[Paleopsych] JGIM: Motivations for Physician-assisted Suicide: Patient and Family Voices

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Motivations for Physician-assisted Suicide: Patient and Family Voices
Journal of General Internal Medicine
Volume 20 Issue 3 Page 234  - March 2005
doi:10.1111/j.1525-1497.2005.40225.x

Robert A. Pearlman, MD, MPH 1,2,3,4,5 , Clarissa Hsu, PhD 6 , Helene
Starks, MPH 4 , Anthony L. Back, MD 1,2,3 , Judith R. Gordon, PhD 7 ,
Ashok J. Bharucha, MD 8 , Barbara A. Koenig, PhD 9 and Margaret P.
Battin, PhD 10

Objective: To obtain detailed narrative accounts of patients'
motivations for pursuing physician-assisted suicide (PAS).

Design: Longitudinal case studies.

Participants: Sixty individuals discussed 35 cases. Participants were
recruited through advocacy organizations that counsel individuals
interested in PAS, as well as hospices and grief counselors.

Setting: Participants' homes.

Measurements And Results: We conducted a content analysis of 159
semistructured interviews with patients and their family members, and
family members of deceased patients, to characterize the issues
associated with pursuit of PAS. Most patients deliberated about PAS over
considerable lengths of time with repeated assessments of the benefits
and burdens of their current experience. Most patients were motivated to
engage in PAS due to illness-related experiences (e.g., fatigue,
functional losses), a loss of their sense of self, and fears about the
future. None of the patients were acutely depressed when planning PAS.

Conclusions: Patients in this study engaged in PAS after a deliberative
and thoughtful process. These motivating issues point to the importance
of a broad approach in responding to a patient's request for PAS. The
factors that motivate PAS can serve as an outline of issues to explore
with patients about the far-reaching effects of illness, including the
quality of the dying experience. The factors also identify challenges
for quality palliative care: assessing patients holistically, conducting
repeated assessments of patients' concerns over time, and tailoring care
accordingly.

The motivation to pursue physician-assisted suicide (PAS) has been an
important issue in the debates regarding the legality and appropriate
response to requests for PAS. Understanding the motivation is critically
important to physicians because many of them have been asked for
assistance in PAS. 1 [-] 3 Previously described explanations include
inadequate treatment for pain or other symptoms (i.e., inadequate
palliative care), 1 [-] 7 psychiatric problems (e.g., depression,
hopelessness), 7 [-] 13 and concerns about losses (e.g., function,
control, sense of community, sense of self). 5,6,14 [-] 17

However, these explanations are principally based on three sources of
evidence: physicians' impressions, patients' reports of hypothetical
circumstances under which they would consider PAS, and survey data from
Oregon. There is limited direct reporting from patients and family
members about what drives patients to pursue PAS.

To address the current gaps in our understanding, we conducted a
longitudinal qualitative study with patients who seriously pursued PAS,
and their family members. This study expands the medical and ethics
literature on end-of-life care by providing a detailed descriptive
account of the pursuit of PAS from the perspective of patients and their
family members.

Participants

A detailed account of the recruitment and methods is described
elsewhere. 18 Briefly, we recruited patients who were seriously pursuing
PAS and their family members (ongoing cases), as well as family members
of persons who had seriously pursued and/or died of PAS (historical
cases). We recruited participants through advocacy organizations that
counsel people interested in a hastened death (see Table 1 for
definitions), hospices, and grief counselors. The referral sources sent
information to their clients and/or verbally informed them about the
study. All participants voluntarily contacted us. Patients were screened
for decisional incapacity, which, if found, would have precipitated a
series of actions to protect the patient. Specifically, we looked for
evidence that would suggest that pursuit of a hastened death was
motivated by a psychiatric disorder (e.g., severe depression,
delusions).

To protect respondents' confidentiality, we destroyed all records with
personal identifiers and removed identifying information from
transcripts. All study procedures were reviewed and approved by the
university's Institutional Review Board.

Data Collection

We conducted qualitative, semistructured interviews with patients and
family members. Five investigators conducted interviews; for each
family, the same investigator interviewed all members. In total, we
conducted 159 interviews with 60 participants concerning 35 patients
between April 1997 and March 2001. Patients and family members for
ongoing cases were interviewed at enrollment and at approximately
3-month intervals until the patient's death. Family members of deceased
patients (ongoing and historical cases) were interviewed on average 2.4
times.

The interview guide included open-ended questions about the history of
the illness, the reasons for and other factors influencing the pursuit
of a hastened death, and the manner of death. Additional details of the
interview are presented elsewhere. 18 To enhance trustworthiness of the
data, all interviews were audiotaped and transcribed. In addition, all
members of the multidisciplinary research team read the transcripts in
their entirety, discussed them at weekly meetings, and generated
follow-up questions for the interviewer, when appropriate.

Analyses

These results are based on multiple readings of the entire transcripts.
Using content analysis methods, 19 the team developed primary codes,
such as reasons for a hastened death and catalytic factors , to classify
sections of the transcripts. The interviewer and another investigator
independently coded all transcripts and met to resolve coding
disagreements. Significant coding discrepancies were discussed and
resolved at weekly team meetings.

For each case, two investigators (R.A.P. and C.H.) independently reread
the relevant sections of the transcripts, and identified the apparent
motivations for the patients' pursuit of a hastened death. Respondents
frequently volunteered motivations in the context of their stories, and
when they did not, the interviewers specifically probed for explanations
of their interest in hastening their death. These two investigators
developed detailed memos for each patient, rating the relative
importance of each identified issue based on the context of the
patient's overall story and the emphasis given to the issues in the
narrative (see Table 3 footnote for a description of the rating
process). In the cases with both patient and family member interviews (n
=12) and the 5 historical cases with multiple family members, we found
that respondents reported similar issues. Thus, our judgments of
importance were informed by these multiple reports.

The two internists (R.A.P. and A.L.B.) independently reviewed the
narratives of the 25 patients who hastened their death to estimate each
patient's life expectancy at the time of death. They concurred in their
assessments for 23 of the 25 cases, and after discussion resolved the
two disagreements. The psychiatrist (A.J.B.) reviewed the transcripts
for evidence of major depression and formulated a psychiatric profile
for each case. 20 The interview guide did not include a depression
questionnaire due to concerns that this would decrease subject
participation. A more detailed description of this review is reported
elsewhere. 20

Participant Characteristics

We studied 35 cases of patients who pursued a hastened death (Table 2).
These participants are described in detail elsewhere. 18,20 In brief,
all patients were white, over half were married or living with a
partner, and nearly half were widowed or divorced. Approximately one
third of the participants were Protestant, 17% reported no religious
preference, and 16% reported being atheist. Two thirds of the patients
drew strength from their spiritual beliefs; the remainder did not
consider spirituality in their deliberations about hastening their
death. Nineteen patients had received disease-modifying treatment or
attempts at curative treatment earlier in the course of their illnesses.

While all patients seriously pursued a hastened death, 17 patients
self-administered medications, 8 patients were too ill so family members
administered the medications, and 1 patient used a shotgun after he was
unable to obtain medications. Eight patients died of their underlying
illness and 1 patient was alive at the study's conclusion.

Motivating Issues

Our analysis identified 7 common influential issues within 3 categories:
illness-related experiences, changes in the person's sense of self, and
fears about the future (Table 3). The case in Table 4 illustrates how
these issues evolve and interact over time.
Illness-related Experiences.

Feeling weak, tired, and uncomfortable. In 24 cases, physical changes
and symptoms were judged by the investigators as influential in the
individual's pursuit of hastened death. Many different symptoms became
unacceptable (e.g., shortness of breath, fatigue, diarrhea). The effects
of medications and treatments also were an issue. One respondent
reported that his partner, who had severe thrush due to AIDS, lost 3
days each week to Amphotericin B, which was "horrible for him." Another
patient described her response to steroids:

The side effects of the treatment are unacceptable [...] the Prednisone
destroys you. For example, it destroys your muscles. My thighs are so
weak I can't get up from the floor, and I don't have the energy to
exercise. The whole thing is a vicious circle. [...] My face [...] looks
like a melon. [...] I look like a frog in heat. (Case 23)

The participants' symptoms often shared several qualities: they caused
suffering, were expected to get worse, interfered with the patient's
functioning and quality of life, and contributed to undermining the
person's identity and sense of self. As one woman with ovarian cancer
stated, " [...] the terrible weakness and the nausea and just not
feeling like you can do anything. [...] And it's kind of like goals that
I actually have or things that I want to accomplish are slowly being
taken away [...] it's kind of like the realm of the possible [...] is
shrinking" (Case 2).

Pain and/or unacceptable side effects of pain medications. Pain, judged
to be influential in 14 cases, functioned as a motivation in several
ways: it could be unbearable, preoccupying, or consuming. One patient
reported,

The pain could happen immediately or it could happen an hour or two
later. And then I have to see about seeing [my provider] again. It is a
treadmill that I'm on; I can't get off of it, and I've had it. And I
can't live like this anymore. (Case 30)

In addition, a few patients worried about the unacceptable,
mind-altering effects of pain medications. A woman with cancer
explained,

Well, the pain that I had before with the rheumatoid arthritis I knew
that I could handle [-] . [...] But this pain that I have, I'm not sure
[-] I can't get rid of it with the pain medicine always. [...] To give
me enough to keep that pain under control, they'd have to put me out,
and I don't want my son to have to take care of a bed patient. (Case 6)

Loss of function. For two thirds of our participants, loss of function,
ranging from losing the ability to read the newspaper or socialize with
friends to the inability to eat and go to the bathroom, motivated
patients' interest in a hastened death. These losses were inextricably
intertwined with these patients' physical changes.

Patients and their families viewed functional losses as markers of the
patient's transition from life to death. A number of patients viewed the
onset of incontinence or the inability to get to the bathroom as a
sentinel event in their decision-making process. A daughter described
her mother's experience stating,

She was totally bedridden. She was messing her sheets and stuff like
this, and Mother just [-] I mean, she's just [-] she was a very
fastidious person. And she just [-] she [-] well, basically, she thought
the quality of her life was appalling. She couldn't do anything. All she
could do was lie in bed. (Case 26)

Many patients accommodated over time to functional losses. Eventually,
however, the losses became too great. As one family member explained,

[My husband had] let go of so many things along the way and kind of made
do. [He'd say], "Okay, well, now I can't walk anymore. Well, I sure like
being on this couch." Then he lost something else [...] . But when he
could no longer take in fluids, I think that really kind of pissed him
off, because he had just been saying, "God, I'm so glad I have this
Gatorade. This is the best. This is keeping me alive." [...] I think he
couldn't find any more pleasure. (Case 21)

One woman's account exemplifies how these losses affected her mother's
sense of self and attitudes about dying: "The things that were
meaningful to [my mother] in her life were her art, her ability to do
her art and her friends, and spending time with her friends and cooking
and eating. And she was [...] very convinced that when she couldn't do
any of those things anymore, her life would be meaningless, and she
wouldn't want to live anymore" (Case 7).
Sense of Self.

Loss of sense of self. Almost two thirds of participants pursued a
hastened death because they were concerned about how dying was eroding
their sense of self. Patients expressed concern about losing their
personality, "source of identity," or "essence." Without the ability to
maintain aspects of their life that defined them as individuals, life
lost its meaning and personal dignity was jeopardized. "I'm not
comfortable, and I can't do anything, so as far as I'm concerned in
quality of life I'm not living; I'm existing as a dependent non-person.
I've lost, in effect, my essence" (Case 23). One family member explained
that her mother realized that "she was going to lose significant ability
to be the person she was" (Case 1). The partner of a patient with AIDS
stated:

He didn't want to kill himself; he didn't want to die. It was about
finding any method to be vital and the list was narrowed down to the
most [-] the simplest things, and when they were gone, he didn't have a
reason [...] . So it wasn't just the diarrhea or the lack of driving; it
was just losing, like, his definition [-] what his sense of vitality
was. And when that was gone, then he was ready. (Case 19)

Several patients mentioned that they did not want to be remembered as
ill and frail. One patient reported, " [...] not wanting to be seen by
those that love me as this skin-and-bone frail, demented person. In
other words, I don't want that image of me for me, and I don't want that
image to be kind of a last image that my daughters and loved ones have
of me. And that's just a dignity issue" (Case 4).

For some, being cared for and losing independence was an assault on
their sense of self. For these individuals, sense of self was closely
linked to their desire for control. One daughter described her mother's
reaction to her favorite hospice nurse's care for a fecal impaction:

The nurse was over there, basically, manually helping her along. [...]
And she just said, "This is not worth it." [...] And a lot [had] to do
with her as a person where she just was so independent. The whole idea
of nursing to her was just abhorrent. (Case 34)

Desire for control. In 21 cases, the patient's desire for a hastened
death was linked to a long-standing sense of independence and desire to
maintain control over future events. One family member described her
mother as "an extraordinarily independent person, absolutely needing to
be in control of her life all the time and already felt [-] how shall I
put it [-] she had problems with feeling not in control" (Case 7).
Another woman with lung cancer described her attitude toward hastened
death as,

I will do things my way and the hell with everything and everybody else.
Nobody is going to talk me in or out of a darn thing [...] what will be,
will be; but what will be, will be done my way. I will always be in
control. (Case 3)
Fears About the Future.

Fears about future quality of life and dying. While many motivational
issues were based on current experiences, another common motivation was
fear about the future. We judged this as influential in 21 cases. Such
concerns were often affected by past experiences. For example, one
patient's fears about pain and pain management were rooted in her past
experience with pain due to a lifetime of severe arthritis. She told us,
"I don't want to get to the place where I'm rum-dummy with morphine,
because I almost reached that spot [...] and I couldn't even make out a
check" (Case 6).

Fears were usually associated with other motivating issues, such as loss
of control, physical and functional decline, becoming a burden on family
(noted to be influential in 3 cases), and loss of one's sense of self.
However, what separated the fears from the other issues was their
anticipatory nature. As one family member stated, "He said that he
doesn't want to just turn into this vegetable kind of person where
you're not aware of what's going on, and that everybody around you is
affected; everybody's having to take care of you, feed you, clean you,
give your medication" (Case 4). Often these fears pertained to lingering
or prolonging death through the use of medical technologies. One family
reported, "Living there and existing for three, four, five, six months.
Living with tubes coming out of every orifice [...] that's what
frightened her" (Case 14).

Negative past experiences with dying. In half the cases, negative
personal experiences with the death of a loved one added to patients'
interest in hastened death. One patient reported the following reaction
to his mother's dying experience:

[T]here's no question about wanting to make provisions for a hastened
death should conditions become so unbearable. I want to spare my family
as much of that grief as I can [...] . [My mother] died of cancer, and
we were constantly frustrated by not being able to do anything for her.
[...] And just watched her waste away. And what a terrible way to go.
(Case 24)
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Our data suggest that the pursuit of a hastened death was motivated by
multiple, interactive factors in the context of progressive, serious
illness. These patients considered a hastened death over prolonged
periods of time and repeatedly assessed the benefits and burdens of
living versus dying. None of the participants cited responding to bad
news, such as the diagnosis of cancer, or a depressed mood as
motivations for interest in hastened death. Lack of access to health
care and lack of palliative care also were not mentioned as issues of
concern. These findings are comparable to those reported in Oregon. 6,16

This report emphasizes the importance of 3 general sets of issues: the
effects of illness (e.g., physical changes, symptoms, functional
losses), the patient's sense of self (e.g., loss of sense of self,
desire for control), and fears about the future. The cases also
illustrate that pain is often not the most salient motivating factor.
Thus, this report corroborates and expands known findings.
2,5,6,15,16,21 [-] 23 This research adds to the literature by providing
rich descriptions from patients and family members about interactions
between these issues and the meaning that patients ascribe to current
and/or anticipated illness experiences.

Many participants identified the effects of the illness on two very
personal attributes that often give life meaning: a person's desire for
control and sense of self. When the effects of the illness and/or
treatment attack these deeply personal values, a hastened death is
viewed as a means to stop this process and minimize the damage. These
feelings have been reported among patients with AIDS. 17,24

The influence of some of the issues in this study differed from previous
reports. For example, while the effect of pain on patients' decisions to
hasten death has been widely discussed, our participants mentioned pain
much less frequently than they mentioned the loss of meaningful
activities and physical functioning. 4,25 Similarly, burden on family
was influential in only 3 cases, although this may reflect that family
members were the reporters for two thirds of our cases. 2,15,21

Depression and hopelessness have been suggested as causal factors in the
pursuit of a hastened death 7 [-] 13 because they often precede suicide
attempts among patients who are not terminally ill, 26 and studies of
depressed patients with HIV and cancer have documented interest in PAS.
9,11,27 [-] 30 Depression and hopelessness were not significant issues
for our sample, although fears about future quality of life and dying
may reflect hopelessness when it is understood to mean negative
expectancies about the future and one's ability to change it. In the 3
patients with possible depression, their interest in a hastened death
preceded any alteration in mood, and thus, in our judgment, their
possible depression did not impinge on decisional capacity.

Importantly, other forms of psychological suffering motivated the
patients in this study toward a hastened death. They experienced severe
losses (e.g., bodily integrity, functioning, control) as existential
suffering that undermined their personal sense of who they were. 31 This
loss of sense of self (often described in terms of a loss of vitality,
essence, personal definition) highlights the threats of dying to the
social construction of life's meaning. 32 This may be especially salient
among individuals living in a secular culture.

Two minor differences between the ongoing and historical cases are
noteworthy. Patients seeking a hastened death more frequently expressed
their fears and expressed their ongoing deliberations about decisions.
Family members presented more of a complete story about the patients'
illness. These differences are not surprising based on the different
vantage points of the participants. Overall, however, similar issues
were reported, lending support to the validity of the motivating issues
we identified.

The results should be viewed in the context of the study's limitations.
Our participants were a highly self-selected group: they were recruited
from advocacy organizations that counsel patients interested in PAS and
agreed to participate. Thus, these patients may not be representative of
others who pursue a hastened death. In addition, depression may be
underrepresented because 1) depressed patients may volunteer less for
research, 2) our indirect, informal assessment may have been
insufficient, and 3) depression may have served as an exclusion by the
advocacy organizations for providing support.

Several important implications for clinicians emerge from these cases.
First, the dynamic and interactive nature of the motivations challenges
health care providers to understand the holistic illness and dying
experience of patients. These data confirm the recommendation, espoused
in high-quality palliative care, that providers repeatedly assess the
patient's concerns about losses and dying in order to understand and
tailor end-of-life care to the patient's changing personal experience. 4
Second, the motivating issues can serve as an outline of topics for
talking to patients about the far-reaching effects of illness, including
the quality of the dying experience. Clinicians should explore a
patient's fears, and how the patient sees herself in light of current
and future physical decline and functional losses. 33 A patient's
request for assistance with a hastened death should generate a thorough
evaluation of the patient's motives and attempts at ameliorating the
patient's suffering.


We especially wish to thank the participants. The Greenwall Foundation
and the Walter and Elise Haas Fund provided funding for this research.
The Veterans Health Administration (VHA) and the Health Services
Research and Development Service of the Department of Veterans Affairs
provided additional support. Kathleen Foley, Ezekiel Emanuel, and Susan
Block gave valuable guidance and/or feedback on earlier drafts. Drs.
Pearlman, Back, and Koenig were Faculty Scholars in the Project on Death
in America (PDIA) of the Open Society Institute. The views expressed in
this article are those of the authors and do not necessarily represent
the views of the funding sources, Department of Veterans Affairs,
Project on Death in America, University of Washington, University of
Pittsburgh, or persons mentioned above.

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32.    Kaufman SR. The Ageless Self: Sources of Meaning in Late Life.
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34.    Pearlman RA, Starks H. Why do people seek physician-assisted
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Footnotes

None of the authors has any financial or other conflicts of interest
with respect to this work.

This manuscript was presented in part at the 24th annual meeting of the
Society of General Internal Medicine, May 2001.

Journal of General Internal Medicine
Volume 20 Issue 3 Page 234  - March 2005
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Authors:
Robert A. Pearlman
Clarissa Hsu
Helene Starks
Anthony L. Back
Judith R. Gordon
Ashok J. Bharucha
Barbara A. Koenig
Margaret P. Battin

Key Words:
physician-assisted suicide
euthanasia
decision making
end-of-life issues
qualitative research

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Accepted for publication August 6, 2004

Affiliations

1VA Puget Sound Health Care System, Seattle Division, Seattle, WA, USA;
2Departments of Medicine, 3Medical History and Ethics, and 4Health
Services, University of Washington, Seattle, WA, USA; 5National Center
for Ethics in Health Care (VHA), Washington, DC, USA; 6Departments of
Anthropology and 7Psychology, University of Washington, Seattle, WA,
USA; 8Department of Psychiatry, University of Pittsburgh, Pittsburgh,
PA, USA; 9Center for Biomedical Ethics, Stanford University, Stanford,
CA, USA; 10Department of Philosophy, University of Utah, Salt Lake City,
UT, USA.

Correspondence
Address correspondence and requests for reprints to Dr. Pearlman: VA
Puget Sound Health Care System, 1660 S. Columbian Way (S-182-GRECC),
Seattle, WA 98108 (e-mail: Robert.Pearlman at med.va.gov).

None of the authors has any financial or other conflicts of interest
with respect to this work.

This manuscript was presented in part at the 24th annual meeting of the
Society of General Internal Medicine, May 2001.

Image Previews

Table 1.  Definitions

Table 2.  Patient Characteristics

Table 3.  Motivating Issues for Pursuing a Hastened Death *

Table 4. Illustrative Case Demonstrating Dynamic and Interactive
Motivations for Pursuing a Hastened ...