬁmded by the Robert Wood Johnson Foundation recommending
re-basing the reimbursement rate to account for inﬂation, and to pay a higher rate for the
ﬁrst and last days of hospice care (Huskamp, Beeuwkes Buntin, Wang, & Newhouse,
2001).

According to the U. S. General Accounting Office (GAO), while the number of
Medicare recipients enrolled in hospice more than doubled between 1992 and 1998, only
one in ﬁve Medicare beneﬁciaries used the hospice beneﬁt (GAO, 2000). The growth of
hospice has increased scrutiny from government regulators (Swiger, 2002). According to
Swiger, this has had the unintended consequence of creating administrative and
regulatory barriers to the deliver of optimal end-of-life care by hospice programs in the
U. S. The MedPac report (MedPAC, 1999) states that due to audits by the Ofﬁce of the
Inspector General (OIG), physicians are reluctant to make six-month prognoses in all but
the clearest cases to avoid any perception of fraud. As noted earlier, recent
recommendations to MedPAC include revisiting the deﬁnition of prognosis for hospice
referrals (Von Gunten et al., 2002).

Other barriers to increasing hospice services for caregivers come ﬁ'om
inconsistency of interpretations of the Centers for Medicaid and Medicare (CMS)
Conditions of Participation. In some CMS regions, the entire interdisciplinary care team
is required to approve all changes in a patient's plan of care, even if the change could
easily be identiﬁed by on-site professionals (Swiger, 2002). CMS has also modiﬁed the
role of hospice medical directors, requiring them to participatein and agree to all new

changes and revisions to the patient's plan of care. This requirement duplicates the

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review of the attending physician since the attending physician often provides the orders
for most changes to the plan of care, without any adjustment to the per diem
reimbursement.

Ken Drees, technical assistance director for the NHPCO, states that a key issue
for caregivers in the home is the need for additional services such as respite care.
According to Drees, Medicaid provides for a personal aide service in the home, allowing
family caregivers respite of up to four hours a day. However, once a patient is referred to
a hospice program and covered by the Medicare Hospice Beneﬁt, the personal aide
service is considered a duplication of services, eliminating the respite beneﬁt for
caregivers (Drees, 2002).

According to Gloria Dana, government affairs director for Hospice of Michigan,
grief support is required of hospice providers in Michigan. However, it is not a
reimbursable beneﬁt under the Medicare Hospice Beneﬁt (Dana, 2002). Furthermore,
grief support is not limited to patients and families. Counseling can take the form of
children's bereavement camps, school programs for coping with loss or crisis
intervention, or work release and substance abuse programs with county jails. In 2000,
Hospice of Michigan served 5000 people through support groups and one-on-one
counseling (Dana, 2002). The majority of this counseling and support is not a
reimbursable beneﬁt. In addition to the nursing shortage, a shortage of Master’s prepared
social workers adds to hospice's struggle to provide quality care (Swiger, 2002).
Telecommunications Policy

Berenson (2000) testiﬁed that telemedicine usage prior to September 2000, was

limited. Although the Balanced Budget Act of 1997 expanded coverage options, it also

80

 

precluded the use of telemedicine under conditions where it is commonly used outside of

Medicare. Berenson expressed concern regarding this limit to the use of telemedicine

within Medicare, but also about the broader implementation of telemedicine.

There is very little published, peer-reviewed scientiﬁc data
available on when telemedicine use is medically appropriate. It is
difﬁcult to project potential cost implications. And there are
potential program integrity issues that should be addressed
proactively (Testimony of Robert A. Berenson, M.D., Director,
Center for Health Plans & Providers, Health Care Financing
Administration, 2000).

Among the restrictions of the Balanced Budget Act (BBA) of 1997 were:

Telemedicine services could only be provided to a beneﬁciary in a rural healt
professional shortage area

Services were limited to "consultations," deﬁned as a "face-to-face" physician
and patient encounter in which the patient is present at the time of the
encounter. This eliminates reimbursement for store-and-forward
technologies.

Registered nurses and other medical professionals not recognized in the
Medicare statue cannot receive payment for a teleconsultation. This is a
severe limitation for rural areas where there is already a shortage of
physicians. Also, health care providers such as clinical psychologists, who
may be able to receive Medicare payment in limited circumstances but who
are not recognized in the statue, cannot receive payment for teleconsultation.
Consulting and referring practitioners must share payments and line charges
or facility fees are not reimbmsable.

As of September 30, 2000, after almost two years of telemedicine reimbursement

under the BBA, Medicare had reimbursed a total of $20,000 for 301 teleconsultation

claims (Kumekawa, 2001). At the end of December 2000, Congress passed a beneﬁts

improvement and protection act which addressed many of the limitations of the telehealth

requirement of the BBA:

The improvement act eliminated the fee-sharing requirement. Under the new
law the originating site will receive a facility fee of $20 and the specialist will
receive the full physician payment.

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o The improvement act eliminated the requirement that a physician or eligible
practitioner must present the patient at the originating site, enable nurses and
other medical care specialists to use telemedicine.

0 Expansion of the eligible geographic areas and expansion of the number of
eligible services to be reimbursed (Kurnekawa, 2001).

The improvement and protection act made signiﬁcant improvements toward
providing mediated social support for caregivers, however, as yet telemedicine is not
covered under the Medicare Hospice Beneﬁt. Furthermore, only limited beneﬁts are
speciﬁcally spelled out by Medicare for caregivers, as noted above.

In summary, caregiver in rural Michigan perceive they have a support network to
help them when necessary. When discussing help, caregivers most often point to their
need for instrumental resources such as mowing the lawn, cleaning the house, or going to
the grocery store. However, when asked about their health, caregivers describe in detail
the effect caregiving has had on their emotional health. Although there was mention of
the effect on their physical health, many caregivers reported that caregiving has made the
depressed, anxious and worried. The relationship between perceived support and quality
of life is a subtle one. Caregivers have a support network, but the possibility exists that
the type of support they need is not necessarily the type of support they have.
Furthermore, when asked about additional support, many caregivers said they have
everything they need and would get through the caregiving role in their own way. This
points to a lack of understanding of the role communication technology in caregiving.

The caregivers also displayed a lack of understanding about the difﬁculties of
providing hospice care in rural areas. The great majority of caregivers sincerely
appreciated the role of Hospice of Michigan. They commented that they "could not have

survived” without hospice. They did not, however, give any indication about how

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difﬁcult it is for hospice to provide quality service, or how technology might facilitate
caregiver services in the future. Finally, because of the difﬁculty of maintaining a quality
workforce in nrral Michigan, HOM is looking for innovative ways to provide services.
Although this might be facilitated by technology, several policy issues need to be

addressed, including reimbursement, liability, licensure, and privacy concerns.

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CHAPTER 5
DISCUSSION

At its premise, this study adopted the assumption that social support networks are
important to hospice caregivers in rural areas. This study sought to document this
phenomenon by identifying the context in which the participants provide care. This
dissertation attempted to determine how hospice caregivers experienced their world by
collecting their accounts of who provides support for them in their caregiving roles, what
type of support they receive, and how caregiving affects their quality of life. A second
assumption made by the researcher is that caregiving exists within a framework provided
by public policy, and is directly affected by rules governing hospice care for patients.
This study sought to document the healthcare policies that affect caregivers in their
caregiving role by synthesizing information from policy experts, archival data, and
relevant research reports. 9

The purpose of this ﬁnal chapter is to offer the researcher’s account of the
relationship between a hospice caregiver‘s social support network and his or her quality
of life. Furthermore, it underscores the signiﬁcance healthcare policy would play in
enhancing Support services through the use of telecommunication technologies. A
discussion of the implications of this study and future directions for research precedes an
acknowledgment of the strengths and limitations of this project.

Was

This case reiterated some existing beliefs about hospice caregiving while

illuminating new effects of this important role. The participants in the sample mirrored

larger population studies of caregivers. The great majority of caregivers were female

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family members between the ages of 51 and 60. Many caregivers reported spending 24
hours each day with the hospice patient, leaving little or no time for their own activities.
The interpretation below is based on themes illuminated by the results in Chapter 4.
Redeﬁning supmrt

When asked about the type of support they received, many caregivers commented
that others help them "mow the lawn" or "do the dishes." Help was often described in
terms of instrumental support, "doing" something. When caregivers were asked about the
effects of caregiving on their health, however, they most often commented that it made
them anxious, depressed and lonely. This provides an almost dichotomous deﬁnition of
help: caregivers think of support as instrumental but what they may need more of is
emotional support. Telemedicine has the opportunity to reposition support in terms of the
beneﬁts of emotional support. Caregivers could use technology to access emotional
support from friends, family, and professionals. A few caregivers noted that caregiving
had taken such a toll on their emotional health that they were being treated for
depression. Telemedicine could provide access to their physician or professional
counselor as a necessary component of the support network.

A few caregivers reported that they work very hard to keep themselves
emotionally and physically healthy. This may become difﬁcult as the caregiving role
progresses. Others commented that they used to exercise on a regular basis but
caregiving now kept them at home. Telemedicine could provide opportunities for
caregivers to join support groups at distant locations, or even exercise classes in a

neighboring community center.

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Sumrt from immediate versus distant friends and family

Through discussions with caregivers in Michigan, we have learned that the
majority perceives they have a support network of friends, family and signiﬁcant others
which they can rely on if necessary. Nearly all of the caregivers (92 percent) reported
they could rely on a signiﬁcant other for support. Though slightly less, the overwhelming
majority of caregivers felt they could rely on family (86 percent) and friends (80 percent)
for support.

Caregivers with extended families in the immediate area seemed to rely heavily
on family members for support. However, many caregivers reported that they receive
little or no support from distant family. Throughout the U. S., rural areas generally have
a higher proportion of older persons in their total population than urban areas.
Furthermore, women constitute a larger share of the older population, especially in the
older age groups (ERS, 2002). Rural areas are aging rapidly as a result of aging-in-place,
out-migration of young adults, and in-migration of older persons from metro areas,
straining community resources to provide needed services. What effect will these trends
have on this sense of social support from family? Furthermore, some caregivers,
particularly those whose children were not yet adults, reported they don't want to rely on
their kids for support. Telehospice has the potential to connect distant family members
into the caregiver's support network. This would provide the caregiver with an avenue of
emotional support while not feeling she is burdening her children. In addition to
supporting the caregiver, telehospice would give distant family members the opportunity

to interact with the hospice patient directly.

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A few caregivers mentioned that members of their support network used to be
available to help, but as the patient's disease progressed they either didn't know how to
help, or felt uncomfortable with the patient's condition. When implementing technology,
specialists typically try to ﬁnd the technology that is the least invasive, or the least likely
to look like a machine. In this shift of thought, however, would the telemedicine
technology itself provide enough of a barrier that those who are uncomfortable being in
the immediate vicinity of the patient feel more comfortable providing emotional support?
Gregg (2001) found that homebound elderly felt comfortable using technology to interact
with groups they were not comfortable interacting with in person. For members of the
support network who don't know how to help, telemedicine provides the opportunity to
facilitate a quick conversation with the caregiver, a ”how are you today." This might
address concerns that members of the support network have about wearing out the patient
by spending too much time in the home, or about concerns for their own time constraints.

Challenges to professional healthcare moviders

As noted earlier, healthcare organizations throughout the U. S. are facing a critical
nursing shortage. Hospice care by its very nature relies heavily on nurses experienced in
end-of-life care. The caregivers interviewed in this project, however, did not seem to
have a sense or understanding of the challenges the organization faces in providing
quality care in rural areas. A few caregivers mentioned that they had had care provided
by several different nurses, but did not seem to conclude that this was a result of staffing
shortages. Jeanne Parzuchowski, vice president of research for the Maggie Allessee
Center for Quality of Life at Hospice of Michigan, noted the challenges HOM faces in

ﬁnding and keeping nurses experienced in end-of-life care, particularly in its mral

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ofﬁces. Furthermore, she noted that her organization is searching for innovative care
options that are less nurse-intensive. "Hospice of Michigan strives to be a leader in
quality of care. We're trying to provide the model that could lead the nation to the next
level of care for patients and families at the end of life” (Parzuchowski, 2002).

Caregivers seemed to believe that immediate access to professional care providers
was an inherent right of being enrolled in hospice. Americans have long held the belief
that immediate access to care is part of our national freedom. Does the nursing shortage
change this right to immediate care, shifting the focus to alternatives to face-tooface
interaction? Telemedicine could help provide immediate access to remote medical care
when face-to-face care is not possible.
A new paradigm of care

As noted earlier, caregivers repeatedly mentioned the need for respite care.
Limited respite for caregivers at home is available from hospice volunteers. Caregivers
can have extended respite-up to ﬁve daysnby admitting the patient to an approved care
facility. However, most caregivers and patients are unwilling to use this option. What is
the potential for telehospice as a means of respite? If the hospice patient is in relatively
good health, telernedical technologies could be used to connect the patient to a distant
family member or a professional care provider at another location, allowing the Caregiver
the opportrmity for personal time. If the patient is near death, however, telehospice
would not be a viable care alternative because the respite provider at a distance would not
be able to provide immediate or emergency assistance to the patient if necessary.

Caregivers interviewed for this project consistently referred to hospice services

available to the patient. When probed, they often responded that they knew they could

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talk with the social worker, but the patient's care was priority. Few of the caregivers
were able to focus on their own physical and emotional health, however. What if hospice
was able to provide additional services to caregivers? Caregivers play a vital role in
caring for patients at the end of life, but often suffer because of it. Using telehospice,
hospice organizations could enhance the services for caregivers of the dying.

Most caregivers from this project could not conceive of a situation where they
would want to use telehospice equipment. This points to a lack of understanding of the
possibilities created by new technology and the need for educating caregivers about their
options. Several caregivers did mention that it would be nice to talk with distant family
members on a more regular basis, or again, thinking of the patient, that it would be nice
for the patient to see distant relatives one more time before dying. Empowering
caregivers to take care of their own needs, even subconscious ones, shows that they are
valued in society. In the U. S. we applaud parents for raising children. We should
applaud caregivers for helping people die.

Qu_a_lity of mediated sumrt

Daft and Lengel (1984) proposed that communication media have varying
capacities for resolving ambiguity, bringing multiple interpretations together, and
facilitating understanding (Trevino, Daft, & Lengel, 1990). Communication media, then,
can be characterized as "rich" or "lean" based on their ability to facilitate shared meaning.
Rich media have the greatest capacity to facilitate shared meaning while lean media have
the least capacity.

The richness of a medium is based on four criteria: I) availability of instant

feedback to quickly understand the message; 2) capacity to transmit multiple cues to

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convey interpretations; 3) use of natural language; 4) personal focus of the medium
(Trevino et al., 1990). According to this hierarchy, face-to-face communication is
considered the richest communication medium and impersonal written documents such as
reports and bulletins are the leanest media. Is telehospice equipment a rich enough
medium to facilitate shared meaning between caregivers and their support network? A
videophone is less rich than face-to-face communication but more rich than a telephone.
Both the telephone and videophone allow for instant feedback and use natural language.
The videophone, however, provides the opportunity to transmit multiple cues, both verbal
and nonverbal. Furthermore, the video signal has an added dimension of personal focus
that the telephone does not provide. The video component adds an emotional sense of
security that is not available with standard telephone service. Caregivers report that they
are satisﬁed with telephone access to hospice professionals and distant ﬁiends and
family. Could the added dimension provided by the video he a positive force toward
improving the caregiver's quality of life? Additional research needs to critically analyze
the differences between video and audio support.

Furthermore, communication exhibits a "sense of being with another" known as
social presence (Biocca, Harms, & Burgoon, Submitted). For example, individuals
having a conversation while sharing breakfast would have a high sense of social
presence. Mediated social presence, on the other hand, occurs when individuals are
interacting in a mediated environment, such as over the telephone or videophone. Low
levels of social presence are represented by a peripheral sense of being with another,
while higher levels of social presence are characterized by a deeper psychological

involvement or connection (Biocca, Harms, & Gregg, 2001). In a mediated environment,

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there are varying degrees of a "sense of being with another." Using this framework, a
high level of social presence should increase communication satisfaction. Telehospice
equipment could enhance the communication between caregivers and distant family
members by enhancing social presence.
Policy Implications

Continuing with the Bardach (2000) ﬁ'amework used in Chapter 4, policy
implications of the current research are described in detail below. The ﬁnal steps for
successfully completing the analysis regarding policy implications include: (1)
constructing possible altematives to mitigate the problem; and (2) selecting the criteria
with which to judge the projected outcomes. Those steps regarding policy
recommendations include: (3) projecting outcomes; (4) confronting trade-offs between
possible outcomes; (5) deciding which outcomes to recommend; and (6) telling the story.
This analysis reinforces the role that policymakers play in providing health services in the
country. Furthermore, as organizations seek innovative ways to provide quality care
while minimizing cost, they are guided and constrained by existing legislative and
regulatory policy. Issues of importance that came out of this investigation are detailed
below, followed by recommendations for policy makers.

CoMcting alternatives tp mitigate the problem

Barriers to access

Previous research has documented the need for hospice services in rural areas.
For the most part, however, the caregivers in this study felt they had access to healthcare
providers when they needed it. Caregivers felt they could call Hospice of Michigan and

have a nurse sent to the patient's home if necessary. They did mention that on occasion

91

they have had to wait a considerable time for the nurse to travel to their location. While
this was not perceived speciﬁcally as a barrier to access by the caregiver, it was perceived
as an inconvenience (reinforcing the idea discussed earlier, that immediate access to
healthcare providers is a right).

Caregivers also mentioned the need for respite care and the lack of support ﬁ'om
distant family members. The Medicare Hospice Beneﬁt is one barrier to using
telemedicine as a barrier to respite care. Respite for caregivers currently must be
provided by a hospice volunteer at the patient's home or by checking the hospice patient
into a Medicare-approved inpatient facility. One alternative, using the Bardach
framework, is to update the Medicare Hospice Beneﬁt to allow for respite care
reimbursement when care is provided by hospice staff at a remote location. As noted
earlier, respite care provided by telemedicine would need to be examined in greater
detail, and possible constraints implemented to account for the patient's health.

Another alternative for respite care would be to have services reimbursed directly
for the caregiver. This would require that the caregiver's insurance provider, or Medicare
or Medicaid if appropriate, would see this as a service necessary for the caregivers health.
Emotional health is a very real part of life, and the caregiver needs respite care for their
own well-being. Traditional or telernedical respite could be a service reimbursed through
the caregiver's insurance rather than the patient's. As noted earlier he burden of caring
for terminal patients often has a negative effect on a caregiver's quality of life (Smeenk et
al., 1998), and accumulates over time (Duijnstee, 1994). Several of the caregivers in this
study reported they were being treated by a physician for depression as a result of their

caregiver role. It is also important to remember that the value of family caregiving to

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society is estimated conservatively to represent nearly $200 billion per year (Caregiving,
2002), and that a major reason for admission of hospice patients to the hospital is
exhaustion of the primary caregiver (Bramwell et al., 1995). The economic cost of not
providing services to caregivers could far outWeigh the cost to society of providing them.

Limits to telemedicine within hospice policy

Currently, hospice services are reimbursed as a per diem service. At this time the .
Medicare Hospice Beneﬁt does not speciﬁcally address whether services for the patient
are provided in person or via telemedicine technologies. To make sure caregiver services
can be delivered via telehospice, and services for the patient for that matter, this
legislation should to be amended to speciﬁcally address that services are reimbursable no
matter what the delivery modality. One alternative for providing reimbursement through
the Medicare Hospice Beneﬁt is to consider the revisions to the Balanced Budget Act
described earlier. When Congress passed the Beneﬁts Improvement and Protection Act
they laid the groundwork for using telemedicine in hospice care. Technology currently in
use has limited costs associated with it because it runs on standard telephone lines,
therefore there is no need to address line charges. If a caregiver wants to talk with family
in another state they will incur long-distance phone charges, but with most service
providers these charges would be limited. The Beneﬁts Act also addresses physician
charges on the originating and receiving ends of the telemedical call. Because the
services to caregiver would be between family and friends there would be no charge. If
there were a consultation with a physician, it would be directly into the caregiver's home

so there would be no receiving physician. The Beneﬁts Act cleared up the requirement

93

regarding who is eligible to provide services, paving the way for nurses and social
workers to provide care to caregivers in their homes.

Mandated counseling

As discussed by Gloria Dana, governmental affairs director for Hospice of
Michigan (Dana, 2002), hospice programs are mandated to provide counseling to families
during the time the patient is receiving end-of-life care and after the patient's death. This
is an important service that Hospice of Michigan strives to provide. Prior to the patient's
death the service is covered under the umbrella of the per diem payment to hospice.
However, after the patient has died, the service is no longer reimbursable but is mandated
as part of legislation guiding hospice care in the U. S. T elernedicine provides one option
for making one-on-one care available to family members while maintaining cost outlays
for hospice. Another alternative for providing counseling after the patient's death would
be to have services reimbursed directly for the caregiver. This would require that the
caregiver's insurance provider, or Medicare or Medicaid if appropriate, would see this as
a service necessary for the caregiver's health. While death is a very real part of life, this
may the ﬁrst time many hospice caregivers have been actively involved in the death of
someone so close to them. The caregiver may need counseling to deal with their
emotional response to the death of a loved one. Telernedical counseling services could
be a service reimbursed through the caregiver's insurance rather than the patient's.

Opportunities to provide other types of counseling

While not directly within the scope of this project, it is important to acknowledge
the other types of counseling support provided by hospice programs. Within Michigan,

HOM provides crisis counseling in schools, counseling to inmates in county jails, and

94

support groups for residents dealing with other health-related challenges. Telehospice
provides an opportunity to expand the scope of this care. Telecommunication
technologies have been used successfully in schools and jails to provide other types of
medical care. Providing mediated support groups or counseling is simply an extension of
this model.

Facilitate timely care

While not speciﬁcally a services for caregivers, timely patient care does have an
effect on a caregiver's quality of life. If a patient is uncomfortable, the caregiver is most
likely emotionally anxious and concerned. As noted earlier, the Centers for Medicaid
and Medicare (CMS) enacted policy requiring that hospice medical directors review all
changes to a patient's plan of care. For some hospices this has created a considerable
delay in their ability to provide timely care. By using telehospice equipment, medical
directors would have the ability to review changes at the same time as the attending
professional provider in the patient's home. For example, if the attending nurse
determines that palliative chemotherapy is necessary, the medical director could review
and approve the plan of care while the nurse is still at the patient's residence, providing
immediate feedback and the ability to quickly address patient's needs.

Poligy Recommendatiops

Support networks are important to hospice caregivers. Support, however, is often
deﬁned by caregivers as instrumental, such as provision of services. By reﬂecting on
how caregiving affects their lives, however, it becomes apparent that caregivers may need
inereased emotional support. Telehospice provides an opportunity for redeﬁning support

for caregivers. Furthermore, it provides and opportunity to access emotional support

95

from friends and family members in other communities and states. By accessing distant
members of their support networks, caregivers can feel they are relying on more people
for help, rather than burdening a few who are nearby. This in turn reduces the burden for
professional support networks such as hospice services and Area Agencies on Aging. ‘
While providing mediated services to caregivers deﬁnes a new paradigm for care,
hospice agencies have always considered the support of caregivers as part of their
mandate. It is apparent from this project that it is the caregivers themselves who do not
see caregivers support services as the realm of hospice care.
Selecting criteria for judgement and projecting outcomes

As noted earlier, Bardach (2000) reinforces that projecting outcomes is the most
difﬁcult step in the policy analysis, and is often left out altogether. Using the Bardach
framework, the criteria that were selected for judging the alternatives described above
were: (1) increased cost verses social good; (2) implications for privacy; and (3)
implications for liability). The following outcomes and their trade-offs should be
considered in regards to providing mediated social support for hospice caregivers.

1. Hospice providers need to embark on an education program for caregivers,
detailing the services available to them as caregivers, and the beneﬁts to
caregiver health from using these services. This education program will
require creative solutions such as videotaped scenarios for describing potential
uses of telehospice. The inability of participants in this study to envision uses
of telehospice creates the need for an innovative educational program. The
trade-017r to hospice is that an education program will use human and

monetary resources in an industry already facing shortages.

96

2. The Centers for Medicare and Medicaid need to approve caregiver services
for reimbursement over and above the per diem rate provided for patient care.
The trade-01?r is that reimbursement for caregiver services will further deplete
the resources of Medicare and Medicaid. On the other hand, as noted earlier,
one of the most common reasons for admission of a hospice patient into the
hospital is because of caregiver exhaustion. Enhanced support services to
caregivers could alleviate this aspect of patient care.

3. The Centers for Medicare and Medicaid need to approve telemedical services
as reimbursable through the Medicare Hospice Beneﬁt to facilitate timely care
for patients and to facilitate caregiver well being. Again, the trade-of is
further reduction of Medicare and Medicaid budgets. Providing telemedical
services, however, has signiﬁcant beneﬁts to society. Telemedicine facilitates
care to people in rural areas who may not otherwise have access to this
important aspect of healthcare.

4. While it is important and necessary to have legislation guiding the provision
of healthcare in this country, the day-to-day decisions for care are left to the
physician supervising care. For telehospice to be a valuable resource for
patients and caregivers, the decision to use it must be available to the hospice
team. Legislation needs to be enacted that leaves delivery decisions to
provider, allowing them to use telehospice when it would be beneﬁcial. The
trade-oﬁr is that use of telehospice could be abused by not continuing in-
person patient care. Hospice programs will need to have reviews to guarantee

they are providing quality hospice care.

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5. Coverage of mental health services has been limited for some people in this
country. Insurance companies, as well as Medicare and Medicaid, need to
provide for coverage of mental health visits, including those delivered by
telemedical technologies. As noted earlier, mental health is an important
aspect of an individual's quality of life, and if not attended to, can become
very costly to society. The trade-oﬂ' is possible fraudulent use of technology.

Implications and Future Directions

Because of the descriptive nature of this study, speciﬁc implications for future
telemedicine research became evident. Results ﬁ'om this study illustrate the potential role
of telemedicine in providing social support to hospice caregivers. This indicates a shift in
the hospice paradigm, however, at least ﬁom the caregiver perspective. Caregivers in
this study constantly referred to services for the patient, but did not envision services for
themselves. Changes in policy such as those recommended here could have a signiﬁcant
positive impact caregivers. Hospice caregivers are providing an invaluable resource to
society and legislation needs to be in place to assist them in this important role.
Caregivers in Michigan felt they had a support network but some members of that
support network were not easily accessible. Technology is in place to facilitate support,
new the policy needs to be in place to facilitate technology.

Stren and Limitati

The purpose of this study was to examine the potential role of using telemedicine
to provide support services to hospice caregivers. Speciﬁcally, it looked at the current
network of social support of caregivers and the healthcare policy context for providing

telehealth services.

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Previous research on caregivers has looked at the effect social support has on
caregivers' lives. This study makes a unique contribution in its' examination of the policy
structure surrounding provision of additional services to caregivers. Through policy
analysis, this research used archival data and communication with policy experts to
establish a framework for providing mediated social support. Furthermore, the
discussions with caregivers highlighted their perceptions of the role of hospice as a
provider of services to them as well as the patients, and of their lack of insight into the
difﬁculties of providing care in rural areas.

This study is not without limitations, however. First, some see a single case as a
limitation. While caregivers were spread throughout 15 rural counties in Michigan, their
perceptions could be quite different from caregivers in other states. Nearly 100 percent of
the caregivers in this study were white. To gain a more complete understanding of the
role of telemedicine for providing support to caregivers, a more diverse population
should be sampled.

Because this researcher was interested in speaking with caregivers who are still
active in their caregiving role, and to better control the project, interviews were
conducted with caregivers of cancer patients who are still receiving hospice care.
However, one might get very useful data from participants who are done being
caregivers. They might have important insight after being away from the caregiving role
for some period of time. Another weakness of the study was the inability of participants
to envision a video technology. The researcher did not envision the difﬁculty participants
would have in discussing potential uses of telehospice, and therefore did not have

important interview probes in place to explain the system in greater detail.

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In addition, there were important voices omitted from this study: those providing
support to the caregiver. Receiving support is one-half of the equation. To gain a
complete perspective on the role of telemedicine in providing support, the perspective of
the support provider needs to be addressed. Would distant family members play a more
active role in providing emotional support if they were able to see as well as talk with the
caregiver? Would distant family members be able to provide respite for caregivers?
Would distant family members play a more active role in providing care, such as working
directly with professional service providers?

This dissertation provides a strong foundation for the next step of research and
action in this area. It is the beginning of a research and policy development agenda
which the researcher intends to continue. The next important step is to securing ﬁmding
to test the impact of telehospice equipment on social and emotional well being of
caregivers. Another important action is to talk with the support providers of caregivers
and ﬁnd out how they would like to use technology to aid in providing support. Finally,
it is important to further deve10p and implement the policy recommendations which were
the result of this research. Without governmental support, the impact of telemedicine for
caregivers could be severely limited.

In summary, this project makes a unique contribution to the study of hospice
caregivers by integrating the role of technology in the context of care. In addition, the
dual methodology of the study, a case study approach with caregivers and policy
analysis, provides additional insight into the potential of telemedicine for enhancing

support. However, this project is limited by its focus on Caucasian caregivers in

100

Michigan, the limited number of caregiver interviews, and the exclusion of support

providers from the study.

101

1.

APPENDIX A

CAREGIVER QUALITY OF LIFE INDEX

On a scale of l to 10, please rate your emotional quality of life, where lowest quality
applies to someone who is depressed, anxious, insecure, alienated, and lonely, and
highest quality of life applies to someone who is emotionally comfortable with self,
others, and environment.

On a scale of l to 10, please rate your social quality of life, where lowest quality
applies to someone whose social relationships are unsatisfactory, of poor quality, few;
and help ﬁ'om family and friends is not even available now and then. Highest quality
applies to someone whose social relationships are very satisfactory and extensive; at
least one person would assist him or her indeﬁnitely.

On a scale of l to 10, please rate your financial quality of life, where lowest quality
applies to someone who is constantly wonied about medical costs and present and
future living expenses. Highest quality of life describes someone who feels
conﬁdent of his or her ﬁnancial status now and in the future.

On a scale of l to 10, please rate your physical quality of life, where lowest quality
applies to someone who has no energy or is physically ill and feels unable to maintain
normal activities. Highest quality describes someone who is energetic, in good

physical health, and is able to maintain normal activity levels.

102

 

APPENDIX B

MULTIDIMENSIONAL SCALE OF PERCEIVED SOCIAL SUPPORT

1. There is a special person who is around when I am in need.

2. There is a special person with whom I can share my joys and sorrows.
3. My family really tries to help me.

4. I get the emotional help and support I need from my family.

5. I have a special person who is a real source of comfort to me.

6. My friends really try to help me.

7. I can count on my friends when things go wrong.

8. I can talk about my problems with my family.

9. I have ﬁiends with whom I can share my joys and sorrows.

10. There is a special person in my life who cares about my feelings.
I 1. My family is willing to help me make decisions.

12. I can talk about my problems with my friends.

103

APPENDIX C

OPEN-ENDED QUESTIONS

1. Do you have others who help you? If so, whom and how?

2. Have you been satisﬁed with the help others have given you? Why or why not?

3. Do you have someone you can talk to when you are feeling run down or blue? If so,
who and what do you talk about?

4. What would make your life as a caregiver easier?

5. If you had someone to do something special for you while you were a caregiver, what
would you ask for?

6. Does anyone ever provide assistance that is unhelpful? Whom? How?

7. Have family members or others criticized you about your caregiving role?

8. What has been the effect of caregiving on your physical health? On your emotional
health?

9. Have you needed services that you couldn't get? What services? Why weren't they
available?

10. Have you had difficulty submitting services to insurance/Medicare? Explain.

l I. If you could use technology such as a video phone call, would you use it to talk with:
your nurse; your social worker; a spiritual care worker from hospice; a ﬁnancial
counselor; someone from your church, family members living in other towns/states;

other?

104

 

APPENDIX D

SOCIODEMOGRAPHICS

. Age

. Gender

. Education

. Marital status

. Ethnicity

. Relationship to patient

. Amount of time spent w/ patient

. Amount of time for self

. Living arrangements

105

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