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Clinician-Patient Interactions About Requests for Physician-Assisted Suicide
A Patient and Family View
Anthony L. Back, MD;
Helene Starks, MPH;
Clarissa Hsu, PhD;
Judith R. Gordon, PhD;
Ashok Bharucha, MD;
Robert A. Pearlman, MD, MPH
Arch Intern Med. 2002;162:1257-1265.
ABSTRACT
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Background Responding effectively to a patient request for physician-assisted suicide
(PAS) is an important clinical skill that involves careful evaluation. Clinician
responses to PAS requests, however, have only been described using data obtained
from clinicians.
Objective To describe qualities of clinician-patient interactions about requests
for PAS that were valued by patients and their family members.
Participants and Methods Intensive qualitative case study involving multiple longitudinal interviews
conducted prospectively with patients pursuing PAS and with their family members
and retrospectively with family members of deceased patients who seriously
pursued PAS. The study setting was community based. Participants were recruited
through patient advocacy organizations, hospices, and grief counselors. A
total of 35 cases were studied: 12 were prospective and 23 were retrospective.
Study procedures involved semistructured interviews that were audiotaped,
transcribed, reviewed, and analyzed by a multidisciplinary research team.
Results Three themes were identified that describe qualities of clinician-patient
interactions that were valued by patients and family members: (1) openness
to discussions about PAS; (2) clinician expertise in dealing with the dying
process; and (3) maintenance of a therapeutic clinician-patient relationship,
even when clinician and patient disagree about PAS.
Conclusions These patient and family accounts reveal missed opportunities for clinicians
to engage in therapeutic relationships, including discussions about PAS, dying,
and end-of-life care. Clinicians responding to patients requesting PAS need
communication skills enabling them to discuss PAS and dying openly, as well
as expertise in setting reasonable expectations, individualizing pain control,
and providing accurate information about the lethal potential of medications.
INTRODUCTION
FOR PHYSICIANS and other clinicians who care for patients with life-threatening
illnesses, responding to a patient's request for physician-assisted suicide
(PAS) is an important clinical skill. Although Oregon is the only state to
have legalized PAS, patients in every state report that they think about PAS,
and physicians in every state discuss PAS.1
In a national survey involving 988 terminally ill patients, 60% of patients
supported PAS in a hypothetical situation, and 10% had seriously considered
PAS for themselves.2 In physician surveys,
18% to 24% of primary care physicians and 46% to 57% of oncologists stated
that they have received a request for PAS.3-5
When a patient asks for PAS, how should a clinician respond? Experts
agree that an initial clinical response should include the following: the
clinician should ask why the patient is interested in PAS, explore the meanings
underlying the request, assess whether palliative care is adequate (especially
in addressing depression), and revise the care plan to respond to the patient's
concerns.6-11
Since PAS requests may not persist, these initial clinical responses are extremely
important. Beyond the initial response, however, there is controversy about
whether clinicians should disclose their own moral beliefs about PAS, offer
sedation for refractory symptoms or intolerable suffering, or provide a prescription
for PAS in a state where it is illegal.12-15
Although expert recommendations for responding to PAS requests presume
that clinicians possess communication skills and palliative care expertise,
little empirical research has been conducted to identify exactly what skills
and expertise are required.7-9,11
Previous surveys of physicians suggest that the most prominent concerns for
patients considering PAS are nonphysical concerns about dying, such as loss
of control and loss of dignity.3, 16
Yet a qualitative study of physicians who dealt with PAS requests indicated
that physicians felt least competent in addressing existential suffering.17 Judging by these studies in the medical literature
and anecdotes in the lay press,18-20
it appears that the nonphysical concerns about dying that prompt patients
to consider PAS are issues that many physicians feel poorly equipped to address.
We conducted an intensive qualitative interview study with patients
who seriously pursued PAS and with their family members. The primary study
objectives were to describe the reasons that the patient was pursuing PAS,
the narrative of events leading to death, and interactions with physicians
and other clinicians. This article reports our findings about interactions
with clinicians. We asked our participants to describe their conversations
with their physicians and other medical clinicians about PAS. From these data,
we identified themes that describe qualities of clinician-patient interactions
about PAS that patients and family members valued. In describing what patients
and family members valued when discussing PAS, we hope to provide guidance
for clinicians faced with these difficult conversations, regardless of their
willingness to provide PAS or its legal status.
PARTICIPANTS AND METHODS
DESIGN
A qualitative design was chosen for this study because of the lack of
empirical data describing how clinicians respond to requests for PAS. We used
semistructured interviews to yield data that we analyzed and developed into
a description of important qualities of clinician-patient communication about
PAS from the perspectives of patients and their family members.
SAMPLE
The sampling frame for this study included patients and family members
who were actively seeking information and access to PAS because we wanted
to describe the process of planning and implementing PAS. This sample includes
a self-selected group of patients and family members who sought out advocacy
organizations that specifically help patients organize a PAS. Therefore, the
sample is limited to those patients and their families who were engaged in
assessing PAS as a concrete option for determining the timing and circumstances
of their death.
We focused on 2 groups of participants: (1) a prospective cohort of
patients who were currently pursuing PAS (and their family members); and (2)
a retrospective cohort of family members who had been involved with a patient
pursuing PAS. Based on other qualitative studies, we estimated that about
30 families would provide enough data such that additional data would fail
to contribute further to explaining the phenomena being studied, a condition
called theoretical saturation. Our sample size of
35 families was not intended to be a comprehensive view of all patients seeking
PAS, but it was adequate to describe this particular group of patients and
family members. Thirty of the 35 cases occurred in a state where PAS is illegal.
PARTICIPANT RECRUITMENT AND INFORMED CONSENT
We asked intermediate sources such as patient advocacy organizations
that counsel persons interested in PAS, hospices, and grief counselors to
introduce our study to potential participants. Our intermediate sources gave
detailed written information statements describing the study to prospective
patients with life-threatening illnesses (and their family members) who expressed
a serious interest in PAS and were attempting to obtain medications for PAS.
Our definition of family member included unmarried
partners and close friends. We also asked our sources to mail information
statements to family members who had been involved in PAS. These information
statements asked potential participants to call our office if they wished
to participate or ask questions about the study. One investigator (H.S.) spoke
with each potential participant to explain study procedures, answer questions,
obtain verbal informed consent, enroll participants, and collect demographic
data.
To protect the confidentiality of our participants, no written consent
forms or any other forms with identifying data were maintained by the investigators.
The detailed information statements described the purpose of the study, interview
procedures, and participants' right to refuse to answer questions or to withdraw
from the study at any time. Prospective patients had to have an ongoing relationship
with a case manager and medical care providers to be eligible for the study.
Subjects in the prospective cohort were informed verbally and in the written
information statement that if interviewers identified a serious medical or
psychiatric issue that was not being addressed, or if a psychiatric issue
was causing decisional incapacity, investigators would inform the patient's
case manager and we would discontinue interviews with the patient and his
or her family. These issues were discussed with participants in detail, and
informed consent was obtained verbally before each interview. Also, the interview
guide for prospective patients contained a statement assuring patients that
we were interested in their concerns and decision-making processes and would
continue to follow them regardless of whether or not they ultimately decided
to pursue PAS. Study procedures were reviewed and approved by the Institutional
Review Board of the University of Washington, Seattle.
DATA COLLECTION
We conducted multiple qualitative, semistructured interviews with patients
and family members. Five investigators conducted interviews, and the same
investigator interviewed all participating members of a family. The prospective
cases included interviews with 12 patients and 20 family members. The retrospective
cases included interviews with 28 family members concerning 23 patients. In
total, we conducted 159 interviews with 60 participants about 35 families
(12 prospective and 23 retrospective), resulting in 3613 pages of transcripts.
The interview guide included questions about (1) patient and family interactions
with health care providers regarding PAS requests, (2) how these requests
were evaluated, and (3) the provider's involvement with PAS implementation.
We asked participants to provide details about the manner of death and any
complications of a PAS attempt. We also asked family members to describe their
personal reactions to the PAS request and subsequent events. Other topics
were covered but are not included in this analysis.
CODING AND ANALYTIC METHODS
All interviews were audiotaped and transcribed, with identifying data
deleted. Each case was discussed at weekly meetings by the multidisciplinary
research team, representing medical oncology, palliative care, health services,
psychology, anthropology, psychiatry, geriatrics, and bioethics. The analytic
approach was based on grounded theory, which involves open coding (a process
of examining, comparing, conceptualizing, and categorizing data), followed
by axial coding (a process of reassembling data into groupings based on relationships
discovered in the data) and, finally, selective coding (a process of identifying
and describing central phenomena in the data).
We coded patients' and family members' first-hand accounts of interactions
with clinicians, and did not code hearsay accounts. Examples of primary codes
include "reasons for pursuing PAS," "interactions with health care providers,"
and "planning for death." The interviewer and another investigator independently
coded all transcripts, compared coding, and resolved disagreements in coding.
Significant coding discrepancies were discussed at the weekly team meeting.
Axial coding involved all sections of transcripts assigned the primary
code "interactions with health care providers" for the analysis presented
here. Two investigators (A.L.B. and H.S.) developed secondary codes that classified
clinician-patient interactions. The intent of the secondary coding was to
characterize clinician-patient communication about PAS, non-PAS end-of-life
issues, and palliative care. Secondary codes were used to classify subject
perceptions of PAS conversations; clinician knowledge, attitudes, and skills;
and clinician-patient relationship issues. Examples of secondary codes include
"explicit PAS discussion," "clinician willingness to discuss dying," and "clinician
empathy." The secondary codes were refined through review with the multidisciplinary
research team. At this stage, participants' statements about what they valued
in their clinician's response to a PAS request, or what they wanted but did
not get in their clinician's response to a PAS request, emerged as central
issues.
Finally, in selective coding, the key phenomena that related to the
issue of how patients and family members wanted clinicians to respond to PAS
requests were identified. Our analysis at this step differs from some other
grounded-theory studies in that we did not attempt to build a completely new
theory of clinician-patient communication. Rather, we focused on patient and
family perceptions of clinician-patient communication in order to describe
key attributes of communication about PAS. The 3 major themes we report are
the products of this analysis. These themes were shared among patients and
family members and did not differ between prospective and retrospective subjects.
To enhance trustworthiness, each step of the analysis was reviewed in
weekly investigator meetings to ensure that the analysis was anchored to specific
identifiable data from transcripts. ATLAS.ti software was used to facilitate
data management and analysis.21 The themes
from this analysis were presented at a meeting of our patient advocacy intermediate
sources (a group that includes clinicians, advocates, and family members),
and we received verbal and written feedback confirming the validity of our
analysis. No major changes were made as a result of this presentation.
RESULTS
PARTICIPANT CHARACTERISTICS
We studied 35 cases of patients who pursued PAS and their family members. Table 1 and Table 2 give the characteristics of the participants. Table 1 also lists the manner of death and where the patients obtained
their lethal prescription. For the prospective cohort, the mean time between
the first interview with patients and death was 10.6 months (range, 0.1-30.6
months). For the retrospective cohort, the mean time between the patient's
death and the first interview with a family member was 20.2 months (range,
2.4-49.5 months).
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Table 1. Patient Characteristics
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Table 2. Family Member Characteristics*
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THEMES
Most patients and family members could recall the PAS discussions with
their clinicians in substantial detail. Their first-hand accounts of clinician
interactions regarding a PAS request provide important data about their perceptions
of clinical care related to PAS. The themes summarize what patient and family
members valued in communicating with clinicians about PAS.
Openness to Discussion About PAS
Patients and family members highly valued clinicians who were willing
and open to discussing PAS. When they encountered a clinician who was willing
to discuss PAS, they felt able to disclose many concerns about dying. They
also felt lucky because they knew PAS was controversial. As one family member
put it, what she wanted was "another sane adult" who could "talk in terms
. . . that remove the taboo from the process" by giving "a real, clear picture
of possible approaches without advocating [PAS]." The following counterexample
underscores the importance of clinician openness to discussion about PAS.
I know the physician that we had—the conversations were
a struggle with him because we couldn't talk about hastening the death. So
there was, like, a part of us that we could not talk about, which made our
questions limited. So it was like we didn't have access to information that
would have allowed our conversations to be more full and more fully informed.
Patients and family members attributed clinician unwillingness to discuss
PAS to a variety of reasons. Some clinicians were unwilling to discuss PAS
because it was illegal. These clinicians behaved as if discussions of PAS
in and of themselves were illegal and dangerous. One patient observed that
"all [my physicians] talk about is the legality of it," and another concluded
that clinicians "have to hide their feelings about [PAS], so as not to jeopardize
their careers." In other cases, patients and family members reported that
the topic of PAS provoked a strong emotional response from clinicians that
made further conversation awkward. For example, one family member described
a neurologist who was "so adamant that PAS was a terrible thing and the wrong
thing to do . . . it was kind of awful." Another subject described a physician's
reaction to a PAS request as "protective [of himself] . . . not at all sympathetic
or comforting." One patient described how she could detect that her oncologist
became "really uncomfortable" talking about PAS or "anything" about dying,
and she changed the subject for him. She said, "I learned that he's a baseball
fan and much more comfortable if I change the topic to baseball. . . . It's
awful when you have to try to make them feel comfortable, but that's the way
it is." Other clinicians seemed to want to maintain a biomedical focus. One
family member said, "They won't talk to you about [PAS] even as a possibility.
It's like, ‘I know that happens, but—what about let's do the chemotherapy.'"
The value of clinician openness to discussing PAS went beyond this topic
alone. Patients felt that a clinician willing to talk about PAS might also
be willing to discuss other worries, fears, and vulnerabilities about illness
and dying. As one patient said, "Everything was laid out on the table. Oh,
you bet, yeah. Because he can't help you—nobody can help you if they
don't know what's going on in your life." In a different case, a family member
described how her father's relationship with the caseworker from an advocacy
organization provided a different dimension of care than he received from
his oncologist. The family member said, "It provided a place where he could
talk about his illness. He didn't talk about hastening his death [because
he was prepared and did not think it was time]. He's just describing to them
what's going on with him and so on. But it's good to have a place like that."
Thus, patients may use talking about PAS as a gateway to talk about dying.
It's not that she [my friend, the patient] doesn't want to [talk
about dying]; that's the sad thing. She's sitting here holding all of this
stuff in, and to me the most important events in your life are your transitions,
your birth and your death . . . the beginning and the end of this physical
existence. But you can't talk to your doctor about it without them getting
all weird, [thinking] that you're suicidal or something.
This patient, during her own interview, wept as she described her frustration
trying to talk to one of her doctors. She said, "You're trying to get a doctor
to sit down and listen to you . . . but they never, ever get the overall picture."
Her clinicians' unwillingness to discuss PAS resulted in missed opportunities
to connect with this patient's deepest concerns, which included her quality
of life, her prognosis, and her suffering.
Another value of clinician openness is that it facilitated a complete
evaluation of a PAS request. Participants described clinicians who were willing
to assist patients and families but who avoided discussing PAS openly or explicitly.
In these cases, the clinicians fulfilled PAS requests with little evaluation.
One patient's wife said, "My husband, with the advice of a doctor friend that
lives in [another state], went to his cardiologist . . . And he told the doctor
that he needed Seconal. And this doctor has known my husband for a long time,
and all he said was, I trust you have a good reason, and gave it to him, a
prescription for it." In this case, a family member obtained a prescription
for PAS from a physician who had never met the patient. This is an extreme
case in our sample but it is not unique. Two other patients in our study obtained
prescriptions without any medical evaluation. In one of these cases, a family
member found that after a visit with the patient's oncologist, the necessary
prescriptions had been tucked into her purse without her knowledge. Clinicians
who deal obliquely with PAS requests may miss opportunities to fully evaluate
and understand the issues underlying the request.
Expertise in Dealing With the Dying Process
One important type of clinician expertise was the ability to describe
the natural history of illness and care options in the last days of life.
Patients and families were extremely sensitive to the ways in which clinicians
talked—or avoided talking—about these issues. A woman with metastatic
ovarian cancer found that she could not get information from her oncologist
about how she would die, so she went to a medical library and read a textbook
on gynecologic cancer. What she learned was that dying of ovarian cancer was
"long, protracted, not very happy . . . organ failures or blockages or blood
poisoning or pneumonia, and it takes a whole combination of things to finally
just be fatal." Although she confronted her oncologist with this information,
she left without reassurance that she could avoid a long, agonizing death.
She concluded that PAS was probably the least worst way for her to die. In
a different case, another patient was told by his physician that in "all the
AIDS cases in the city, it was the worst thrush they'd ever seen." His partner
reported:
Our doctor was like, you do not want to die of thrush, and then
kind of described how it would happen. Basically, he said the thrush would
grow and shut off your esophagus, so that you'd not be able to swallow . . . [my partner] would drool constantly and end up starving to death, because
he wouldn't be able to pass any food down. The doctor said, "You don't want
to die like that." And that's when [my partner] decided to do a hastened death.
The patient and his partner interpreted the physician's statements,
which did not include a medical response to fears of drooling and starving
to death, as a tacit endorsement of PAS as the best option in their circumstances.
Before this conversation, the patient was already considering PAS, but this
conversation marked a turning point in his interest.
Another valued type of clinical expertise was defining reasonable expectations
about dying and then delivering the care necessary to fulfill those expectations.
One woman with lung cancer was very suspicious of doctors and hospitals, believing
that "cancer is big business." She declined anticancer therapies but was willing
to explore palliative care options. Her physician referred her to hospice,
and her experience there made her rethink her commitment to PAS:
Before Thanksgiving, I went over to the hospice [an inpatient
unit] for respite care. It's a wonderful place. It's absolutely wonderful.
Unlike a hospital, you don't see any uniforms; you are not No. 14 or No. 12;
you are a person. The only thing that resembles a hospital is the bed and
the tray table. Outside of that, there is absolutely nothing that resembles
a hospital. There is no noise of anyone being in pain. It's wonderful; it
really is. [My] main concern is to be pain free, and they do take care of
that.
She ultimately died of progressive cancer at home with hospice care.
Another case of a patient with advanced acquired immunodeficiency syndrome
exemplifies what can happen when clinicians overpromise a "pain-free" death:
The physician encouraged [stopping total parenteral nutrition]
as a nice way to go and said that that would be probably a 3-week process,
maybe 4 at the most, but probably 3. "That's a very pleasant way to die. It's
pain free." . . . We went in and out of the emergency room 3 times over pain
in the last 2 weeks of his life . . . and he had great, agonizing, lower abdominal
pain through it all. So I felt real cheated about that. It wasn't this quiet,
pain-free existence. . . . If you're going to make a guarantee that a person
is really not going to be in pain, you need to make sure that they're not.
And if you don't think that you can make sure, you shouldn't promise.
When dying proved to be neither quiet nor pain free, the patient and
his partner began to plan a PAS.
A third type of expertise was individualizing pain control to meet patient
goals. In one case, the absence of this expertise led to a death by a self-inflicted
gunshot wound. The patient had painful bony metastases to his spine and was
"on 800 milligrams of morphine a day. Besides all the Roxicet he could manage
to keep down." His oncologist referred him to hospice for better pain management.
However, the patient and his wife found that their hospice providers had an
agenda about pain control that did not allow for the fact that his top priority
was to maintain a sense of control over his situation.
They put him on a morphine pump. It took him a couple of days
to adjust it, and they were extremely caring. They hovered. They just about
drove him up the wall. [They said,] "We're going to kill your pain." Well,
they killed his pain. He was unconscious for almost 24 hours. Flat on his
back. He had not been able to lay on his back. He was totally out of it. He
got up the next day and he said, "I feel like Ray Milland's ‘Lost Weekend.'"
[That movie was about] an alcoholic who just went through all sorts of, just,
DTs and, you know, it just—really hell on wheels. And that's exactly
how my husband felt. He said, "I can't think; I can't do this."
The next morning, the patient fired the hospice and discontinued the
pain regimen. "Once the hospice people had knocked him for 1 loop, he wasn't
going to let it happen again," explained his wife. The following day, the
patient warned his wife not to follow him outside, where he positioned himself
out of sight and shot himself in the head. The hospice nurse wrote in her
bereavement card, "At least he got one good night's sleep," to which his wife
responded, "I almost went through the ceiling."
A final type of expertise involved clinician knowledge about the lethal
potential of medications. In cases in which clinicians had this knowledge
and were willing to provide a prescription for PAS, patients and families
were reassured that if they ultimately decided to implement a PAS, it would
be successful. As one family member said:
The psychiatrist that [my husband] saw said that he didn't understand
why my husband needed to be in hell anymore, or myself, and that he was seeing
that a lot had been tried, and he thought that [my husband] should be able
to end his life if he wanted. So he began describing the correct pills, and
so there—and so then when he had it, I remember there was just a huge
relief on both of our parts and deep gratefulness to that person.
In other cases, however, patients or family members received instructions
from clinicians to increase doses of morphine and diazepam to hasten death
that proved to be incorrect. One family member recalled how a hospice nurse,
with explicit instructions from the physician, taught him how to unlock an
intravenous patient-controlled analgesia device and how to administer a lethal
dose of morphine. "They told us that within 3 to 4 hours his heart would stop
and it would be over . . . Very specific. And we were never told any alternative.
We were never told it might not work. . . And of course, it didn't work."
After 12 hours, the patient woke up, and his partner spent days frantically
searching for information and support. The patient finally came up with the
idea of dissolving secobarbital tablets in saline and injecting them intravenously.
The family member called the physician and hospice nurse for help, but "when
I asked what went wrong, they had no idea." Despite these frustrations with
clinician expertise, patients and family members remained genuinely appreciative
of clinicians' efforts on their behalf.
Maintenance of a Therapeutic Patient-Clinician Relationship, Even When
Patient and Clinician Disagree About PAS
Every patient and family member in this study recognized that asking
for PAS was a special request that went beyond the usual boundaries of a clinician-patient
relationship. Maintaining the clinician-patient relationship was made possible
by clinician openness to discussion and clinician expertise. Also, it involved
explicit negotiation about the roles of each party in the relationship as
well as clinician self-awareness of emotional vulnerabilities. Patients and
family members were relieved and reassured when clinicians made an explicit
commitment to assist with PAS in some way. However, when clinicians declined
to participate and were able to set clear boundaries about their role, as
in the example below, they could still maintain an important relationship
with a patient and family member.
My internist simply will not do [PAS], not just because of fear
of the law, [but] because his approach is he will not end life. . . . I adore
my internist who, when he had more time, used to make house visits to see
[my late husband when he was dying] and pep him up. Wonderful. So I love this
guy; I really do, even though I disagree with him on this issue. I love him,
and I respect him as a doctor.
When patients had had meaningful relationships with their clinicians,
family members often wanted some closure with them. In our study, this occurred
both when clinicians assisted PAS in some way and when clinicians evaluated
and discussed PAS but did not assist in any way. For example, members of one
family went to the physician's office the day after their mother's death:
"We took some living flowers and a card and a sweater . . . [my mother] sent
him her favorite sweater; it was a men's sweater anyway. So we saw him, and
that was our closure with him." In another example, one patient's physician
was sympathetic to her situation, said she would help as much as she could
with maximizing comfort, but also said that she could not provide a prescription
for PAS for legal reasons. The family obtained a prescription elsewhere, and
made plans for PAS, all the while maintaining close contact with the physician.
The family called this physician the day after the patient died of PAS, in
part to reassure the physician that she had done a good job. "[We] told her
it went well and that she hadn't failed. She had cried. I mean she wanted
to totally help us and just felt her hands were tied." Thus, the therapeutic
aspect of a clinician-patient relationship does not rest on a clinician's
willingness to provide a lethal prescription.
One case illustrates the importance of clinician self-awareness of emotional
needs and vulnerabilities in maintaining a therapeutic relationship. As the
family member put it, their physician "lacked boundaries." This physician
had an intense relationship with the patient that included daily telephone
calls and home visits, and on the night the patient attempted PAS, the physician
implemented a backup plan after oral medications failed. After the patient's
death, the family member reported that "[the physician] would go over to the
hospital to see a patient, and she'd call me at 10 o'clock PM and say she
wanted to come over [to our house] and sit in the room where he died and ‘hang
out.' And I'd say no, and she'd come over anyway." After a couple of these
incidents, the family member wrote the physician requesting that they have
no further contact because he felt burdened by these requests. Regardless
of their own beliefs about PAS, clinicians can maintain therapeutic relationships
with their patients when open communication, expertise, and appropriate boundaries
are present.
COMMENT
This report describes clinician-patient interactions from a unique set
of data involving 35 patients (and their family members) who seriously pursued
PAS. The qualitative methodology we used provides an in-depth, behind-the-scenes
look from the patient and family perspective on how clinicians dealt with
requests for PAS. From more than 3600 pages of transcribed interviews, we
identified 3 themes describing qualities of clinician-patient interactions
that patients and family members valued highly. These themes raise important
considerations for physicians and other clinicians about the skills, attitudes,
and knowledge needed to handle requests for PAS.
The controversy over the morality of PAS, including surveys of the general
public,22 extensive media coverage of Jack
Kevorkian,23 the 1997 US Supreme Court decision,13, 24 and medical journals,6, 25
has created a context for discussing PAS that highlights potential conflict
between patients and clinicians. Discussions about death and dying—even
without PAS—engender intense emotions in patients, family members, and
clinicians.26-27 It comes as no
surprise that many clinicians would rather avoid the topic altogether. Our
finding that clinicians had varying degrees of openness to discussion about
PAS (theme 1), and broader discussions of dying as well, leads us to wonder
whether published surveys of physicians actually underestimate the degree
to which patients wish to talk about PAS. When physicians say that their patients
never ask about PAS, it may be because they block the discussion. Maguire28 has described how clinicians block and avoid the
concerns that patients with cancer have about dying. Our data suggest that
PAS is another patient concern that is frequently blocked.
The medical literature on responding to PAS requests acknowledges that
these discussions can be uncomfortable and awkward, characteristics that can
be barriers for physicians. But what has not been described in the literature
is the way that patients in our study used discussions about PAS as a starting
point for discussions about dying that ranged far beyond PAS. In a medical
culture that views death as a failure, dying patients may feel as if they
have failed.29 Physician-assisted suicide provides
a different kind of end-of-life story for patients, one that emphasizes individual
values and personal choice,30 and data from
patients in Oregon underscore the importance of autonomy for patients who
choose PAS.1 Our data indicate that PAS can
serve as the entry point for discussions that go beyond the right to die,
to explore concerns about dying. Recognizing this can enable clinicians to
probe beyond the issue of PAS. In addition to asking, "Why are you considering
PAS?" it might be useful to ask, "How do you want your death to go?" or, "How
do you want it to look?"
A lack of openness to discuss PAS may result in a "don't ask, don't
tell" policy for both patient and clinician. Clinician openness may be crucial
for patients to feel comfortable in extending a PAS discussion beyond technical
medical issues, such as a lethal prescription, and toward difficult topics
such as dying and suffering, which can constitute an unacknowledged "elephant
in the room."31-32 The lack of
communication that we observed about PAS suggests that a kind of collusion
may occur that enables both patient and clinician to avoid difficult subjects,
as has been described in other situations.28, 33
Collusion may allow a clinician to avoid a PAS discussion that is awkward
and difficult, but at the cost of missing an opportunity to reassure patients
that their concerns will be addressed and that they will not be abandoned.34-35 Our data suggest that the presence
of collusion may be a marker for inadequate clinician communication skills
or clinician discomfort with dying, and may lead to the provision of a lethal
prescription for PAS without patient evaluation.
Patients and family members also valued expertise in dealing with the
dying process (theme 2). The specific aspects of expertise that our subjects
mentioned included communication skills, setting reasonable expectations,
individualizing pain control, and knowledge about the lethal potential of
commonly used medications. The combination of cognitive and affective skills
encompassed in these observations resonates with other work describing curricular
needs for clinicians in end-of-life care.36
Our work also underscores the need for clinicians to have both specific content
knowledge in discussing and managing dying and patient-centered communications
skills in order to respond to requests for PAS.37-38
The combination of openness to discussions about PAS and expertise in
dealing with the dying process are what make a continued clinician-patient
relationship possible when a patient pursues a hastened death. Our data suggest
that even for this highly selected group, a therapeutic clinician-patient
relationship may be as or more important to patients and family members interested
in PAS than a lethal prescription. When the patients in this study approached
their clinicians about PAS, they were usually looking for more than just a
prescription. They were looking for someone with whom they could build a therapeutic
alliance—a person who could act as a sounding board or guide them through
the dying process. Although some existing guidelines for responding to PAS
requests address the request as a single event, our data emphasize the importance
of the process of responding to a request over time in the context of a clinician-patient
relationship.
Patients and family members were mindful of the importance of boundaries
in therapeutic relationships. Our data show how underinvolvement or overinvolvement
by a clinician can be problematic in dealing with patients requesting PAS.
These behaviors may reflect the clinician's personal emotions. Block and Billings9 and Miles39 have outlined,
based on clinical experience and a careful reading of psychological and psychiatric
literature, how the personal emotions of clinicians might influence their
behavior in dealing with a patient considering PAS. For clinicians, these
issues of personal emotion, which may include self-awareness, boundaries,
transference, or countertransference, require attention because they can facilitate
or complicate the clinical relationship.40-42
Our findings reinforce other work stressing the importance for clinicians
to monitor their own feelings and to establish boundaries in their relationships
with patients.
While the strengths of this study are in its detailed, "thick" description
of a small group of patients and family members, it also has corresponding
limitations. The study participants were a self-selected sample of patients
and their family members who were highly motivated to pursue PAS, interested
in telling their stories, and physically able to search for and find people
willing to help facilitate PAS. Nearly all our participants obtained access
to lethal prescriptions despite the illegality. These participants may not
be directly comparable to those of other PAS studies in which the patients
were enrolled from inpatient palliative care units43
or had a uniform medical diagnosis.44-45
In addition, our participants not only exhibited a desire for PAS, as has
been studied in other outpatients,46 but also
actively made plans and tried to implement them in order to have a hastened
death.
Another study limitation is that we were not able to interview the clinicians
involved with our study participants. It is possible that patients and families
themselves contributed to the communication issues described here. For example,
patients who were secretive about their intention to pursue PAS may not have
alerted their clinician to their need to explore a desire for PAS, or they
may have colluded with their clinician to avoid discussing PAS.33
Finally, the themes we report are based on patient and family member
reports of their perceptions of communication rather than on transcripts or
videotapes of actual conversations. However, patient and family perceptions
are extremely important, and the 3 themes that we describe articulate patient
and family member concerns that were present in the majority of interviews
we conducted.
Based on this study, we suggest a set of guidelines that clinicians
might use when responding to patient requests for PAS (Table 3). These guidelines may also be useful for educators who
are teaching communication skills that are relevant to end-of-life care.
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Table 3. Guidelines for Responding to a Patient Requesting Physician-Assisted
Suicide (PAS) Suggested by These Data
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CONCLUSIONS
Responding to a patient request for PAS is an important, and complex,
clinical skill. These clinical discussions occur amid profound moral controversy,
the emotions engendered by death and dying, and the technical complexities
of contemporary medical care. Our patient and family accounts reveal many
missed opportunities for clinicians to engage in therapeutic relationships
involving discussions about PAS, dying, and end-of-life care. Clinicians responding
to patients requesting PAS need communication skills that will enable them
to discuss PAS and dying openly, an ability to talk about dying in a patient-centered
way, and palliative care expertise. They also need expertise in setting reasonable
expectations, individualizing pain control, and providing accurate information
about the lethal potential of medications.
AUTHOR INFORMATION
Accepted for publication October 15, 2001.
This study was supported in part by the Greenwall Foundation, New York,
NY, and the Walter and Elise Haas Family Fund, San Francisco, Calif. The Veterans
Health Administration and the Health Services Research and Development Service
(Washington, DC) of the Department of Veterans Affairs provided additional
financial support.
Drs Back and Pearlman are faculty scholars in the Project on Death in
America (PDIA) of the Open Society Institute, New York, NY.
We especially wish to thank the study participants. We also thank Margaret
Battin, PhD, Susan Block, MD, Sheila Cook, Barbara Koenig, PhD, and Tom Preston,
MD, who gave valuable guidance and/or feedback on early drafts of the manuscript
for this article.
This work was presented in slightly different form at the PDIA faculty
retreat, Tahoe, Calif, July 20, 2000.
The views expressed in this article are those of the authors and do
not necessarily represent the views of the funding agencies, Veterans Health
Administration, PDIA, University of Washington, University of Pittsburgh,
or other persons mentioned in the acknowledgment.
Corresponding author and reprints: Anthony L. Back, MD, Veterans
Affairs Puget Sound Health Care System, 1660 S Columbian Way (S-111), Seattle,
WA 98108 (e-mail: tonyback{at}u.washington.edu).
From the Veterans Affairs Puget Sound Health Care System, Seattle Division
(Drs Back and Pearlman and Ms Starks), the Departments of Medicine (Drs Back
and Pearlman), Medical History and Ethics (Drs Back and Pearlman), Health
Services (Ms Starks and Dr Pearlman), Anthropology (Dr Hsu), and Psychology
(Dr Gordon), University of Washington, and the Seattle Institute for Biomedical
and Clinical Research (Drs Hsu and Gordon), Seattle, Wash; the Department
of Psychiatry, University of Pittsburgh, Pittsburgh, Pa (Dr Bharucha); and
the National Center for Ethics, Veterans Health Administration, Washington,
DC (Dr Pearlman).
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