Responding to Requests for Physician-Assisted Suicide

"These Are Uncharted Waters for Both of Us. . . ."

Author Information <http://jama.ama-assn.org/issues/v288n1/rfull/#aainfo>
Paul B. Bascom, MD; Susan W. Tolle, MD
Studies of dying patients have shown that about half would like the option
of physician-assisted suicide (PAS) to be available for possible future use.
Those percentages decrease significantly with each step patients take toward
action. Studies show that although about 10% of patients seriously consider
PAS, only 1% of dying patients specifically request it, and 1 in 10 of those
patients actually receive and take a lethal prescription. However, most
patients' desires for PAS diminish as their underlying concerns are
identified and addressed directly. To help identify concerns motivating a
patient's request for PAS, physicians should talk with patients about their
expectations and fears, options for end-of-life care, goals, family concerns
and burdens, suffering or physical symptoms, sense of meaning and quality of
life, and symptoms of depression. A patient with advanced amyotrophic
lateral sclerosis (ALS) who requested PAS illustrates how a hasty response
may adversely affect patient care and the health care team. Although
physicians should remain mindful of their personal, moral, and legal
concerns, these concerns should not override their willingness to explore
what motivates a patient to make this request. When this approach is taken,
suffering can be optimally alleviated and, in almost all cases, the
patient's wishes can be met without PAS.
JAMA. 2002;288:91-98
JEL20002



THE PATIENT'S STORY



Mr G is an unmarried 47-year-old truck driver, living in Oregon. In January
2001, he experienced persistent pain in his arm following an industrial
accident. When weakness developed, his primary care physician, Dr J,
referred him to a neurologist, who diagnosed him as having amyotrophic
lateral sclerosis (ALS).
Mr G's disease progressed with unexpected speed and was not responsive to
any medical interventions. Mr G had a close relationship with Dr J and
openly discussed his wishes for end-of-life care. He completed an advance
directive indicating his desire to receive no life-sustaining treatments
such as cardiopulmonary resuscitation (CPR), tube feeding, or mechanical
ventilation. He also mentioned to Dr J that he might consider
physician-assisted suicide (PAS) as he neared death.
Within months of diagnosis, Mr G lost the ability to ambulate and care for
himself. Because he had no family caregivers, he was transferred to a
skilled nursing facility, where he continued to reside. Dr J did not follow
up patients at this facility, so Mr G's medical care was transferred to Dr
R, the facility's house physician.
In the 6 months that followed, Mr G's disease progressed rapidly. When he
began having difficulty speaking and swallowing and was nearing death, Mr G
asked Dr R to help him end his life. Dr R did not respond directly to the
request, nor did he explore it further. Instead, he referred Mr G to a home
hospice program. Mr G reported to the hospice social worker that he had
asked Dr R for PAS. When the social worker contacted Dr R to confirm the
request, Dr R became angry at her for discussing PAS with Mr G. Because of
his moral opposition to PAS, Dr R chose to discontinue caring for Mr G. Dr
L, the hospice medical director, then became Mr G's physician.



PERSPECTIVES



Mr G consented to be interviewed by a Perspectives editor but had become too
weak to participate prior to the scheduled interview. A Perspectives editor
interviewed the hospice social worker, Ms T, who referred to case notes to
provide Mr G's perspective. This Perspectives editor also interviewed Drs R
and L.
DR R: We didn't really talk about assisted suicide. He brought it up to me
several months ago. He pretty much stopped me in the hall and wanted to know
what my thoughts were about it and if I was prepared to help him.
DR L: Mr G had discussed PAS with Dr J when his diagnosis was first made, at
least in a conjectural sense, as something that he might want in the future.
MS T: He let us know right away that he wanted physician-assisted suicide.
The controversy of euthanasia and PAS has long existed, 1
<http://jama.ama-assn.org/issues/v288n1/rfull/#r1>  and the debate has
returned to the fore as concern over care of the dying has increased. 2-10
<http://jama.ama-assn.org/issues/v288n1/rfull/#r2>  Several major medical
societies have taken a stand opposing PAS and euthanasia. 11
<http://jama.ama-assn.org/issues/v288n1/rfull/#r11> , 12
<http://jama.ama-assn.org/issues/v288n1/rfull/#r12>  The intent of this
article is not to debate the morality of PAS (the prescribing of lethal
medications for patients to self-administer) or euthanasia
(physician-administered lethal injection), but instead to explore Mr G's
request and the subsequent reactions of his physicians, and to provide
guidance on ways in which physicians may constructively respond to requests
for PAS, irrespective of their moral and ethical position or legal concerns.
As clinicians know, it is not uncommon for patients with terminal illness to
consider PAS. 13-15 <http://jama.ama-assn.org/issues/v288n1/rfull/#r13>
Many physicians will receive a specific request for PAS from a patient.
16-19 <http://jama.ama-assn.org/issues/v288n1/rfull/#r16>  Physicians may
feel uncomfortable discussing these requests. Although physicians should
remain mindful of their own personal concerns, these concerns should not
override their willingness to explore the motivation behind the patient's
request. When a physician responds to requests for PAS with avoidance or
rejection, opportunities to alleviate suffering may be missed.
An exploration of the request can proceed effectively if the physician
listens to the patient respectfully, acknowledging that the physician's
role, as part of the larger health care team, is to provide care, give
information, and respond to suffering regardless of the physician's moral
view. These discussions may lead to a greater understanding of a patient's
fears and sense of suffering. When such an approach is taken, suffering will
be optimally alleviated and, in almost all cases, the patient's wishes will
be met without PAS. 20 <http://jama.ama-assn.org/issues/v288n1/rfull/#r20> ,
21 <http://jama.ama-assn.org/issues/v288n1/rfull/#r21>



CONSIDERING PAS



Patients who initially consider PAS are, in part, exploring their options at
the end of life. Their most pressing question may have changed from "Why
me?" to "What next?" Some patients speculate that if faced with unbearable
suffering, they would choose PAS. An initial request for PAS should be
interpreted as a call for information about the future and an appeal for a
commitment to respond to anticipated suffering. Patients and their families
are eager for the physician to provide guidance about what lies ahead. They
benefit from the assurance that the physician is committed to responding
effectively to their suffering, no matter how difficult or complex. 22
<http://jama.ama-assn.org/issues/v288n1/rfull/#r22> , 23
<http://jama.ama-assn.org/issues/v288n1/rfull/#r23>  The physician who
responds with avoidance, dissuasion, or rejection has failed to hear the
patient's cry.
Why Do Patients Consider PAS?

DR R: He wanted to be empowered by having that choice. He wanted to end it
on his own terms.
Each patient who requests PAS brings a unique personal history to the
request. Powerful stories have been written about the complex issues behind
some patients' decisions to hasten their own deaths. 6
<http://jama.ama-assn.org/issues/v288n1/rfull/#r6> , 24-27
<http://jama.ama-assn.org/issues/v288n1/rfull/#r24>  Survey data provide
some guidance as to the range of concerns that may motivate requests. In
general, physical symptoms rarely serve as the primary or sole motivation
behind the request. Instead, individual values appear to have primacy (
Table 1 <http://jama.ama-assn.org/issues/v288n1/fig_tab/jel20002_t1.html> ).
17 <http://jama.ama-assn.org/issues/v288n1/rfull/#r17> , 18
<http://jama.ama-assn.org/issues/v288n1/rfull/#r18> , 21
<http://jama.ama-assn.org/issues/v288n1/rfull/#r21> , 28-30
<http://jama.ama-assn.org/issues/v288n1/rfull/#r28>  In a study of 100
patients with ALS, those willing to consider PAS were less religious, scored
higher on measures of hopelessness, and had a sense of diminished quality of
life. Such patients did not differ in levels of pain and suffering, degree
of disability, social support, use of hospice care, or frequency of
depression compared with those who would not consider PAS. 14
<http://jama.ama-assn.org/issues/v288n1/rfull/#r14>  Among patients with
acquired immunodeficiency syndrome (AIDS), pain, severity of disease, and
functional impairment were not associated with desire for PAS. 13
<http://jama.ama-assn.org/issues/v288n1/rfull/#r13>  In Washington state,
828 physicians responding to a survey reported that patients who requested
PAS highlighted issues such as loss of control, being a burden, being
dependent on others for personal care, and loss of dignity as concerns
motivating the request. Uncontrolled pain and financial pressure were rarely
perceived to be primary factors. 18
<http://jama.ama-assn.org/issues/v288n1/rfull/#r18>
How Often Do Patients Consider PAS?

Obtaining conclusive data about the frequency of requests for PAS poses
several challenges. Definitions vary depending on the investigator and the
goals of the study. If "consideration of physician-assisted suicide" is
defined to include patients who want the option to be available for possible
future use, then approximately half of the patients in some studies qualify
as considering the option. In a survey of 378 patients with AIDS, 55%
reported considering PAS as an option for themselves. 13
<http://jama.ama-assn.org/issues/v288n1/rfull/#r13>  In a study of 100
patients with ALS, 56% agreed with the statement: "Under some circumstances
I would consider taking a prescription for medicine whose sole purpose was
to end my life." Nearly all these patients wanted the option available for
future use. One individual indicated the desire to take the medication
immediately. 14 <http://jama.ama-assn.org/issues/v288n1/rfull/#r14>
Other studies show that smaller numbers of patients seriously consider PAS.
In Utah, 16% of 1114 family members randomly identified from death
certificates reported that their loved one would have wanted PAS or
euthanasia had it been available. 15
<http://jama.ama-assn.org/issues/v288n1/rfull/#r15>  Importantly, the degree
of interest in pursuing PAS may vary over time. Emanuel et al 31
<http://jama.ama-assn.org/issues/v288n1/rfull/#r31>  conducted a prospective
study of 988 terminally ill patients from 6 states, examining the frequency,
durability, and outcome of requests for PAS. In an initial interview, 60.2%
of patients supported PAS in the abstract while 10.6% of patients reported
seriously considering euthanasia or PAS for themselves. At a second
interview 2 months later, a similar number (10.3%) were considering PAS.
However, nearly half of those were newly contemplating PAS and half of those
previously considering PAS were no longer considering the option.
How Often Do Patients Request PAS?

Although many patients will consider PAS, a smaller number will make a
specific request for it. Among the 256 patients who died during the course
of the study by Emanuel et al, 31
<http://jama.ama-assn.org/issues/v288n1/rfull/#r31>  4 (1.6%) made a
specific request of their physician for euthanasia or PAS. In Oregon, data
suggest that about 1% of dying patients will make a specific request for PAS
of their physician. Of these patients, approximately 1 in 10, (0.1% of all
dying patients) will die by PAS. 21
<http://jama.ama-assn.org/issues/v288n1/rfull/#r21> , 28
<http://jama.ama-assn.org/issues/v288n1/rfull/#r28>  Among selected
populations, use of PAS may be substantially higher, as in the Netherlands,
where both PAS and euthanasia are legal, physicians of patients with ALS
reported that 35 (17%) of 203 chose to die by means of euthanasia and 6 (3%)
died by means of PAS. 32 <http://jama.ama-assn.org/issues/v288n1/rfull/#r32>



MORAL AND LEGAL FRAMEWORK



DR R: These were uncharted waters for both of us, and it was very emotional.
I wasn't comfortable with assisted suicide even though, in his place, I
could see myself wanting to do the same thing. I wasn't comfortable, as a
physician, crossing the line into assisted suicide. I've never intentionally
killed someone, and I'm not prepared to.
MS T: Mr G said he had asked Dr R about PAS and his words were "Dr R is
right on board with me." The patient was 100% sure that Dr R was "on his
side."
Physicians vary in their moral beliefs and actions regarding PAS. In a 1995
statewide survey of Oregon physicians, 60% of 2761 responding physicians
agreed that PAS should be legal in some cases. However, only 46% were
willing, if PAS were legal, to prescribe lethal medication. Dr R was similar
to the 31% of Oregon physicians unwilling to prescribe for moral reasons. 19
<http://jama.ama-assn.org/issues/v288n1/rfull/#r19>  In a national study,
11% of 1902 physicians surveyed said they would be willing to "prescribe a
medication for a competent patient to use with the primary intention of
ending his or her own life" under current legal constraints. 17
<http://jama.ama-assn.org/issues/v288n1/rfull/#r17>  Thirty-six percent
would do so if the practice were legal.
Some physicians provide lethal prescriptions to terminally ill patients,
even in jurisdictions where the practice is illegal. In Oregon prior to
legalization of PAS, 7% of 2761 physicians surveyed reported having written
a prescription knowing the patient intended to use it to take his or her own
life. 19 <http://jama.ama-assn.org/issues/v288n1/rfull/#r19>  In a national
survey, 3.3% of 1902 physicians surveyed reported that they had written a
prescription for a lethal dose of medication. 17
<http://jama.ama-assn.org/issues/v288n1/rfull/#r17>  Participation is not
equal across the specialties. In a national survey, 10.8% of 3288
oncologists reported having performed PAS during their career. 33
<http://jama.ama-assn.org/issues/v288n1/rfull/#r33>  Fifty-three percent of
228 physicians in San Francisco caring for patients with AIDS reported
having granted a dying patient's request for PAS. 16
<http://jama.ama-assn.org/issues/v288n1/rfull/#r16>
In the Netherlands, PAS and euthanasia have been practiced openly for
approximately 20 years. These practices have been recently codified into law
and formal guidelines established. 34
<http://jama.ama-assn.org/issues/v288n1/rfull/#r34>  Oregon is the only
state in the United States to have legalized PAS. Other states (Washington,
California, and Maine) have voted on state initiatives on PAS or euthanasia,
and in each case, voters rejected the initiatives.
The Oregon Death With Dignity Act arose as a citizen initiative passed by
Oregon voters in November 1994. Implementation was delayed by legal
injunction until October 1997 when an appellate court lifted the injunction.
Almost simultaneously, in November 1997, Oregon voters rejected a ballot
measure to repeal the Death With Dignity Act and the law went into effect.
On November 6, 2001, US Attorney General John Ashcroft issued a directive
interpreting the federal Controlled Substances Act to prohibit the use of
controlled substances such as barbiturates in PAS. Physicians who write
prescriptions with the intent of providing the means for their patient's
suicide would be subject to investigation and potential prosecution,
according to the directive. 35
<http://jama.ama-assn.org/issues/v288n1/rfull/#r35>  On April 17, 2002, US
District Court Judge Robert Jones overturned Ashcroft's directive, allowing
the Oregon Death With Dignity Act to remain in effect. 36
<http://jama.ama-assn.org/issues/v288n1/rfull/#r36>
The Oregon Death With Dignity Act legalizes PAS only under certain
circumstances and specifically prohibits euthanasia. (Information about
Oregon's Death With Dignity Act can be found at:
http://www.ohd.hr.state.or.us/chs/pas/pas.htm
<http://www.ohd.hr.state.or.us/chs/pas/pas.htm> ). Mr G met all of the legal
requirements under the Act.
There is no moral or legal obligation for physicians to comply with a
patient's request for PAS, even in Oregon. Nor is the physician under any
obligation to refer the patient to a physician who would honor the patient's
request. If the patient's desire to pursue PAS makes it impossible for the
physician to continue caring for the patient, the obligation remains to
continue providing care and comfort until arrangements are made for another
physician to assume care. 23
<http://jama.ama-assn.org/issues/v288n1/rfull/#r23> , 37
<http://jama.ama-assn.org/issues/v288n1/rfull/#r37>  In Oregon, physicians
have been encouraged to consider their own stance on PAS before being asked
(guidance is available at: http://www.ohsu.edu/ethics/guide.htm
<http://www.ohsu.edu/ethics/guide.htm> ) because patients may ask them about
their beliefs and may choose to transfer care to a physician who shares
their beliefs. 38 <http://jama.ama-assn.org/issues/v288n1/rfull/#r38>



RESPONDING TO A REQUEST FOR PAS



DR R: I decided that I would recuse myself from the case. I explained that I
wasn't trying to abandon him as a patient, but I couldn't facilitate PAS. I
made no judgment about someone else doing it; I just felt that, as a
physician, there was a line I couldn't cross.
MS T: The nurse and I went out the day after Dr R met with Mr G to see how
Mr G felt after speaking with the doctor. He was very distressed. In his own
words, he was "terrified." And he wept at what he called his loss of control
and his options. He felt like everything was pulled out from under him.
The Initial Response

Caring for dying patients can be challenging for a physician, frequently
evoking thoughts of one's own mortality or thoughts of previous or
anticipated deaths of loved ones. 22
<http://jama.ama-assn.org/issues/v288n1/rfull/#r22> , 39
<http://jama.ama-assn.org/issues/v288n1/rfull/#r39>  A request for PAS adds
to this emotional situation. The request may conflict with the physician's
most deeply held moral beliefs. Other physicians may agree in theory with
assisted suicide but may be reluctant to participate due to risks of
investigation, censure, and prosecution in most jurisdictions. Physicians
may interpret a request for PAS as an indictment of their ability to care
compassionately for their patients. 40
<http://jama.ama-assn.org/issues/v288n1/rfull/#r40>  However, an immediate
refusal of a request for PAS runs the risk of adversely affecting the
patient's care, as happened in this case. A definitive acceptance or
rejection of the request need not occur until the motivation behind the
patient's request has been explored and a deeper understanding is reached.
11 <http://jama.ama-assn.org/issues/v288n1/rfull/#r11> , 20
<http://jama.ama-assn.org/issues/v288n1/rfull/#r20> , 41
<http://jama.ama-assn.org/issues/v288n1/rfull/#r41>  Should the request for
PAS persist, physicians who are unwilling to write a prescription for lethal
medication should inform the patient that they will not honor the request.
In all cases, the physician should ensure that the patient's need for
comfort will continue to be met.
Exploring the Request for PAS

DR R: My response was to try to direct him toward hospice.
DR L: What was beneficial for Mr G was for me to explore with him what was
driving him to make that request. I explored his understanding of his
options and what he believed awaited him.
Terminally ill patients have a variety of reasons for considering PAS. In
Table 2 <http://jama.ama-assn.org/issues/v288n1/fig_tab/jel20002_t2.html> ,
we present questions to guide a deeper exploration of the patient's
concerns, fears, and motivations.
Expectations and Fears
DR R: His primary fear was suffocating. He didn't want to suffocate on his
own secretions.
MS T: He felt that the doctors had told him what the end of his life would
be like with ALS, and it was very frightening. He was fearful of a lot of
pain, of drowning in his own fluids, of terrible burning in his legs, and of
perhaps being in a vegetative state for a long time.
DR L: His father had died of colon cancer years before, and he had been
witness to that. He felt that his father had died a very protracted,
miserable death in the hospital.
Patients often say that they are not afraid of death but are afraid of the
process of dying. 22 <http://jama.ama-assn.org/issues/v288n1/rfull/#r22> ,
42 <http://jama.ama-assn.org/issues/v288n1/rfull/#r42>  Many patients fear
that dying will be a time to "lie there and suffer." In the past, death was
familiar and occurred more frequently in the community. In recent decades,
however, death has largely occurred in the hospital, in an environment of
significant unrelieved suffering and isolation. 43
<http://jama.ama-assn.org/issues/v288n1/rfull/#r43> , 44
<http://jama.ama-assn.org/issues/v288n1/rfull/#r44>  Many patients' only
experience of death may have been the prolonged, painful deaths of loved
ones. Some investigators report that such experiences are associated with
increased contemplation of PAS. 13
<http://jama.ama-assn.org/issues/v288n1/rfull/#r13>  For Mr G, the intense
memory of his father's protracted death contributed to his fears. Mr G had
vivid perceptions of the physical suffering he believed awaited him as death
approached. Dr R had perhaps inadvertently heightened these concerns by
highlighting the potential dyspnea, suffocation, and leg pain associated
with terminal ALS without stressing the availability and effectiveness of
treatments for these symptoms.
Options for End-of-Life Care
MS T: Mr G felt very sure that Dr R would provide him with the lethal
injection that he needed. He used the word "injection."
Frequently, the request for PAS reflects a patient's misunderstanding about
his or her options for end-of-life care. Patients may not realize the
breadth of alternative responses available to alleviate suffering ( BOX
<http://jama.ama-assn.org/issues/v288n1/rfull/#box1> ). Not all options will
be morally acceptable to all patients or physicians. 45
<http://jama.ama-assn.org/issues/v288n1/rfull/#r45>  Patients who ask for
PAS may actually be requesting aggressive symptom control should their
suffering become intolerable. They may not understand that medications can
be increased to whatever levels are required to relieve physical symptoms,
such as pain and dyspnea or other physical and emotional suffering. In rare
instances, in which even extraordinary doses of analgesics are ineffective,
physicians can prescribe barbiturates to sedate patients to relieve
symptoms. 46 <http://jama.ama-assn.org/issues/v288n1/rfull/#r46>  Even if
death is hastened in the process, under the principle of double effect, such
actions are morally permissible and legal when the intent of the treatment
is to relieve symptoms and not to cause the patient's death. 11
<http://jama.ama-assn.org/issues/v288n1/rfull/#r11> , 47
<http://jama.ama-assn.org/issues/v288n1/rfull/#r47> , 48
<http://jama.ama-assn.org/issues/v288n1/rfull/#r48>
Patients often confuse PAS with legally available options to control the
time and manner of death. Patients may not understand the option of
withdrawal or withholding of life-sustaining treatments. Physicians should
reassure patients that all life-prolonging treatments and life-sustaining
medications can be refused or discontinued. 46
<http://jama.ama-assn.org/issues/v288n1/rfull/#r46> , 49
<http://jama.ama-assn.org/issues/v288n1/rfull/#r49> , 50
<http://jama.ama-assn.org/issues/v288n1/rfull/#r50>  Patients may also be
unaware that artificial hydration and nutrition can be discontinued or
refused, as Mr G had instructed in his advance directive. Mr G may have been
unaware that he could also choose voluntarily to stop eating and drinking,
and in doing so, prevent a protracted death. 46
<http://jama.ama-assn.org/issues/v288n1/rfull/#r46>  Moral questions have
been raised about such action in patients who can still swallow. 45
<http://jama.ama-assn.org/issues/v288n1/rfull/#r45>
Mr G appeared to equate PAS and euthanasia (a common source of confusion) 51
<http://jama.ama-assn.org/issues/v288n1/rfull/#r51>  in expecting that Dr R
would administer an injection. Euthanasia remains illegal in Oregon and Dr R
could not have legally administered a lethal injection. Therefore,
physicians should ask patients who request lethal medications to
specifically describe what they mean by PAS.
Establishing Patient Goals
DR L: His goal was to avoid a protracted, lingering death; to make sure that
when he reached a point of immobility, the end would come quickly.
MS T: In his words, he did not want to suffer at the end.
Some patients, as in Mr G's case, report that their primary goal is to
achieve a safe and comfortable death. Such thoughts may be indicative of
patients who have "completed their life's work and said their last
good-byes." Desire for or acceptance of death in such a patient may not
indicate depression but rather a patient who faces death fully content and
fulfilled. 42 <http://jama.ama-assn.org/issues/v288n1/rfull/#r42>
A terminal illness can produce a sense of deep meaning and transcendence as
dying patients reflect on their lives and seek stronger connections with
loved ones. 42 <http://jama.ama-assn.org/issues/v288n1/rfull/#r42>
Physicians can promote and encourage such feelings by asking patients about
their goals and tailoring medical options to achieve them. These goals will
likely have shifted from medical goals, such as control of disease and
prolongation of life, to more personal goals, such as spending time with
family or living to see an important milestone. 52
<http://jama.ama-assn.org/issues/v288n1/rfull/#r52>
Relief of Suffering
Suffering is uniquely personal. 53
<http://jama.ama-assn.org/issues/v288n1/rfull/#r53>  Physicians should
exercise caution in evaluating whether the patient's degree of suffering is
sufficient to justify a request for PAS. Each patient will experience a
unique degree of suffering, which must be believed and validated.
Physical pain may cause severe distress, but it is the impending
disintegration of the person, loss of control, and unresolved spiritual or
psychological issues ("total pain") 42
<http://jama.ama-assn.org/issues/v288n1/rfull/#r42> , 54
<http://jama.ama-assn.org/issues/v288n1/rfull/#r54>  that may cause the most
intense suffering. Suffering of this nature may be addressed with attention
to a patient's spirituality or sense of meaning. Mr G appears to have
reached an acceptance of his death and did not appear to be experiencing
spiritual suffering.
Sense of Meaning and Quality of Life
MS T: He had become very close to numerous caregivers at the facility. He
was good friends with his military buddies and his room was decorated with
pictures of him in the military.
Dr L: He was really quite pleasant. He could sit up and maneuver around the
nursing home with his electric wheelchair; he still had use of one hand.
Quality of life is also a uniquely personal, subjective experience. 55
<http://jama.ama-assn.org/issues/v288n1/rfull/#r55>  A dying patient's
estimation of quality of life is not based solely on functional status and
the presence or absence of physical symptoms. 14
<http://jama.ama-assn.org/issues/v288n1/rfull/#r14>  Frequently, quality of
life centers on the transcendent, existential questions of meaningfulness
and worthiness. 42 <http://jama.ama-assn.org/issues/v288n1/rfull/#r42>  Many
dying patients experience some distressing physical symptoms and most lose
functional capabilities as death approaches. Yet, some dying patients find
quality of life to be enhanced by a heightened sense of meaning even as
physical function diminishes and death approaches. Mr G continued to report
good quality of life in spite of his dramatic physical limitations. He had
good friends who visited frequently. He had established strong bonds with
the nursing home staff and felt valued there.
Ruling Out Depression
DR R: I sensed that he was starting to get a little bit depressed, and we
did a trial of antidepressants, which he only took briefly because they
caused nausea. He had a very positive attitude. He knew he was staring down
the barrel of a gun. He tried to make light of himself whenever he could. I
liked him. He was a personable guy.
Depression is common in terminal illness (estimates range from 4.5%-53%) and
is frequently undiagnosed. 56
<http://jama.ama-assn.org/issues/v288n1/rfull/#r56>  The diagnosis of
depression in dying patients presents several challenges. 57
<http://jama.ama-assn.org/issues/v288n1/rfull/#r57>  Dying patients often
experience periods of depressed mood. However, in many patients these
depressed moods will represent normal reactive sadness, rather than clinical
depression. The physical signs of depression, such as weakness, fatigue,
change in appetite, and hypersomnolence are frequently present as a result
of the disease itself. The diagnosis of depression in the terminally ill is
best made using the cognitive signs of depression: anhedonia, guilt, and
loss of self-worth, along with pervasive sadness. 57
<http://jama.ama-assn.org/issues/v288n1/rfull/#r57>  Some research has shown
that the simple question "Are you depressed?" may be the best diagnostic
test for assessing depression in the terminally ill. 58
<http://jama.ama-assn.org/issues/v288n1/rfull/#r58>
Dr R wisely considered the possibility that Mr G might be depressed.
However, Dr R's description of Mr G does not suggest a man with serious
depression. Mr G appears to have retained his self-worth and remained
involved with activities that gave him pleasure. Mr G most likely had
periods of understandable sadness as the reality of his death loomed. This
sadness is perhaps what Dr R sensed was depression. Importantly, the
presence or absence of depression may not be the most important marker for
the desire for PAS. Rather, some studies of terminally ill patients suggest
that hopelessness may correlate better with the desire for PAS. 14
<http://jama.ama-assn.org/issues/v288n1/rfull/#r14> , 59
<http://jama.ama-assn.org/issues/v288n1/rfull/#r59>
The Request Withdrawn

MS T: After Mr G met with Dr L, he felt he no longer needed to pursue PAS.
Dr L made him feel very sure that his end would be pain-free and peaceful;
that he would not suffer the burning legs and the anguish that he was afraid
he would suffer. Dr L would give him whatever amount of pain medication or
sedation was necessary so that he would not suffer at the end.
Mr G fit the common pattern of patients who request PAS. Almost all patients
do not persist in their request when their concerns are addressed
effectively. In Oregon, 15% of patients requesting PAS under the Oregon
Death With Dignity Act ultimately received a prescription. 28
<http://jama.ama-assn.org/issues/v288n1/rfull/#r28>  Following Dr L's
assurances that his suffering would be controlled, Mr G no longer pursued
PAS.
When PAS Is Chosen

Some patients, about 0.1% to 0.2%, will persist in their desire for PAS. 21
<http://jama.ama-assn.org/issues/v288n1/rfull/#r21> , 31
<http://jama.ama-assn.org/issues/v288n1/rfull/#r31>  In Oregon some requests
for PAS have endured despite physician interventions, including pain control
and control of other symptoms, hospice referral, mental health consultation,
or trial of antidepressants. 21
<http://jama.ama-assn.org/issues/v288n1/rfull/#r21>  Interviews with
surviving families in Oregon suggest that some patients who proceed with PAS
have a deeply held desire to control the time and manner of their death. 29
<http://jama.ama-assn.org/issues/v288n1/rfull/#r29>  Among patients in
Oregon who received lethal prescriptions, approximately one third died of
their disease without taking the lethal prescription. 21
<http://jama.ama-assn.org/issues/v288n1/rfull/#r21>  For these patients,
health department interviews suggest that the possession of a lethal
medication may have provided a sufficient sense of control. In other
patients, the disease may have advanced so quickly that PAS was unnecessary
or impossible. 60 <http://jama.ama-assn.org/issues/v288n1/rfull/#r60>



Impact on the Health Care Team and Family



MS T: Dr R was very angry, saying he had "ordered hospice, not
physician-assisted suicide." He was very angry at hospice for allowing the
conversation to open up. He felt betrayed by [our] hospice and our advocacy
for exploring the patient' s wishes. He basically accused me of helping the
patient commit suicide.
DR R: I was upset. My intention in referring him to hospice was to make sure
that he had a comfortable death but not assisted suicide.
The Health Care Team

Mr G's request for PAS created significant challenges for the team providing
his care. The ethical principle of conscientious practice requires that team
members not be compelled to provide treatments that violate their own moral
values and beliefs. 37 <http://jama.ama-assn.org/issues/v288n1/rfull/#r37> ,
48 <http://jama.ama-assn.org/issues/v288n1/rfull/#r48>  However, an attitude
of mutual respect for others of differing viewpoints is imperative to
optimize patient care. Good interdisciplinary patient care requires
excellent and open communication. 42
<http://jama.ama-assn.org/issues/v288n1/rfull/#r42> , 61
<http://jama.ama-assn.org/issues/v288n1/rfull/#r61>  Despite the complex
moral and legal issues, a nonjudgmental stance will help diminish conflicts
between team members.
Several Oregon institutions and health care systems have policies
prohibiting PAS. The moral values and beliefs of organizations also deserve
respect. 37 <http://jama.ama-assn.org/issues/v288n1/rfull/#r37>  Respect for
the opposition of individuals and health care systems is specifically
contained in Oregon's law. 62
<http://jama.ama-assn.org/issues/v288n1/rfull/#r62>  However, irrespective
of their position on PAS, all individuals and systems that provide care for
terminally ill patients have a fundamental responsibility to respond
aggressively to suffering.
The Family

Family members may hold different views regarding PAS from those of their
dying loved one. 37 <http://jama.ama-assn.org/issues/v288n1/rfull/#r37>  The
same divisions in beliefs of the health care team that complicated Mr G's
care may strain family relationships. At times, patients may choose not to
pursue their request for PAS out of respect for the beliefs of loved ones.
63 <http://jama.ama-assn.org/issues/v288n1/rfull/#r63>  Oregon's law
requires physicians to encourage patients to notify their family of their
desire for PAS. To our knowledge, there are no comprehensive data on the
impact of death by PAS on surviving family members. 37
<http://jama.ama-assn.org/issues/v288n1/rfull/#r37>  Some families report
coming to respect their loved one's choice for PAS. 27
<http://jama.ama-assn.org/issues/v288n1/rfull/#r27> , 29
<http://jama.ama-assn.org/issues/v288n1/rfull/#r29>  However, the potential
for complicated grief would exist if the death occurred in the context of
unresolved family conflict. 64
<http://jama.ama-assn.org/issues/v288n1/rfull/#r64>



CONCLUSION



It is not uncommon for patients to consider PAS. Many physicians will
receive a specific request for PAS from their patients. When a terminally
ill patient asks about PAS, physicians may feel anxious and some may
abruptly truncate the conversation. Premature closure of this discussion may
contribute to the patient's sense of isolation and also result in missed
opportunities to identify suffering that can be ameliorated. Open dialogue
about PAS may allow an exploration of patients' expectations and fears,
their knowledge of options for care at the end of life, and their sources of
suffering. When physicians commit themselves to remain present with patients
and to respond to their suffering, in almost all cases, the patient's wishes
can be met without PAS.



Author/Article Information


Author Affiliations: Division of General Internal Medicine and Geriatrics,
Center for Ethics in Health Care, Oregon Health & Science University,
Portland.

Corresponding Author and Reprints: Paul B. Bascom, MD, Division of General
Internal Medicine and Geriatrics, L475, Oregon Health & Science University,
Portland, OR 97201 (e-mail: [log in to unmask] <mailto:[log in to unmask]> ).
Perspectives on Care at the Close of Life is produced and edited at the
University of California, San Francisco, by Stephen J. McPhee, MD, Michael
W. Rabow, MD, and Steven Z. Pantilat, MD; Amy J. Markowitz, JD, is managing
editor
Funding/Support: The Perspectives on Care at the Close of Life section is
made possible by a grant from The Robert Wood Johnson Foundation.
Other Resources: For a list of relevant Web sites, see below.
Acknowledgment: We wish to express our gratitude to the patient and his
family, his physicians, and social worker for allowing their stories to be
shared. We also thank the section editors for their guidance and
suggestions.
Disclaimer: Oregon Health & Science University and the OHSU Center for
Ethics in Health Care remain neutral on the moral issue of PAS. Oregon
Health & Science University and the Center are united with all those
providing care to dying patients in working to improve care at the end of
life.
Other Resources
Oregon Public Health ServicesCenter for Health Statistics (formerly the
Oregon Health Division)
http://www.ohd.hr.state.or.us/chs/pas/pas.htm
<http://www.ohd.hr.state.or.us/chs/pas/pas.htm>
Contains information about the Oregon Death with Dignity Act, and annual
reports on patients who have died under the Act.
Center for Ethics in Health Care, Oregon Health & Science University
http://www.ohsu.edu/ethics/guide.htm <http://www.ohsu.edu/ethics/guide.htm>
Provides the full text of the 15-chapter book "The Oregon Death with Dignity
Act: A Guidebook for Health Care Providers." The text of this document was
written by the Task Force to Improve the Care of Terminally Ill Oregonians
and updated in 2000.
ACP-ASIM End-of-Life Care Consensus Panel
http://www.acponline.org/ethics/eolc.htm
<http://www.acponline.org/ethics/eolc.htm>
Consensus statements in journal articles on end-of-life care practices
including pain management and terminal sedation.
Education for Physicians on End-of-Life Care
http://www.epec.net
<http://pubs.ama-assn.org/cgi-bin/buffer/http://www.epec.net>
Provides professional end-of-life care education documents and communication
tools, conference information, and speakers.
The End-of-Life Physician Education Resource Center
http://www.eperc.mcw.edu <http://www.eperc.mcw.edu>
Reviews and provides instructional and evaluation materials focused on
end-of-life care.
Innovations in End-of-Life Care
http://www.edc.org/lastacts <http://www.edc.org/lastacts>
Provides a wide range of activities and programs in end-of-life care from
professional education to public dialogue. Sponsored the Moyers' series On
Our Own Terms.


Box. Options Available to Terminally Ill Patients for Care and Treatment at
the End of Life
Options Physicians May Offer
Aggressive pain management
Terminal sedation or palliative sedation
Withdrawal or withholding of life-sustaining treatments
    Dialysis
    Mechanical ventilation
    Medications such as corticosteroids, insulin, antiarrhythmics
    Artificial hydration and nutrition
Options Patients May Request
Voluntarily stopping eating and drinking
Physician-assisted suicide (Oregon only)
( Return to text <http://jama.ama-assn.org/issues/v288n1/rfull/#text1> .)




Perspectives on Care at the Close of Life Section Editor: Margaret A.
Winker, MD, Deputy Editor, JAMA.



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Edward E. Rylander, M.D.
Diplomat American Board of Family Practice.
Diplomat American Board of Palliative Medicine.