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Understanding suffering at the end of life

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Title:
Understanding suffering at the end of life
Creator:
Kassner, Cordt Engle Todd
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English
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xi, 121 leaves : ; 28 cm

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Subjects / Keywords:
Suffering ( lcsh )
Terminal care ( lcsh )
Terminally ill ( lcsh )
Death ( lcsh )
Death ( fast )
Suffering ( fast )
Terminal care ( fast )
Terminally ill ( fast )
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bibliography ( marcgt )
theses ( marcgt )
non-fiction ( marcgt )

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Bibliography:
Includes bibliographical references (leaves 116-121).
General Note:
Department of Health and Behavioral Sciences
Statement of Responsibility:
by Cordt Engle Todd Kassner.

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|University of Colorado Denver
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|Auraria Library
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50741754 ( OCLC )
ocm50741754
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LD1190.L566 2002d .K37 ( lcc )

Full Text
UNDERSTANDING SUFFERING AT THE END OF LIFE
by
Cordt Engle Todd Kassner
B.S. Social Work, Illinois State University, 1989
M.A. Counseling, Denver Conservative Baptist Seminary, 1993
A thesis submitted to the
University of Colorado at Denver
in partial fulfillment
of the requirements for the degree of
Doctor of Philosophy
Health and Behavioral Sciences
2002
1


This thesis for the Doctor of Philosophy
degree by
Cordt Engle Todd Kassner
has been approved
by


Kassner, Cordt Engle Todd (Ph.D., Health and Behavioral Sciences)
Understanding Suffering at the End of Life
Thesis directed by Assistant Professor Stacy Zamudio
ABSTRACT
Despite growing attention given to suffering at the end of life, surprisingly little is
known about it. The purpose of this phenomenological study was to better
understand suffering at the end of life. Twenty-five inpatients at Pikes Peak
Hospice & Palliative Care in Colorado Springs, CO, consented to in-depth
interviews. Nearly all participants were able to describe aspects of suffering,
identifying suffering as a common experience at the end of life. Data analysis
revealed three principal findings. First, suffering could be described in terms of
four domains: physical, social, psychological, and existential. Second, participants
tended to describe their experiences of suffering in terms of only one domain.
Fewer participants described their experiences in terms of multiple domains,
although the literature implies that this often occurs. Third, when participants
described multiple domains, they revealed a dynamic tension integrating the
domains change in one domain often affected other domains. Literature and
existent theory were reviewed and compared to findings of this study. Additional
research ideas for consideration are discussed. This study provides a scholarly
foundation on which to base additional research that is needed to further understand
suffering at the end of life and consequently, to create more effective clinical
interventions to alleviate suffering.


This abstract accurately represents the content of the candidates thesis. I
recommend its publication.
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ACKNOWLEDGEMENT
I would like to express my gratitude to the patients and staff at Pikes Peak
Hospice & Palliative Care. Particularly, the following people made significant
contributions to the conduct and interpretation of this study: Jill France, May Hertel,
Jane Schnell, Jonathan Weston, and Martha Barton.
I would like to acknowledge the thoughtful contributions to this study made
by my dissertation committee: Stacy Zamudio, John Steiner, Lea Gaydos, and
Stanley Mullen.
I would also like to acknowledge my colleagues at the University of
Colorado Health Sciences Center. The following people have given me
opportunities to explore various aspects of research at the end of life and have
tremendously deepened my respect for those who participate in this work: Jean
Kutner, David Nowels, Dan Johnson, John Armstrong, Richard Martinez, and Mark
Yarborough.
Most importantly, I want to recognize the substantial sacrifices made with
patient perseverance by my wife and children during the years spent working toward
this degree. This work is dedicated to Scotti, Bryan, and Carli.


CONTENTS
Figures.....................................................x
Tables......................................................xi
CHAPTER
1. INTRODUCTION.................................................1
Purpose and Rationale of the Study........................2
Background................................................3
Terminology: Suffering, End of Life, Dying, and Death ....3
Demographics on Death and Dying.....................5
Introduction to Hospice and Palliative Care.........8
Ethics of Research at the End of Life..............10
Summary..................................................13
2. STUDY METHODOLOGY...........................................14
Overview of Qualitative Research Methods.................14
Definitions and Discussion of Qualitative Research.14
Five Qualitative Methods...........................17
Phenomenology......................................21
Summary of Investigators Previous Work in this Area.... 25
vi


Scope of the Study.......................................27
Data Limitations.........................................30
Data Analysis Plan.......................................31
Data Collection Procedures.........................32
Data Analysis......................................32
Summary of Methodology...................................33
3. RESULTS......................................................34
General Descriptions of the Interview Process............34
Data Analysis............................................40
Horizonalization...................................41
Meaning Groups.....................................41
Domains............................................42
Synthesis of the Essence...........................67
Verification.............................................69
4. DISCUSSION..................................................71
Review of the Literature.................................71
Suffering and the Loss of Personhood...............71
The Frequency of Suffering.........................75
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The Good Death..................................77
Review of Extant Theory..................................84
Saunders Total Pain.............................84
Kubler-Ross Stages of Grief.....................86
Dildy Phases of Changes.........................87
Feminist Theory...................................88
Wilber Consciousness Psychology.................89
Maslow Hierarchy of Needs.......................89
Frankl Logotherapy..............................92
Philosophy of Holistic Health.....................94
Additional Research Areas to Consider....................96
5. CONCLUSIONS.................................................99
APPENDIX.............................................................101
A. Human Subjects Review Board Study Summary.................102
B. Human Subjects Review Board Participant Consent Form......108
C. Study Questions...........................................Ill
D. University of Colorado at Denver IRB Approval Notification.112
E. Pikes Peak Hospice & Palliative Care Research Approval....113
viii


F. Quantitative Information Regarding Study Process........114
G. Example of Horizonalization Table.......................115
BIBLIOGRAPHY......................................................116


FIGURES
Figure
4.1 Total Pain Model..................................................85
4.2 Maslows Hierarchy of Needs.......................................90
4.3 Maslows Hierarchy Compared To Four Domains of Suffering..........90
4.4 Maslows Order of Met Needs.......................................91
4.5 Maslows Order of Met Needs Compared to Frankl....................92
x


TABLES
Table
3.1 Identified Meaning Groups............................................42
3.2 Meaning Groups and Domains...........................................44
3.3 Summary of Data Analysis............................................66
3.4 Essence: Describing Suffering At The End Of Life....................68


CHAPTER 1
INTRODUCTION
Have you thought about how you will die? When, do you think, will it be?
Where? Who will be present? Will it be from a chronic condition or an acute
episode? What would you most like to pass on to others before you die? Will you
experience suffering?
Most people do not think about such questions, yet every person eventually
will die. Until recent years, health care professionals have attempted to circumvent
the dying process. When forced to confront death and dying, health care
professionals tend to focus on suffering due physical pain rather than emotional or
existential concepts of suffering.
End-of-life experiences are not well understood, nor is the suffering that
many experience at the end of life. This study examines the issue of suffering at
the end of life from the perspective of people admitted to an inpatient hospice
facility, and then compares these results to the literature and existent theory to
develop further research ideas.
1


Purpose and Rationale of the Study
The purpose of this qualitative, phenomenological study is to describe the
experience of suffering at the end of life.
The rationale for doing this study is to better understand the needs of a
vulnerable group that at some point we will all become members of the dying. It
is appropriate to consider the dying a vulnerable group because emotional and
physical strains may limit peoples abilities and choices as death approaches
(Kristjanson, Hanson, & Balneaves, 1994). This is particularly true with chronic
medical conditions, which account for an increasing proportion of deaths (Field &
Cassel, 1997). People may lose their ability to advocate for their own desires about
treatment and care as their health declines and as death nears.
Scant literature is available addressing the experience of suffering at the end
of life. Most of this literature is written by health professionals and is based on
personal clinical experience rather than direct research with people who are at the
end of their lives (Byock, 1997; Cassell, 1982). Little research is published
regarding suffering at the end of life. Available research suggests that people
differentiate between physical pain and suffering (Baines & Norlander, 2000) and
that while physical symptom management is important, it is only one aspect of total
end-of-life care (Steinhauser et al., 2000).
Health professionals cannot alleviate suffering if they do not know it exists
(Cassell, 1982). All too often they cannot alleviate the suffering they are aware of
2


due to their limited understanding of this complex phenomenon. It is hoped that
this study will increase our understanding of suffering at the end of life,
encouraging further research and the development of more effective interventions
to alleviate suffering.
Background
Brief discussion of three areas will provide background information and
context for this study: 1) terminology (suffering, end of life, dying, and death); 2)
an introduction to hospice and palliative care; and 3) the ethics of end-of-life
research.
Terminology: Suffering. End of Life. Dying, and Death
Several key terms are used throughout this work that require discussion:
suffering, end of life, dying, and death.
Suffering. The hospice and palliative care literature contains definitions
and descriptions of suffering from the clinicians perspective, as detailed in
Chapters 2 and 4. For the purpose of this study, descriptions of suffering were
sought from the participants perspective and are detailed in Chapter 3. Creating a
definition of suffering was not a goal of this study.
End of Life. The 1997 Institute of Medicine report Approaching Death:
Improving Care at the End of Life offers a common meaning of the term old age
3


or the concluding phase of a normal life span. However, the report continues to
say that, in some respects, people advance toward death from the moment they are
bom, and lifes ending can occur at any age and time (Field & Cassel, 1997). For
the purpose of this study, end of life refers to those receiving hospice care,
regardless of age.
Dying. Dying is not a precise medical or diagnostic term. It is difficult to
predict exactly when a person is within 6 months of death (Christakis & Lamont,
2000; Lynn, Harrell, Cohn, Wagner, & Connors, 1997; Pearlman, 1987). For the
purpose of this study, dying refers to those within days or months of anticipated
death.
Death. Physicians, philosophers, theologians, lawmakers and others have
difficulty reaching unanimous consensus on a definition of death. According to the
Institute of Medicine, a widely accepted statement defines death for legal purposes
as the irreversible cessation of circulatory and respiratory function or the
irreversible cessation of all functions of the entire brain, including the brain stem
(Field & Cassel, 1997, p. 27). This study does not propose to specify the moment
of death, but rather to focus on understanding the experience of suffering prior to
death.
4


Demographics on Death and Dying
The Institute of Medicine report cited above provided information on how
many people die in the United States, when they die, and where. According to this
report, the total number of deaths in the United States increased from 1,989,841 in
1980, to 2,148,463 in 1990, to an estimated 2,312,189 deaths in 1995 (Field &
Cassel, 1997, p. 34). This increase in the total number of deaths is partially
attributed to the aging of the American population.
America is aging, in part, due to the baby-boomer generation and the
increasing life-expectancy rate. Post-World War II baby boomers will reach age 65
between the years 2011 and 2030. In 1994, approximately 1 in 8 persons (13%) of
the population were 65 years or older. In 2030 it is estimated that 1 in 5 persons
(20%) will be in this age group (Field & Cassel, 1997). An increase in life
expectancy at birth has also contributed to an aging America. In 2001, average life
expectancy in the United States was nearly 77 years, the highest in history (Healy,
2001). This compares to life expectancy in 1900 of less than 50 years and the 1992
value of 75.8 years (Field & Cassel). The total number of deaths each year is
increasing, the baby boomer generation is aging, and predicted life expectancy is
steadily growing. Health care providers will soon face new challenges in working
with aging and dying people.
Primary causes of death have changed during the past 100 years. In the
early 1900s, communicable diseases such as influenza, tuberculosis, and
5


diphtheria were the leading causes of death in the United States. Currently, the
three leading causes of death in the United States, accounting for 62 percent of all
deaths in 1995, are heart disease, cancer, and stroke (Field & Cassel, 1997).
As the primary causes of death have changed over the past century, so has
the location of death. Historically people died at home. As recently as 1949, only
49.5 percent of deaths occurred in institutions, compared to 80 percent of deaths
occurring in institutions in 1992 (Field & Cassel, 1997).
Morrison, Meier, and Cassel (1996) offer an example of what they consider
a common and disturbing death in America. After detailing the case of a 73-
year-old man, they offer the following summary:
Despite repeated requests that he receive no further diagnostic interventions
or life-prolonging treatment and that he be allowed to return home to die,
the patient underwent a lung biopsy, three CT studies, daily phlebotomies,
and insertion of multiple nasogastric tubes, as well as a gastrostomy tube.
He was tied to a bed for 29 days so he would not remove the intravenous
lines or feeding tubes, and he spent the last month of this life in the hospital.
Recent reports suggest that this case, unfortunately, is not unusual (p. 1757).
The authors state that the medical profession is obligated to cure disease and to
relieve suffering. The case above clearly illustrates a priority placed on curative
models of care at the expense of relieving suffering. They conclude by challenging
the medical professions to balance curative models of care with the relief of
suffering, particularly with dying patients.
Individual examples, while rich in context, are nonetheless anecdotal.
However, larger and more quantitative studies support that the curative model of
6


medical care is overemphasized, both in training and clinical practice, for persons
near the end of their lives. Fox observes that current medical school training
programs appear unbalanced, neglectful of palliative care and inordinately focused
on cure (Fox, 1997, p. 763). The Study to Understand Prognoses and Preferences
for Outcomes and Risks of Treatment (SUPPORT) entailed a 2-year prospective
study involving 9105 patients from five leading medical centers. Patients were
eligible for this study if they were hospitalized with one or more of nine life-
threatening diagnoses. These patients had an overall 6-month mortality rate of
47%. Aggressive treatment was the norm. Among all deaths, the median number
of days spent in an ICU, comatose, or receiving mechanical ventilation was 8; 38%
spent at least 10 days in an ICU; and 46% received mechanical ventilation within 3
days of death. Insufficient pain management was common; among all deaths,
surrogates indicated that 50% of all conscious patients who died in the hospital
experienced moderate or severe pain at least half the time during their last 3 days of
life. Interventions aimed at improving care and patient outcomes, including some
designed to ensure adequate pain control and less aggressive ICU care, were
unsuccessful (SUPPORT Principal Investigators, 1995).
From these data, it is clear that both causes of death and the process of
dying have changed drastically over the past few decades. For much of human
history, medicine had only a small role in the dying process this was generally a
personal, familial, and spiritual event. More recently, however, death has become
7


more like a medical failure than a natural part of the life cycle. The rise of
hospice occurred, in large part, to render the dying process a humane and natural
event.
Introduction to Hospice and Palliative Care
The National Hospice and Palliative Care Organization (NHPCO) defines
hospice care as the model for quality, compassionate care at the end of life. A
team-oriented approach is used to address medical care, pain management,
emotional, and spiritual support for people at the end of life and their families. The
focus of hospice is on caring, not curing. Hospice care is usually provided in the
patients home, although it also occurs in freestanding hospice facilities, nursing
homes, hospitals, and other care facilities (NHPCO, 2001). Although hospice care
is not in principle limited in duration, reimbursement organizations (e.g., Medicare
and private insurance companies) generally require that a physician certify a life
expectancy of 6 months or less for the beneficiary to receive the hospice benefit.
Hospices provide one form of palliative care; however, one does not need to
be dying to receive palliative care. Palliative care, similar to hospice care, includes
comprehensive management of patients physical, psychological, social, spiritual,
and existential needs. Palliative care can be part of the treatment of any person
with a serious or life-threatening medical condition. According to the Center to
Advance Palliative Care, palliative care neither hastens nor postpones death, but
8


rather seeks to relieve suffering, control symptoms, and restore functional capacity
while remaining sensitive to personal, cultural and religious values, beliefs and
practices (CAPC, 2000, p. 1).
The modem hospice movement began in 1967 when Dame Cicely Saunders
opened St. Christophers Hospice in London, England. Saunders witnessed much
suffering and death as a nursing student during World War II. She eventually left
nursing and trained as a medical social worker. Based on her experiences as a
nurse and social worker, she understood that improved care for the dying was
needed. To do this, she completed an additional degree in medicine. During the
late 1950s and early 1960s, she refined her techniques of working with morphine
for pain management. Noticing that breakthrough pain was occurring prior to the
next regularly scheduled morphine dose, she began adjusting the medication doses
and administration intervals to avoid this unnecessary pain. Saunders prioritized
the treatment of physical pain, followed by addressing psychological and spiritual
suffering associated with the dying process. She believed it was necessary to
alleviate physical symptoms so that people could then get on with the real work
of dying i.e., bringing meaning to their lives and closure to important
relationships (Bentley, 2001; Chochinov & Breitbart, 2000; Webb, 1997).
In the United States, the modem-day hospice movement began in 1974
when the Connecticut Hospice in New Haven opened, based on the model of St.
Christophers Hospice.
9


The National Hospice and Palliative Care Organization estimates that in
2000, approximately 3,100 hospice programs across the United States admitted
700,000 patients, of which over 600,000 died while receiving hospice care. They
estimate that in 2000, approximately 2.4 million Americans died. This means that
one out of every four people who died in the United States received hospice care at
the time of their death (NHPCO, 2001). Works by Connor (1998) and Sherman
(1999) provide interesting overviews of the hospice movement and end-of-life care.
Ethics of Research at the End of Life
Ethics must be considered prior to the conduct of any research. History
contains several examples of unethical medical research. German concentration
camp experimentation (which led to the Nuremberg Code) and the American
Tuskegee study of syphilis which, in part, led to the development of the National
Commission for the Protection of Human Subjects of Biomedical and Behavioral
Research, are examples of unethical medical research that are often cited. Research
involving people particularly vulnerable people must be carefully evaluated
from an ethical perspective.
Many texts and perspectives are available to assist in the ethical evaluation
of medical research (Beauchamp & Childress, 1994; Corey, Corey, & Callanan,
1993; Coughlin, 1995; Gert, Culver, & Clouser, 1997; Loewy & Lowey, 2000;
Pence, 1995; Rae, 1995; Randall & Downie, 1999; Shrader-Frechette, 1994;
10


Veatch, 1997). When considering bioethical issues, Beauchamp and Childress
advocate for consideration of four ethical principles by both health care
professionals and potential research participants: autonomy, nonmaleficence,
beneficence, and justice. They argue that these four principles should pervade all
of healthcare, including research (Beauchamp & Childress, 1994). In the
application of these principles to the topic and population of this research,
autonomy requires that people be given the opportunity to voluntarily participate or
refuse participation in studies. Nonmaleficence requires that we do not conduct
research with people whom the research may unduly harm. For example,
consideration of various aspects of suffering could cause undue distress for some
people. Beneficence requires that research carry some benefit, whether now or in
the future. The purpose of this study is to describe suffering and by doing so lead
to its alleviation. Finally, justice is served by maintaining acute awareness that
time is a scarce resource for people at the end of their life.
Particular attention must be given to research studies involving vulnerable
populations. According to the University of Colorado at Denver Human Subjects
Research Committee Guidelines, vulnerable populations include children, the
mentally handicapped, prisoners, pregnant women, or fetuses (UCD, 2001).
Although not formally included in the above definition of vulnerable
populations, it has been argued that people near the end of their lives are at an
especially vulnerable and fragile time. Kristjanson, Hanson, and Balneaves (1994)
11


note that dying people may be vulnerable for several reasons, including limited
energy and endurance, response to their knowledge of impending death, loss of the
future, family distress, and perhaps difficulty in managing physical symptoms. In
addition, participants may feel pressure to participate in a research study if the
investigator is also their clinical care provider.
Randall and Downie (1999) raise three ethical problems with conducting
research with people at the end of their lives. First, people in hospice may be
experiencing symptom distress, making them more dependent upon the hospice
staff, and therefore feeling coerced into research participation rather than
voluntarily participating. Second, it might be argued that people in a terminal state
should just be left alone to spend time with family and friends. That is, new
treatments or research projects should not be attempted with the terminally ill as
their time left alive is limited. Third, the terminally ill persons family or friends
might feel distressed if they feel new treatments are being tested on their loved one
during the terminal phase of an illness.
However, neither Kristjanson nor Randall and Downie are opposed to
conducting research with people at the end of their lives, so long as ethical
considerations are addressed prior to and during study implementation.
Researchers must be aware of and consider these ethical issues as they try to
advance research on palliative care.
12


In summary, the researcher must consider each individuals current and
overall ability to assess the appropriateness of participation in research. I believe
that cognitively intact people at the end of their lives are able to give informed
consent to participate in a study, or to give informed refusal. I argue that if care at
the end of life is to be described, evaluated, and improved, ethical research must be
conducted with this group of people.
Summary
Chapter 1 provides an introduction to the importance of and challenges
associated with studying suffering at the end of life. Defining terminology,
demographic information on death in the United States, and a brief history of
hospice, provided general background for this study. Ethical issues related to the
conduct of studies in the terminally ill were discussed, particularly regarding issues
of informed consent and the assumption that the dying, while not formally
recognized as such, constitute a vulnerable population.
Chapter 2 details the methodology used for this study.
13


CHAPTER 2
STUDY METHODOLOGY
This chapter includes an overview of qualitative research methods, a
summary of the investigators previous work in this area, the scope of this study,
data limitations, and the data analysis plan.
Overview of Qualitative Research Methods
Qualitative research methods could help us to improve our understanding of
medicine... A broad base of medical and scientific knowledge is needed if
medicine is to maintain its identity as a discipline founded on scientific
knowledge. However, interpretive action must also be included in medical
knowledge (Malterud, 2001b, p. 483).
Malterud argues for the importance of qualitative research in medicine.
This overview of qualitative research will discuss definitions and characteristics of
qualitative research, five qualitative research methods, and specifically the
phenomenological method.
Definitions and Discussion of Qualitative Research
Denzin and Lincoln (1994) define qualitative research as multi-method in
focus, involving an interpretive, naturalistic approach to its subject matter (p. 2).
14


Qualitative researchers use a variety of methods to collect empiric data that
describe peoples lives and the meaning they attach to their experiences. Denzin
and Lincoln emphasize the variety of data collection methods used in qualitative
research, including case study, personal experience, introspective, life story,
interview, observational, historical, interactional, and visual texts.
Creswell defines qualitative research in a more focused fashion than Denzin
and Lincoln:
Qualitative research is an inquiry process of understanding based on distinct
methodological traditions of inquiry that explore a social or human
problem. The researcher builds a complex, holistic picture, analyzes words,
reports detailed views of informants, and conducts the study in a natural
setting (1998, p. 15).
Rather than focusing on the methods of data collection, Creswell describes
what can be accomplished through use of qualitative methods a holistic picture
of a social or human problem. Qualitative research is unique because the various
methods used are intended to create a comprehensive understanding of emotion-
laden, personal, and practical problems spanning the social and human sciences that
affect people.
Moustakas (1994), in Phenomenological Research Methods, lists the
following seven characteristics of qualitative research (p. 21):
1. Recognizing the value of qualitative designs and methodologies, studies
of human experience that are not approachable through quantitative
approaches
2. Focusing on the wholeness of experience rather than solely on its
objects or parts
15
1


3. Searching for meanings and essences of experience rather than
measurements and explanations
4. Obtaining descriptions of experience through first-person accounts in
informal and formal conversations and interviews
5. Regarding the data of experience as imperative in understanding human
behavior and as evidence for scientific investigations
6. Formulating questions and problems that reflect the interest,
involvement, and personal commitment of the researcher
7. Viewing experience and behavior as an integrated and inseparable
relationship of subject and object and of parts and whole
Qualitative research methods, and phenomenology in particular, study complex,
layered human experiences and problems. They search for meanings rather than
definite answers. Qualitative research methods are useful to achieve partial
understanding and to identify new questions as a basis for further research about a
broad scope of human experience (Malterud, 2001a).
Two important considerations when judging the accuracy of qualitative
research are reflexivity and verification. Reflexivity acknowledges the active
participation of the researcher in the research process. Researchers backgrounds,
interests, biases, and communication styles influence what is studied and how their
work is communicated. The effect of the researcher should be assessed on every
step of the research process, and later shared. Verification is largely related to the
researchers perspective on and interpretation of the data. Ideas and interpretations
should be well grounded and well supported, and progress in a logical, stepwise
manner is directed by the data. Another approach used for verification of
qualitative data is peer review. Peer review requires that a person outside the
16


study review the data to confirm identified patterns and assess the logic of the
experience. Qualitative research is usually not judged on criteria applied to
quantitative research such as objectivity, generalizability, or validity (in the sense
of reproducibility).
Although there are several reasons to choose qualitative methods for a
research project, three reasons compelled the use of qualitative methods to study
suffering at the end of life. First, the purpose of this study was to describe an
experience that is not well understood. Qualitative methods are effective in
describing experiences about which little is known, particularly complex
phenomena with multiple layers of meaning. Second, it was reasonable to choose
qualitative research methods to explore and describe this topic because suffering is
difficult to define and there is little theory available to address problems related to
suffering at the end of life. Third, it is logical to choose a research approach that
initially focuses more on depth of understanding than breadth of
generalizability to really understand the complexity of suffering at the end of life.
Five Qualitative Methods
There are several different methods of qualitative research. I have
borrowed heavily from Creswell in the summary descriptions of the following five
qualitative methods (Creswell, 1998, pp. 5-45) and included examples from the
literature of each of these methods, when available.
17


Phenomenological Qualitative Method. Phenomenological studies originate
from psychology and philosophy, exploring the various meanings people attach to
specific experiences. A phenomenological study examines the shared experiences
of a small number of people searching for central, underlying domains. Data
analysis is methodical, focusing on the meaning of events as described by the
individuals experiencing them. Data analysis searches participant experiences for
common themes that are clustered into meaning groups, and finally synthesized
into universal domains describing the experience under study. According to
Polkinghome, the reader of a phenomenological study should be able to say, I
understand better what it is like for someone to experience that (cited in Valle &
Hailing, 1994, p. 46). No phenomenological studies examining suffering at the
end of life were found in a search of the literature.
Biographical Qualitative Method. Biographical studies originate from the
humanities and social sciences. In a biographical study, the author interviews one
person who is the focus of the study and writes a synopsis of his/her life. The
author uses interviews and descriptions of real-life events to explore particularly
significant events in the participants life. The author contributes his/her own
reflections on the significance and meaning of these events. A recent biographical
work having substantial impact in the hospice field was Byocks Dying Well:
Peace and Possibilities at the End of Life that explores the meanings of life and
death in ten people (1997). A 1996 biographical study examined the experience of
18


suffering as compared to enduring, although this was not with people at the end of
their lives (Morse & Carter, 1996). At least two autobiographical works examine
suffering and (near) end-of-life experiences Franks At the Will of the Body
(1991) and Frankls Mans Search for Meaning (1959).
Grounded Qualitative Method. Grounded studies originate from sociology.
The purpose of a grounded study is to generate theory that relates to an event. The
author lives in the context of the event under study taking notes, making
observations, and conducting interviews. Usually 20-30 interviews are conducted,
or until no more new information about the event is discovered. Data collected is
coded by themes, and the codes are analyzed to create a theory that assists in
explaining the event. Theory generated in a grounded study contains specific
components: a central phenomenon, causal conditions, strategies, conditions and
context, and consequences. Data analysis results in models or theories.
Although phenomenological studies and grounded theory studies are
similar, there are subtle differences. A phenomenological study emphasizes the
meaning of an experience for a number of individuals, while a grounded study
generates an abstract analytical schema of an event and how people act and react to
that event (Creswell, 1998).
For example, Glaser and Strauss (1965) conducted a grounded theory study
focusing on interactions between staffs and patients, reporting on contexts of action
surrounding the process of dying. They attempted to understand and explain how
19


hospitals staffs and organizations were managing a growing number of dying
patients in their institutions. They specifically did not focus on the patients
themselves or merely on attitudes toward death (p. viii). Perhaps a
phenomenological study would focus exactly on the patients themselves and the
meanings they associate with the dying process or death. In this context,
phenomenological studies describe the meaning of experiences and provoke
questions, while grounded studies create frameworks (theories) attempting to
explain events and answer questions about them.
Ethnography Qualitative Method. Ethnography originates from
anthropology and sociology. As Creswell (1998) states, ethnography is a
description and interpretation of a cultural or social group or system (p. 58). The
ethnographer spends copious amounts of time doing fieldwork to understand the
cultural norms and rules of the group being studied. The final analysis represents a
cultural portrait of the group under study, including descriptions from the
perspective of group members (emic perspectives) as well as the authors
understanding of how this group is structured (etic perspectives). Recently, Lawton
(2000) published an ethnographic study describing a group of people she
encountered over a 10-month period when she worked as a volunteer in a London,
England hospice.
Case Study Qualitative Method. Case studies originate from the human and
social sciences and applied areas such as evaluation research. A case study is the
20


study of an event a program, activity, or individual. Typically objects of a case
study are defined by time frames with actual start/stop points, and multiple methods
of data collection are used. An example of a case study would be the examination
of a patients suicide attempt. The purpose of the case study might be to review
strengths and weaknesses of the patients treatment plan. Clearly this would be
different from a phenomenological study that might focus on the meaning of
suicide attempts for a small group of suicide attempt survivors.
Phenomenology
Phenomenology was chosen for this study for several reasons. First, the
purpose of the study was to describe a concept, or phenomenon suffering at the
end of life. As detailed above, other qualitative methods accomplish different
purposes: biographies study specific individuals, grounded approaches generate
theory, ethnographies describe cultural groups, and case studies study specific
cases.
Second, a review of the literature revealed no phenomenological studies of
suffering at the end of life. Qualitative works using biographical, grounded, and
case study methods were found and will be commented on more extensively in
Chapter 4.
The third reason a phenomenological method was chosen for this study was
because it is important to listen to people who are suffering at the end of life.
21


Historically philosophers have speculated on the topic of suffering. More recently,
physicians and other health care providers have discussed the issue of suffering
amongst themselves (Cassell, 1991). Rarely, however, is the experience and
perspective of the person suffering taken into account. Frank (1991) suggests that
the sole responsibility of the sick person is to communicate their experience with
others, and the sole responsibility of caregivers is to listen. It is important to know
more about these experiences, and the meaning individuals attach to them, if health
care providers are to design forms of care and interventions to ease suffering in the
terminally ill.
Two philosophical underpinnings of the phenomenological method require
discussion: bracketing and psychological phenomenology. Bracketing requires that
researchers set aside their own experiences (termed reflexivity) and the
preconceived ideas of others, as much as possible, until they are supported by data.
Key concepts to be bracketed are discussed below. This study was approached
from a psychological perspective, which is only one of several approaches to
phenomenology. Psychological phenomenology focuses on the meanings people
derive from experiences they have had and are able to discuss (Moustakas, 1994).
Another approach to phenomenology, for example, is social phenomenology,
which examines how people develop meaning from social interactions.
22


Bracketing requires that bias and preconceived notions consciously be set
aside. In the work conducted for this study, three primary areas that are logical
targets for bracketing are:
1. Definitions of suffering
2. My expectation that relationships are influential in the experience of
suffering
3. My expectation that people will try to find meaning in their experience
of suffering
Bracket 1: Definition of Suffering. As noted above, the literature contains
no phenomenological research studies describing the experience of suffering at the
end of life. However, the literature does discuss definitions and understandings of
suffering based on clinician experience.
Cassell defines suffering as the state of severe distress associated with
events that threaten the intactness of the person. He describes various features of
personhood, including having personality and character, family ties, cultural
background, social roles and relationships, a body, etc., each of which may impact
an individuals experience of suffering (Cassell, 1982, p. 640).
Cherny, Coyle, and Foley (1994) define suffering as an aversive emotional
experience characterized by the perception of personal distress that is generated by
adverse factors undermining the quality of life (pp. 57-58). Defining
characteristics of suffering therefore include the presence of perceptual capacity
23


(sentience), that the factors decreasing quality of life are interpreted as distressing,
and that the experience is aversive. This description was arrived at by Cherny et
al., following a study of 75 people, 14 of whom were patients, involved in 12 focus
groups (Cherny, et al.).
Byock concurs with Cassells definition of suffering, highlighting the
additional dimensions of future and meaning (Byock, 1996). Byock notes that the
dying person may experience suffering due to the loss of hopes and plans for the
future. He also references Frankls work regarding meaning, saying, Human
suffering requires the felt loss of meaning and purpose in life. Pain and privation
can be endured if it is for a purpose (p. 242).
These clinician definitions and ideas regarding the experience of suffering may
or may not be supported by the experiences of hospice residents, and therefore
must be bracketed during this study.
Bracket 2: Beliefs and Relationships Assumed Influential in the Experience
of Suffering. Most people in the hospice field suggest that spiritual / religious
beliefs, family ties, and close friendships influence the experience of suffering. A
positive aspect of spiritual beliefs for people would be finding existential meaning
in and through suffering, resulting in an experience of decreased suffering. (For
example, a man with severe pain may relate his experience to Jesus dying on a
cross, experiencing an existential closeness to God, and this may decrease his
suffering.) A negative aspect of spiritual beliefs for people is having difficulty
24


integrating experiences with spiritual beliefs, resulting in an experience of
increased suffering. (For example, a man with severe pain may question if God
still loves him, and this questioning may increase his suffering.) Similarly, family
ties and close friendships may also result in decreased or increased suffering. As
with definitions of suffering, I bracketed these assumptions until data from
participants confirmed or denied their veracity.
Bracket 3: People Will Try to Find Meaning in Their Experience of
Suffering. Consistent with the hospice literature (Byock, 1997; Cassell, 1982;
Webb, 1997), I expected the majority of people I interviewed to be reflecting on
important aspects of their life, particularly as death approached. This expectation
was bracketed.
Summary of the Investigators Previous Work in this Area
Reflexivity required me to describe my experiences with suffering at the
end of life and consider how these experiences may have influenced the conduct of
this study.
My current work in the Division of General Internal Medicine at the
University of Colorado Health Sciences Center has contributed to the development
of my ideas and the focus of this dissertation. For the past three years I have
worked with Jean Kutner, MD, MSPH, and David Nowels, MD, MPH, to create
and manage the Population-based Palliative Care Research Network (PoPCRN).
25


PoPCRN is methodologically similar to other successful primary care research
networks, although its mission is to rigorously research palliative care issues. In
the past three years, over 130 hospice / palliative care sites in 25 states have
expressed interest in participating in PoPCRN research studies. I have had the
privilege to work with all of these sites and several other researchers to design,
implement, and analyze eight studies to date.
One of the studies conducted by PoPCRN was an interview of people
receiving hospice services regarding psychosocial / spiritual issues at the end of
life. Based on findings from four focus groups, the PoPCRN research group
designed a tool that was used in 15 hospices nationwide to interview 82 people. I
personally interviewed 22 of these 82 people at two Colorado hospices. One of the
questions in this interview was, I am currently suffering. People could respond
with agree, neutral, or disagree. Preliminary data indicated that 22% of
people receiving hospice services agreed with this statement. Many of the hospice
professionals at the Colorado Hospice Organization meetings in October 2000 and
October 2001 were surprised by this finding some thought 22% was too high,
others thought it too low. Regardless of the perceived face validity of this finding,
it sparked interesting discussions of how little we know about suffering at the end
of life even among hospice workers.
My experiences with suffering at the end of life have influenced this study.
Research with PoPCRN has provided opportunities to interview hospice residents,
26


normalizing this process for me and providing evidence that people are suffering at
the end of their lives. These personal opportunities have provoked the initiation of
this study to better understand the experience of suffering at the end of life.
Scope of the Study
Pikes Peak Hospice & Palliative Care, located in Colorado Springs,
Colorado, served as the study site. Colorado Springs, founded in 1871, has a
population of approximately 320,000 people making it the second largest city in
Colorado (City of Colorado Springs, 2001). Pikes Peak Hospice & Palliative Care
is a non-profit hospice that was opened in 1980 with financial support from local
hospitals and the community. Pikes Peak Hospice & Palliative Care provides
services in both home and inpatient locations to over 180 people every day -
approximately 1,000 people each year making it the second largest hospice in
Colorado (Pikes Peak Hospice & Palliative Care, 2000; Weston, personal
communication, October 19, 2001). This study was conducted in the 37-bed
inpatient Residence facility of Pikes Peak Hospice & Palliative Care. Since I
was not employed by the site, participation (or refusal to participate) in this study
would in no way impact services provided to hospice residents.
As is consistent with phenomenological research methods, 25 hospice
residents were interviewed for this study. This sample size was chosen to ensure
sampling until redundancy. Twenty-five interviews also allowed for a broad range
27


of responses with an appropriate level of response depth to accomplish the purpose
of this study.
People were referred to this study by staff at Pikes Peak Hospice &
Palliative Care, primarily one of the inpatient counselors. Participants were
selected using a criterion sampling strategy i.e., all participants had terminal
diagnoses with a continued life expectancy of less than six months. Participants
were deemed appropriate for this study if the following criteria were met:
Participants were cognitively intact and able to consent, as assessed
by both hospice staff and myself
Participants were over 18 years of age
Participants were able to speak and spoke English
Participants agreed to participate in the interview and have it audio
taped
It is important to clarify how cognitive intactness was assessed. A formal
instrument (e.g., a Mini-Mental Status Exam) was not used in this assessment. To
provide a sense for how many people met the above criteria, an average of 4 new
people were referred to this study at each site visit, although the 37-bed Residence
always ran at capacity during the data collection period. According to staff, the
vast majority of hospice residents were either significantly confused or nonverbal.
As indicated by the small percentage of appropriate referrals at each site visit, most
hospice residents clearly did not meet inclusion criteria for this study. The site
28


inpatient counselor, who referred the majority of patients for this study, used her
clinical judgement of the participants cognitive intactness when making referrals
to this study. I would also informally assess the participants cognitive intactness
when explaining the study and reviewing the consent form. If I had any question
regarding any participants cognitive intactness, I would ask the participant 3
questions: the date, the day of the week, and the name of the hospice. I terminated
the interview if the participant was unable to answer any of these questions
correctly. Combining staff judgements regarding participant appropriateness for
this study (via limited referrals) and my clinical judgement (based on 8 years of
previous experience and research with the University of Colorado Health Sciences
Center Department of Psychiatry and using the 3 questions mentioned above), all
participants were considered cognitively intact and able to consent and participate
in this interview-based study.
Interviews were audio taped and field notes were taken. Interviews
transcribed from the audiotapes and field notes were entered into a computer-based
word processor (Microsoft Word). Participants in the study were assigned an
identification number to maintain confidentiality.
Copies of the Study Summary, Subject Consent Form, and Study Questions
submitted to, and approved by, the Human Subjects Research Committee at the
University of Colorado at Denver are found respectively in Appendices A, B, and
C. Copies of the Human Subjects Research Committee at the University of
29


Colorado at Denver Approval Notification and the Research Approval Letter from
Pikes Peak Hospice & Palliative Care are found respectively in Appendices D and
E.
Data Limitations
There are several limitations to the data collected in this study.
First, all participants interviewed were in a hospice/palliative care setting.
This may or may not be representative of terminally ill individuals in general.
People who select hospice/palliative care at the end of life may be intrinsically
different in some way than people who die suddenly, or in an acute care
environment, or do not elect hospice care. For example, demographic statistics of
those receiving hospice/palliative care indicate that participants tend to be mostly
Caucasian, with a smaller percentage of minorities than would be found in the
general population.
Second, all participants being interviewed were from the same
hospice/palliative care site. These may or may not be representative of the
population of people who choose to receive hospice/palliative care at the end of
life. Also, since all participants being interviewed were from the same site, they
were all receiving care in the same city Colorado Springs which may or may
not be representative of other cities.
30


Third, all participants being interviewed were located in the inpatient
Residence, which may or may not be representative of people who choose to
receive hospice/palliative care at the end of life in their homes. Arguably, the
inpatient residents have more complicated physical needs requiring the inpatient
(rather than home) environment.
Fourth, typically participants are carefully chosen to participate in a
phenomenological study based on their experience, and their ability to
communicate that experience, of the phenomenon under study. For this study,
participants who met the inclusion and exclusion criteria were asked to participate.
It is unknown how this convenience sample might affect the data collected.
Fifth, only participants who are able to communicate in English and agree
to participate in this study were interviewed. Among those able to communicate,
levels of pain or medication side effects may limit data collection. Even among
people receiving hospice services, perhaps the group who volunteered for this study
was somehow different from those who refused to participate. Studies regarding
characteristics of now-volunteers have not been done in the hospice setting.
Data Analysis Plan
The data analysis plan is divided into two sections: data collection
procedures and data analysis.
31
i


Data Collection Procedures
Data collection in phenomenological studies primarily takes the form of
long interviews. Although it is common to have 10 interviews when using
phenomenological methods, sample sizes in the literature have ranged from 1 to
325 participants (Creswell, 1998). This study consisted of 25 interviews to ensure
sampling until redundancy and an adequate breadth of responses. Although
occasionally information in phenomenological studies is gathered by a variety of
methods (e.g., from the work of novelists, poets, painters, etc.), it is equally
appropriate for studies to include only interviews which was the case in this
study. Questions for this study were designed to explore the participants lived
experiences of suffering at the end of life.
Data Analysis
According to Creswell (1998), there are typically three steps of data
analysis in phenomenological studies. First, the researcher reviews all interview
transcripts and lists all significant statements describing how each participant
experienced the phenomenon of interest (suffering). This is termed
horizonalization. This list should be comprehensive, though containing only non-
repetitive and non-overlapping statements. The statements are simply listed; they
are not assigned any order of importance. Second, the researcher clusters the
statements by themes into meaning groups." As with the statements, the meaning
32


groups are non-repetitive and non-overlapping. It is common to begin with 20-25
meaning groups that are reduced to 5 or 6 representative groups. Finally, the third
step and final goal of phenomenological research is to reduce the meaning groups
into a few brief sentences that unify and describe general or universal meanings
that all participants experienced (this is termed the essence).
Summary of Methodology
Chapter 2 presented several qualitative research methods and discussed why
a phenomenological approach was most appropriate for this study. The
investigators previous work was described, and assumptions regarding this study
were bracketed. Issues related to the Institutional Review Board, Subject Consent
Form, participant recruitment, and inclusion/exclusion criteria were discussed.
Lastly, Chapter 2 described the method by which data analysis was planned.
Chapter 3 describes the results of this research study.
33


CHAPTER 3
RESULTS
This chapter includes a general description of the interview process, data
analysis, synthesis of the final essence, and concludes with a discussion of
verification.
General Description of Interview Process
Twenty-five people from the inpatient Residence at Pikes Peak Hospice &
Palliative Care agreed to participate in the study, reviewed and signed the consent
form, and were interviewed between April 14, 2001 and August 29, 2001. Hospice
staff referred 67 people for interviews, of which 25 (37%) agreed to participate, 20
(30%) did not agree to participate, and 22 (33%) either died or were discharged
prior to an opportunity to discuss this study with them.
Of the 25 people interviewed, 24 people (96%) indicated experiences of
suffering at the end of life, only 1 person (4%) reported no suffering whatsoever.
Interestingly, this man described several difficulties and challenges during our 35-
minute interview, however he did not consider any of these issues to be suffering.
Of the 25 people interviewed, 18 (72%) were women and 7 (28%) were men. All
34


participants were Caucasian. Interviews ranged from 2-65 minutes the mean
length of interview was 19 minutes.
Occasionally interview length correlated with the richness of content
contained in the interview. I interviewed one woman with amyotrophic lateral
sclerosis (ALS), Lou Gehrigs disease, for 65 minutes. This was the longest and
most meaningful of the 25 interviews. This was the only interview that took place
over two meetings. Two meetings were necessary because a) the participant had
limited stamina and b) her voice was so soft that little was taped from the first
interview. This was the only interview in which I experienced difficulty with the
tape recorder capturing the participants voice. Likewise, the shortest interview -
two minutes contained nearly no helpful information. This man agreed to
participate in the interview, signed the consent form, and then essentially said, I
have nothing to say to you.
However, the interview length did not always correlate with the richness of
content contained in the interview. Some long interviews lacked any substantial
depth whatsoever while some short interviews were extremely powerful. In
particular, one ten-minute interview was with a woman who struggled desperately
for every breath of oxygen. She spent most of the interview time saying, I cant
breathe. No one would want to live like this. You wouldnt let your dog live like
this. Just let me die.
35


Several of the first participants interviewed equated suffering only with
physical pain. None of these initial participants commented extensively on
psychological, social, or existential issues. Other participants interviewed also
focused on and described only one aspect of suffering, usually physical pain.
However, some participants provided a multi-faceted description of suffering. This
led to an initial consideration of a single-dimensional understanding of suffering
versus a multi-dimensional understanding of suffering. This finding is detailed
below.
Twenty of the twenty-five people interviewed (80%) rated their current
level of suffering on a 0 (no suffering) to 10 (worst suffering they have ever
experienced) scale. Two people (8%) rated their suffering 0, three people (12%)
rated their suffering 10. Five people (20%) conceptually found it difficult to rate
their experience of suffering on a numeric scale. Scores ranged from 0-10 and had
a mean value of 5.1, median value of 5.5, and mode of 8 (n=5).
Occasionally, the participants self-rated current level of suffering was
predictable. The woman who said just let me die indeed rated her current
suffering a 10. Most of the time, however, the participants self-rated current
level of suffering was not predictable. One woman who was on oxygen, required
assistance and a wheelchair to move around, and generally looked physically
miserable rated her current level of suffering a 1. Another man showed little
emotion while describing his current disease very cognitively I understand my
36


diagnosis and prognosis and know what to expect rated his current level of
suffering a 10.
Six people (24%) expressly used humor during the interview. Twelve of
the 25 people interviewed (48%) expressed gratitude for being asked to participate
in this study. Their last comments included thank you, I hope I helped you,
and that was fun. These areas are commented on below.
On two occasions family members were in the room during the interview.
Although all rooms at Pikes Peak Hospice & Palliative Care are private, on one
occasion one room was semi-private, and both residents participated in interviews
while the roommate was present. It is not known how the presence of another
person may have affected interview content.
On October 26, 2001, eight weeks after the last interview, I contacted Pikes
Peak Hospice & Palliative Care for additional demographic information on the 25
participants interviewed. Specifically, I asked for the age, the admission date,
discharge date, and disposition for the 25 people interviewed. The mean age of
participants was 72 years, the mean length of stay was 96 days, and 21 (84%) of the
participants died at the hospice. The median number of days from admission to
discharge (or death) was 75 days. It is important to note that the median number of
days from admission to discharge for Pikes Peak Hospice & Palliative Care is about
13 days. This indicates that the participants interviewed in this study had a median
length of stay in hospice nearly 6 times longer than other people at Pikes Peak
37


Hospice & Palliative Care. It is unknown how this longer length of stay may affect
the data collected. Possibly those persons considered ineligible for this study were
those who were so ill they could not communicate. Possibly they were admitted for
inpatient care late in their final illness. Twenty-one of the twenty-five people
interviewed (84%) had died in the inpatient hospice care setting by the follow-up
date 2 months after completing the interviews. Additional details regarding this
demographic information are contained in Appendix F.
Of note, two people died the day following their interview. One was the
woman with severe difficulty breathing discussed above. The other was a woman
who was quite angry about her entire situation. When I asked her to describe her
suffering she said:
Its not compared to anything Ive ever experienced before. Its horrible.
Its cruel. Its very lonely, because I dont feel like people understand me
or understand how I feel. I dont know how anyone could feel this way.
Thats kind of the way I feel right now.
She continued to say that it is difficult to talk with someone about these things who
hasnt been there. She said she was not angry at any one person, but at science.
She believed that scientists should have enough knowledge to cure her disease and
was angry that they did not.
Twenty people refused to participate in the interview. Reasons for refusal
ranged from Id like to help your study, but I have absolutely no suffering and
therefore have nothing to say, to I dont want to talk about suffering or end-of-
38


life issues get the hell out of my room! Of note, only two people (10%) refused
to participate in the interview due to the absence of suffering. The absence of
suffering did not exclude participants from participating in the study (I thought
people reporting no suffering would add a unique perspective). However, one
pleasant woman who refused to participate because she had no suffering, was
quite clear that she did not wish to discuss the topic any further. Similarly, another
woman refused the interview saying, Im a shallow well, I wouldnt have much to
say. She also clearly communicated no desire to discuss this topic further. Some
people acknowledged suffering but refused to participate in the interview. A man
refused the interview saying, Im not suffering as much as some of the others
around here, why dont you interview them instead. One woman agreed to
participate in the interview; however, before we could begin, a family member who
was in the room at the time asked to speak with me in the hall. The family member
explained that although the patient had agreed to this interview, she (the family
member) thought it was inappropriate as the patient doesnt think she is dying and
even we havent discussed issues of suffering with her. Although the participants
opinions regarding whether or not they are currently dying is not exclusionary (in
fact, I interviewed several people who did not expect to die during their current
hospice admission), I did not pursue interviewing this particular woman due to the
family members objection. Only two people were upset by the idea of studying
suffering at the end of life and refused to participate. One man (semi-jokingly)
39


said, I dont want any part of that! Staff thought the other man, the one who
made the adamant comment above (get the hell out of my room), would want to
participate in the interview. Staff recognized tremendous suffering in this man and
thought he might appreciate the opportunity to discuss it at length. Clearly he did
not. Staff referred this man for interview twice more, however I did not re-
approach any person to participate in the interview after they had initially refused
to do so. The majority of people who declined to participate in the interview
simply said, no, thank you.
Twenty-two people referred to this study either died or were discharged
prior to an opportunity to discuss this study with them. In most cases, the person
referred to me for an interview was approached but busy, and then died prior to
another opportunity for interview. Those participants who were busy on initial
approach were sleeping, visiting with several people, out of their room, or had staff
working with them.
Data Analysis
As described in the data analysis plan (see Chapter 2, Methodology), there
were three steps involved in this analysis:
1. Horizonalization listing significant statements from the transcripts.
Each time a unique new statement was made it was recorded, and
statements revealing a similar theme thereafter were excluded.
40


Statements listed occur only once even if all participants echoed the
statement.
2. Meaning Groups statements were clustered by themes into meaning
groups.
3. The Essence a synthesis which identifies universal meanings based on
the above analysis
These steps are described below.
Horizonalization
All audiotapes from the 25 interviews were transcribed. I began the process
of horizonalization by creating a table that included all significant quotes, a basic
description of the content of the quote, and reference numbers to the person and the
transcribed interview line number. An example of this table is contained in
Appendix G. I reviewed all of the transcriptions repeatedly until I was confident
that all significant comments had been extracted and were contained (n=260
comments) in the table. I then focused on the horizonalization table, eliminating
repetitive and overlapping comments (n=195 comments).
Meaning Groups
Beginning with the unique, significant comments from the transcriptions, I
began to cluster together those with common themes, e.g., physical pain or
41


psychological pain, into meaning groups. I created 30 unique meaning groups
encompassing all of the significant comments, listed below in Table 3.1:
Table 3.1: Identified Meaning Groups
1. Acceptance of impending death
2. Choices and control
3. Continuity of care
4. Dignity
5. Existential comments
6. Family
7. Family burden
8. Fear of dying
9. Fear of illness progression
10. Fear of the unknown future
11. Financial stress
12. Giving to others
13. Humor
14. Loneliness
15. Loss of purpose
16. Mental vs. physical disability
17. Motivation, history of surviving difficult times
18. Optimism
19. Other patients in the hospice
20. Personal responsibility for own situation
21. Physical issues, including pain
22. Prepare family for death
23. Prepare self for death
24. Priorities
25. Relief of suffering
26. Social
27. Spiritual
28. Suffering
29. Thankfulness
30. Time / Foreshadowing
Domains
After creating meaning groups from the transcriptions, the next step in
phenomenological data analysis is to create 5-6 groups that fully describe all
42


aspects of suffering at the end of life. Upon reflection, it became clear that all 30 of
the categories listed above fit into one of four global domains: physical, social,
psychological, or existential. Meaning groups did not have to be exclusive to one
domain, so long as all 30 meaning groups could be contained within the 4 domains.
The physical domain generally refers to human anatomy, biology, and the body that
supports the existence of the other 3 domains. The social domain specifically
refers to language and interactions between human beings. (Some people include
interactions between humans and other living or inanimate objects in the social
domain; however, for the purpose of this study I limited it to interactions between
people.) The psychological domain generally refers to an individuals
understanding of their mind and behavior. The existential domain generally refers
to the purposes, values, and meanings that people use for motivation and to make
sense of the world (Benner & Hill, 1999). I have included morals, ethics, altruism,
religion, and spirituality within the existential domain. Although some hospice
professionals define the term spiritual as anything that brings meaning to ones
life, existential seemed a more appropriate domain label than spiritual. Some
participants spoke of the importance of love, of loving others, and of coming to
terms with ones place in the universe absent any discussion of a spiritual belief
system. People with strong spiritual belief systems often spoke of these issues, but
people without strong spiritual belief systems did too.
43


Based on significant statements from the interviews, I collapsed the original
30 meaning groups into the 4 domains discussed above; see Table 3.2 below.
1. Table 3.2: Meaning Groups and Domains Acceptance of impending death Existential
2. Choices and control Psychological
3. Continuity of care Psychological / Physical / Social
4. Dignity Existential
5. Existential comments Existential
6. Family Social
7. Family burden Social
8. Fear of dying Psychological
9. Fear of illness progression Psychological
10. Fear of the unknown future Psychological
11. Financial stress impact on family Social
12. Giving to others Social
13. Humor Existential
14. Loneliness Psychological / Existential
15. Loss of purpose Psychological / Existential
16. Mental vs. physical disability Physical / Existential
17. Motivation, history of surviving difficult times Psychological
18. Optimism Psychological / Existential
19. Other patients in the hospice Social
20. Personal responsibility for own situation Existential
21. Physical issues, including pain Physical
22. Prepare family for death Social
23. Prepare self for death Psychological / Existential
24. Priorities Existential
25. Relief of suffering All Four Domains
26. Social Social
27. Spiritual Existential
28. Suffering All Four Domains
29. Thankfulness Psychological / Existential
30. Time / Foreshadowing Existential
Physical Domain. The physical domain was characterized by four
symptoms: pain, difficulty breathing, loss of mobility, and incontinence.
Pain. Physical pain was the term most frequently described as suffering.
One woman said, I dont have any suffering, except for when someone touches
44


my skin, then it hurts like the devil. Another woman commented, I dont have
much to say about suffering, its mostly when I get pains across my stomach,
sometimes its worse than others. A third woman said Well, the ALS is not what
is painful, the polio is what hurts my back, and the ALS prevents me from moving
into a more comfortable position. Right now thats whats pushing my pain level
up to a 10 [out of 10]. These comments, associating physical pain and suffering,
were frequently made. Many people I interviewed associated physical pain with
suffering, regardless of whether or not they were personally experiencing physical
pain. Several times I asked about individuals experience of suffering and heard
the reply, Im not in any pain, they control that real well. More than once people
commented, I just dont want to admit that the pain is bad enough to need
medication. This indicated that in addition to the physical aspect of pain, issues
regarding choices and control were apparent. Such cases were noted in both
physical issues and choices and control meaning groups, and consequently,
both physical and psychological domains.
Lastly, some people noted extreme suffering with no physical pain. One
woman said:
I knew I had cancer, but that was all I knew. They were doing more tests
to figure out what kind it was, but they couldnt... Devastating was not
even close to what I was feeling. I guess my suffering, my physical
suffering, hadnt begun really. I was in no pain, I had no pain, just a little
bit of foot drop... But shortly thereafter, and I guess you could say that one
brought on the other, I started having a lot more physical symptoms.
45


So, while physical pain and suffering were often linked, people occasionally
differentiated between the two, commenting on the presence of either pain or
suffering in the absence of the other.
If someone were experiencing severe pain or shortness of breath, few would
be surprised if that was all the person could talk about regarding suffering.
However, few participants in this study reported experiencing such severe physical
symptoms. Most participants said that hospice was effective in alleviating those
symptoms. One may speculate, with most of these participants, that consideration
of social, psychological, or existential issues was possible. Yet, many people could
equate only physical symptoms, even minor ones, with the experience of suffering.
And, it didnt seem to matter whether or not someone was actually experiencing
pain several could only understand the term suffering in terms of physical pain.
Comments such as, suffering... I have had pain, but its controlled were
common.
Difficulty Breathing. Difficulty breathing was the only other physical
symptom people identified to be as distressing as pain. One person said, I just
want to die. I cant get any air. Another person noted, Breathing. Breathing is
the worst thing I have to go through. Im not in any pain... To me [breathing] is
suffering. People expressed concern about current difficulty breathing, but also
fear about the future specifically, waking up in the middle of the night due to
difficulty breathing. People expressed a high fear of suffocation. It was thus
46
I


common for people to fear two symptoms throughout the dying process: pain and
difficulty breathing.
Loss of Mobility. A third important physical symptom was loss of
mobility. My legs, I cant walk, I cant move my legs, they are paralyzed.
People who were unable to walk commented on how their decreased mobility
impacted issues from self-care (I cant walk over to the mirror and comb my hair)
to isolation (Id like to get out into the hallway. Meet people. Talk to people.).
People I interviewed had lost their mobility as a result of leg paralysis or of overall
weakness, but the concerns expressed were the same, regardless of why they had
lost the function of their legs.
Incontinence. The physical issue of incontinence was regularly raised.
Incontinence was a concern for two reasons: personal cleanliness and loss of
control over their body that mandated dependence on others for assistance. One
man I interviewed was admitted to inpatient hospice because his health was
declining rapidly and he expected to die soon something he was prepared for.
However, once admitted, his health stabilized and he was given a longer prognosis.
During the interview, he was extremely anxious about having a slower death than
expected as he was becoming incontinent and requiring assistance with using the
restroom. He identified this as a loss of dignity and said he just wanted to die
quickly, as he had planned to do at admission.
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In summary, for the domain of physical suffering, nearly everyone I
interviewed identified some kind of physical distress (and as noted earlier, many
people only identified physical distress), most of which could be alleviated by
medications. In support of this idea, several people responded to my question
what helps relieve suffering the way this woman did: Drugs, I really like the
drugs. They keep me from hurting. Or as this woman said, Pain pills, lots of
pain pills. One woman found relief of suffering through another medication -
wine. Wine helped alleviate her pain and decrease the trembling in her hands.
Certainly other physical issues were raised including weakness, lethargy,
having to take medications for any reason, lack of appetite, itching, and others;
however, the four physical symptoms detailed above were described as the most
influential regarding the experience of physical suffering.
It is important to note that while nearly all people included physical aspects
in their descriptions of suffering, those descriptions were not limited only to the
physical domain. Several people were able to differentiate other aspects of
suffering, which contributed to the formulation of the themes referenced above into
social, psychological, and existential domains.
Social Domain. The social domain was characterized most prominently by
family relationships from concern over being a burden to the family to receiving
tremendous support from the family. It was not uncommon for the same person to
experience both of these issues.
48


Family Burden. Terminally ill people do not know for certain how much
burden they / their illness put on family and friends but there is tremendous
suffering associated with the idea that they may be burdening others. One woman
said, Im in here for respite care, to give my children a break from taking care of
me all the time. Another woman said, My family has really gone out of their
way to do things for me. I feel bad to be such a burden on them... They cant do
things, go places, if they do then one of them has to stay home with me all the
time. One woman provided a unique example of this concern about burdening her
family. She has several medical complications; however, the one most likely to
lead to her death is a lethal buildup of ammonia in her blood. With medications,
though, that level can be somewhat stabilized. She continues:
I feel like my family has done the suffering. They have been trying to take
care of me for 2 14 years or so, and my friends. My husband got me into
here and he felt like finally he was going to have one less thing to do. He
wont have to (remind me to take my medications). Now that Im feeling
better, Im feeling like I want to go home. But my family is in a big turmoil
because they really dont want me to come home. My husband especially.
Thats where the suffering is, my family, Im just kind of contorting them, I
feel, to what I need... My husband is coaching for me not to have the
(medications that control the ammonia level in her blood) anymore. To me
thats scary... because then I know my brain will get fuzzy really fast, and
Ill have that toxic ammonia build up probably within a week. Then, truly
within a couple of weeks, I would be just absolutely miserable and not
know anybody.
In other words, this woman feels she cannot return home, even though she is
feeling better, due to the burden she would be on her family. Further, her husband
is urging her to stop taking her medications, which would lead to toxic levels of
49


ammonia in her blood, severe confusion, and eventually her death. Regardless of
her husbands rationale for his advice, it certainly put this woman in a very
uncomfortable position.
In contrast, the support of family and friends often contributed to the relief
of suffering. One man couldnt think of anything that relieved his suffering. His
wife chimed in, Weve had a lot of family visit, and thats helped. (The
participant) has really enjoyed their company while hes been in hospice. Hes
enjoyed that, as much as you can enjoy... its been a blessing to him. Others
contribute similar experiences. I have six children and theyve all been taking
turns taking care of me. They have all came and rallied around. Theyve really
done well, they are wonderful kids. I am fortunate. One man said Im not afraid
of death, it doesnt bother me a bit. Ive got family and friends to take care of me, I
suspect Im OK. Another man said, It helps to know that a lot of people love me
and that I have a lot of friends and relatives who are in support of me. Thats a real
comfort to me.
Participants interviewed often commented on their suffering within this
domain with ambivalence: familial and friends' support was linked with the level of
burden they perceived they were putting on their loved ones.
Psychological Domain. The psychological domain is characterized by four
factors: fear of the unknown, loss of control and purpose, loneliness, and optimism.
50


Fear of the Unknown. Most of the people I interviewed were uneasy about,
or in fear of, the future. When asked to describe her suffering, one woman
responded:
Its scary thinking about it, because you dont know whats ahead...
Because you dont know how long you have to live. It might go fast or it
might go slow. I know Im going to die of this liver cancer, or so Ive been
told, but it is scary. And you dont know whats ahead, whats waiting for
you out there, whats on the other side.
She expressed fear for her future both before she dies and after her death. I had a
clear sense that many people struggled with a fear of what will happen to their
bodies physically before (and as) they die. Some people I interviewed were nearly
paralyzed by this fear of the future. One woman commented, Im just so
frightened. I just dont know where I stand. You just dont know where youre
going to be or whats going to happen. Many people expressed fears regarding
what would happen after death along the lines of no one knows for sure what
happens after you die. Not everyone I interviewed was fearful of the future. The
majority of people who were not fearful of the future had a strong spiritual faith.
They firmly believed in God and Heaven. One man said, Well, like I said, Im not
afraid to die at all. Ive got my perspective, in that its not quite as scary as it
would have been if I didnt have any faith [in God]. I think it would be horrible if I
didnt have faith, if I didnt know where I was going. A woman noted, I think
the Lord will be there when Im ready. Either Im not ready or hes not ready, one
51


or the other. On the other hand, one woman I interviewed was not fearful of the
future after she died and did not claim a strong spiritual faith. She commented,
I am totally at peace knowing that I will not live forever and at some point
it will be my time to pass on. I am very content and it doesnt bother me at
all. I know the reasons that I will be glad there is no memory after that,
theres no thought, theres no pain, and its going to be a rather pleasant
experience.
This particular woman explained that her expectations were based on a near death
experience she had as a child. What she remembers of that experience, combined
with the strength she has gained from surviving that and other challenging
experiences brought her much contentment with her expectations of the future.
Loss of Control and Purpose. Loss of control and loss of purpose were
areas of uncertainty associated with suffering. People expressed deep concerns
regarding losing control of their bodily functions (incontinence and/or mobility, as
described above), their ability to rehabilitate, their memory, and the circumstances
surrounding how they die. Loss of purpose was expressed in an interesting way
during one interview. A man offered me some advice, saying, never retire.
When I asked why, he commented that upon retirement he lost his purpose in life,
became depressed, started drinking alcohol again, and his entire life continued to
deteriorate from there. For this man, when he lost his purpose in life (his job), he
rapidly lost everything else containing importance and meaning.
Loneliness. Several people commented on being lonely. Some people were
isolated. One woman noted, When youre alone and at home, and theres not
52


much of anything going on, you get to thinking, and oh, maybe giving up. Some
people were lonely as a result of being confined to their room due to paralysis. One
woman said, Id like to get out into the hallway. Meet people. Talk to people.
And some people were lonely because people stopped visiting. Another woman
said, Well, Ive been in a depression here the last couple weeks. I get so lonely.
There are so few people willing to visit. Thats the main thing, and Im not used to
that. Im used to having someone around all the time. Loneliness was an
important component of suffering for many of the people I interviewed.
Optimism. Perhaps surprisingly, people expressed humor and thankfulness
during the interview, and often their last comments were also encouraging. Several
people found reasons to laugh during the interview. One woman with ALS was
talking about the humiliation of being rigged into a Hoyer lift to move her to the
shower or commode. In the midst of describing this personal embarrassment, she
paused and commented, All staff members should have to be lifted in the Hoyer
lift, and they should have to do it without clothes. Clothes protect the skin and I do
not have that advantage. I think they would have a different attitude when using
it. She began laughing as she pictured this new form of staff training. One
woman laughed as she said the following:
Being positive helps reduce suffering. I could have been a crazy, wild
woman running around having pity parties and feeling sorry for myself the
last few times of my life. Or I can go around being excited, running up
credit card bills, and having fun. And Ive chosen to have fun. Theres
53


nothing I can do to change this. So, Im going to be obnoxious and have
fun.
The same woman noted that she has to be careful about how much she jokes with
friends.
Well, Ive had this cancer since 94, so Ive had a long time to get used to
the idea of dying. And my friends around me have not gotten used to the
idea of me dying. So, I end up comforting them a lot. Because I can joke
about it, and have fun with it, and they cant. So I have to be careful with
them.
Others used laughing for reasons other than humor. One woman said,
I dont know, in a way, youre scared to die too. Its kind of scary to die.
But I just have to put it up here [in her head] and tell myself its coming, but
I hope its not too soon. Not too soon. (Laughs.) ... I still try to block it
out. To try to think of something else and just keep thinking about
something else, to try to block it completely out. I can do that sometimes if
its not real, real bad, I can just block it out. I think Im going to go back on
morphine again, I would like that. (Laughs)
Perhaps in these cases, people are using humor as a defense mechanism to protect
themselves from the actual severity of what they are trying to say. This, of course,
is also an appropriate use of humor. When people used humor, it seemed to be a
healthy coping mechanism either designed to enrich their own life, to help others
around them in some way, or to protect them from a severe reality. Interestingly,
nearly all of the people who expressed humor (5 of 6) also described their
experiences of suffering using multiple domains.
People expressed thankfulness, even gratitude, in unexpected ways. Ill
refer again to the woman with ALS. Her mobility was limited to wiggling one
54


finger on her left hand, talking, and blinking. Yet at one point she commented on
being thankful. I asked what she was thankful for, and she smiled and responded
Im thankful I can talk. She did not focus on her limitations, but rather whatever
she was able to continue doing. She also expressed thankfulness for continued life
and still being able to love others. At one point she noted, Im more thankful
because I realize how blessed I am quite a statement given the severity of her
physical condition.
The final area of optimism has to do with peoples attitudes toward
participating in these interviews. Although the purpose of this study is to
understand suffering so we can better alleviate it, one still must be cognizant that I
was walking into peoples rooms and asking them to discuss a potentially
distressing topic their personal experiences of suffering at the end of life. While
typing the transcripts, I noted affective dimensions of the interview that would not
be captured by words laughing, crying, etc. I also began to give attention to
the final comments people made on tape. I would usually conclude my comments
with thank you very much for participating in this interview. Several times
people responded you are very welcome. However, oftentimes people said,
thank you and I hope I helped. One person even responded that was fun.
Given the nature of the discussion, I found it interesting that people expressed
appreciation for the opportunity to discuss their suffering.
55


There are probably many reasons for optimism, including: bringing a sense
of closure to some of these issues by being able to talk about them; a sense of being
able to help others even when they are in a vulnerable position; the opportunity to
discuss this sensitive issue with a safe person; and having someone to talk with,
regardless of the topic. Whatever the reason, I found it interesting that many
people were willing to participate in this interview and by the conclusion of it were
thankful for the opportunity to discuss their suffering.
Existential Domain. Five areas characterize the existential domain: single
or multi-dimensional processing, acceptance, spirituality, terminal illness as a gift,
and re-prioritization.
Single or Multi-Dimensional Processing. As briefly noted above, several of
the first people interviewed equated suffering with physical pain only. I asked each
person to describe for me every aspect of suffering they have experienced at the
end of life. Each of them told me about specific physical symptoms that they had
been experiencing: throbbing pain in the leg, difficulty breathing, aching back, etc.
Even when I specifically asked participants if they had experienced suffering in
areas such as family or spirituality or emotions, none of the initial participants
understood or described suffering as occurring in those areas. I was surprised, to
say the least, that these initial participants did not view suffering to occur in
domains beyond physical pain. Other participants identified suffering primarily in
relation to their families they were causing their families to suffer, for example. I
56


began to identify this group of participants as people who described a single-
dimensional aspect of suffering (i.e., focusing on only one aspect of suffering,
without regard to what aspect they focused on).
Several other participants interviewed, however, made a distinction between
pain and suffering. On several occasions people asked me to clarify what kind of
suffering I was asking about physical suffering or emotional suffering. I
responded that I wanted to learn about their complete experience of suffering.
Without any prompting, these participants discussed how suffering affected them in
several different ways physical issues, how having a terminal diagnosis impacted
social relationships, etc. I began to identify this group of participants as people
who described multi-dimensional aspects of suffering.
The purpose of this study was not to statistically compare groups of
participants. However, given this natural dichotomy of single versus multi-
dimensional aspects of suffering, I compared these two groups of people in terms
of age and various lengths of stay. The single-dimensional versus the multi-
dimensional groups appeared similar in terms of age, sex, and the number of days
between admission and interview, interview and discharge, and admission and
discharge.
On a concluding note regarding the discussion of single versus multi-
dimensional processing of suffering at the end of life, I considered 16 of the 25
interviews (64%) to be single-dimensional and 9 of the 25 interviews (36%) to be
57


multi-dimensional interviews. However, the purpose of this study is to identify
underlying, universal domains present in people suffering at the end of life, not to
segregate this small sample of interviews into separate groups the purpose to
which I now return.
Acceptance. There was a wide range in how people accepted their
impending death. Some people seemed to accept their impending deaths. They
knew they were going to die (soon), and were content with that. One woman said,
I cant give you any further responses except to tell you that I am completely at
peace knowing that it is time for me to go, pass, on life. I dont expect miracles. I
dont anticipate anything too different. And Im very content with it. Another
said, Im 81 years old. Ive realized for a long time that I am not immortal.
Somethings going to get me. I never know what, or where, or when, and Im
prepared. Another said,
At first I was very depressed and upset, but its kind of faded away once
you get used to whats going to happen. You know, you just gradually get
used to it... Ive gotten used to it because Ive decided Ive had a pretty
nice life. Im pretty content. I mean I dont want to go away and leave my
children, not by any stretch of the imagination. But there comes a point
when you have to realize that you just have to do what you have to do.
Theres no backing away from all this stuff.
Others resisted the idea that they were going to die (soon). One man said,
Everyone has a problem. My problem is simply I came in here (hospice)
when they couldnt figure out what else to do with me and they figure that
Im going to die. Well I dont feel that way. I dont think Im going to die
here. I dont care if I do, but I may not. Im a survivor.
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Of note, he was admitted to hospice one month prior to our interview and was
discharged home one month following our interview. As noted in Appendix F,
only 2 of the 25 participants interviewed were discharged alive this man was one
of them. Interestingly, participants tended to see other patients as being worse off
than they were. One person commented, One of the other patients here came in
with the same thing I had, but he was a lot worse.
Two participants interviewed seemed to have foreshadowed the
circumstances of their death. Several participants made isolated comments about
dying someday, but only two of them seemed to have an idea of what their futures
held. One woman, toward the end of a philosophical discussion, paused and then
commented rather abruptly:
So, my level of suffering is less at an emotional level than it is at a
physical level. And although they are both intense, neither one of them are
unbearable for me. I can say that now, a month from now I may not be able
to say it, but right now I can say it and mean it.
This was an isolated comment that she never referred to anywhere else during the
interview. The tone of her voice suggested, wait a minute, this just might
happen. About one month after our interview this woman began to experience
intractable, unrelenting physical pain and died soon thereafter (per hospice staff).
The philosophical conversations we had earlier probably would have had no
meaning to her in her last weeks of life. This level of pain was neither predicted
59


nor necessarily expected prior to her death; however, she sensed that it might be a
possible outcome for her. Unfortunately, she was right.
One man I interviewed also seemed to foreshadow the circumstances of his
death. Earlier in this paper I commented on this man, who was deteriorating upon
admission to hospice and expected to die soon. Once in hospice, however, he
began to stabilize. He became concerned about a chronic, long-lasting course of
illness when he had anticipated and preferred a quick death. He said:
Well, Im really not suffering a lot right now. I just got into the hospice
about a week ago. I havent experienced a lot of pain. Mostly mental right
now, as far as I know that Im dying. I have cancer throughout my chest
area and so I know that its just a matter of time before Im going to die of
it. The question is how long is it going to take and hows it going to
progress. Theres some fear as to Id like to get it over with quickly, of
course. But its a long... Im sure its going to be a long drawn out thing.
Mostly right now what Im experiencing is weakening of my limbs and my
body and a lack of appetite, so that I dont want to eat anything, so I cant
keep up my strength. Its kind of a cycle. I cant eat enough so I get
weaker, and I get weaker so I cant eat enough. Im scared to lose function
of my body that Im in control of. You cant get up anymore from the bed
without assistance, you cant go to the bathroom without assistance. And
thats kind of a scary thing. But as far as pain and suffering, my physical
pain and suffering is kind of low. Its mostly the mental, going through the
process of weakening, of weakness.
Throughout the interview this man continued to return to issues surrounding loss of
dignity associated with dependence on others, wanting a quick death rather than a
more drawn out one, and concerns that he was not dying fast enough. Interestingly,
this man died one week after our interview achieving the quick death that he
desired.
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Spirituality. Spiritual beliefs and practices were often noted as providing
relief from suffering. Occasionally people discussed their faith as being helpful in
their current situation. One woman said,
I just know that every time I woke up it hurt and I was just sitting there
praying for it (that the pain would dissipate). I believe in prayer. Im not a
religious fanatic, but I do believe in God Almighty. I pray a lot. Hes
guided me all through my life, as far as I can see. Ive been in some tough
places and hes brought me through.
Another person said, My faith helps me to face pain easier. I think I can not be so
hostile toward people who are trying to help me or toward situations of going
through the dying process. A woman said, Im not afraid of dying, Im a
Christian, I know where Im going. Another woman said, I just hope I go to
heaven. Hope I havent been a bad person. When I go through the pearly gates.
A man said, I think it would have been horrible if I didnt have faith, if I didnt
know where I was going. It surprised me that most people focused their spiritual
thoughts on the afterlife heaven rather than focusing on support through their
current situation. I spoke with the founder of a Denver hospice, who is also a
priest, about this focus. He said that in his experience, many spiritual people near
the end of life are psychologically more prepared to shed this mortal body and
mostly find comfort in looking forward to heaven (at least those who believe in
heaven).
Terminal Illness as a Gift. Those who chose to delve into the existential
realm raised several interesting points worth noting. Several people referred to
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their terminal illness as a gift, although only three women specifically used the
word gift. One woman had several thoughts about why her terminal illness was a
gift:
It is a gift that I have been given. And I treasure it, even though its
probably one of the most difficult gifts Ive ever had to receive... Its a
matter of knowing that the place that youre at is the place that you ought to
be. If youre not happy in that place, then theres something else you need
to do to make it be the way you want it to be. I know what love is.. .its
more a matter that I care about you so much that I want to give you my love
and I want you to be able to receive it. We have to find ways to get it in
there, to help them understand how important they are to us. The suffering
in life allows me to appreciate lifes joy. My illness is a gift for me because
I learned something so important about my life that I cant even imagine not
knowing it. Its understanding that not all suffering is pain, and not all
suffering is the need to have that pain. But that all suffering is just another
experience in your life and you have to find what treasure there is in it, what
pleasure there is in it. Its there, you just have to find it. The love part is so
important to the illness and to the pain and suffering. Its all so important to
that, that I cant imagine going through this without knowing that pain,
without knowing that suffering. Its so integrated now into my thinking, I
cant separate the two...
A woman with ALS described her illness as a gift in this way:
My illness is a gift in many ways. One is having the time to be with
people, to develop relationships. I do not take my relationships for granted.
During the illness Ive been able to develop new friendships and realize that
Ive been blessed. Ive deepened many existing relationships with family
and friends that already existed all of my life.
A third woman described her illness as follows:
I think with my illness it allows me to be free to think positive thoughts. I
do believe that Ive gotten to be a much nicer and more positive person in
the last 2 Zi years since this started. The old cliche stop and smell the
flowers is so true. Unfortunately people that work 40, 50, 60 hours per
week cant necessarily do that. But Ive been given a gift where I can do
that.
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These three women specifically used the word gift to describe their terminal
illness, and all of them associated this gift with a better understanding of love and
the importance of loving others. Other people I interviewed described aspects of
their illness for which they were thankful. One woman commented that her illness
had been like a gift that she had received through the generosity and love others
have shown her. It shows me how wonderful people can be, she said. I like how
one man expressed this thankfulness, Life is good, people are good, but work and
little things cloud our vision.
Re-Prioritization. Although a few people I interviewed expressed
contentment with their current situation, most people I spoke with had at least one
thing they would like to re-prioritize. One man summed up the comments of many
others when he said:
Youre not looking toward material things, they arent as important
anymore. You look at the commotion and see these commercials, and who
cares about getting a new car now? Its not what you strive for. You strive
for good relationships with your family and friends and your God and all
those people who are important to you. Because those are the things that
will last and that youll be remembered for... Working, of course, was
important. Providing for my family was important. Of course right now
Im not working at all, so I dont have to worry about that, but it was
important. Maybe more important than it should have been... Theres
nothing permanent, youre not going to take anything with you when you
leave, except for leaving behind people that you love. And they are the
ones who are going to remember you.
Others added how re-prioritization affected their lives: saying, I love you more
often, decreasing the importance of daily work, and increasing the importance of
63


giving to others. Perhaps a fine line should delineate differences between re-
prioritization and regret. Re-prioritization refers to reflecting on the past in order to
actively make changes in the present. An example of re-prioritization would be
realizing an overemphasis placed on daily work in the past, and therefore changing
current behavior by focusing on important relationships. Regret refers to the
experience of disappointment when passively reflecting on the past.
Interestingly, participants described a dynamic tension between the four
domains. When people described their experiences of suffering at the end of life
using more than one domain (i.e., multi-dimensional processing), they often spoke
of one domain influencing another. The participants in this study identified
patterns where one domain influenced another. Participants tied together physical,
social, psychological, and existential themes when answering a question. For
example, one woman described her suffering like this:
I wish that didnt pain so much (wincing from her leg pain), but you cant
do anything about it and I cant do anything about it, so Ill have a little bit
more wine I think (laughs)... Well, I think I could explain that I am totally
at peace knowing that I will not live forever and at some point it will be my
turn to pass on. I am very content, it doesnt bother me at all. I know the
reasons that I will be glad there is no memory after that, theres no thought,
theres no pain, and its going to be a rather pleasant experience. I did,
when I was 15, had typhoid fever and was desperately ill for 6 weeks.
Very, very high fever, a very difficult time. And at that time I told my
mother that I had passed over and knew what it was like on the other side.
She was a little startled. I told her its beautiful, its like a great big garden
[participant is an avid gardener], and I shall be very happy to go there
someday. So Ive always had that in my mind. A very happy way to think
about it.
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This woman wove physical (leg pain), psychological (contentment), and existential
(at peace with future expectations) aspects of her suffering together. Later in the
interview she commented on the social domain, noting that her friends, husband,
and son were important sources of support for her.
An overview of the data analysis is contained in Table 3.3.
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Table 3.3: Summary of Data Analysis
A.
B.
C.
Horizonalization Review of transcripts for all significant, unique
statements
Meaning Groups Creation of 30 categories
Domains Focusing the 30 categories into 4 larger domains
1. Physical Domain
Pain
Difficulty Breathing
Loss of Mobility
Incontinence
2. Social Domain
The Sense of Being a Burden on Ones Family
Family / Social Support
3. Psychological Domain
Fear of the Unknown
Loss of Control
Loss of Purpose
Loneliness
Optimism
Humor
Thankfulness
Last Comment
4. Existential Domain
Single or Multi-dimensional Process
Preparation for Death
Foreshadowing
Spiritual beliefs
Terminal Illness as a Gift
Re-prioritization
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Synthesis of the Essence
The analysis of this phenomenological qualitative research study, so far, has
been reductionist focusing transcriptions of 25 interviews down to the meaning
groups listed in Table 3.1, and focusing the meaning groups down to the four
domains noted above in Table 3.3.
The next step in a phenomenological inquiry is to synthesize this
information into the essence. The essence is found by searching the data analyzed
above for central, underlying, universal meanings regarding the experience of
suffering at the end of life. Rather than reducing the data (analysis), the essence
unifies and describes experiences common to all participants (synthesis). The
summary contained in Table 3.4 accurately describes the experience of suffering at
the end of life based on these interviews.
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Table 3.4: Essence Describing Suffering At The End Of Life
This phenomenological research study reveals that participants
frequently report suffering at the end of life and can describe those
experiences. Their suffering can be described in terms of four domains:
physical, social, psychological, and existential. The physical domain was
referred to most often and includes pain, difficulty breathing, etc. The social
domain includes concern over being a burden on the family and recognition of
family support. The psychological domain includes fear of the unknown, loss
of control, optimism, etc. The existential domain includes single or multi-
dimensional descriptions of suffering, preparation for death, spiritual beliefs,
etc.
Participants most often described their suffering in terms of one domain.
When this occurred, they referred to either the physical or the social domain.
Participants occasionally described their suffering using multiple
domains. If descriptions of suffering included psychological or existential
domains, then all four domains were discussed during the interview.
When participants described their suffering using multiple domains,
they reported a dynamic tension between the domains. Distress (or solace) in
one domain impacted levels of distress (or solace) in the other domains.
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Verification
I
The majority of Chapter 3 is devoted to the methods of data analysis
consistent with a phenomenological qualitative research study interviews,
transcriptions, horizonalization of significant statements, analysis of common
themes, clustering themes into meaning groups, and finally synthesizing the
meaning groups into universal domains. It is appropriate at this point to discuss
issues of verification.
Interviews were conducted consistently, beginning with an open-ended
question asking the participant to describe their experience of suffering at the end
of life. Some participants completely answered this question with little prompting
from me. Other participants preferred additional, specific questions to help them
answer this first general question. In either case, any additional questions I posed
were designed to build on the participants previous responses. At the conclusion
of each interview, I asked if it would be helpful for me to return at a later date to
continue the conversation. Participants typically did not find this to be necessary.
I believe that any qualitative (or quantitative) research study can yield
multiple reasonable interpretations of the data. The important consideration with
the various interpretations offered is that they are indeed reasonable, i.e., derived
from and consistent with the data. One of the dissertation committee members (Dr.
Gaydos) examined all of the study transcripts and initial data analysis steps. Upon
69
I


review of these materials, she agreed that the results were based on and consistent
with the original data.
It is possible to trace contents from the four domains back to the meaning
groups, and further back directly to specific participant quotes in the transcripts.
Appendix G an example of the horizonalization table is included for two
reasons first, to provide an example of how I proceeded with the data analysis;
and second, to provide an example of how one could take the results and trace
backward to specific interviews. Complete tables and notes are available
documenting the entire data analysis process. I chose not to include them in their
entirety to preserve the confidentiality of participants.
Chapter 4 will discuss, compare, and contrast this essence with various
existent theories and the relevant literature, as well as make recommendations for
future research.
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CHAPTER 4
DISCUSSION
In retrospect, it is not surprising that I arrived at these four domains (physical,
social, psychological, and existential) to describe the experience of suffering at the
end of life. Both the medical literature and some extant theory (particularly holistic
philosophy) consider the body (physical), relationships (social), mind
(psychological), and the spiritual (existential) to be important domains of individual
experience. Chapter 4 addresses these issues and is divided into 3 sections: review
of the literature, review of extant theory, and additional research areas to consider.
Review of the Literature
The literature will be reviewed according to the following topics: suffering
and the loss of personhood, the frequency of suffering at the end of life, and the
good death.
Suffering and the Loss of Personhood
Brief definitions of suffering are discussed and bracketed in Chapter 2.
These definitions began to address the relationship between suffering and the loss
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of personhood. The works of Cassell and Byock on suffering and loss of
personhood will be explored in greater depth here and their data and interpretations
compared to the findings of the current study.
Cassell. Cassell examines suffering within the medical care context. He
says that ultimately suffering is a personal matter sometimes people report
suffering for no apparent reason, other times suffering would be expected yet it is
not reported. According to Cassell, suffering can be associated with any perceived
threat to the integrity of personhood. This means that suffering can result from real
threats to personhood (e.g., nausea) or perceived threats (e.g., I dont know if I can
tolerate any more nausea), both internal to the person (the nausea affects me) or
external (a loved one with severe nausea). Personhood involves all aspects of
living: character; the past; the future; life history; relationships with family, friends,
and others; culture; societal roles; political status; physical bodies; and transcendent
dimensions. Because personhood is complex, suffering is complex. Further, the
point is made that suffering would not occur if one had no concern for the future.
Cassell examines Cartesian dualism the historical separation of the physical body
from the spiritual and psychological and concludes that this is an ineffective
division of personhood if the goal is to relieve suffering. He notes that due to this
philosophical separation of personhood, physicians may successfully cure the body
while doing things that actually increase suffering for the person (Cassell, 1982;
Cassell, 1991).
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The current study identifies four domains that consolidate the numerous
aspects of personhood Cassell details (e.g., character is contained within the
psychological domain; and larger constructs such as culture and political status are
contained in overlapping social and psychological domains). Supporting Cassells
theory that suffering is caused by loss of personhood, participants in my study
identified examples of suffering in nearly all of his proposed aspects of
personhood. However, Cassell seems to imply that all (perhaps many) people
identify suffering in these various aspects of personhood. The current study found
a dichotomy between participants who primarily identified one aspect of suffering
(single-dimensional) versus those who integrated multiple aspects of suffering
(multi-dimensional). The majority of participants in the current study tended to
focus on and discuss a single aspect of suffering rather than reflecting on and
discussing aspects of suffering spanning multiple domains. Cassell focused on how
distress threatening at least one aspect of personhood may result in suffering.
However, he only briefly discussed how distress in one area of personhood could
affect other areas. Participants in the current study who described suffering in
multiple domains also discussed how suffering in one domain could increase (or
decease) suffering experienced in other areas of their lives.
Bvock. Byock takes Cassells work on suffering within medicine and
applies it specifically to the end of life. Byock asserts that if Cassells model of
suffering is true that suffering may occur when a threat to the integrity of
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personhood is perceived then the end of life experience should be fraught with
suffering, as nothing could threaten personhood more than death. However, he
goes on to say:
A survey of the personal experience of dying must confront the clinical
observation that some people emerge from the depths of suffering and the
virtual disintegration of the person they once were to report a sense of
wellness as they are dying. While seasoned geriatricians and hospice
providers confirm the existence of such seemingly paradoxical
transformations, the frequency of these experiences is not known. Here
again, systematic clinical studies are lacking and we must learn what we can
from empiric observation and anecdote (Byock, 1996, p. 244).
He goes on to give four examples of good deaths (the notion of a good death is
detailed below) and to describe a set of developmental landmarks that may assist
people in achieving a sense of readiness as they approach death (p. 247).
According to Byock, there is a paradox regarding suffering at the end of
life. He argues that although dying is a threat to personhood and should result in
suffering, some people grow in the midst of dying (p. 251). The current study
concurs that suffering is often reported at the end of life. It also is consistent with
the idea that some people describe growth in the midst of dying. Some of the
participants who described their experience of suffering using the existential
domain described personal growth (e.g., the importance of loving others more or
I learned something so important about my life that I cant even imagine not
knowing it...). However, the current study also found that many people who
described their suffering focused on a single-dimension, did not value it as a
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learning experience, and were not striving toward or achieving growth. Byock
allows room in his view for people to decide which areas in which to grow, but
there is little room for people who apparently decide not to grow. Interestingly,
this latter group was more heavily represented in the current study.
The Frequency of Suffering
Nearly all participants interviewed (96%) were able to identify and describe
their experiences of suffering. Only one participant (4%) reported no suffering. A
similar percentage of hospice residents (10%) refused study participation due to the
absence of suffering. This study also asked participants to rate their current level of
suffering using a 0-10 scale where 0 represented no suffering and 10 represented
extreme suffering. Responses for this suffering score ranged from 0-10 with a
mean score of 5.1.
Baines and Norlander (2000) conducted a study specifically examining the
relationship between terminally ill participants rating of pain and their rating of
suffering in three categories: physical, spiritual, and personal or family. They
created a suffering assessment tool that was administered to 92 hospice patients by
trained hospice staff within the first two hospice visits. Pain was rated on a 0-10
scale where 0 represented no pain and 10 represented pain as bad as you can
imagine. Suffering was rated on 0-10 scales with 0 representing no suffering and
10 representing extreme suffering. Eighty-five participants (92%) reported a level
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of suffering ranging from mild to severe; only 7 people (8%) reported no suffering.
Baines & Norlander found a mean suffering score of 3.97, with patients reporting
higher levels of suffering than of pain. They also noted that patients reported
suffering, even though they were not having pain, or conversely reported minimal
suffering, even though they were experiencing severe pain (p. 325).
The current study is consistent with Baines study. Similar percentages of
participants reported suffering (96% and 92%, respectively) and mean suffering
scores were similar (5.1 / 3.97). Interestingly, the report of suffering and the mean
suffering scores were similar despite Baines data collection near hospice
admission and my data collection mid-way through hospice stay (data collection at
a mean of 58 days following admission; see Appendix F). The current study also
supports Baines finding that participants are able to differentiate between pain and
suffering as distinct entities, although fewer participants made that distinction in
the current study. This could be due, in part, to Baines' stated intent of separating
pain from suffering and his offering up of domains for suffering. The present study
permitted subjects to define suffering in whatever manner was relevant to them
personally.
Chapter 1 referred to a study of psychosocial / spiritual issues in hospice
patients that I was affiliated with. In that study, 82 participants were asked if they
were currently suffering. Participants could respond in 1 of 3 ways: agree, neutral,
or disagree. Preliminary findings indicate that 22% of the participants agreed with
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this statement, drastically less than the current study (96%) or Baines study (92%).
This difference is perhaps due to available response categories. Participants who
indicated neutral or disagree to the question I am currently suffering might
have indicated a suffering score above 0 given the opportunity to respond on a 0-10
scale. Perhaps this is more an illustration of response category sensitivity than
significant differences in the frequency of suffering being reported.
In summary, little information is available that quantifies the frequency or
severity of suffering at the end of life. Information that is available suggests that
suffering at the end of life is common.
The Good Death
Hospice professionals often refer to persons having good deaths. I want
to give two examples of good deaths from the literature, examine definitions of
good deaths, and compare them to the findings of this study.
The book The Denial of Death begins with an interesting Foreword,
having nothing directly to do with hospice yet illustrative of a good death. The
author of the piece was a Psychology Today reporter who was granted an interview
with Ernest Becker during the last week of Beckers life. He wrote:
Although we had never met, Ernest and I fell immediately into deep
conversation. The nearness of his death and the severe limits of his energy
stripped away the impulse to chatter. We talked about death in the face of
death; about evil in the presence of cancer. At the end of the day Ernest had
no more energy, so there was no more time. We lingered awkwardly for a
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few minutes, because saying goodbye for the last time is hard and we
both knew he would not live to see our conversation in print...
That day a quarter of a century ago was a pivotal event in shaping
my relationship to the mystery of my death and, therefore, my life. I will
carry for a lifetime the images of Ernests courage, his clarity purchased at
the cost of enduring pain, and the manner in which his passion for ideas
held death at bay for a season. It is a privilege to have witnessed such a
man in the heroic agony of his dying (Becker, 1973, p. ix).
Becker found it important to face death heroically and discussed several aspects
of suffering (i.e., domains) with the reporter.
A second example of a good death is contained in Baubys The Diving
Bell and the Butterfly. He writes the following from his hospital bed:
Up until then (following his accident), I had never even heard of the
brain stem. Ive since learned that it is an essential component of our
internal computer, the inseparable link between the brain and the spinal
cord. I was brutally introduced to this vital piece of anatomy when a
cerebrovascular accident took my brain stem out of action. In the past, it
was known as a massive stroke, and you simply died. But improved
resuscitation techniques have now prolonged and refined the agony. You
survive, but you survive with what is so aptly known as locked-in
syndrome. Paralyzed from head to toe, the patient, his mind intact, is
imprisoned inside his own body, unable to speak or move. In my case,
blinking my left eyelid is my only means of communication... My diving
bell (body) becomes less oppressive, and my mind takes flight like a
butterfly (Bauby, 1997, pp. 4-5).
Bauby, passionate to communicate his experience of locked-in syndrome,
formulated this entire book in his mind. He then blinked his left eyelid when an
assistant read the letter (of the word, of the sentence, of the paragraph, of the
chapter, etc.) that he was thinking of. Bauby had an intense desire to communicate
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his end-of-life experiences. He died two days after the French publication of his
book.
Becker and Bauby provide examples that illustrate that meaning and growth
can take place in the midst of dying. This is similar to the third bracketed statement
from Chapter 2, that at the onset of this study I had an expectation that many people
would communicate experiences like these during this study an expectation that
needed to be set aside. These kinds of examples are sprinkled through the literature
to illustrate the power and magnitude of the good death.
A popular book by Webb, titled The Good Death, describes a good death:
Those deaths that seem good often have these things in common: Excessive
treatment treatment that extends the process of dying longer than a patient
wants it extended is not given; pain and other disquieting or humiliating
symptoms are managed aggressively and well; the dying person is granted
as much decision-making power as he or she wants; emotional issues are
addressed; and the patient, his family, and his friends get all the
psychological, spiritual, and physical help they need (Webb, 1997, pp. 28-
29).
This definition implies that several people are involved in a good death in
addition to the dying person the health care team, family, and friends. Whether
or not these additional peoples perspectives should be included in the definition of
a good death is another intriguing question. Webbs definition, however, does
address the domains identified in this study: physical (excessive treatment, pain,
symptoms), social (family and friends), psychological (decision-making power,
emotional issues, psychological help), and existential (spiritual help).
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Steinhauser, Clipp, McNeilly, Christakis, McEntire, and Tulsky (2000)
conducted focus groups with health care professionals, patients, and bereaved
family members to identify characteristics of a good death. They identified the
following six major components of a good death each containing physical, social,
psychological, and existential components (p. 827):
1. Pain and symptom management: for both current and future symptoms;
2. Clear decision making: patients desired clear communication with their
health care treatment team;
3. Preparation for death: patients usually wanted to know what they could
expect during the course of their illness and wanted to plan for the
events that would follow their deaths;
4. Completion: includes not only faith issues but also life review, resolving
conflicts, spending time with family and friends, and saying good-bye;
5. Contributing to others: several groups mentioned the importance of
allowing the terminally ill persons to contribute to the well being of
others.
6. Affirmation of the whole person: participants repeatedly declared the
importance of affirming the patient as a unique and whole person not
a disease.
Clearly these findings overlap with the 4 domains identified in the current study.
In addition to the title of Webbs book, consider the titles of these other
books: Dying Well: Peace and possibilities at the end of life. Death Be Not Proud,
and Dignity and Dying: A Christian appraisal (Byock, 1997; Gunther, 1949; Kilner,
Miller, & Pellegrino, 1996). Each of these books, while containing excellent
material, promote a cultural ideal for the end-of-life experience a good death
that includes finding meaning, peace, joy, growth, etc.
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Two questions should be asked when reviewing the material supporting a
good death. First, do people achieve good deaths? From the participants I
interviewed, I would consider those who described their suffering using multiple
dimensions well on their way to good deaths. They were trying to make progress
in areas consistent with a good death life closure, finding meaning in their life
through death, etc. Perhaps participants who described suffering only in one
domain chose not to discuss the other domains, or perhaps they had not
thoughtfully considered these other domains. (Of course, perhaps those
participants had already come to terms in all of these areas, except the area
discussed.) However, it was the multi-dimensional interviews that were most
similar to examples often described in the hospice literature as good deaths
(Albom, 1997; Bartholome, 1999; Bauby, 1997; Bedard, 1999; Byock, 1996;
Byock, 1997; McCurley & Weitzman, 1995; McDowell, 1998; Webb, 1997; Willig
& Bundy, 2001).
The second question regarding a good death is, does hospice help people
achieve good deaths? Interestingly, while the literature exemplifies the good
death, it is silent regarding how many people actually strive toward or complete a
good death. If any statements are made, they are vague (e.g., a surprising
number of participants... or some...). Byock states that dying well can be
understood in terms of the subjective experience of personal growth, embodying a
sense of renewed (and at times enhanced) meaning and a sense of completion, at
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times even fulfillment in life (Byock, 1996, p. 251). He implies that this occurs
often. Indeed, the literature appears to be biased and leads the readers to believe
that good deaths occur with most people at the end of their lives.
As noted above, several participants usually those who described
suffering in multi-dimensional terms paralleled examples found in the literature
described as good deaths. However, no distinctions between single versus multi-
dimensional descriptions of suffering are found in the literature. The literature
offers numerous examples of good deaths, rare examples of horrible deaths,
and no examples of mediocre deaths. If my notion that participants who
described suffering in multiple domains are striving toward good deaths is
correct, then that accounts for only 1/3 of this small sample. Since I can only
assume that other hospice researchers have encountered the same phenomenon, i.e.
that most hospice patients have a single-dimensional view concerning the cause and
alleviation of suffering, I wonder why this issue has not been mentioned in
previous literature.
Further, the literature is silent regarding how to provide the most effective
service at the end of life for people who apparently are not pursuing what hospice
professionals term the good death. Kapp makes an interesting argument in the
article The Right to Die Mad (2000). After listing several movements aimed at
improving end-of-life care, he describes a good death in similar terms as listed
above. He then asks, What if that is not the way I want to die? What if, rather
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than making harmonious amends with those whom I have conflicts, I want to tell
them what I honestly think of them? He says:
A personally defined successful dying may take many forms, and that those
patients who choose to resist professional efforts to implore growth,
forgiveness, and personal fulfillment at the end of life should not be labeled
- before or after death as failures (Kapp, 2000, p. 11).
How would hospice provide services to Kapp? Would he even be admitted to
hospice? Would he be labeled a non-compliant patient and discharged? Perhaps
Kapp wouldnt seek hospice services in the first place. However, he raises two
interesting points. First, by labeling some deaths good or successful, then
other deaths must be bad or failures. Perhaps health care professionals can fail
a patient, but the patient should never be considered a failure for not dying
according to a cultural expectation. Second, he raises the question of who defines a
good death is it the dying person, health care professionals, or someone else?
Is it possible for a dying person to have a successful dying process and death, while
falling short of the expectations of health care providers? Or, perhaps more
importantly, could the opposite occur?
I am not being critical of hospice services; in fact, conducting this study in
the hospice setting has deepened my respect for such organizations and the people
who work for them. However, the literature is promoting a standard for dying
without specifically addressing how many patients adhere to this outcome, how
successfully hospice services meet this standard, how improvements can be made
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or measured, or how they can effectively serve people who hold a different goal for
dying. Further, findings from this study suggest that the standard is not often met.
Review of Extant Theory
Phenomenological studies are not designed to generate theoretical models.
However, results of phenomenological studies may support or counter previously
articulated theories. This discussion will review several theories related to
suffering at the end of life and compare them with findings from the current study.
Saunders Total Pain
Twaddle discusses the goal of hospice care in terms of managing total
pain, a concept developed by Dame Cicely Saunders (cited in Kilner et al., 1996,
pp. 183-190). Total pain, according to Saunders, was composed of the physical
aspects of disease, but as importantly, of the psychological, social, and spiritual
dimensions of pain (p. 185). This model was developed based on Saunders
clinical experience. Figure 4.1 models the concept of total pain (p. 185):
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Figure 4.1: Total Pain Model
Physical Well-Being and Associated Svmotoms Psychological Well-Being
Functional ability Anxiety
Strength/fatigue Depression
Sleep/rest Enjoyment/pleasure
Nausea Pain/distress
Appetite Happiness
Constipation Fear Cognition
N Pain /
X
Social Well-Being Spiritual Well-Being
Caregiver burden Suffering
Roles and relationships Meaning of pain
Affection/sexual function Appearance Religiosity
Participants in the current study identified and described domains similar to
Saunders model. Of minor note, based on results of the current study described in
Chapter 3,1 would update Saunders model slightly. I would use the term
suffering rather than Saunders construct total pain, because the word pain is
so closely associated with only the physical domain. Also, although they refer to
similar domains, existential better represented the data from my interviews than
the spiritual domain outlined by Saunders (see Chapter 3). Saunders model is a
clinical tool, identifying multiple sources of suffering. The current study examined
suffering from the participants (rather than the clinicians) perspective, and two
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factors bear reiteration. First, while some participants described all of these
domains (the multi-dimensional interviews), many participants described their
experience of suffering using only one of the above domains. Second, those who
described multiple dimensions of suffering, as listed in the domains above, also
described interaction (dynamic tension) between the domains. Saunders model is
a useful tool, and perhaps findings from this study provide unique insights
regarding how to use this tool effectively.
Kiibler-Ross Stages of Grief
One probably cannot write about any end-of-life experience, including
suffering, without at least briefly commenting on Kiibler-Rosss On Death and
Dying (1969). Just as Cassell initiated conversations about suffering in the medical
world in 1982, Kiibler-Ross initiated conversations about dying with the medical
world (and in fact, the entire world) in 1969. The work of Cassell probably could
not have occurred without Kiibler-Ross (along with Saunders and others),
beginning public discussions regarding death and dying. Kiibler-Ross is most well
known for developing her five stages of grief denial and isolation, anger,
bargaining, depression, and acceptance. A common critique of Kiibler-Rosss
stages is the linear fashion in which they were originally presented implying that
people move from stage one to stage two, etc. Participants in the current study
described each of these stages. For example, the man who said I dont want to
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talk about suffering or end-of-life issues get the hell out of my room! may have
been experiencing denial, isolation, anger, and/or depression perhaps several of
these simultaneously. Regarding acceptance, many people indicated acceptance of
their impending death, as noted in Chapter 3. Interestingly, when participants
described their experiences of suffering in terms of Kiibler-Ross stages of grief,
they described the stages occurring somewhat randomly, and on occasion, with two
or more stages occurring simultaneously.
Dildy Phases of Change
Dildy (1996) conducted a study similar to the current study, except with
people suffering from rheumatoid arthritis. She interviewed fourteen people
initially asking, Tell me about your own personal suffering, with planned probing
questions to solicit additional information if needed. She used grounded theory to
identify and describe the nature, meaning, and impact of suffering from the
perspective of people with rheumatoid arthritis. Her study found that people
experience a change process consisting of three phases (p. 178-179):
1. Disintegration of personhood: characterized by the realization that
something was terribly wrong, that things are not what they used to be;
2. Dealing with the shattered self: characterized by pain, mental anguish,
feeling locked-in the body, and exhaustion;
3. The reconstruction of self: characterized by rebuilding the self, getting a
new mindset, diminishing personal suffering, overcoming hopelessness,
and accepting.
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There is a sense in which the people I interviewed experienced these three phases
of the change process. However, the realization of a terminal illness, rather than a
chronic medical condition, presented a new challenge to the last phase -
reconstruction of self. Those with chronic conditions are challenged with
rebuilding ones sense of self with the addition of a disease. People with a terminal
illness are challenged with this same task, with the added burden of doing so within
a limited time frame i.e., prior to death.
Feminist Theory
Another theoretical model with overlapping interests is feminist theory.
The majority of participants in the current study were women. This might help
explain why particular descriptive language was used. For example, both men and
women described positive growth as a result of their suffering; however, only
women described this in terms of being a gift. Also, women tended to prioritize
relationships more than men did, perhaps influencing the number of comments
directed toward the social domain. This use of descriptive language and the
importance of relationships are both consistent with feminist theory (Benner &
Hill, 1999; Routledge, 2000).
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Wilber Consciousness Psychology
Wilber, in Integral Psychology, describes a holistic approach to psychology.
He groups the psychological developmental processes into four basic levels of
consciousness: body, mind, soul, and spirit (2000). As is conventional in
psychology, Wilbers work is focused on individual development. Wilber goes on
to describe two dozen additional dimensions which influence the human experience
- e.g., interpersonal, moral, cognitive, etc. Wilbers work, although identifying
more specific dimensions of human experience, is consistent with the four domains
I isolated from the meaning groups in this study.
Maslow Hierarchy of Needs
Maslow was a psychologist who heavily contributed to the theoretical
development of humanistic psychology. His theory of personality focuses on
peoples motivations for action, based on their perceived needs. To summarize
Maslows theory, he created a Hierarchy of Needs rank ordering peoples needs
starting from basic to survival to higher-order needs leading to self-actualization
(Corey, 1991; Feist, 1985). A model of Maslows Hierarchy of Needs is contained
in Figure 4.2.
89