EXPERIENCES AND PROCESSES USED BY BLACK PEOPLE LIVING WITH A
CATHY L. CAMPBELL
A DISSERTATION PRESENTED TO THE GRADUATE SCHOOL
OF THE UNIVERSITY OF FLORIDA IN PARTIAL FULFILLMENT
OF THE REQUIREMENTS FOR THE DEGREE OF
DOCTOR OF PHILOSOPHY
UNIVERSITY OF FLORIDA
Cathy L. Campbell
This document is dedicated to my mother, Betty Campbell.
I would like to acknowledge the participants in the study and their families who
welcomed me into their homes and their lives. I thank my family and friends for their
loving support, especially my sister, Lisa, who has always encouraged me to take the
high road and provided editorial guidance. I thank Debbie Macmanamy for her tireless
hours of transcription. I always felt that I was putting the words of my participants and 9
months of work in your safe and capable hands.
I also would like to acknowledge the support of my committee who worked with
me to turn my vision into a research study that will contribute knowledge to the hospice
and palliative literature. I especially would like to acknowledge, Dr. Carol Reed Ash, my
supervisory chairperson. She has always been an advocate, a mentor and a friend to me
over the past 5 years.
This study would not have been possible without the support of Hospice of North
Central Florida and Malcolm Randall Veterans Administration Medical Center in
Gainesville, FL. This study was conducted with support of the Florida Alumni
Fellowship and the Office of Minority Programs Supplemental Scholarship.
TABLE OF CONTENTS
ACKN OW LED GM ENTS ................................................................................................. iv
LIST OF FIGURES ...................................................................................................... viii
1 INTRODU CTIO N ........................................................................................................
Statem ent of the Problem ..............................................................................................
Theory Developm ent in End of Life Care .................................................................2...
Significance of Theory D evelopm ent for Nursing .............................................3...
Definition of Term s ............................................................................................5...
2 REVIEW OF THE LITERATURE .............................................................................. 7
Theories of End of Life Care .....................................................................................7...
Stage Theories ....................................................................................................7...
Task-based Theories ......................................................................................... 10
Concepts in End of Life Care .................................................................................. 13
African American Perspectives at the End of Life........................................... 13
Cultural Influences on End of Life Care .......................................................... 16
Com fort........................................................................................................... 18
Hospice Care.......................................................................................................... 19
Evolution of Hospice in the United States ....................................................... 19
M medicare Hospice Benefit................................................................................ 20
Hospice Statistics.............................................................................................. 21
Sym ptom M anagem ent..................................................................................... 22
Quality of Life .................................................................................................. 24
Sum m ary.....................................................................................................................27
3 M ETH OD OLO GY ..................................................................................................... 28
Research Plan......................................................................................................... 28
Protection of Human Subjects.......................................................................... 28
Sample Selection .............................................................................................. 29
Recruitment ...................................................................................................... 31
Data Collection................................................................................................. 33
Considerations for Research in Vulnerable Populations.................................. 36
Data Analysis.................................................................................................... 37
Reliability and Validity .................................................................................... 39
Study Limitations ............................................................................................. 41
4 LIVING W ITH A LIFE-LIM ITING ILLNESS ...................................................... 43
Case Studies: Introducing a Context........................................................................ 43
M rs. Proctor's Story: Honor Thy Father and M other....................................... 44
M r. Jackson's Story: A Joyful Life .................................................................. 49
M r. King's Story: I'm Not Ready to Turn Loose............................................ 53
Mrs. Grace's Story: You Gotta Love God Without Wavering................. 58
M r. Dell: I Just Don't Have Use Enough of M y Body..................................... 62
Sociocultural Context....................................................................................... 67
5 KEEPING FAITH ................................................................................................... 72
Basic Social Psychological Process: Keeping Faith................................................ 72
Connecting with Family and Community ........................................................ 73
Passing the Torch ..................................... ............................................... 74
Healing Relationships....................................................................................... 74
Connecting with Others.................................................................................... 74
Connecting with God............................................................................................... 75
Personal Relationship W ith God ...................................................................... 75
Strategies to Connect with God........................................................................ 75
Answers from God ........................................................................................... 76
In God's Hands................................................................................................. 77
Taking It Out of God's Hands.......................................................................... 78
W working Through the Paradox ......................................................................... 79
Searching for M meaning ..................................................................................... 82
M meaning of Suffering ....................................................................................... 83
Religious M etaphors......................................................................................... 83
Connecting with Self ............................................................................................... 84
Affirming Thoughts and Speech: "It is a M ind Thing".................................... 84
Affirming and Denying .................................................................................... 85
Sources of Affirmations ................................................................................... 86
Personal Search for M eaning............................................................................ 88
Creating M meaning: W hat If M y Healing Is Not Physical? ............................... 89
Religion and Spirituality................................................................................... 92
Communication About End of Life Issues ....................................................... 93
6 DISCUSSION AND IM PLICATIONS ................................................................... 94
Religion and Spirituality.......................................................................................... 94
Integration of Religion and Spirituality............................................................ 94
Relationship as a Spiritual Concept.................................................................. 94
Connecting with Prayer .................................................................................... 95
Healing and Life-limiting Illness: Denial or Com fort...................................... 97
Beyond Symptom M management ....................................................................... 99
Theoretical M odels.......................................................................................... 100
Study Limitations ............................................................................................ 101
Implications of the Study........................................................................................ 102
Implications for Access to End of Life Care ................................................... 102
Im plications for Clinical Practice.................................................................... 103
Implications for Research............................................................................... 104
Recomm endations for Further Research ........................................................ 105
A PERMISSION TO UTILIZE INTERVIEW PROTOCOL.......................................107
B UF CONSENT FORM S ......................................................................................... 110
C HOSPICE APPROVAL LETTER.......................................................................... 117
D PATIENT RECRUITM ENT LETTER .................................................................. 119
E HIPPA AUTHORIZATION .................................................................................. 125
F VETERANS ADMINISTRATION DOCUMENTATION....................................132
REFERENCES ........................................................................................................... 150
BIOGRAPHICAL SKETCH ......................................................................................... 158
LIST OF FIGURES
3-1 C ore indicators......................................................................................................... 29
3-2 Disease specific indicators for congestive heart failure.......................................... 30
3-3 Disease specific indicators for pulmonary disease.................................................30
3-4 Interview G uide ...................................................................................................... 34
3-5. Religion/Spirituality Interview Guide .....................................................................38
Abstract of Dissertation Presented to the Graduate School
of the University of Florida in Partial Fulfillment of the
Requirements for the Degree of Doctor of Philosophy
EXPERIENCES AND PROCESSES USED BY BLACK PEOPLE LIVING WITH A
Cathy L. Campbell
Chair: Carol Reed Ash
Major Department: Nursing
The number of research studies that have been published in the hospice and
palliative care literature has increased over the past 10 years; however, there have been
few African American participants in the research studies and no conceptual frameworks
to synthesize the experience of African Americans living with a life-limiting illness at
home. The purpose of this study was to delineate a conceptual framework to synthesize
the experience of African Americans living with a life- limiting illness at home.
Symbolic interactionism was the theoretical framework used to guide the
development of the conceptual framework and to provide the foundation for the grounded
theory methodology used for data analysis. Thirteen people diagnosed with a life-limiting
illness participated in the study. The data collected and analyzed were transcripts from
28- audiotaped interviews, clinical information from a chart review and the researcher's
field notes. Case studies were developed from the data to provide a context to illustrate
and synthesize the experiences of the participants. Data analysis led to the discovery of
the basic social psychological process of "Keeping Faith."
"Keeping Faith" emerged as the basic social psychological process by which the
participants found comfort, searched for meaning and defined themselves in their social
context. There were three groups of strategies used in this process: connecting with
family and community, connecting with God and connecting with Self. The findings
suggest that religion and spirituality provide the foundation for the process of "Keeping
Faith" and its strategies. The findings from this study could be used to improve the care
of people receiving hospice and palliative care. Future studies are needed to explore the
evolution of the process of "Keeping Faith" over the period of a life-limiting illness.
Statement of the Problem
The number of research studies that have been published in the hospice and
palliative care literature have increased over the past 10 years; however, the researchers
have largely ignored the subjective experiences of African Americans receiving hospice
services at home. There have been few African American participants and no theory
development to synthesize the experience of African Americans living with a life-
limiting illness at home. The importance of honoring the experience of African
Americans living with life-limiting illnesses has been powerfully illustrated by noted
author Audre Lorde, an African American woman coping with the impact of her breast
cancer diagnosis. Lorde (1980) wrote:
The woman... who came to see me in the hospital, while quite admirable and even
impressive in her own right, certainly did not speak to my experience nor my
concerns....Yet every attempt I made to examine or question the possibility of a
real integration of this experience into the totality of my life and my loving and my
work, was ignored by this woman or uneasily glossed over by her as not looking at
the "bright side of things." (p. 56)
African Americans have been participants in studies that focused on dying in
institutions (hospitals and nursing homes) (Gates, 1988; Engle, Fox-Hill & Graney,
1998). Although patients and their families have interacted with many types of health
care providers during the course of an illness, the majority of the care for people living
with a life-limiting illness has been provided at home (Strauss, 1994).
African Americans have also participated in studies in which people who were not
terminally ill responded to hypothetical scenarios about death and dying (Kalish &
Reynolds, 1981; Neubauer & Hamilton, 1990; Caralis, Davis, Wright & Marcial, 1993;
American Association of Retired Persons [AARP Carolinas], 2003). A person diagnosed
with a life-limiting illness is doing the real work it takes to manage an illness in his or her
social context. Having subjects respond to hypothetical situations may not be the best
method to capture the experience of living with a life-limiting illness at home.
Theory Development in End of Life Care
The human experience of people who are dying lends itself to inductive description
and theory development. Qualitative research methodologies have been used to develop
theories to synthesize the experience of people who are dying in institutions. However,
these studies may have limited transferability to the care of African Americans dying at
The major limitations in this body of literature are: (a) no description of the ethnic
or racial composition of the samples used to develop the theories; (b) the theories were
developed to synthesize experiences of people dying in inpatient settings such as
hospitals, nursing homes and inpatient hospices; and (c) the participants were responding
to hypothetical situations (Glaser & Strauss, 1965; Glaser & Strauss, 1968; Kubler-Ross,
1969; Pattison, 1977; Copp, 1998; Leichtentritt & Rettig, 2000).
Johnson (1968) made an important distinction between borrowed theories (those
developed from other disciplines and drawn upon by nursing) and unique theories (those
derived from the observation of phenomena and asking questions unlike other
disciplines). This study is an opportunity to use grounded theory to develop a unique
conceptual framework to add to the knowledge base for hospice and palliative care
nursing. The term grounded theory is used to designate theory generation that is grounded
in the data. The determination of problems, concepts and theoretical schema are made by
examination of the actual empirical social world rather than by working with a
simulation, model or a picture of the world that conforms to the dictates of some pre-
ordained schema (Harris, 1996).
Grounded theory is especially useful when little information is known about a
phenomenon and few adequate theories exist. This method, with its theoretical
framework of symbolic interactionism, is an ideal way to study people who are living
with a life-limiting illness. The foundation of this framework is based upon individual
meaning and unique interpretation of experience (Bowers, 1989; Hutchinson, 1999).
The major premises of symbolic interactionism are: (a) human beings act towards
things on the basis of the meanings those things have for them, (b) meanings arise out of
interaction of the individual with objects and the social world, and (c) the meanings arise
out of the process of interaction between people or objects. Actions of others are
instrumental in the formation of the meaning for any given object (Blumer, 1969).
Each person initiates an interpretive process when there is an interaction with the
social context or social environment. This process is an active, dynamic process of
formulation, reconsideration and revision in response to the environment. The
identification of the context is very important because the interpretive process is initiated
in response to conditions in a specific context (Hutchinson, 1999).
Significance of Theory Development for Nursing
Theory development in nursing started because of the mandate to demonstrate a
distinct body of nursing knowledge. At this time it is imperative that palliative care
nursing develop theory to provide a foundation for our practice (Walker & Avant, 1995;
Farrell & Funk, 1996). Nurses should be concerned about the lack of theory development
based on the experiences of African Americans for three reasons. First, the lack of theory
development has left nurses without a framework to organize recurring themes and issues
in palliative care. Such a framework provides a format to facilitate discussion with other
nurses about the experiences of African Americans who are dying and how these
experiences compare or contrast with the others receiving hospice care.
Secondly, theories that have been developed from samples that are predominantly
white or where the researcher has not described the ethnic composition of the sample may
not be appropriate to use as the foundation for the care of African Americans living with
a life-limiting illness (Walker & Avant, 1995). Boutain (1999) wrote, "generation of
knowledge about African Americans using theories that are not tailored to or suitable to
their concerns is unacceptable (p. 44)."
Third, nurses have not been able to contribute concepts to the state and national
efforts to increase the number of African Americans using palliative care services. The
literature contains many anecdotal and research articles describing barriers to access to
palliative care, but there is little research focusing on the subjective experiences of
African Americans who are living with a life-limiting illness (Gordon, 1995; Gordon,
1996; Jackson, Schim, Seely, Grunow & Baker, 2000). Concepts from theory
development can be integrated into the outreach programs and may increase the number
of African Americans who choose palliative care services. (Boutain, 1999; Engle et al.,
In summary, research that has explored the end of life experiences of African
Americans has focused on people dying in institutions or the researcher has asked the
subjects to respond to hypothetical scenarios. There appear to be no studies designed to
develop theory to synthesize the actual experience of African Americans living at home
with a life-limiting illness.
The purpose of this study is to delineate a conceptual framework that describes the
experiences and processes of African Americans living with a life-limiting illness. The
research study was guided by the following questions:
1. How do African Americans who have been diagnosed with a life-limiting illness
describe their experiences living with their illness?
2. What is the basic social psychological problem that they share?
3. What is the basic psychological or sociological process used by people living with
a life-limiting illness to manage that problem?
Definition of Terms
Life-limiting illness. A life-limiting illness is a disease for which the physician has
certified that a person has a life-expectancy of 6 months or less. The life-expectancy of
six months or less may also be documented by the presence of one or more of the core
and disease-specific indicators for congestive heart failure (CHF) and chronic obstructive
pulmonary disease (COPD) that may be used to predict mortality within approximately
six months or are parameters that may indicate the lowest survival rates (National
Hospice Organization, 1996).
Hospice. The hospice philosophy is a comprehensive, holistic model of care that is
designed to meet the needs of people diagnosed with a life-limiting illness and to provide
emotional and spiritual support to their families. Hospice is a benefit covered under the
Medicare program and the Medicare Hospice Benefit (MHB) reimburses a hospice
program on a per diem rate to provide clinical services, medications, equipment and
supplies that are related to the care of the life-limiting illness.
Veterans administration home-based primary care. Veterans administration
home-based primary care is a nurse-practitioner-directed program that provides patient
care and case management services to homebound veterans living within a fifty-mile
radius of Veterans Administration Medical Centers in north central Florida.
REVIEW OF THE LITERATURE
Theories of End of Life Care
Copp (1998) has identified two major categories of theories of death and dying:
stage theories and task-based theories. Copp's typology will be used to organize this
portion of the literature review. The stage theories that will be presented in this review of
literature will be the theories of Kubler-Ross (1969), Glaser & Strauss (1965), Glaser &
Strauss (1968) and Leichentritt & Rettig (2000). The task-based theories that will be
presented are the theories of Pattison (1977), Copp (1998) and Byock (1996).
Kubler-Ross's five-stage model (Kubler-Ross, 1969) is commonly recognized as
one of the seminal theoretical frameworks in death and dying. This theory is significant
for four reasons: (a) the theory was one of the earliest inductively derived theories about
individual reactions to diagnosis of life-limiting illness, (b) this model introduced theory
to the general public and health care professionals, (c) it initiated the debate about death
and dying in the U.S. and (d) the theory was identified as a catalyst for the hospice
movement (Siebold, 1992).
The stages of the theory are anger, denial, bargaining, depression and acceptance.
The theory explains how a person adjusts to the diagnosis of life-limiting illness. One of
the criticisms of the theory is that it is prescriptive; that is, it mandates the stages a patient
must go through in a linear fashion. However, in the original book, Dr. Kubler-Ross
(1969) stated, "these stages do not replace each other, but can exist next to each other and
overlap at times (p. 263)." Health care professionals have tried to narrow the experience
into these specific stages. These attempts to use the theory as prescriptive may have
resulted because this stage theory awakened the conversation about death and dying in
this country and it was for many the first exposure to a systematic description of the death
process (Copp, 1998).
Glaser and Strauss developed two grounded theories from the same data set that
was developed from interviews in hospitals in the San Francisco Bay area. The first
theory described how the social context in a hospital defined and interacted with dying
patients. The second theory explicated the temporal features of dying in hospitals (Glaser
& Strauss, 1965; Glaser & Strauss, 1968). The development of these theories is
significant for three reasons.
First, they were among the first studies to use grounded theory as a research
methodology and a strategy to develop theory. Secondly, the theories were developed
during a period when health care was in transition and the parameters of life and death
were changing. Prior to the 1960s, infections were the primary cause of death in the
United States. Cardiopulmonary resuscitation and ventilator support were new
technologies and the majority of people died at home. In contrast, the introduction of
antibiotics, improved nutrition and immunizations extended life-expectancy and therefore
a person was more likely to die from a chronic illness than from an acute infection. The
use of life-sustaining technologies provided medicine with the ability to sustain people in
conditions that would have been unquestionably fatal just a decade earlier (Alexander,
2000; Dorff, 1991; Brody, Campbell, Faber-Langendoen & Ogle, 1997).
Third, the researchers introduced the concept of social definition to the study of
death and dying in a facility. The concept of social definition was explored by asking
two important questions, "How do interacting people come to define themselves and
others" and "How do they make redefinitions over time?"
Glaser and Strauss (1965) described four contexts of death awareness between
staff and patients, changes in the structure of care for people in each context, and
communication by patients and staff within the context. Closed awareness occurred when
staff members were aware of the patient's poor prognosis and did not disclose this to the
person. Nursing and medical staffs engaged in activities to keep the secret. Suspicion
awareness is seen as an unstable situation in which the patient begins to suspect and
begins activities to confirm his or her suspicion. The staff counters these seeking
activities with evasion, especially maintaining control of facial and body mannerisms
when dealing with the patient concerned. This may evolve into the stage of mutual
pretense when both the person and the staff choose to pretend that the person with the
life-limiting illness is going to live.
When the staff and patient both know the prognosis, this context is still fraught
with difficulty for staff, person and family. This stage gives rise to conflict when the
person's construction of the appropriate death differs from the family and health care
Glaser and Strauss (1968) published a study on the dying trajectories of the
subjects in their previous work (Glaser & Strauss, 1965). These trajectories were: (a)
certain death at a known time, (b) certain death at an unknown time, (c) uncertain death
but at known time when the certainty will be established and (d) uncertain death and an
unknown time when the question will be resolved. The findings of this study suggested
that the person with the life-limiting illness and the clinical staff could work together to
negotiate and to manage the trajectory of "certain death at an unknown time." The
limitations of Glaser and Strauss (1965) and Glaser and Strauss (1968) were that the
theories focus primarily on the experience of the health care providers and the theories
were developed from the study of social structures in an institution.
Theoretical perspectives on death and dying have also been conceptualized as
task-based theories. Pattison (1977) built on the work of Glaser and Strauss (1965, 1968)
by combining a stage theory and a task-based approach to suggest interventions for
clinical staff that are providing care to people who are dying.
Pattison proposed the living-dying interval as time period occurring between the
crisis knowledge of death and the point of death. The living-dying interval has three
phases: the acute crisis phase, chronic living-dying phase and the terminal phase. The
first task of the staff is to deal appropriately with reactions of the client in the acute crisis
phase so that the person's life does not disintegrate into chaos. The second task of the
health care providers is to respond to the ways the person adapts to the chronic living-
The third task is to enable the person to move into the terminal phase. The onset
of this phase is often not precise but is seen to begin when a dying person starts to
withdraw from the outside world. The major limitation of this model is that it does not
take into account that dying people exhibit a wide variety of emotions and behaviors
during the dying process.
Copp (1998) undertook a study from a nursing perspective using grounded theory
methodology to focus on hospice patients' construction and management of their
experiences in confronting impending death and on their nurses' experiences in caring for
the individuals as they died. This prospective study of the lives of 12 hospice patients was
also used to extend the work of Glaser and Strauss (1968) by focusing on the trajectory:
certain death at an unknown time. This study developed a readiness to die conceptual
map. A person could be in one pattern or mode at a time, or could change between
modes depending on the physical condition of the person's body and the person's
acceptance of imminence of their death. The study validated that patients with a life-
limiting illness are active in managing their own illnesses that is distinct from the
physiological processes that nurses and physician manage such as pain, dyspnea and
Byock (1996) proposed a developmental model that conceptualizes the experience
of dying well as an opportunity for personal growth, embodying a sense of enhanced
sense of meaning and a sense of completion. It is a task-based theory that is suggestive,
rather than prescriptive. It suggests developmental landmarks and tasks for the end of
life. Some of the landmarks are (a) a sense of completion with worldly affairs, (b) sense
of completion in relationships with community, (c) sense of meaning about one's
individual life, (d) experienced love of self and others, (e) sense of completion in
relationships with family and friends, (f) acceptance of the finality of life and (g)
surrender to the transcendent. The landmarks are tools used to guide clinicians to
anticipate issues and support the patient to recognize opportunities if they choose to do
so. This model was developed using subjects who were receiving hospice care primarily
Leichtentritt and Rettig (2000) developed a theory that described the salient
features of a good death as defined by Israeli elders. The model incorporated themes
from three distinct time periods: (a) prior the physiological death, (b) the physiological
death and (c) after the physiological death. This model included many of the same
developmental landmarks as Byock (1996); but in contrast, the significance of this model
is that it considers that a good death also includes the importance of acknowledging that
after the physiological death people are concerned about how their values and wishes will
be honored in a funeral or memorial service. The study also emphasized the concept of
continuity. The concept of continuity validates that a person's life continues to influence
others after death through the legacy he or she has created.
The existing theoretical models that have been developed to synthesize the
experiences of people living with a life-limiting illness have contributed to knowledge
base for hospice and palliative care. The theory developed by Dr. Kubler-Ross has been
cited so frequently over the past thirty years that the initial power and significance of this
work has been diluted. Researchers are still testing parts of the models developed by
Glaser and Strauss (1965, 1968). Two of the theories listed in this literature review were
developed from concepts from their work. However, they may have limited
transferability to the care of African American living at home because the studies were
developed in institutions (except for Byock, 1996) and the ethnic composition of the
samples used to develop the theories were not identified.
Concepts in End of Life Care
African American Perspectives at the End of Life
Overall there is a life-expectancy for men and women born in the United States of
76.9 years. The life-expectancy is (a) White females (80.2), (b) Black females (75.5), (c)
White men (75) and (d) Black men (68.6) (Centers for Disease Control, 2001). Blacks
have a higher age-adjusted death rate for the top three causes of death heart disease,
cancer, and stroke, when compared to Whites, non-Hispanic, Hispanic, Asian/Pacific
Islanders and Native Americans in the years from 1996-1998 (Centers for Disease
Control, 2000). The top four causes of death for African Americans are as follows: (a)
heart disease, (b) cancer, (d) accidents and (e) COPD (Centers for Disease Control,
Kalish and Reynolds (1981) wrote, In the behavioral and social scientific studies
the experiences of African Americans who are dying are absent. We can only posit that if
Blacks had written their own history and anthropology, death might have been more
discussed" (p. 94). This is still an accurate assessment as we enter the 21st century. There
are few studies about death and dying that have focused exclusively on African American
participants or in comparison with other ethnic groups. The studies that have been
identified will be presented in the next part of the literature review.
Kalish and Reynolds (1981) conducted a seminal study that compared and
contrasted the way that people in four ethnic groups thought about death, dying and
grieving. African Americans living in an urban setting in the western part of the United
States (US) were compared with Japanese-Americans, Mexican-Americans and Anglo-
Americans in a community survey with face-to-face interviews, participant observation in
death settings (ward of terminally ill, funerals, coroner's office) and in-depth interviews
with selected participants. The average age of all respondents was 47.3 years of age. The
respondents (who were not terminally ill) answered hypothetical questions about a
number of issues related to death and dying.
One of the concerns in the study was how to unbundle the origins of African
American beliefs about death, dying and grief from four possible sources (a) African
values and beliefs, (b) the imprint of the dominant culture, (c) values and mores of the
socioeconomic class or (d) unique to being part of being Black in the U.S. The Black
participants were found to affirm life even in the face of statistics about lower life
expectancies and personal experience of death and loss, such as experiences of coping
with the loss of family by violent death, accident and war (original data collection early
In comparison with the other ethnic groups African American subjects (a) were
least likely to be afraid of dying; (b) had attitudes about death that were most likely to be
influenced by religion, including mystical experiences; (c) were most likely to prepare for
death by taking out life insurance; and (d) the second most likely to have made funeral
arrangements. The only cultural influence on end of life decision making was religion
and mystical experiences.
Gates (1988) conducted an ethnographic study that compared the dying experiences
of two groups of people with life-limiting illness: those who enrolled in a hospice
program (inpatient and home) and people who were hospitalized, but not enrolled in
hospice. This study was conducted in a large metropolitan area with a large Black
population and there were nine African American patients in the study and 15 White
patients. Comparisons were made between the African American and White participants.
The major difference between the African American and the White participants was that
the Black participants were more disclosing about the importance of religious and
spiritual support during illness and in their lives. In contrast, the White participants
stated that while their spirituality is important, it is a private matter to share with family,
friends and their own clergy, but not hospital staff.
The participants did not mention cultural factors related to care. However the
researcher noted accommodations made by the staff of the hospice and hospital for
dietary needs and to support a Black patient's need to have larger numbers of extended
family members present during the dying process.
Engle et al. (1998) compared and contrasted the experiences of Black and White
terminally ill nursing home residents (n=13). The participants in this qualitative research
study reported their own experiences in six major areas: attitudes about dying, pain,
nutrition, religion, caregiving, care receiving and coping. There were no differences in
the areas of attitudes about dying, nutrition, caregiving, care receiving and coping.
However, there were differences in experiences with pain management and religion.
African American residents consistently reported moderate to severe pain of
prolonged duration, especially at night and were unable to receive pain medications. In
contrast, White residents rarely reported pain and if they did, they reported that adequate
pain relief was achieved. In the area of religion Black residents tended to have more
fundamental/charismatic beliefs, yet both Black and White residents believed in (a) a
trusting, positive, loving God; (b) a definite sense of right and wrong; (c) the Golden rule;
(d) the importance of attending church and (e) having little or no fear of dying.
Caralis et al. (1993) studied the influence of race and ethnicity on end of life
decision making. African American, Hispanic and Non-Hispanic white (NHW)
participants completed a questionnaire that contained a series of scenarios and questions
about their health care experiences and those of their family members. The participants
were not terminally ill and 42% self-reported that they were in good health. The
responses of African Americans were compared with the responses of Hispanic and Non-
Hispanic white participants (NHW). The study results suggest that African Americans
were less likely to agree with physician assisted suicide under any circumstances, more
likely to want intervention even if the outcome was futile, found that quality of life was
less important when compared with Hispanic and NHW participants and were more
likely to select aggressive interventions than Whites, Hispanics or Asians. In a similar
vein it has been suggested that in comparison with other ethnic groups African
Americans are less likely to want to die at home (Kalish & Reynolds, 1981; Neubauer &
Cultural Influences on End of Life Care
Love (1996) introduces a possible cultural influence on end of life decision
making: the experiences of Black Americans whose medical treatment was denied or
delayed because of racism. The author presents a study that followed the myths
surrounding the death of the famous African American physician, Dr. Charles Drew, who
sustained injuries in a car accident and failed to receive appropriate treatment because of
his race. Through the use of oral histories and document review of newspapers, books,
and personal letters she studied the events surrounding Dr. Drew's death. Dr. Love
writes that the mythology associated with Dr. Drew's legend is not literally true, but it
reveals a large truth at the heart of African American culture: it demonstrates the
continuing psychological trauma of segregation and racism in American life (Love,
1996). The legend's existence highlights the fact that the history many people live is not
what is learned in the history books, but what has been personally and indirectly
experienced in relationship with family members and others in the community and what
is passed down as folklore, art, music and other forms of cultural expression.
However, other authors posit that neither the historical legacy of social injustice
and unequal treatment nor the spiritual perspectives of death and dying are predictive of
an individual's choices for end of life care (Crawley, Payne, Bolden, Payne, Washington
& Williams, 2000). Barrett (1995) suggests that the manner by which members of any
given family handles death seems to depend on many factors: their cultural background;
social, economic and political context; their individual psychology and their family
Scholars have been reluctant to generalize African American beliefs and customs
about death because as Blacks have migrated and/or improved socioeconomic status they
have generally taken on standards and mores of their new communities and social class
(Barrett, 1995; Kalish & Reynolds, 1981). When people are preparing for their death they
make take different routes on the journey that may be in the context of culture, but it does
not necessarily mean that end of life decisions, such as a choice of a hospice program, are
made on the basis of culture alone (Staton, Shuy & Byock, 2001).
The major limitation of studies about death and dying that have included African
American participants is that few prospective studies included African Americans who
are living with a life-limiting illness with the notable exception of the qualitative studies
of Gates (1988); Wilson, Hutchinson and Holzemer (1997) and Engle et al. (1998). In
the other studies that identified African-participants, the subjects were not identified as
terminally ill and were responding to hypothetical situations or questions (Kalish &
Reynolds, 1981; Caralis et al., 1993; Eleazer et al., 1996; Neubauer & Hamilton, 1990;
AARP Carolinas, 2003).
Providing comfort is a key aspect of nursing care for people in advanced illness,
and nurses are evaluated by the ability to provide comfort. However, the concept of
comfort is broader than the relief of physical symptoms. Diverse conceptualizations of
comfort appear in the literature, such as being or feeling fully integrated and a sense of
wholeness within oneself and in relationship to the world (Arruda, Larson & Meleis,
1992); "At home",feeling at home is to experience oneself as being present, as being part
of and related to, as an experience of integrity (Rasmussen, Jansson & Norberg, 2000)
and the state of an integrated whole body (Morse, Bottorff & Hutchinson, 1995). These
definitions have the experience of integration in common but do not mention anything
specifically about symptom management.
Another description of comfort in the literature is illustrated with a quote from a
hospitalized Hispanic cancer patient in Arruda et al. (1992): One can get used to feeling
pain but doesn't get used to not being comfortable... .1I can be comoda in a very nice
room, having many things, lots of attention, but this doesn't make me comfortable (p.
Other components of comfort identified in the literature are normalcy, feeling
good physically without signs or symptoms of disease, nurture (in relationship to giving,
receiving, gratitude and appreciation), safety and control (Arruda et al., 1992). Common
themes in the description of comfort are the experience of its opposite: discomfort;
(Morse et al., 1995; Duggleby, 2000); feeling of being fragile and unsafe; (Rasmussen et
al., 2000; Morse et al., 1995) being isolated or alone to deal with the symptom
(Rasmussen et al., 2000; Roberts, Thorne & Pearson, 1993). Comfort is a broader
concept than symptom management and is an important part of the subjective experience
of people living with a life-limiting illness. The studies that have been included in this
review illustrate the importance of capturing the experience and descriptions of the
person living with the illness rather than relying on evaluation by family and staff.
Evolution of Hospice in the United States
The hospice movement in the United States (U.S.) began in the mid-1960s with
the seminal work of Dr. Kubler-Ross and Dr. Cecily Saunders. Beginning in the mid-
1960s the use of technology blurred the line between living and dying and during that
time 53% of the deaths in the U.S. occurred in the hospital and other institutions (Glaser
& Strauss, 1968). Dr. Kubler-Ross wrote of the experiences of people diagnosed with a
life-limiting illness in a book that was widely embraced by the general public and health
care professionals. In contrast Dr. Saunders and her work with St. Christopher's Hospice
influenced the training of doctors and nurses and was instrumental in the development of
the hospice concept in the U.S.
Inspired by lectures from Dr. Kubler-Ross and Dr. Saunders and visits to St.
Christopher's Hospice, the interdisciplinary Yale Study Group discussed end of life care
in the community and completed a community survey to have a better understanding of
end of life issues in the late 1960s. The work of Dr. Saunders, Dr. Kubler-Ross and the
Yale group, among others, led to the declaration that the poor medical care provided to
people who were dying was a major sociological problem in the United States.
They supported the development of the hospice philosophy as an alternative to medical
care provided by traditional biomedical practitioners in the hospital (Siebold, 1992;
Paradis & Cummings, 1986).
The hospice philosophy is a comprehensive, holistic approach to care designed to
meet the physical, emotional, social and spiritual needs of the person enrolled in the
hospice program and the family, including major attention to effective symptom control
and pain management. Effective symptom management can make exploration of other
issues of a psychosocial or spiritual nature much easier. Life is affirmed and hospice
interventions neither hasten nor postpone death. A component of hospice care is medical
care, but the goals of the care are no longer to cure the disease and therefore the tension
that may be inherent in maintaining futile treatment is removed. Hospice provides
support and care for persons in the last phases of incurable disease so that they may live
as fully and comfortably as possible (Lattanzi-Licht & Connors, 1995; National Hospice
and Palliative Care Organization [NHPCO], 2003).
Medicare Hospice Benefit
The Medicare Hospice Benefit (MHB) was started in 1982 and forever
revolutionized the practice and business of hospice care in the U.S. This legislation
increased regulation, shifted what had been an alternative to traditional biomedical
treatment to the mainstream and increased fiscal pressures to manage the prospective
payment for all costs related to the terminal illness. The MHB created a mechanism to
pay for hospice for people with a limited life-expectancy. The benefit pays hospice
programs a per diem rate to cover the services of the hospice clinical team and the cost of
medication, equipment and supplies that are related to the hospice illness.
The hospice model of care requires that two physicians certify that the person
enrolled in hospice has a life-expectancy of six month or less. Hospice care and its
financial benefits cannot start without this certification. Additionally this legislation
mandates that 80% of total patient days must be provided at home.
The person who enrolls in hospice must agree to palliative care rather than
curative treatment. An interdisciplinary team comprised of physicians, nurses, social
workers, home health aides, volunteers and clergy provides hospice care. The registered
nurse coordinates the majority of the direct care services, helps the family and other team
members to interpret symptoms and provides patient and family education. The nurse
can also facilitate increasing the intensity of direct patient care services, especially as
death approaches. (Moore & McCullough, 2000).
The most recent statistics describe the primary diagnoses, age range, average
length of stay and gender distribution of people enrolled in hospice programs in the
United States. The majority of people enrolled in hospice have cancer diagnoses
(53.6%). However, the number of people with non-cancer diagnoses has increased. The
top five non-cancer diagnoses are (a) Endstage heart disease 10%, (b) Dementia 7%, (c)
lung disease 6%, (d) Endstage kidney 3% and liver disease, 2% (NHPCO, 2003).
The age range, average and median length of stay and gender distribution are (a)
approximately 78% of the people enrolled in hospice are 65 or older and 53.1% are 75
years of age and older; (b) the average length of stay for people enrolled in a Medicare-
certified hospice program is estimated at 51 days and the median length of stay is 26
days, (c) 77% percent of people enrolled die within 6 months and (d) 55% of patients are
female and 45% are male (NHPCO, 2003; Dunkle, Kart & Luong, 2000; Moore &
One the major concerns about the hospice movement is lack of ethnic diversity of
the people enrolled in hospice programs. It has been suggested that the conditions of
participation of the MHB have been a barrier to access for minorities. (Bly & Kissick,
1994; Gordon, 1995; Gordon, 1996). The people served by the early hospice programs
were predominantly white, middle-class people with cancer diagnoses and a stable
support network in the early days of the movement (Buckingham & Lupu, 1982). The
early participants in hospice were looking for an alternative to traditional biomedicine.
However, African Americans in the early 1970s were not looking for an alternative to
mainstream medicine. They were looking for equal access to the technology and facilities
of biomedicine. The National Hospice and Palliative Care Organization estimated in 2003
that the ethnic diversity of the people receiving hospice services was 82% White, 8%
African American, 3.4% Hispanic and 1.6% other ethnic identities and 4.8 with ethnicity
unknown (NHPCO, 2003).
Hospice research has focused primarily on symptom management by using
descriptive studies. Weitzner, Moody and McMillan (1997) described the physical,
psychosocial and functional symptoms that had been documented with highest frequency
in hospice patients. The most common physical symptoms are pain (Herman & Looney,
2001; Duggleby, 2000; Letiza, Shenk & Jones, 1999; Weitzner et al., 1997), dyspnea
(Herman & Looney, 2001; Webb, Moody & Mason, 2000; Roberts et al., 1993) and
constipation and urinary elimination (Weitzner et al., 1997).
The major limitation of symptom management research is that it focuses on one
aspect of the experience, the symptoms and not on the totality of the experience of living
with a limited life-expectancy. The studies cited in this literature review focused on
individual symptoms separate from the full context of the life of the person with life-
limiting illness. People rarely have one physical or psychological concern. They are
usually a combination of concerns (Duggleby, 2000; Weitzner et al., 1997; Staton et al.,
2001). Herman and Looney (2001) suggested that people who are dying have on average
7 physical symptoms.
A weakness in the quantitative studies that have described physical symptoms in
this review of the literature is that data have been collected from retrospective chart
reviews, usually after the death of the person (Weitzner et al., 1997; Webb et al., 2000;
Herman & Looney, 2001) or collected information from caregivers (Letiza et al., 1999).
In contrast, Roberts et al. (1993) triangulated data collection methods by using a
quantitative tool, participant observation of the activities of patients and nurses and
interviews with the patients. The study described the experience of late stage cancer
patients with dyspnea and identified (a) that the presence of this symptom was a barrier to
all aspects of daily life, (b) patients coped in isolation and (c) there was inconsistent
understanding of the phenomenon by nurses. This study was the only one about
symptom management that has suggested that patients use strategies distinct from those
ordered by the physician or from nurse initiated interventions.
There are also studies that suggest that the experience of pain is broader than a
physical experience. McMillan (1996) in a study of the impact of hospice on QOL found
that pain factored on the emotional subscale rather than the physical. Duggleby (2000)
developed a grounded theory of pain in elderly hospice patients with cancer. The pain
was found to have physical and psychological components. The etiology of the pain was
from the cancer, other diseases, loss of physical functioning, feelings of helplessness and
dependency. One of the weaknesses identified in that study was that it was difficult to
study the experience of pain separately from the whole experience of the elderly hospice
patient. A broader perspective on the experience of living with a life-limiting illness is
found in the quality of life literature.
Quality of Life
The study of quality of life has come closest to exploring the full subjective,
multidimensional experience of people living with a terminal illness, rather then focusing
on symptom management alone. Moreover, the study of quality of life of people living
with a life-limiting illness validates that terminally ill people are able to participate in
research and illuminates the challenges faced by researchers who study this population.
Over the last ten years researchers have been studying quality of life (QOL) of
people enrolled in hospice and palliative care programs for three purposes: (a) to evaluate
quality of life as an outcome of palliative care provided at home or in facility-based care
(Stewart, Teno, Patrick & Lynn, 1999; McMillan, 1996; Hardy, Edmonds, Turner, Rees
& A'Hern, 1999; Tang & McCorkle, 2002), (b) to determine the impact that quality of
life may have on the length of hospitalization after admission to hospice and (c) to
describe the relationship between quality of life and the place of death for people enrolled
in hospice programs (DeConno, Caraceni, Groff, Brunelli, Donati, Tamburini &
Ventafridda, 1996; Smeenk, de Witte, van Haastregt, Schipper, Biezemans & Crebolder,
Multidimensionality. Most researchers recognize that there is subjectivity and
multidimensionality to QOL evaluation. Although the researchers rarely defined the
concept of QOL in their studies, the concept was measured in quantitative studies as a
multidimensional concept and the interview guides used by qualitative researchers also
reflected multidimensionality. The five most common domains identified in the
literature are physical, psychological, spiritual, social/role function and overall perceived
quality of life (Haas, 1999; McMillan, 1996; Spiroch, Walsh, Mazanec & Nelson, 2000;
DeConno et al., 1996; Wilson et al., 1997; Smeenk et al., 1998; Stewart et al., 1999;
Thomson, 2000). Researchers captured multidimensionality in three ways: (a) by using
factor analysis (McMillan, 1996; Smeenk et al., 1998), (b) by using tools whose items
were already separated into domains or broad areas (Spiroch et al., 2000; Thomson,
2000, Wilson et al., 1997) and (c) using multiple tools to capture aspects of quality of
life (Smeenk et al., 1998; Bretscher, Rummans, Sloan, Kaur, Bartlett, Borkenhagen &
Loprinzi, 1999; DeConno et al., 1996).
Subjectivity. Subjectivity refers to the reliance on information received from the
person living with the life-limiting illness. The studies of quality of life reported data
from the person enrolled in a hospice or palliative care program using questionnaires,
visual analogue scales and interviews (Bretscher et al., 1999; Smeenk et al., 1998;
DeConno et al., 1996; Wilson et al., 1997; Spiroch et al., 2000). Only in a rare instance
were data collected from family members or members of the health care team (McMillan,
1996; Bretscher et al., 1999). In the studies where quality of life was evaluated by family
or members of the health care team, the quality of life score of the person enrolled in
hospice or palliative care was correlated with the score of the family member or member
of the health care team. The findings were mixed: Bretscher et al. (1999) found that the
scores of the patient and health care team were more closely correlated than the scores of
the patient and family member. In a similar vein, McMillan (1996) found that there was
low correlation between the quality of life evaluation of the patient and caregiver.
The conclusions about the impact of hospice and palliative care were inconsistent.
Studies found that there was no change in quality of life during the period of hospice and
palliative care (Bretscher et al., 1999; McMillan, 1996), there was an improvement in
physical aspects of quality of life only (Smeenk et al., 1998) and there was an
improvement in overall quality of life without evidence that any individual domain
showed improvement (Hardy et al., 1999).
The inconsistent conclusions about quality of life may be due to a least two
reasons. The studies that did not define the hospice or palliative care variable could not
link specific outcomes to types and frequencies of services provided. There are many
types of services that can be provided by programs as mandated by Medicare certification
or on request of the family. Secondly, perhaps the dimensions measured did not capture
all of the domains salient to the person living with a life-limiting illness.
Exploring racial and ethnic diversity will need to be built into future studies of
quality of life to reflect the increasing diversity of people receiving hospice services.
Only two of the studies listed racial or ethnic distribution of the participants (McMillan
1996; Wilson et al., 1997). Moreover, there were few qualitative studies despite the
natural fit of qualitative methods to explore the subjective, multidimensional concept.
These studies have demonstrated that the hospice and palliative care population can
participate in research studies, although there are many challenges. Many of the studies in
the review of literature mentioned issues inherent to the study of the vulnerable
terminally ill population such as: (a) changing physical, emotional and cognitive status,
(b) attrition from the studies due to decreased physical status, participant death and (c)
the emotional nature of death and dying issues discussed in the interviews (McMillan,
1996; Hardy et al., 1999, Spiroch et al., 2000; DeConno et al., 1996; Wilson et al., 1997;
Thomson, 2000). Also, in the study of quality of life Wilson et al. (1997) demonstrated
that people in advanced stages of disease use processes and are able to articulate these
processes to maintain, sustain and redeem quality of life.
The literature review included the following subjects in end of life care: theory
development, African American perspectives at the end of life, cultural influences,
hospice services and hospice research related to symptom management and quality of
life. This body of literature has four major limitations: (a) there are few African
American participants in end of life research studies, (b) African Americans were more
likely to participate in studies where they responded to hypothetical scenarios about death
and dying, (c) theory development is focused on the experiences of people who are dying
in inpatient settings and (d) there is no theory development to synthesize the experiences
of African Americans living with a life-limiting illness at home. The current study was
conducted to contribute to the hospice and palliative care literature by identifying a
conceptual framework that describes the experiences and processes of African Americans
who are living at home with a life-limiting illness.
Hospice of North Central Florida (Hospice) is a Medicare-certified hospice
program with an average daily census of 600 patients in a 17 county rural area in north
central Florida. At the time of data collection the program was divided into seven patient
care teams. Three teams are based in Gainesville: a team that provides direct patient care
at home, a team that provides hospice services for residents in long term care facilities
and a team that provides care at the E.T. York Hospice Care Center, an inpatient and
residential care facility. Additionally, there are four satellite offices, one each in Palatka
(Hospice of the Lakes), Lake City (Hospice of the Suwannee Valley), Trenton (Hospice
of Tri-County) and Jacksonville (Hospice of Jacksonville). All are a part of the Hospice
of North Central Florida Network.
Veterans Administration Home Based Primary Care (VAHPC) provides case
management services to veterans who live within a 50-mile radius of Gainesville or Lake
City. Nurse practitioners provide primary care in the home of veterans who are not able
to travel to an outpatient clinic or hospital for primary care services.
Protection of Human Subjects
The proposal was submitted to and approved by the Institutional Review Board
(IRB) at the University of Florida, Research Committee at Hospice of North Central
Florida, Veterans Administration Subcommittee for Clinical Investigation (Gainesville)
and Veterans Administration Research and Development Committee (Gainesville) prior
to the start of recruitment and data collection.
In grounded theory research sample selection initially starts with purposeful
sampling to find information rich cases to meet the informational needs of the study. The
inclusion criteria were as follows: English speaking Black men and women who
had a diagnosis of cancer, congestive heart failure (CHF) or chronic obstructive
pulmonary disease (COPD)
had a life-limiting illness as evidenced by the presence in the clinical record of
either: the documentation of a physician's certification of a life-expectancy of six
months or less or the documentation of one or more of the core and disease-specific
indicators for CHF and COPD that may be used to predict mortality within
approximately six months or are parameters that may indicate the lowest survival
rates (National Hospice Organization, 1996).
demonstrated the willingness to talk about their experiences living with their
were 50 years of age or older
had the cognitive and physical status to participate in up to 2-3 interviews of 30-45
minutes in length over a period of a month. (The clinical indicators are presented in
Figure 3-1. The disease specific indicators for CHF and COPD are presented in
Figures 3-2 and 3-3 respectively).
Physical Decline and/or life-limiting conditions(s)
Weight Loss>10% over the past 6 months
Serum Albumin < 2.5 gm/dl
Dependence in most ADL's
Kamofsky Score < 50%
Need for frequent medical intervention/hospitalization
Patient/family want supportive care
Documentation that active curative treatment has ended and palliative care is now the
goal of treatment
Figure 3-1 Core indicators. From "Medical Guidelines for Determining Prognosis in
Selected Non-cancer Diseases," by The National Hospice Organization, 1996,
The Hospice Journal, 11, pp. 47-59.
I Recurrent congestive heart failure (CHF) with New York Heart Association
(NYHA) Class IV symptoms in a patient on optimal diuretic and vasodilator therapy.
Patients with Class IV symptoms are patients with cardiac disease resulting in inability to
carry on any physical activity without discomfort. Symptoms of heart failure or of the
anginal syndrome may be present even at rest. If any physical activity is undertaking,
discomfort is increased.
A. Documentation of ejection fraction of 20% or less (not required if not
B. The patient experiences persistent symptoms of congestive heart failure
despite attempts at maximal medical management with vasodilators and
C. The patient is not a candidate, either by medical criteria or personal choice
for a heart transplant, or re-transplant if he or she is rejecting a previously
II. Other factors that may decrease survival are as follows:
A. History of cardiac arrest and resuscitation in any setting
B. History of syncope of any cause, cardiac or otherwise
Basal systolic BP less than 120 mm Hg
Figure 3-2 Disease specific indicators for congestive heart failure. From "Medical
Guidelines for Determining Prognosis in Selected Non-cancer Diseases," by
The National Hospice Organization, 1996, The Hospice Journal, 11, pp. 47-
Patients who fit the following parameters can be expected to have the lowest survival
I. Severity of chronic lung disease documented by:
A. Disabling dyspnea at rest, poorly responsive to bronchodilators,
resulting in decreased functional activity for example: bed-to-chair
existence, often exacerbated by debilitating symptoms such as fatigue
B. Progressive pulmonary disease as evidenced by: increasing visits to
Emergency Department or hospitalizations for pulmonary infections
and/or respiratory failure.
II. Documentation of physical signs of Cor Pulmonale (Right sided heart
failure (RHF)-neck vein distention, peripheral edema, hepatomegaly
A. Resting tachycardia greater than 100 beats/minute
B. Unintentional progressive weight loss of greater than 10% of body
weight over the preceding 10 months.
Figure 3-3 Disease specific indicators for pulmonary disease. From "Medical Guidelines
for Determining Prognosis in Selected Non-cancer Diseases," by The National
Hospice Organization, 1996, The Hospice Journal, 11, pp. 47-59.
Two groups of participants who met the inclusion criteria were recruited for the
study to capture the variations in the experiences of people living with a life-limiting
illness: people enrolled in hospice and receiving care at home and people who were
enrolled in a home care program, but were not receiving hospice services.
Sample selection using the inclusion criteria initially yielded participants who had
been in hospice for over six months at time of the first interview. After the first three
participants completed their interviews, the researcher sought out people who had been in
the program for less than six months. This was accomplished by seeking referrals from
the admissions clinical team who are the first people to have contact with patient and
families. This strategy enabled the researcher to interview people who had been in the
program less than six months.
Recruitment and data collection were started with the hospice team in January
2003. After the proposal was approved as noted above, the researcher presented an
overview of the research project to the hospice clinical teams in the satellite offices
within a 50-mile radius of Gainesville. Hospice team members were asked to identify
people who met the inclusion criteria and would be willing to participate in the study.
After the first presentation, the clinical team requested a letter to be used by the staff to
present the study to potential participants and their families (See Appendix D for
Participant Recruitment Letter). The teams identified a contact person and the researcher
contacted that person by phone every 2-3 weeks to see if there were referrals for the
Originally, participants with a life-limiting illness, but not enrolled in hospice,
were to be recruited from another data collection site. There were no referrals from that
site from January 2003 to May 2003, and so negotiation began with the Director of the
Veterans Administration Home-based Primary Care (VAHPC). Approval by the IRB and
VA committees was granted in August 2003 and recruitment and data collection began
with the VA participants in September 2003.
The researcher provided an overview of the project to the clinical manager at
VAHPC prior to initiating data collection and left a copy of the patient/family letter for
distribution to nurse practitioners providing care to patients within a 50-mile radius of
Gainesville. The researcher called the nurse practitioners to request referrals for the study
every 2-3 weeks.
At both sites, once a person was identified as meeting the study criteria, a clinical
team member contacted the person about participating in the study and obtained
permission for the researcher to call the patient's place of residence and to have the
patient's contact information (name and phone number) given to the researcher. The
clinical team members were asked only to identify and contact people who would be
willing to participate in the study. The researcher obtained the informed consent.
All of the visits were made to the participant's home. If a primary caregiver was
available, the caregiver was asked to be present in the home during the interview to meet
the needs of the participant. The research protocol was reviewed with the participant and
the caregiver, if available, prior to data collection. If the participant agreed to participate
in the study, the consent form was signed prior to data collection. Verbal assent was
sought at each interview to assure that the subject wished to continue with the study and
agreed to be audiotaped. The participant was reminded at each visit that the interview
and/or audiotaping could be stopped at any time and the participant could decline to
answer any question. People with a life-limiting illness can be viewed as a vulnerable
population and every effort was made to be attentive to verbal and non-verbal
communication, asking participants about their well-being and taking breaks as needed
(Leichtentritt & Rettig, 2000).
Data collected for this study is as follows: a clinical chart review, audiotaped
interviews, and researcher field notes. The chart was reviewed for documentation to
confirm the primary diagnosis, symptoms or test results related to the primary diagnosis or
the presence of the doctor's certification of the participant's life-limiting illness.
The interviews were 30-45 minutes in duration and there were one to three
interviews per participant (The interview guide is presented in Figure 3-4). The first
interview was the longest because it involved the informed consent process. The duration
and number of interviews was based upon participant physical, cognitive and emotional
status. Data collection was conducted at the homes of the participants living within a 50-
mile radius of the university.
The sample was comprised of ten men and three women, ranging in age from 58-
90 years. The average and mean age was 73.3 and 70 respectively. The primary
diagnoses for the sample is as follows: seven of the participants were diagnosed with
cancer, four with congestive heart failure (CHF) and two with chronic obstructive
pulmonary disease (COPD). The participants completed 28 interviews over a period of
1. Tell me about your life?
Where were you born?
What kind of work did you do?
How many children do you have
2. Tell me about your illness?
Probes: What is your diagnosis? When were you diagnosed? What did
you hear the doctor say about your illness?
3. Think about living with your illness right now, what problems are
of most concern or most distressing for you?
4. Describe how you spend each day.
5. What does being in hospice/homecare mean to you?
6. What would you like to have in your life today to make you feel
7. How would you describe your life?
8. What is the hardest thing about living with your illness?
9. How would you describe your quality of life right now?
10. What contributes to the quality of your life?
11. What is most important to you?
12. What would you like the last week of your life to be like?
13. What would you share with others going through this?
14. Is there anything else that you want to tell me about your
experience with this illness and the way it as affecting your life?
Figure 3-4 Interview Guide. From "Salvaging Quality of Life in Ethnically Diverse
Patients with Advanced HIV/AIDS," by H.S.Wilson, S.A. Hutchinson, &
W.L. Holzemer, 1997, Qualitative Health Research. Questions 2-14 Used
with permission of the author.
A transcriptionist transcribed the audiotaped interviews. The transcriptionist was
given tapes labeled by the researcher with only the number assigned to the participant and
the date of the interview. There was no identifying information released to the
transcriptionist. The researcher added dialogue when the transcriptionist was not able to
hear or to understand the aphorisms and references used by the participants. The
transcripts were transcribed with focus on the spoken word. No effort was made to
capture every feature of the conversation such as non-verbal sounds, length of pauses, or
emphasis on certain syllables (Sandelowski, 1994).
Occasionally voices of family members or other background noise could be heard,
but this was not transcribed nor was the person identified by name because these people
had not consented. There were data that could not be transcribed because they were
inaudible or unintelligible to transcriptionist and researcher.
Some of the tapes were difficult to transcribe due to mechanical difficulties,
researcher inexperience with the equipment and physical/structural limitations of
participants such as ill-fitting dentures, the absence of dentures and facial edema. One
participant did not permit tape recording of his interview and so the researcher took notes
during the interview and transcribed them after the interview as described by Patton
After each interview, the researcher typed field notes that included information
about the setting of the interview, the participant's physical condition, response to the
interviews and concluded with the researcher's reflections about the visit.
The information collected from the interviews, chart review and field notes were kept
confidential. The audiotapes were labeled with a number and date(s) of the interview.
The field notes were labeled in the same manner as the audiotapes. No other identifying
information appeared on the tape or cassette case and upon completion of data analysis
the tapes will be stored at the university office of the researcher.
The researcher kept a journal, field notes and a master file containing the names,
diagnoses, addresses, phone numbers of the subjects, demographic data, tapes and
original transcripts. The dissertation supervisory committee may have access to the
audiotapes, field notes, the master file, original transcripts, and data analysis products.
After the completion of the study the audiotapes, journal, field notes, the master file,
original transcripts and data analysis products will be kept for three years in a locked file
cabinet at the university office of the researcher.
Considerations for Research in Vulnerable Populations
Many of the studies in the review of literature mentioned issues inherent to the
study of the vulnerable terminally ill population such as changing physical, emotional
and cognitive status; attrition from the studies due to decreased physical status;
participant death; and the emotional nature of death and dying issues discussed in the
interviews (Spiroch, et al., 2000; Roberts, et al., 1993; Rasmussen, et al., 2000; Zlatin,
1995; Duggleby, 2000; Lambrindou, 2000; McMillan & Weitzner, 2003).
Discussion of death and dying issues may cause emotional upset or cause
unanticipated issues to surface, therefore the research plan included a plan for contacting
the hospice or home care staff for emergency follow-up (Kalish & Reynolds, 1981;
Leichtentritt & Rettig, 2000). For hospice patients the procedure was: for interviews that
were done Monday through Friday from 8 a.m. to 5 p.m., a team manager was to be
called and the primary on-call nurses were to be called after 5:00 p.m. Monday through
Friday, weekends and holidays to initiate follow-up as indicated; for Home Based
Primary Care patients the procedure was that for interviews that were done Monday
through Friday from 8 a.m. to 4:00 p.m., the VAHPC office was to be contacted and after
4:00 p.m. the physician on-call in the Gainesville VA emergency room was to be called
to initiate follow-up as indicated.
The proofread transcripts, researcher field notes and the chart review data were
the source for data analysis. The NVivo computer program was used to manage the
transcribed data (QSR International, 2002). The process of data analysis in grounded
theory is the constant comparative method that is concerned with generating and
plausibly suggesting categories, properties and hypotheses about the data. There are four
major steps used in the constant comparison method: (1) Open coding is the analytic
process through which concepts are identified and their properties and dimensions are
discovered in the data. Incidents and themes are compared from each interview and field
notes with other incidents and themes from previous interviews, (2) Axial coding is the
process of relating categories to their subcategories because coding occurs around the
axis of a category integrating categories and their properties, conditions, causes,
consequences. Axial coding begins the process of integrating the data that was analyzed
during open coding. (3) Selective coding is the process of integrating and refining the
theory and (4) Writing the theory is the last step in the process (Glaser & Strauss, 1967;
Strauss & Corbin, 1998; Sandelowski, 2004). The interview questions may be refined
during the initial period of data collection and analysis (Bowers, 1989).
As the level of interpretation increases, the theory becomes more abstract. The
data are saturated when no more new data or instances can be identified. The core
variable or the variable that explains most of the process becomes the basis for emerging
theory. The researcher is looking for the basic social psychological process or basic
social structural process that is linked to the core variable (Hutchinson, 1999;
Sandelowski, Davis & Harris, 1989).
At this stage, the researcher also returned to the literature to compare and contrast
initial data analysis from this study with extant literature and theory (Hutchinson, 1999).
The literature was not used as data but rather to use the properties and dimensions
derived from the literature to examine data from the study (Hutchinson, 1999; Gibson,
2000). After the initial data analysis and review of literature the interview guide was
amended to add questions that explored the use of religion and spirituality while living
with a life-limiting illness (Figure 3-5 contains the Religion/Spirituality Interview
During our interviews you have talked about (the researcher inserts one or more of the
following topics as the basis for follow-up questions) as part of your religious/spiritual
Talking with God
Praise and thanksgiving
Other religious/spiritual themes:
Figure 3-5. Religion/Spirituality Interview Guide
Reliability and Validity
Researchers and people who wish to utilize research want to be assured of the
trustworthiness and rigor inherent in quantitative and qualitative research. Quantitative
researchers evaluate trust worthiness of a study by addressing issues of internal validity,
external validity, reliability and objectivity. However, Lincoln and Guba (1985) have
suggested the use of terms that are more consistent with the philosophy of naturalistic
inquiry that is the foundation for qualitative research methodologies.
The naturalist equivalent for the positivistic terms internal validity, external
validity, reliability and objectivity are credibility, transferability, dependability and
confirmability, respectively. In quantitative research, assuring the internal validity of a
study is one of the most important ways to demonstrate trustworthiness and rigor.
Demonstrating internal validity is done to assure that the outcome of a quantitative study
is due to the manipulation of the independent variable. There are many methods used to
remove threats to internal validity, such as choice of study design, randomization in
experimental designs and use of statistical analysis.
Qualitative researchers are not striving to control threats to internal validity for
the same purpose as quantitative researchers. Qualitative researchers want to control
threats to validity by including methods to assure trustworthiness and credibility.
Credibility addresses whether or not the findings are credible to the research participants.
Credibility will be assured by building into the protocol opportunities for the participants
to review and comment on study findings and interpretations, where possible.
Two other important criteria of trustworthiness in quantitative research are
applicability and generalizability. However, qualitative researchers are not striving to
demonstrate statistical generalization or analytic generalization. In qualitative research
there is not the imperative to have control over the sample to make it statistically
representative, to make the results generalizable. Yet the qualitative researcher wants to
control a study's internal validity to build a strong study so that others may be able to use
Therefore, qualitative researchers are striving for transferability. The findings in
qualitative research most often appear in the form of themes or a conceptual model
(Sandelowski & Barroso, 2002). Questions are asked of the findings, "Can these findings
be useful in other areas?" Transferability in naturalistic inquiry is a process that is
initiated by the production of thick description in transcripts and data interpretation. This
provides the reader enough information to reach a conclusion about whether transfer can
be contemplated as a possibility. (Lincoln & Guba, 1985; Hutchinson, 1999).
The main premises of quantitative research focus on stability, control and
predictability. Lincoln and Guba (1985) suggested that the focus on control and
predictability is demonstrated by the ability to replicate a study. Hutchinson (1999)
stated that the question of replication is not relevant in grounded theory development
because the purpose is to develop new perspectives on a given situation, theory is
modifiable and the belief in consistency is unrealistic in natural settings.
Providing the dissertation supervisory committee with the opportunity to review
transcripts may enhance credibility and dependability. The dissertation supervisory
committee will have access to the audiotapes, original transcripts, data analysis products,
researcher's journal and field notes and may elect to audit this work product at any point
during the process (Lincoln & Guba, 1985; Arruda, et al., 1992, Roberts, et al., 1993;
Zlatin, 1995; Duggleby, 2000; Lambrindou, 2000; Leichtentritt & Rettig, 2000).
Limitations in this study were having to rely on participants selected by the
clinical team members, bias introduced by the physical and cognitive inclusion criteria,
wide variation in the length of stay in hospice or home care program, limited
opportunities to establish the credibility of study findings with participants and the
limited geographical, religious and spiritual perspectives of the participants. A
discussion of each limitation will be provided in the following paragraphs.
The research protocol required that the researcher seek recommendations from
members of the clinical team about possible participants for the study and that the
researcher could not access the clinical chart until the participant had signed a consent
form. This procedure produced limitations in the study because researcher did not have
access to all potential participants, but instead only to those thought by the clinical staff
to be appropriate. Clinical staff have been identified as a threat to internal validity in end
of life research due to their need to protect patients, their own biases about research and
fear that this study may increase their workloads (Roberts, et al., 1993; McMillan &
Weitzner, 2003; Sutton, Erlen, Glad & Siminoff, 2003).
Bias was introduced into the study by the inclusion criterion of requiring
participants who had the cognitive and physical status to participate in up to 2-3
interviews of 30-45 minutes in length over a period of a month. It provided access only to
people who had few physical limitations. Therefore, this criterion did not allow access to
possible variations in the sample such as, but not limited to, people who were closer to
death and had more physical limitations but were cognitively intact.
A wide variation in the length of time in the hospice and homecare program at the
time of the first interview was another limitation in the study. For example, National
Hospice and Palliative Care Organization estimates that the median length of stay (LOS)
is 26 days and the average length of stay is 51 days. (NHPCO, 2003), the LOS in both of
the programs at time of interview ranged from 2 weeks to 5 years. Three of the hospice
participants had been in the program for over a year at the time of their interviews. (Two
of those had been in the program for 5 years.) One of the hallmarks of grounded theory
is the identification of the properties of a process. A process can be described as a
sequence of action/interaction occurring over a period of time (Strauss & Corbin, 1998).
Mapping the temporal properties and making comparisons between people or within
groups was difficult with divergent lengths of stay and 2-3 interviews completed over a
period of a month.
The research protocol limited the number of interviews to three interviews due to
concerns about physical and cognitive status of the participants, the need to let the
participants know specifically what may be asked of them and the possibility that
participants may not be alive for follow-up. Opportunities were lost to seek clarification
and feedback from the participants who may have been able to give consent to participate
in further interviews or telephone contact with the interviewer.
Finally, the participants in the study were African Americans living in rural
communities in northern Florida. Religious and spiritual perspectives were based in
Judeo-Christian religious traditions. Findings from this study may not be transferable to
other African Americans with diverse religious and cultural experiences living elsewhere.
LIVING WITH A LIFE-LIMITING ILLNESS
The interviews started by inviting the participants to share their life stories and
illness journeys. Their narratives spoke of good things in their lives, such as love of
family, a personal relationship with God and the belief in a life well lived. Some of the
participants also spoke about painful situations in the present and the past such as the
deaths of family members, the loss of a home due to a fire, incarceration of children,
failings as parents and personal losses due to their illness. Yet, through it all they
communicated the belief that they would continue to endure no matter what happened in
their lives. This belief has been identified also in the work of another researcher who has
studied death and dying beliefs of African Americans. Robert Kastenbaum (personal
communication, 1972 as cited in Kalish & Reynolds, 1981) stated, "Our impression is
that maintaining life has required so much energy, endurance and resourcefulness that
they would not think of letting go just because things might get tough in one way or
another" (p. 100).
Case Studies: Introducing a Context
Symbolic interactionism emphasizes the importance of the context, that is, the
social, cultural or symbolic environment that surrounds a person (Bowers, 1989;
Hutchinson, 1999). Mariano (1999) identified the construction of case studies as a
method to present the environment that surrounds a person. The presentation of the
context is important to the current study for three reasons. First, it will provide
information on the worldview of people who are living in that context. This worldview
shapes how they define themselves and how they solve problems in interaction with the
context. Second, the introduction of the context provides a vehicle to enter into the lives
of the participants in the study and to connect with them on a personal level. Third, the
context is important to people who may want to transfer the findings to other settings.
Research studies done in one context may not be transferable to other contexts without a
description of the environment of the study (Boutain, 1999).
The five case studies that are presented illustrate the experiences of African
Americans living with a life-limiting illness. Each case study will include a brief
biographical sketch, an overview of their illness journey as lived by the participant, my
description of the encounters and reflections from the interviews. The biographical
sketch was developed from the transcripts and my field notes and it integrates
information from the lives of the participants that is separate from the illness. The
overview of the illness journey was also developed from the transcripts and field notes
and the overview describe the story of their illnesses up to the time of their interviews
with me. The description and reflections will consist of my description of the participant
and my thoughts during the research process. The names of the participants and the staff
have been changed to pseudonyms to maintain anonymity. A summary of the concepts
illustrated by the case studies will be presented at the end of the chapter.
Mrs. Proctor's Story: Honor Thy Father and Mother
Mrs. Proctor's story illustrates the power of affirming relationships through
connections with ancestors, the community and the African American church. She used
stories to describe the ancestors who she believed to be the source of her values and drew
strength from the connection to her ancestors. Her story also illustrates that because of
the relationships that she created with her students, she was provided with a home where
she was loved and honored. Although a primary caregiver is not a requirement for
enrollment in hospice, the presence of a caregiver or a network of caregivers increases
the likelihood that a person will be able to live at home.
Mrs. Proctor was recommended as a participant for the study by her social
worker, Mary. Mary told me that Mrs. Proctor was very alert and eager to talk about her
experiences. I called the home to make an appointment and spoke with Julia, her
caregiver. Mrs. Proctor lived in a bright yellow house at the end of long, bumpy, rutted
country lane. Julia met me at the door and talked with me about the purpose of the study.
After the explanation I was escorted back to Mrs. Proctor's room. On the first visit to her
room I did not see any medical equipment. I eventually realized that the small table that
held her books, glasses and other personal items was an over-the-bed table that
commonly accompanies a hospital bed. The hospital bed was in the comer covered with
a multi-patterned quilt and an African American doll in the style of Raggedy Ann and
Andy. On the wall across from the bed there was a formal picture of Mrs. Proctor, three
fancy hats and a clear plastic frame holding a rose. Her electric keyboard was leaning
against the wall. She wore a simple dress and covered her hair with a turban for the
interviews. She always wore a watch and her wedding ring.
Biographical sketch. Mrs. Proctor was an 89-year-old retired music teacher. She
had lived all of her life in the rural communities of north central Florida and the Florida
Panhandle. She proudly told her history as the granddaughter and daughter of people
who were enslaved. Her grandmother was born in Africa and brought to the Carolinas as
a slave. She was a midwife and provided care to Blacks and Whites in her community.
Mrs. Proctor's father was born enslaved and became a Baptist minister in his community.
At this time she is the only surviving member of her family of origin. She notes that
while most of her family lived into their eighties, her mother lived to be ninety three and
her grandmother, who was born in Africa, was estimated to have been between 112 and
114 years of age at her death.
Religious belief, church attendance, and the structure of the Black church have
been a part of her life for as long as she can remember. Two of her brothers were
ministers and she joined the church when she was 10 years old. At this time she is a
mother in her local church. The church mothers are leaders in the congregation. They
model appropriate behavior, provide feedback to the congregation in direct and subtle
ways and serve as the moral compass for everyone in the church.
The belief in the power of education was another family value. She and two of her
brothers became teachers and she completed a college degree at a time when it was
unusual for a woman of any race to have a degree. She taught music in two communities
in rural North Florida for 39 years and retired at age 79. At the time of her retirement she
had been teaching in the community where she has lived for 28 years. She was one of the
first African Americans to teach in her rural community after the schools were
desegregated. She divorced her first husband and 24 years later married her second
husband. He died in January 1995. She did not have any biological children with either
husband. She has a niece in Leesburg who is her legal representative but is not actively
involved in her day-to-day care.
Music was a large part of her life. She sang and played the piano. When she was
teaching in the Florida Panhandle she would travel with a trio to Alabama and perform on
the radio for fifteen minutes each week. She did not remember the name of the trio but
did remember the song they closed with, "Nobody Knows the Trouble I've Seen." She
also led and participated in various choirs with her students and in the community with
adults. Using music as her ministry, she passed on some of her family values to her
students. She taught life lessons such as the value of hard work, the importance of getting
an education, respect for parents, that African American children should develop a
variety of skills and the importance of learning history. She would learn how effective
her lessons had been during the course of her illness.
Illness Journey. Mrs. Proctor's description of her illness journey was focused on
specific events and therefore the chronology of events was often missing. She states that
she had been hospitalized in the late sixties and then not again until she became sick three
or four years ago. She spent some time in a nursing home for rehabilitation after one of
her hospitalizations. Although her recall of much of her medical history is at times poor,
she is acutely aware of her arthritis because it has affected her ability to play the piano.
Prior to referral to hospice, she remembers talking with her physician about the
possibility of dialysis, but it was determined that she did not need to initiate that therapy.
Her long-term physician made the referral to hospice for her. To her, hospice means a
volunteer who reads to her and keeps her mind stimulated and visits from nice visitors.
She had been in hospice for 17 days at the time of her interview, and she was
having few physical symptoms at the time except for occasional constipation, urine
retention and headaches. However, for the past five months she had been seeing people
that no one else in the household had been seeing. It did not distress her that she was
seeing something that no one else was seeing and she knew it was not real. She stated,
"Some of this I see, I call it a fantasy." She was very angry with the people that she was
seeing. One of her second husband's relatives (sister or former sister-in-law) figured
prominently in the visions. She felt that these people represented some unresolved anger
over the way she way she was treated after the death of her husband. Although she did
not say it directly, it is possible that the visions may have also represented Mrs. Proctor's
anger at her husband during his lifetime and the financial issues that came to light after
Her former students came to visit her in the nursing home and once surprised her
by getting a group together to sing for her while she was there. Julia and another one of
Mrs. Proctor's s students made regular visits to see her at the facility and when she
returned home. She returned home for a time, but it became increasingly difficult for her
to care for herself and her dog and companion, "Lady Bird."
When Julia found out that Mrs. Proctor was having trouble caring for herself at
home, she invited Mrs. Proctor to move in with her family. At the time of her
interviews she had been living with Julia for 8 months. When she made the move she
had to give up two things very important to her, her piano and Lady Bird. She states that
giving up her piano and Lady Bird were the two hardest things about living with her
illness. Julia did not have room for her dog and so Lady Bird was not able to move with
her. Mrs. Proctor's goddaughter now takes care of Lady Bird and brings her to visit. Julia
borrowed an electric keyboard from her mother so that Mrs. Proctor would still have her
music with her in her new home.
Mrs. Proctor's students continue to provide emotional support to her while she is
living with Julia. Her students sent flowers on Mother's day and two former students
visited, prayed and worshipped with her at Julia's home. One of the students even took
up a small offering. She was very surprised and quite pleased with that. She has even
chosen one of her students to play the music at her funeral.
Researcher reflections.Early into the first interview, I realized three things. First,
she wanted to be able to share her history and have the words written down before she
lost those memories. Second, her occupation as a teacher transcended a specific subject.
She taught important life lessons using the medium of music. She also passed down the
legacy of service from her grandmother and father. For her, teaching was not a job, but
something she was called to do. Third, I realized that now I was one of her students, too.
She was in many ways a pioneer: a college-educated African American woman,
one of the first African American teachers to teach in the schools in her county after
integration and a singer who traveled in the Florida Panhandle and performed gospel
music and then was featured with her trio on a fifteen-minute radio show each week in
the late 40s. My visit provided her an opportunity for life review. She gained strength not
only from the relationships in her life today, but also from being the granddaughter of a
mid-wife and pastor's daughter.
Mr. Jackson's Story: A Joyful Life
This case study was chosen because it illustrates two significant themes. First,
people living with a life-limiting illness rely on their family members to interact with the
medical community, including researchers. The informed consent process in this context
is initiated in connection with significant family members. Secondly, African Americans
will participate in end of life research studies, even when they have physical limitations,
when a researcher invests time to create a relationship with the participant and family.
Mr. Jackson was an 81-year-old widower living with his son and daughter in a rural
community 15 miles to the east of the university. He was diagnosed with prostate cancer
and had been in the hospice program for 5 weeks at the time of his interview. He met me
twice, once alone and once when his daughter was present. At the first visit to his home,
I was met at the door by Mr. Jackson's son. He escorted me through the sun porch and
into the living room. Mr. Jackson was sitting in his wheelchair that was placed facing the
television set. He was wearing a ribbed tank top and a pair of pajama bottoms. The cut of
his tank top emphasized how thin he was and made it easier for me to visualize his
collarbones and the veins in his neck. I sat down to the right of Mr. Jackson, introduced
myself and explained the purpose of the visit. Communication was difficult because Mr.
Jackson spoke with a soft voice and was hard of hearing. He rarely made eye contact.
I explained the purpose of the study and what would happen if he agreed to
participate in the study. He requested that I meet with his daughter before he would
agree to be in the study. He also voiced a concern about confidentiality and did not want
to have anything taped. He asked me to come back when his daughter, Betty was
I spoke with Betty and made arrangements to come out when she was at home five
days later. This time Betty met me at the door and walked with me into the living room.
We sat down on the couch and talked about the study. He had shared his concern about
confidentiality with Betty and she wanted to make sure she understood what was being
asked of him and how the information would be kept private. Once she was satisfied with
the explanation of the study, she asked me to wait in the living room while she asked her
father's permission for me to come into his bedroom to talk with him. He agreed to meet
with me again.
Today he seemed a little weaker. He was lying in his hospital bed wearing pajama
bottoms covered with red and black dots and a ribbed tank t-shirt. He had no sheets or
blankets covering him and his concave abdomen could be seen through the pajama
bottoms. The bed was covered with a white sheet and green and white bed pads. His
room was rectangular and his bed was placed up against the left wall. Across from his
bed and up against the right wall was a quad cane, bedside commode, folded up
wheelchair and a small table (a small TV table) that was covered with medication bottles,
a small white medication box and a various personal items.
His recumbent position made it even more difficult for me to hear him on this
visit. On this visit I positioned my chair to the left side of bed facing him so we could
make eye contact. Betty sat on the bed next to her father. I reviewed the purpose of the
study with both of them. He repeated that he would like to talk with me but did not want
to have anything taped. He was also wanted to know what type of medical information
would be collected. After the initial explanation of the study, Betty would occasionally
step out to tend to things in another room or to answer the phone.
Biographical sketch. Mr. Jackson was born and raised in the rural community
where his interview had taken place. He left home for military service, first to Ft.
Stewart, Georgia, and then overseas to Japan. He returned to his rural community in
1946 and has lived there ever since.
Illness journey. He was first diagnosed with prostate disease in 1999. It was hard
to hear what he was saying, but he used hand gestures to demonstrate the difficulty the
doctors had in passing a catheter and to simulate the blockage in the prostate that he said
was "blocked up tight." Apparently he had been ill for a while before he had been
referred to hospice. I asked him how he had gotten referred to hospice and he stated, "I
don't know nothing about it." His daughter had set it up. He called Betty "his
interpreter." She told me that she had initially called the American Cancer Society for
financial assistance and was referred to hospice.
He was very weak and the informed consent portion consumed 45 minutes so the
interview was short and focused on his biographical information, his family and the
general evaluation of his life. He described his life as being wonderful because he had
lived a long life and he was quite pleased that he had lived to be 81 years old. He
attributed his wonderful life to a wonderful family, a joyful life and his personal belief in
God. He stated that although he had not lived a life in the church, he believed that God
had guided him and was responsible for him being here now. His belief has gotten
stronger over time. The interview ended and Mr. Jackson and I made plans to meet the
following week, but he was too weak to participate. The family did not permit any further
contact due to his condition. He died a month after his last interview.
Researcher reflections.The interview was at first stressful for me because of the
need to explain the study multiple times, communication challenges and note-taking in
lieu of audiotaping the interview. When all of the informed consent process was
completed and we began to talk, it was as if the sun had come out after a rainstorm. He
began to grin and his joy started to pour out into the room and splashed on to me. I could
not help laughing and soon he and his daughter were laughing, too.
At first, I could not tell that he was joking. He first started to tease me about taking
notes. He did not want his interviews to be taped, but did permit me to take notes. I am
sure I looked distressed as I was furiously trying to write down what he said. The
laughter loosened me up and allowed me to be present with him rather than focusing on
The interview was relatively short in duration due to his physical status, yet he was
able to communicate the joy in his life, his love for his family and his personal belief in
God that transcended a specific house of worship. Also during the course of the
interview I got to see that he relied very heavily on his daughter, and for him his daughter
was part of the informed consent process. I also wondered if he was testing me to make
sure that I was someone who could be trusted with his stories.
Mr. King's Story: I'm Not Ready to Turn Loose
Mr. King's case study was chosen to illustrate variations in the experience of living
with a life-limiting illness. His case study illustrates a trajectory of the advanced stages
of a chronic illness, the desire to talk about death and dying issues, a personal
relationship with God and a paradox between affirming God's omnipotence and pursuing
Mr. King was a 70-year-old man living with his niece in a rural community 30
miles north of the university. He was separated from his wife and he had one son. He was
diagnosed with chronic obstructive pulmonary disease (COPD) and had been receiving
care for over six years from the Veterans Administration's (VA) home care agency, but
was not enrolled in hospice.
Biographical sketch. Mr. King was born in a small town near the gulf coast of
central Florida. He and his family moved to the community where he is now living
when he was 10 years old. Around the same time his father was killed at 33 years of age
in a dispute with a girlfriend. It was not clear from the transcripts or my field notes
whether the family move was as a consequence of his father's death.
He talked at length about his work in construction and the pleasure he got from
seeing the results of his work in different places such as sidewalks, curbs and buildings.
This work also provided him with the means to provide a home for his mother and sisters
after the death of his stepfather when Mr. King was 17 years old. He had dreams of
being a space scientist while growing up and had taken some tests that indicated he had
above average intelligence. He graduated from high school but instead of going on to
college he entered the military. He worked in a branch of the service that dealt with
chemical, biological and radiological agents and was able to use his interest in science in
When he left the service he returned home but did not pursue a college education.
Instead, he went back to construction work to provide for his wife and son. When asked
about the GI bill, he said that it was not set up for them at that time in the 1950s. He
alluded to some of his disappointments but did not go into detail. He did become tearful
while talking about the premature deaths of some of the men he grew up with in his
community. He wondered how much some of things they were exposed to in the military
contributed to their deaths. He also spoke about his loneliness because he was the only
member of his family of origin that was still alive. He came to the conclusion that
although everything had not worked out as he had planned, he had lived a good life, he
still believed in God and stated, "I'm a winner."
Illness journey. Mr. King's nurse practitioner recommended him as a participant in
the study. She described him as having end stage COPD because he had been
hospitalized seven times in the last nine months. He stated that he has been hospitalized
more times than that this year and is well known to the local ambulance crew.
He completed three interviews with me over a period of three weeks. During that
time he did not report any visits to the emergency room, but within a week of his last
interview he returned to the emergency room at the VA. All of the visits were done on his
front porch. He described several times when he could not breathe, but he did not wear
oxygen or appear short of breath during the interviews. All of his interviews were at least
an hour in duration.
Two weeks before his first interview, he had been admitted to the surgical intensive
care unit (SICU) after an episode of not being able to breathe and having chest pain at
home. He was hospitalized for five days and it was determined that he did not have a
myocardial infarction. On the second visit I asked Mr. King, "What do you think the
increasing number of hospitalizations mean?" Mr. King described the changes in his
body. At first he used terms such as, "Everything is wearing out, it's a progressive thing."
He used a narrative to chronicle the events leading up to his most recent hospitalization.
While telling the story he stated that he knew his illness was terminal. He based that on
the deterioration of his veins and the fact that "high blood" and vascular disease lead to a
stroke or heart attack. He made the following analogy to describe his experience of slow
progressive deterioration of his body from his chronic illness:
Like some cars they go along and they just shut down and die, some of 'em go
along clunk, clunk, bam, bam, up and down the road, that's the hard way, that's
the, excuse me, hard way.
Mr. King is coming to terms with the advanced stage of his illness by
acknowledging his physical changes and preparing a living will. He believes that his
situation will get worse, but he would not think of taking the short way out and taking his
own life. It appears that he has made a distinction between suicide and not being placed
on life support. He stated that he has chosen not be placed on life support to prevent
hardship for his family, but he has some ambivalence about implications of the living will
as evidenced by his use of emergency medical services (EMS) and the multiple
hospitalizations over the past nine months. He stated, "The ways things happen is the
order of things, but, I am not ready to turn loose and leave here."
Mr. King maintains a personal relationship with God that helps him with the
challenges of his illness. He maintains a relationship with God by having a strong
personal belief and communicating with Him. He says he does not need to see the
evidence to know of God's presence, however there are times where he knows that God
has made a difference, such as when he goes from feeling that his life is in disarray to
feeling in control.
He maintains a relationship with God by communicating with Him. He uses
talking, praying and meditating as synonyms for ways to reach God. He adds the stance
of humility to his communication with God because he believes that humility is a
"teaching word." When he is humble then God can reach him to provide support and
guidance. Mr. King provided an example of how he used prayer to communicate with
God during an episode of shortness of breath. A family member and the EMS staff told
him later that he had passed out, but he remembers praying during the episode. An
excerpt from his interview that describes prayer during the episode of shortness of breath
I don't steady pray like that. I say well, you know, ...Jesus, you know I say, you
know I believe in you everything right now, right now I can't pray but you know I
trust you with my body.
Mr. King also talked about the importance of, in his words, "getting it together
mentally." He stated, "Belief in God is a positive thought." His belief and
communication with God appear to help him to prepare for future events, to replace
negative thoughts with positive thoughts and to restore order in his mind.
What made him distinct from other participants was that he was the only one to
introduce the topic of what would occur after he died. He used a phrase called "the
embarrassment of dying" to talk about loss of control and the vulnerability of being dead
and not being able to present yourself with dignity. To illustrate this he told a story about
the death of his stepfather. He was called home from work after the death and went in the
bedroom to see him. He had died with one leg drawn and his mouth open. Mr. King was
dismayed because neither his mother nor his sister appeared concerned about the dignity
of this man. He took it upon himself to restore dignity by preparing his stepfather for the
visit of other family members. He then concluded discussion of this topic by talking
about what would be happening in his family after his death. He stated that after his
death, "I'm not part of what's mine or I'm not part of somebody's life anymore". He
wondered what would happen to his possessions. "What would my son do with the
house?" He did not believe that he could affect what would be happening after his death.
He seemed to enjoy being able to speak the questions aloud.
Researchers reflections.He was very eager to participate in the study, and I had to
slow him down to complete the informed consent process. We met for the interviews out
on his front porch. The sounds of cars and people yelling out greetings and salutations
can be heard on the tape. At one point he even pointed out his wife's "old man." They
are separated, but not divorced and everyone is on friendly terms. I got the feeling that
he was showing me off to his community.
The interviews with Mr. King were intellectually challenging because once we left
the discussion of his illness he really wanted to dialogue with me about many issues
related to death and dying at a very sophisticated level. First it felt as if I was talking with
a philosopher and then it dawned on me that I had encountered a fellow seeker. I was
trying to make sense of experiences with death and dying among a group of people and
he is trying to make sense of his own life and death. I have access to statistics that
document the relatively low life-expectancy of African American men; in contrast he had
experienced the losses of his father, stepfather and his male contemporaries from the
community. It felt as if he were hungry to share some of the thoughts that had been
bottled in his head. Perhaps he did not have someone to talk with or maybe there was not
someone who would discuss death and dying topics with him.
Mrs. Grace's Story: You Gotta Love God Without Wavering
Mrs. Grace's case study illustrates that religion and spirituality are the important
concepts in the lives people living with a life-limiting illness. The language of religion
and spirituality were used to reinterpret the physician's prognosis, to talk about healing
and to search for the purpose of the illness in this case study.
Mrs. Grace is a 63-year-old woman who had been diagnosed with congestive heart
failure (CHF) two months prior to her interviews. She had been enrolled in hospice for
six weeks. When her social worker, Maggie Evans, was contacted to determine if Mrs.
Grace would be a good person to approach about the study, she requested that I wait a
month before calling Mrs. Grace because she had been reluctant to discuss death and
dying issues with the hospice team. Maggie feared that participating in the study might be
upsetting for Mrs. Grace. Maggie also requested that she be allowed to be present at the
first interview to gain insight on how to approach these issues with her. I waited to
answer the question until after I had met Mrs. Grace. Creating a relationship with a
participant can be delicate, especially when the topics are related to death and dying.
The first contact with Mrs. Grace was by phone. Her voice sounded clear over the
phone during our conversation. I explained the purpose of the visit to her and she agreed
to meet the next day. Mrs. Grace met me at the door and escorted me in to her home.
She was dressed in a green, cotton, short-sleeved shirt with matching pants. A nasal
cannula was visible in her nose and a long cord could be seen snaking past the couch and
into another room. She was never in any distress during interviews and commented on
the fact that she is relatively symptom free. The interview started in the living room and
then moved to the small table in the kitchen.
Biographical sketch. Mrs. Grace has lived all of her life in a rural community to
the west of the university. She married at 15 but is currently divorced from her husband.
She proudly says that she has a close-knit family of nine children, 25 grandchildren and
10 great-grand children. She worked in her community as a manager of a convenience
store and as a clerk for a gas company. Mrs. Grace has also been very active in her
church where the congregation appreciates her cooking and her contributions to the
church family. A pot could be heard simmering on the stove and intermittently she went
to stir the contents during the interview.
Illness journey. Mrs. Grace had her first heart attack when she was 59-years-old.
She had been having symptoms, but had ignored them until the morning she developed a
fever and chills while getting ready to go into work. In the four years since her attack,
she had been hospitalized 6 or 7 times, most recently in July. It was during this
hospitalization that the doctor talked to her and her family about her prognosis and made
the referral to hospice.
All patients who are enrolled in a Medicare-certified hospice program must have
two physicians (the patient's attending physician and the hospice medical director) certify
that they have a life-expectancy of six months or less (NHPCO, 2003; Moore &
McCullough, 2000). Mrs. Grace and her family heard the doctor say that her heart was
not working properly and there was nothing more that could be done to repair the
damage. The doctor asked her if she wanted to know how much time she had left and
Mrs. Grace stated, "she did not want to hear that." She responded to the distress of her
daughter and son-in-law by saying, "I'm gonna be alright because I know Jesus."
Mrs. Grace made her own evaluation of her prognosis. She felt that God had
intervened and she will live longer than the doctor had in mind. When the doctor asked
her if she would be offended if she was referred to hospice, she stated, I wouldn't be
offended because I don't care what hospice or her say, that I was not going anywhere
until Jesus say so. 'Cause he has the last word'." She believes that God controls the
doctors and only He can determine when she will die.
Religion and spirituality were very important to the life of Mrs. Grace. She had
grown up in a religious home, but once she left home she did not live a Christian life until
she returned to the church seven years ago. The presence of religion and spirituality can
be seen in her personal relationship with God, the religious symbols she used in her
search for meaning and the support provided to her by African American churches in her
community when it was learned that she was seriously ill.
Mrs. Grace declared that she has a personal relationship with God. She
communicates with God through solitary prayer and as a member of her prayer group at
church. She uses prayer to make requests of God. For example, when she learned how ill
she was, she asked God to "make me anew." Asking God to "make me anew" seemed to
be a request for healing. Healing was a frequent theme in her interviews. The quote
below from one of her interviews talks about how God answered Mrs. Grace's prayer for
I said God is making me new all over. 'Cause every piece of skin you see is new,
every bit of it peeled, so he gave me new skin and everything.
Mrs. Grace searched for the meaning of her illness and came to the conclusion
that God has work for her to do. Her purpose right now is to talk with young people in
her family and community about the importance of living a Christian life and
acknowledging the Lord as their Savior. She sees the illness as an opportunity to affirm
her faith in God, too. She talked about reconciling the fact that while God had created
this illness, He wasn't trying to hurt her. It made her faith in God stronger.
Her church family has been a great source of support to her and Mrs. Grace
acknowledges her blessings frequently throughout the interviews. Her pastor is a regular
visitor to her home for spiritual and practical needs. He comes by on his way into town
to take out her trash ever since he found her very short of breath while trying to get it out
to the curb one day. One of things Mrs. Grace is most proud is that when it was learned
that she was ill, the African American churches in her community got together and had a
benefit program for her. She had an opportunity to see how much she was loved and the
many lives that she had touched through her work in the community.
Mrs. Grace describes her reaction to the program in this excerpt:
...And it was so nice, I'm telling you, it's you look back and you see all these
people and they came for you. And I kept getting up, going back hugging some
people, you know, just, even my daughter that's crippled ... came. All my
Researcher reflections.Mrs. Grace's hospice social worker was concerned that
participating in the study might be upsetting to her. However, she freely discussed death
and dying issues with me in both of her interviews. I called Maggie to let her know that
Mrs. Grace talked openly with me during the interviews. I told her about Mrs. Grace's
demeanor in the interviews and the general topics that we talked about, but I did not
reveal the specific content of the interviews. Because the study protocol included a
method to contact the clinical team about any issues that might arise during the course of
the interviews, I thought that sharing my description of her demeanor and the general
topics were consistent with the protocol did not violate patient confidentiality or
compromise my relationship with Mrs. Grace.
On every visit I saw family members leaving as I drove up to the home or there
were people who just stopped by for a brief visit to see her. In her presence I
experienced peace and serenity. I wondered what her home would be like on a Sunday or
a holiday with all of her children and extended family gathering for one of her home
cooked meals. In my mind I can hear the laughter and feel Mrs. Grace's love reaching
out to embrace all of them. The presence of her family would be further confirmation that
God will continue to answer her prayers.
Mr. Dell: I Just Don't Have Use Enough of My Body
There are many medications, treatments and assistive devices that can be used to
control symptoms and manage physical limitations; however at some point physical
deterioration cannot be controlled. Mr. Dell's case study illustrates how physical
symptoms and physical deterioration impact the experience of living with a life-limiting
illness and a person's self-definition.
Mr. Dell was a 90-year-old man who had been diagnosed with kidney cancer and
had been in the hospice program for five years at the time of his interviews. Whereas his
nurse, Colleen, thought he would be a good candidate for the study, other team members
did not feel that he was the best choice. The staff felt that his reluctance to discuss death
and dying issues and his limited education might be a barrier to his participation in the
study. Colleen talked with Mr. Dell at her next visit and he agreed to meet with me to
hear more about the study.
Mr. Dell and his wife lived in a rural community 30 miles north of the university.
Traveling there was a challenge because the road to their home was nearly impassable
due to multiple potholes filled with water and at several points along the way the road
was covered with soft white sand. Mrs. Dell had given me some landmarks to guide me
so when I saw the mailbox on a pole with their name on it I knew their house was
immediately across the street.
I walked up to the house and entered through a small porch. The front door was
open and so I called out to them. Mr. and Mrs. Dell were sitting in a rectangular living
room. She was on the couch and he was seated in a brown tweed chair that was covered
with a multi-colored speckled afghan. I sat down in a small love seat directly across from
Mrs. Dell and diagonally across from Mr. Dell. He was wearing a white shirt and a pair
of pants. The room was lit only by sunlight coming in from the open front and back
doors. I noticed a hospital bed covered with a navy blue blanket with green squares.
Communication was difficult at first because he was hard of hearing, I was too far from
him and poor lighting made it hard for him to read my lips. The informed consent
process improved when I moved closer to him, turned on a light in the dining area and he
put on his glasses.
When I changed position I could see a field planted with large dark green plants
that literally came up to the backdoor. The plants looked like corn to me. I worried for
the first few minutes if a small animal was going run out of those plants and up into my
I reviewed the study with Mr. Dell and his wife. He was able to state the purpose
of the study and what I would be asking him to do. He restated both without hesitation
and after he signed the consents forms we started the interview. Mrs. Dell was present for
all of the interviews.
Biographical sketch. He was born and raised in a rural community approximately
40 miles north of the university and about 15 miles north of his current home. Although
Mr. Dell has not worked on the land for a few years and the majority of the farm animals
had been sold, he still defines himself as a farmer.
Owning his farm was a way for him to maintain his independence and autonomy in
a segregated community. In contrast, many African American men of his generation
worked as sharecroppers or on the land of other people. He supplemented the family
income by working for others between growing seasons but he found the most
satisfaction when he was farming his own land. I asked him, "What do you love about
farming?" He stated, "It's not the money you make, it's just the privilege you have to do
what you want to do, and how you want to do it."
He and Mrs. Dell did not have any biological children, but they did raise a son
together. My field notes did not reveal if this child was related to one of their relatives or
the events that led to his coming to live with them. He currently lives in Pennsylvania.
Illness journey. Mr. Dell's chronology of his illness journey was inconsistent
because of his memory loss, however he is very clear that a stroke and the after effects
from multiple surgeries were watershed events in his life. The stroke had affected his
memory and decreased his energy. As a result of multiple surgeries, he was hard of
hearing, had poor eyesight and trouble keeping his balance. He spoke passionately about
the changes in his body, the unpredictable nature of his symptoms and the change in his
self-image since the surgery and his stroke.
The surgeon told Mr. Dell prior to one of his surgeries that he would have problems
with his memory, hearing and sight. Mr. Dell stated, "He told me those things was gonna
happen and they most certainly did. That just wrecked me." His wife reminded him that
there were things that he could do for himself, but that did little to appease him. His
frustration over the loss of his physical body was a topic in all of the interviews.
Although, he has symptoms such as abdominal pain, constipation and insomnia, he says
that his loss of his ability to get dressed has been the most distressing because, "I just
don't have use enough of my body."
Mr. Dell was surprised that after his surgeries he had trouble maintaining his
balance. The loss of balance has required him to use a walker to move around the house.
He describes his balance this way, "My balance is so bad, I, it's like somebody drunk.
Staggerin'." The hospital bed that I saw when I first came was a recent arrival. It had
been in the home for two or three weeks.
He is also distressed that he cannot predict when his symptoms will appear, the
duration or when they will return. When he uses the pain medication ordered by his
doctor, the pain is relieved, but the unpredictability is frustrating. He describes the
unpredictability of his symptoms in the following excerpt, "Some mornings I'll get out of
bed, I feel I could get out there almost and do a day's work and maybe in an hour's time,
it looks like I'll be sick enough to die."
We talked about the meaning of work to him during the last interview. Work had a
practical and symbolic meaning to him. Work provided him the means to provide for his
family and it also appears that work symbolized vitality and control over his destiny. He
once defined himself by the work his "able body" could do. At this time his body has
Mr. Dell was once very active in his church as a deacon. Although he cannot get to
church because of his physical limitations, members of the church come in to pray with
Mrs. Dell and him. His belief in God provides a sense of comfort and the visits from his
church family lift his spirits for a time, but then he becomes depressed about his situation
He talked about his death without prompting from me. He acknowledges the
probability that he will die in the near future at a time determined by God, yet he is still
hoping that God can create a miracle. Mr. Dell died three months later at a nursing home
under the care of hospice.
Researcher reflections.The staff expressed doubt about his ability to be in the
study. If I had not taken the chance to talk with him directly then I would have missed an
opportunity to hear his perspective on living with a life-limiting illness. His third grade
education did not affect his ability to speak very candidly about his frustration with his
body and the loss of his ability to work. Work provided him with the means to take care
of his family and to be independent. I think that he had lost the means to define himself. I
would have liked to have had further contact with him to see if was able to come to some
resolution or create a new definition of himself that could incorporate his physical
limitations. Mr. Dell was the second person that the clinical team members believed
would be reluctant to discuss death and dying issues with me. He was very open and
frank with me about the impact of his physical limitations on how he defined himself.
Mr. Dell acknowledged his death, even in the presence of his wife. After I found out how
long he had been in the program I became more curious. If he is reluctant to discuss death
and dying issues after five years, when would he want to discuss them? I also wondered
what was contributing to this reluctance?
The case studies present experiences from a rural elderly population that has been
diagnosed with a life-limiting illness. Their worldview has been forged and tempered by
factors in the cultural and social context that might influence living with life-limiting
Religion and spirituality. The largest cultural influence comes from religion and
spirituality. The participants in this study talked about the importance of their religion
and spiritual beliefs to their lives during a life-limiting illness. A personal relationship
with a human God was very important because this relationship provided a safe place to
share concerns and fears about aspects of the illness, especially the topics of the
physician's prognosis and their own beliefs about death and healing. They described and
interpreted their experiences in the language, symbols and the music of religion and
spirituality. Important concepts that emerged during the interviews about religion and
spirituality were concepts such as, but not limited to, God's omniscience, personal faith,
healing, overcoming adversity with God's support, traditional gospel music and Bible
African American church. The African American church is a central fixture in the
lives of many of the participants. It provided them with opportunities for leadership,
connection with the community and a source of instrumental and emotional support.
Even for participants who could not leave home, the church members came to the home
for fellowship and prayer.
Experience with death and dying. The elderly population in this study has
experienced the death of many family and friends, as would be expected given the age of
the sample. For example, Mr. King and Mrs. Proctor are the last survivors from their
family of origin. However, African Americans have a different experience with death and
dying. African American men are estimated to have a life-expectancy of 68.3 years.
The participants of the study have a first-hand knowledge of the limited life-expectancy
of Black men. Mr. King spoke about the loss of his contemporaries, his father and his
stepfather. When Mr. Jackson declared his pride about being 81, it has more impact
when it is placed along side the limited life-expectancy of Black men. The participants
know how precious life is.
Interaction with health care system. There have been many changes in the health
care system during the life span of the participants. Forty years ago life extending
technologies were in their infancy, the cause of death was related to an acute illness and
the hospice philosophy was almost unheard of the in U.S. Today, the health care system
can provide multiple options for life-extending care, the cause of death is related to a
chronic illness and the hospice philosophy has expanded to include a program of services
to provide care to people who are dying.
The participants in the study have had multiple interactions with the health care
system, especially with the physician, during the course of a life-limiting illness. The
physician has also been identified as a gatekeeper in the health care system; for example,
a person cannot receive services from a hospice or home health agency without a
physician's orders. Moreover, to access the full services and financial benefits of hospice,
two doctors must certify that the person has a life-expectancy of six months. In essence
the physician must define the person as being terminally ill or having a limited life-
The discussion of life-expectancy or prognosis was one of the major topics
discussed in the interviews. The participants often countered or reinterpreted the
conversation about their prognosis using religious language such as "God has the last say
so" or "By his stripes I am healed."
Messages from the body. The participants were also receiving and interpreting
messages from their bodies. The messages come from physical symptoms and symptom
exacerbations. Most of the sample had few physical limitations, however, Mr. Dell's
case study illustrated the challenges of living with physical symptoms and that a life-
limiting illness can also be interpreted by looking at symptoms from the body. His case
study also illustrates one of the themes introduced by the participants, the fear of being
dependent on others. There were participants who were reluctant to talk about how they
would handle a future when they would have to depend on others for care (The
sociocultural context and the themes illustrated by the case studies are summarized in
The research questions guiding this study were:
1. What is the basic social psychological problem shared by African Americans
living with a life-limiting illness?
2. What is the basic psychological or sociological process used by people living with
a life-limiting illness to manage that problem?
The problem they share is, "How do we affirm life given what we have experienced
and the messages we are receiving now?" Affirming is defined in American Heritage
Dictionary as: 1.To declare positively or firmly; maintain to be true. 2. To support or
uphold the validity of; confirm. The word is derived from the Latin adfirmare that means
to firm or strengthen (American Heritage, 2000). The case studies illustrate that African
Americans are drawing upon religion and spirituality to cope with a life-limiting illness
to solve the problem of "Affirming life." The next chapter will discuss the strategies
used by the participants to solve this problem.
Table 4-A The social cultural context and themes illustrated by the case studies.
Sociocultural context Themes from the interview transcripts
African American Church Social support
Opportunity for leadership
Connection with community
Religious and spiritual perspective
Religion and spirituality topics
Connection with God
Interaction with the health care system Physician's prognosis
Medicare Hospice Benefit
Messages from the body Pain
Fear of dependence
Basic Social Psychological Process: Keeping Faith
Faith is defined as a firm belief in something for which there is no proof,
complete confidence, something that is believed with strong conviction (Agnes, 2003).
Another use of the word is faith in a religious context where it connotes the traditional
doctrines of a religion, belief and trust in and loyalty to God. This is also consistent with
usage of the term in Roget's Thesaurus (Roget's Interactive Thesaurus, accessed 2003).
Therefore, the use of the word faith goes beyond a religious context.
"Keeping Faith" brings to mind a sense of steadfastness that can restore order
during a time of chaos or renew spirit. Barbara Jordan stated during the impeachment of
Richard Nixon, "My faith in the constitution is whole, it is complete, it is total (Greene,
2002, track 25)." The timbre of her speech and the unwavering passion in her delivery
gave life to her words. When the participants in this study talked about the strategies that
were used to affirm life, the same resolve could be heard in their voices.
The participants in the study used the literary devices of metaphor, allusion and
narrative to describe the process of "Keeping Faith." The metaphors and allusions were
derived primarily from the Bible and religious music. Occasionally, two metaphors were
combined to communicate an idea or a phrase was attributed to the Bible when there was
no literal or metaphorical referent to support the usage. Metaphors also came from their
life experiences, such as metaphors from baseball, cars and their occupations. Narratives
were used as a device to facilitate discussion about many aspects of living with life-
The process of "keeping faith" is composed of three major concepts: connecting
with family and community, connecting with God and connecting with Self. Connecting
in this model is defined as the state of being in relationship" with objects in the social
world and is the concept that integrates the model. The participants are able to solve the
problem of "Affirming Life" in relationships with objects in the social world.
Connecting with Family and Community
Participants were in relationship with their family members in the past, the
present and the future. Relationships with ancestors, their parents and even a deceased
spouse were important to them. The participants used stories to describe connections with
ancestors who they believed to be the source of their own values. Mrs. Proctor's story
illustrated her connection with her ancestors and her pride in their accomplishments. One
of her favorite Bible verses is from the Ten Commandments, "Honor thy father and thy
mother (New King James Version)." This excerpt from the Ten Commandments is
definitely about honoring the legacy of your ancestors and parents. Mrs. Proctor instilled
this lesson in her students during four decades of teaching.
The connections with her students provided a safe place for her to live. Moreover,
the relationships with her students created a place where she could be honored, cherished
and acknowledged for her contributions to their lives. Julia assured that Mrs. Proctor's
soul was nourished by in-home fellowship, her music and visits from her dog, Lady Bird.
Passing the Torch
Connections with future were also important. A participant proudly talked about
how she and her daughter were following in the footsteps of her mother, as they took on
roles in the church leadership. She and her mother have the title mother of the church
and her daughter is now a deaconess in training. Passing on a legacy to her daughter
maintained continuity through three generations. Mrs. Grace, who was known to her
community as a good cook, shared favorite recipes with one of her daughters and
expressed delight that her daughter wanted to receive that gift from her.
Connection with others may also include the desire to heal relationships. One
participant who is estranged from his children spoke about wanting to reconnect with his
children. He shared during the interviews that his own anger and pride had created a
barrier between him and his children. In the following passage he is expressing regret
about his role as a father and seeking forgiveness from his children (and possibly from
himself) for his absence from the lives of his children.
What's important to me right now? Believe it or not, the most important thing to
me right now besides my health is my two .. .kids in Sarasota. ... I enjoy being with
them very much ...I didn't get a chance to grow up these kids up here and that's
what they 're mad about. I wasn't there for them. When I wanted to be there for
them I couldn't be there.
Connecting with Others
The participants had important relationships outside of the family that were
maintained through the strategies of prayer, in home fellowship and music. Prayer was
the most common strategy used to maintain connection with others the context. The
participants reported praying for family and friends in a general way and also making
specific requests to God on their behalf. They connect with others through solitary or
group prayer. Intercessory prayer during worship services, Bible study or prayer groups
and in home fellowship provided a way for people who were housebound to stay
connected to the church community and for the community to stay connected with their
Connecting with family and community during a life-limiting illness provides an
opportunity to heal relationships, to reflect on contributions to family and community and
to create a legacy. A social definition is created in relationship to community and
family. The participant is comforted by the connections across the generations. These
relationships are the foundation for the values and beliefs that they are using to sustain
them while living with a life-limiting illness.
Connecting with God
Personal Relationship With God
A personal relationship with God was a concept that was introduced into all of the
interviews by all of the participants. The majority of the participants used the word God
when talking about their religious deity. One participant called this person a Supreme
Being. God/Supreme being is consistently described with human characteristics. "Being
in relationship" with God is the central concept in the process of "Keeping Faith." The
participants describe the relationship with God as positive and egalitarian. The majority
of the participants discussed this relationship in a religious context; however, being in
relationship with God/Supreme being also transcended a specific religion or religious
Strategies to Connect with God
Praying and talking were the primary strategies used for connecting with God.
Praying and talking were both used to make specific requests on the behalf of family,
friends or themselves, and to affirm a belief in God. The participants used prayer in
conjunction with affirming gratitude for God's presence in their lives. The only
distinction between praying and talking as strategies to connect with God were the words
the participants used to describe this activity. For example, when they described talking
with God they would say phrases such as "I told God" or "Letting him know."
Participants dedicated time on a regular basis to connect with God such as morning
prayer, bedtime prayer or with a prayer group. Two participants spoke about being in
contact with God multiple times a day.
The concept of the personal relationship with God and strategies for connecting
with God are illustrated by the quote below:
And I told God that I was willing to die, but I was not ready to die, and it seems to
me what I was, getting to or referring to I was, either asleep or in a daze or
something, I don't know. But, I hadn't been married long and I wanted to get more
loving and closer and being more with my wife than I had been, to learn of each
other. And I had communicated with God about the things that I was concerned
about with my life and her life, so I just asked... talked to God as much as I wanted
to, praise God, about that, that's why I said that I was not ready to die, but who was
I to tell God such a thing as that. But as I understood the Bible, God wants you to
talk with Him like your doing another man or another woman.
In the excerpt above it appeared that there might be a risk of being perceived as
disobedient or unfaithful to reveal to God his ambivalence about dying. However, this
participant acknowledges a personal trusting relationship with God and is able to share
his ambivalence without fear of judgment.
Answers from God
The participants believed that connecting with God also involved receiving
communication from God. The communication from God might be in the form of a
tangible sign, such as pain relief, relief of emotional distress or unexpected financial gain.
In contrast, communication from God might also manifest in an intangible form, such as
a feeling or a presence. One participant described receiving communication from God by
using the phrase, "felt him through the spirit."
Mrs. Grace was asked during one of her interviews if she was specifically praying
for anything. She answered:
I just ask God to make me anew and my first prayer was if you made me, you got
spare parts, so give me another (she tapped over her heart with a closed fist). I told
my daughter at first I peeled, my skin peeled. And I said God is making me new all
over, 'Cause every piece of skin you see is new, every bit of it peeled, so he gave
me all new skin and everything.
Mrs. Grace is using images and symbols of renewal and creation in her request to
God. She interprets her peeling skin as an answer to her prayer for renewal and she also
acknowledges the role of God as creator. She does not use the word healed in this
sentence, but it is possible that she believes that her peeling skin is the evidence that she
has been healed.
Mr. King was asked how he knew he was talking to God. He answered:
...to step out into infinity well you see so there's no proof here to show me, there's
no proof of me to put here to show me, but the proof is what I did, like you got
yourself together, you know you was in disarray in your life and you got together...
The proof that he was talking to God came from going from a state of disarray to a
state of order or control. The phrase "got yourself together" connotates going from a
feeling of being scattered to a sense of integration or wholeness.
In God's Hands
The belief in God's omniscience and omnipotence were major concepts in the
interviews because they appeared frequently in the transcripts. These concepts were
commonly found in interviews that contained discussions about life-expectancy of the
participants in hospice and homecare. The participants believed that only God knew
when they would die and His knowledge was superior to the medical knowledge of the
doctors. God also had the power to heal and to create a miracle.
A participant told a story about how his prognosis was presented to him by his
doctor. His son initiated the discussion at an office visit when he asked the doctor about
his father's life-expectancy. In the quote below, the participant makes an argument
supporting the supremacy of God and affirms God's omniscience. He is able to inspire
hope for himself by framing this conversation in the concept of God's Omniscience.
...if I had known, if I had thought real quick, I wouldn't have let her answer him,
but... he asked her, uh, what was my life-expectancy and she blurted out 6 months
and uh, and I thought about it, .. .that's something I really didn't want to hear, I
didn't need to hear, 6 months ain't no long, long time, ...I don't know if he
expected that answer or not. I'm aware of the fact that, that medicines are far more
advanced now than they was a long time ago, they're more, more sure about things,
but then that's still not, it's, it's, as far as being definite, you know, I don't, I just
don't, because as he said, you know, not, as much advanced as medicine is and
doctors and things they ain't still not God.
Taking It Out of God's Hands
Whereas the participants acknowledged God's omnipotence and omniscience,
many participants had made decisions to stop treatment. Those decisions would appear to
be in conflict with "leaving it in God's hands." Participants chose not to pursue surgical
options, to decline chemotherapy and to complete advance directives that documented
their decisions not to receive life-extending treatment. A hospice chaplain stated, "To
some African Americans, choosing hospice might appear to be in conflict with the belief
in God's omniscience." Did the participants in this study identify making a decision to
stop or to decline further treatment as being in conflict with the belief in God's
omniscience and omnipotence? If so, how do they make sense of this?
The participants made a distinction between allowing the process of a natural
death to occur and the intention of ending a life. For example, Mr. King and another
participant introduced the topic of suicide during the interviews. They both stated that
they would not choose the option of suicide.
Three participants introduced the concept of conflict between believing in God's
omnipotence and making end of life decisions such as continuing to pursue aggressive
treatment, choosing hospice, and declining chemotherapy. Data analysis identified three
strategies used to ease the tension generated by the paradox and to create a space for the
contradictions to rest side by side in the experience of living with a life-limiting illness.
Working Through the Paradox
Holding on. Mr. King was interviewed when he had been in the VAPHC program
for 6 years. The number of hospitalizations for shortness of breath and chest pain had
increased over the nine months prior to the interview. Mr. King talked about the paradox
between acknowledging God's divine plan and continuing with aggressive treatment. The
paradox was handled with the strategy of "holding on." He completed a living will that
stated that he did not want to be on life support, what he called "being put on machines."
However, he continued to use the EMS system, the emergency room in his local
community and the intensive care unit at the VA hospital.
He acknowledged that although there is a divine plan, he was not ready to "let
go." Maintaining control and dignity was very important to Mr. King. The phrase "let go"
could be a euphemism for death, but in his case letting go also signified the loss of
control and dignity similar to what he witnessed when he was seventeen after the death of
his stepfather. "Holding on" is a strategy that provides comfort and sense of control to
Compromising. Mrs. Grace was interviewed within 6 weeks of her admission to
hospice. Mrs. Grace justified her decision to accept the referral to hospice by
compromising. Each side makes a concession to reach a settlement in a compromise.
Mrs. Grace enrolled in hospice, but she told the doctor, in essence, "I'm not dying." She
believed that God's intervention had healed her. Whereas she agreed to have access to
the financial benefits of the Medicare Hospice Benefit (MHB), she would not give up the
belief that God had healed her or define herself as dying.
Mrs. Grace used Job, a character from the Bible, to illustrate the importance of
patience and her unwavering in faith in God.
You've heard of Job in the Bible, you know, lost his wife, his children, he was a
rich man. He lost everything. But he would not curse his God and... and so, I like
to pattern my life after Job. I'm not a rich man. But I'm not gonna deny God on
no terms. Nothing or nobody. 'Cause I know he's Almighty and uh, and just like
Job, I'll get it all back.'
The character of Job has lost material goods, but kept his belief in God in spite of
many challenges, including the loss of his family. The parable in the Bible goes to great
lengths to describe his material possessions and as a reward for his faith he received a
greater number of possessions than he had started with at the beginning of the story. She
equates being in hospice and defining herself as dying with denying her belief in God.
Therefore, she handled this tension by making a compromise.
Weighing costs and benefits. Another participant had been in the hospice
program for a year at the time of her interviews and just like Mrs. Grace, she embraced
her healing and justified receiving hospice services because of the financial benefits of
the MHB. She described her illness journey using very sophisticated medical language,
however, she expressed doubt about the doctor's definition of her illness because it was
in direct opposition to the belief that she had been healed. She was offered palliative
radiation therapy and chemotherapy for treatment of her lung cancer when she had been
in hospice for four months. She agreed to accept the radiation therapy, but not the
She used a narrative to describe the information she used while "weighing the costs
and benefits" of initiating chemotherapy. She told a story about how chemotherapy had
affected a friend: she lost weight, became bald and couldn't eat. Her friend was
ultimately confined to bed and required assistance with all of her needs. She described
her friend in the excerpt below:
She stayed in the bed all day, every day. So, so what's this living? Now, the way I
am now, I'm fine. Sure I want to live. But if I live where I just got to lay there,
people got to wait on me hand and foot, to feed me, ... (clears throat). I don't want
to be a burden on nobody.
She wants to live, but not at the cost of her independence or being perceived as a
burden. She also communicates her own definition of quality of life. She resolved the
tension in her paradox by "weighing the costs and benefits."
The personal intimate relationship with God provides a foundation for
participants' belief in God's omnipotence and the possibility of healing. The belief in
God's omniscience facilitates the discussion of their limited prognosis within their own
belief system and provides them with hope. Participants in the current study resisted the
concept of the physician as prognosticator and reinterpreted the prognosis conversation in
the language of religion and spirituality. In this language God is the prognosticator and
reliance on God's omniscience puts the participant in control of this aspect of living with
a terminal illness, places the determination of the time of their death in the hands of a
trusted, benevolent God/Supreme being and affirms their relationship with God.
Healing is a common theme that was introduced by the participants to describe
physical healing, for example healing of a wound or resolution of a physical illness.
Additionally, healing was introduced in the narratives about discussions related to a
person's prognosis. One participant used healing when he discussed the possibility that
God would heal a person by helping them to overcome worldly temptations. Metaphors
such as a "rehaul job" or "making me anew" were also used.
Healing was seen as a gift from God and interpreted by a few of the participants
as a reward for unwavering faith and living a Christian life. In the words of the
participants, only God had the power to heal. Healing is also a metaphor for the theme
of resurrection. Acknowledging mortality and hoping for healing is not a contradiction,
nor does it reflect denial about the course of their illnesses. The Bible contains many
references to the death and resurrection of Jesus. Death and healing (resurrection) are not
opposites but part of the same cycle. The possibility of being healed by God provides
hope and affirms trust in God's omnipotence.
Searching for Meaning
The participants wanted to attribute meaning to the cause of the illness, the
purpose of the illness and purpose of their suffering. This search was done in
relationship with God and through the use of religious metaphors and characters.
Mrs. Grace stated, "Although God allowed her illness, he did not cause it." God
was seen as a source of blessings, unconditional love and abundance, whereas the Devil
was identified as the cause of illness and symptom exacerbation. Participants also used
their relationship with God to question the purpose of the illness in their lives and to
question the purpose of their suffering.
The purpose of the illness in their lives was to continue to be of service to their
families and community and to share the word of God. It was common for some of the
older men to question why they had lived to be 80 years of age and older when many of
their contemporaries had not lived as long. The only answer they provided was that it
was God's will for them to be alive.
Meaning of Suffering
One of the most poignant conversations that the participants have is when a person
confronts God with questions about the meaning of suffering. This is really a time when
faith and the relationship with God are tested. One of the participants describes a
conversation with God where he questioned the meaning of his suffering.
... woke up at night, got out of my bed got on my knees and prayed and talked to
the Lord and told Him how I feel felt and why and asked Him why I'm like this. Is
this a punishment or do I supposed to suffer like this? And uh, and then I talked to
Him, asked Him questions, I say I know people ... out there they've done worser
things than I ever thought about doing. And they living and going on with good
health and strength. Why I have to be like this? Okay?
Another participant told of seeing a vision with three biblical characters just before
he was discharged from the hospital and referred to hospice. He was searching for
meaning in their presence. He had talked with God and expressed ambivalence about his
death. He thought the presence of Peter, James and John might have been a symbol of his
death. An excerpt from his interview appears below:
Well, I had thought about it, but I had been thinking all the time of praying to God
asking for His blessings. And it seems to me as if I seen Peter, James, and John
standing, he was, John was at the foot of my bed and he had a cane and a Bible or a
book or something, a scroll in his hand. And it seemed like to me that he said it is
finished. ... And I thought that was death. But I wasn't uneasy, I wasn't afraid or
nothing. And I told God that I was willing to die, but I was not ready to die...
This passage is actually a mixture of images from two books in the Bible that
present the death of Jesus. The characters Peter, James and John are three of Jesus'
disciples who were present for an event referred to as the transfiguration
(Matthewl7:1-9). During the transfiguration God acknowledged Jesus as his son and
Jesus foretold of his death and resurrection.
The phrase "it is finished" is from the Book of John (19:30). According to this
verse in the Bible, "it is finished" are the last words that Jesus said before he died after
being crucified. The full statement is:
So when Jesus received the sour wine, He said, "It is finished!" And bowing his
head, He gave up his spirit.
Connecting with Self
Affirming Thoughts and Speech: "It is a Mind Thing"
Connecting with Self is a concept that encompasses strategies used to manage the
mind, be in relationship with the changing physical body and a personal search for
meaning. The mind is a concept that was presented by the participants as if it had a
physical form. The participants talked about how they "don't think about their illness"
and commonly they use phrases such as "I don't have no thoughts about it", "Once you
put your mind to it" and "I don't dwell on the illness." Those phrases connote not
focusing attention on the illness (Agnes, 2003). The mind is seen as an object that needs
to be controlled or harnessed.
The participants also talk about the concept of the mind, using phrases, such as
"in your mind", "on your mind" and "keeping it out of your mind." In these phrases the
mind is a container or vessel that can be filled or emptied of thoughts about aspects of the
illness. All of the participants discuss the use of intentional cognitive strategies to
manage negative thoughts or anxiety about the troubling aspects of the experience of
living with a life-limiting illness. Mr. King called it "getting it together mentally."
Therefore, the goals of cognitive strategies used are to control what the mind focuses on
and the content that fills the mind.
Managing the mind. Managing the mind is a strategy to manage thoughts about
unpleasant aspects of the illness such as fear of being dependent, loss of control after
death or financial concerns, so that the person has the energy to focus on handling
important aspects of living with illness. Mr. King used a baseball analogy to discuss how
he "got it together mentally." He stated that managing his mind was analogous to
preparing for a tough pitch. To be effective in the game of baseball, a player must have
physical and mental skills. The mental preparation for a tough pitch requires that the
player remove thoughts from the mind that may prevent the athlete from staying mentally
focused on the pitch. If focus is lost, the player might not be able to make adjustments
such as altering the stance or the swing to increase the possibility of hitting the baseball.
Preparing for the tough pitch while living with a life-limiting illness requires
staying focused on positive thoughts so that you have the energy to prepare for the
challenges ahead, such as symptom exacerbation and physical deterioration. Another
participant stated, "We in the stages now...that things will get better if you decide to make
it better." He described managing the mind as a personal strategy in palliative care.
Affirming and Denying
Kubler-Ross (1969) described denial as one of the stages of coming to terms with
a terminal diagnosis. Denial in this study was described as a way to pretend that the
disease did not exist. However, in the people in the present study, their denial manifests
itself differently. They talk about their experience of living with their illnesses, such as
acknowledgment of their mortality, personal losses and the impact of physical changes on
their lives. Denials remove negative thoughts or aspects of the illness that may cause
worry or anxiety from the thoughts of participants so that the participant can replace them
with positive thoughts (affirmations) from religious and spiritual beliefs that may bring
comfort and release of worry (Roach, 2003; Gawain, 1995; Samuels and Rockwood-
Sources of Affirmations
Quotes from the Bible. Biblical allusions are a source of powerful affirmations.
One participant used denial and affirmation together when talking about reading about
her cancer. She denied that she has cancer and affirmed that she has been healed. She
used a biblical reference, "By his stripes I am healed." This biblical reference also alludes
to the crucifixion of Jesus and it is found in Isaiah 53:5. The passage affirms that because
of the sacrifice that Jesus made, his followers have been healed. Healing in this passage
appears to connote the concept of life or rebirth:
Now, it may not bother me now but at first I couldn't read this here talking about
the cancer and I just rather not ... I don't know where I was at but it just brought
tears to my eyes. ... I ain't got no cancer that what the doctor say, Jesus said about
his stripes I am healed and that's what I believe.
She is not stating literally that she does not have cancer. She is emptying her mind,
"the vessel," of the image that cancer represents to her, of fear, anxiety and the possibility
that the cancer could lead to her death. Her mind is then filled with a positive image of
healing that was given to her as a result of the sacrifice of Jesus.
Another participant had the phrase "no fear" on the front license plate of his car.
When he was asked about the license plate he stated that "no fear" was found in the 23d
That's No Fear, no, I'm not afraid of anything. I'm not afraid to participate, I'm
not afraid to say things, afraid to go places, everything, No fear.... When you put
all that stuff together and look it up and see what it means, No Fear, that mean a
"No fear" is found in Psalm 23:4. This verse starts with "Yea though I walk
through the valley of the shadow of death, I will fear no evil for You are with me." This
stanza is a powerful passage that affirms the omnipresence of God. This participant used
the phrase as an affirmation and a source of comfort that he carried with him when he
traveled any where in his car.
Spiritual music. Traditional gospel music is another source of affirmations. Mrs.
Proctor talked about two songs: "Nobody Knows the Trouble I've Seen" and "It Is Well
with My Soul." Both songs illustrate a personal intimate relationship with God that
provides comfort during times of sorrow and of emotional distress. "It Is Well with My
Soul" extends this theme to declare that God is present at all times. The last two lines
from the first stanza of "It is Well with My Soul" are especially powerful: "Whatever my
lot Thou hast taught me to say, It is well, it is well, with my soul." Both of these songs
contain metaphorical and direct allusions to the death; however, death is celebrated as an
opportunity to connect with Jesus and others who have died in "Nobody Knows the
Trouble I've Seen." "It Is Well with My Soul" provides comfort because this spiritual
affirms that God will be present for support and guidance in all situations.
The participants talked about possible consequences or outcomes from the use of
affirming thoughts and speech. Failing to manage the mind or to use affirmations might
lead to more hardship, lower morale, "allow the devil to enter your mind" or hasten
death. Positive consequences of managing the mind and controlling the thoughts that fill
the mind are an extended life span, self-motivation and a renewed spirit. One participant
described the positive outcome of managing the mind. He describes this positive outcome
using words synonymous with rebirth and a new life for the spirit:
The more, best you can put that away from you and not think about it, the better
off you is, it's created me a new clean heart and a renewed right spirit within me.
Reaching within. Prayer allows the participants to connect with Self by drawing
forth their own inner resources during the life-limiting illness. Prayer was used to manage
pain, dyspnea and insomnia. The participants described using prayer as an adjunct to
pharmacological symptom management and at times it was the only intervention used to
relieve pain and insomnia.
Personal Search for Meaning
Earlier in this chapter the concept of searching for meaning was discussed. The
participants were searching in the context of the relationship with God, such as the cause
of the illness, the purpose that the illness served in their life and for the meaning of
suffering. However, the participants have a search for meaning that is accomplished in
relationship with Self. The connections with family/community and God will facilitate
this, but at some point this search for meaning can only be accomplished by the person
living with a life-limiting illness. A person must determine the criteria used to evaluate
quality of life and to define a meaningful existence (Frankl, 1985).
This work is done primarily in relationship with messages that are being received
from the physical body, such as increasing symptom burden (symptom exacerbation, new
symptoms) and the presence of physical limitations such as difficulty with ambulation,
requiring assistance with bathing and decreased stamina.
Symptom management is the hallmark of quality end of life care. Clinical staff
are skilled at patient assessment and the identification of assistive devices that will
compensate for physical limitations. However, the body will deteriorate during the
course of a life-limiting illness. The changes may occur in a slow downward trajectory or
in a trajectory characterized by periods of physical deterioration followed by stable
periods of little deterioration. The symptoms can be managed and for the most part
controlled to the patient's satisfaction; however, as death approaches the physical
deterioration cannot be stopped. A person living with a life-limiting illness comes face to
face with existential issues.
Creating Meaning: What If My Healing Is Not Physical?
Mr. Dell's case study illustrated how physical symptoms and physical deterioration
impact the experience of living with a life-limiting illness. Other participants added more
dimensions to this topic. For example, the topics related to the loss of independence, loss
of control, loss of dignity and the fear of being a burden often accompanied discussion
about physical deterioration. Although many participants discussed these topics, two
participants were very articulate about the strategies used to manage the fear of the loss
of independence, loss of control and being perceived as a burden. These two participants
(a man and a woman) had some characteristics in common: a one-year length of stay in
hospice program at the time of their interviews, independence in all aspects of their care
and satisfaction with physical symptom management. In contrast to the experience of Mr.
Dell, the physical symptoms and physical limitations of these two participants' were not a
focal point of the interviews.
These two participants used multiple affirmations that encouraged physical activity
and the belief in an inner motivation throughout the interviews. One of these participants
used an affirmation that he attributed to the Bible, "The Lord said you make one step and
I'll make two." The researcher sought consultation from the hospice chaplain to identify
the Bible verse that is the source of this allusion. The chaplain shared that this
affirmation is commonly attributed to the Bible, but there is no literal or metaphorical
source for this aphorism. An excerpt from his interview is included below:
I never have stopped. Like I always said long as you got the willpower you'll live.
When you lose trust in yourself you can just kiss it goodbye.
He is declaring that staying active and having a strong inner drive will keep him
alive. The phrase "losing trust in yourself" is a way of expressing his fear of about the
loss of control and independence. He uses the phrase "you can just kiss it goodbye" as a
euphemism for death. Given that he is in hospice, this euphemism could refer to a
physical death, but it is possible that the death he is speaking of is a metaphorical death of
his identity as an active and vital man. The researcher asked him to talk about his life
when he is not as active as he was at the time of the interview. He did not want talk
about that possibility.
The second participant spoke about the same inner drive that she calls "that wanna
do." She used a narrative about her parents to illustrate the source of her belief in
independence, hard work and the internal motivating drive. The same narrative also told
how she passed on those beliefs to her children. Her family valued education, but
independence and the inner drive were held in higher esteem. She stayed very active
with her church activities and family commitments. She was very emphatic that she
wanted to stay independent. This quote is from her last interview:
I don't like to depend on nobody for nothing, do it yourself. Something to be done,
don't wait for nobody to do it, go on and do it.
This passage describes her fear of being vulnerable and of losing of control if she
has to depend on others. If she were to depend on others, two things would be required: a
new definition of herself and the reconsideration of her family values. She talked about