Responding to Requests for Physician-Assisted Suicide
"These Are Uncharted Waters for Both
of Us. . . ."
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
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.
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 and the debate
has returned to the fore as concern over care of the dying has increased.2-10 Several major
medical societies have taken a stand opposing PAS and euthanasia.11, 12 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 Many physicians
will receive a specific request for PAS from a patient.16-19 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, 21
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, 23 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, 24-27 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).17, 18, 21, 28-30 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 Among patients with
acquired immunodeficiency syndrome (AIDS), pain, severity of disease, and
functional impairment were not associated with desire for PAS.13 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
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 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
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 Importantly, the degree
of interest in pursuing PAS may vary over time. Emanuel et al31 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 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, 28 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
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 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 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 In a national survey,
3.3% of 1902 physicians surveyed reported that they had written a prescription
for a lethal dose of medication.17 Participation is not
equal across the specialties. In a national survey, 10.8% of 3288 oncologists
reported having performed PAS during their career.33 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
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 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 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
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).
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, 37 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)
because patients may ask them about their beliefs and may choose to transfer
care to a physician who shares their beliefs.38
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, 39 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 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, 20, 41 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,
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, 42 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, 44 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 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). Not all options will be
morally acceptable to all patients or physicians.45 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 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, 47, 48
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, 49, 50 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 Moral questions have
been raised about such action in patients who can still swallow.45
Mr G appeared to equate PAS and euthanasia (a
common source of confusion)51 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
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 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
Relief of Suffering
Suffering is uniquely personal.53 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, 54 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 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 Frequently, quality
of life centers on the transcendent, existential questions of meaningfulness
and worthiness.42 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 The diagnosis of
depression in dying patients presents several challenges.57 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 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
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, 59
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 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, 31 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 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 Among patients in
Oregon who received lethal prescriptions, approximately one third died of their
disease without taking the lethal prescription.21 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
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, 48 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, 61 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 Respect for the
opposition of individuals and health care systems is specifically contained in
Oregon's law.62 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 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 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 Some families report
coming to respect their loved one's choice for PAS.27, 29 However, the
potential for complicated grief would exist if the death occurred in the
context of unresolved family conflict.64
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]).
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
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
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
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
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
Reviews and provides instructional and
evaluation materials focused on end-of-life care.
Innovations in End-of-Life Care
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) |
Perspectives on Care at the Close of Life
Section Editor: Margaret A. Winker, MD, Deputy Editor, JAMA.
1.
Emanuel EJ.
The history of euthanasia debates in the United States and Britain.
Ann Intern Med.
1994;121:793-802.
MEDLINE
2.
Miller FG, Quill TE, Brody H, Fletcher JC, Gostin LO, Meier DE.
Regulating physician-assisted death.
N Engl J Med.
1994;331:119-123.
MEDLINE
3.
Brody H.
Assisted death: a compassionate response to a medical failure.
N Engl J Med.
1992;327:1384-1388.
MEDLINE
4.
Quill TE, Cassel CK, Meier DE.
Care of the hopelessly ill: proposed clinical criteria for physician-assisted
suicide.
N Engl J Med.
1992;327:1380-1384.
MEDLINE
5.
Orentlicher D.
The legalization of physician-assisted suicide.
N Engl J Med.
1996;335:663-667.
MEDLINE
6.
Angell M.
The Supreme Court and physician-assisted suicide: the ultimate right.
N Engl J Med.
1997;336:50-53.
MEDLINE
7.
Pellegrino ED.
Compassion needs reason too.
JAMA.
1993;270:874-875.
MEDLINE
8.
Foley KM.
Competent care for the dying instead of physician-assisted suicide.
N Engl J Med.
1997;336:54-58.
MEDLINE
9.
Gaylin W, Kass LR, Pellegrino ED, Siegler M.
"Doctors must not kill."
JAMA.
1988;259:2139-2140.
MEDLINE
10.
Sulmasy DP.
Killing and allowing to die: another look.
J Law Med Ethics.
1998;26:55-64.
MEDLINE
11.
Council on Ethical and Judicial Affairs, American Medical Association.
Code of Medical Ethics: Current Opinions
With Annotations.
1996-1997 ed. Chicago, Ill: American Medical Association; 1997.
12.
Snyder L, Sulmasy DP.
Physician-assisted suicide.
Ann Intern Med.
2001;135:209-216.
MEDLINE
13.
Breitbart W, Rosenfeld BD, Passik SD.
Interest in physician-assisted suicide among ambulatory HIV-infected patients.
Am J Psychiatry.
1996;153:238-242.
MEDLINE
14.
Ganzini L, Johnston WS, McFarland BH, Tolle SW, Lee MA.
Attitudes of patients with amyotrophic lateral sclerosis and their care givers
toward assisted suicide.
N Engl J Med.
1998;339:967-973.
MEDLINE
15.
Jacobson JA, Kasworm EM, Battin MP, Botkin JR, Francis LP, Green D.
Decedents' reported preferences for physician-assisted death: a survey of
informants listed on death certificates in Utah.
J Clin Ethics.
1995;6:149-157.
MEDLINE
16.
Slome LR, Mitchell TF, Charlebois E, Benevedes JM, Abrams DI.
Physician-assisted suicide and patients with human immunodeficiency virus
disease.
N Engl J Med.
1997;336:417-421.
MEDLINE
17.
Meier DE, Emmons CA, Wallenstein S, Quill T, Morrison RS, Cassel CK.
A national survey of physician-assisted suicide and euthanasia in the United
States.
N Engl J Med.
1998;338:1193-1201.
MEDLINE
18.
Back AL, Wallace JI, Starks HE, Pearlman RA.
Physician-assisted suicide and euthanasia in Washington state: patient requests
and physician responses.
JAMA.
1996;275:919-925.
MEDLINE
19.
Lee MA, Nelson HD, Tilden VP, Ganzini L, Schmidt TA, Tolle SW.
Legalizing assisted suicide-views of physicians in Oregon.
N Engl J Med.
1996;334:310-315.
MEDLINE
20.
Block SD, Billings JA.
Patient requests to hasten death: evaluation and management in terminal care.
Arch Intern Med.
1994;154:2039-2047.
MEDLINE
21.
Hedberg K, Hopkins D, Southwick K.
Legalized physician-assisted suicide in Oregon, 2001.
N Engl J Med.
2002;346:450-452.
MEDLINE
22.
Quill TE.
Initiating end-of-life discussions with seriously ill patients: addressing the
"elephant" in the room.
JAMA.
2000;284:2502-2507.
ABSTRACT
| FULL TEXT
| PDF
| MEDLINE
23.
Quill TE, Cassel CK.
Nonabandonment: a control obligation for physicians.
Ann Intern Med.
1995;122:368-374.
MEDLINE
24.
Quill TE.
Death and dignity: a case of individualized decision making.
N Engl J Med.
1991;324:691-694.
MEDLINE
25.
Quill TE.
Doctor, I want to die: will you help me?
JAMA.
1993;270:870-873.
MEDLINE
26.
Reagan P.
Helen.
Lancet.
1999;353:1265-1267.
MEDLINE
27.
Rimer S.
With suicide, an admiral keeps command until the end.
New York Times.
January 12, 2002:A9. Available at: http://www.nytimes.com.
28.
Ganzini L, Nelson HD, Schmidt TA, Kraemer DF, DeLorit MA, Lee MA.
Physicians' experiences with the Oregon Death With Dignity Act.
N Engl J Med.
2000;342:557-563.
MEDLINE
29.
Sullivan AD, Hedberg K, Fleming DW.
Legalized physician-assisted suicide in Oregon: the second year.
N Engl J Med.
2000;342:598-604.
MEDLINE
30.
van der Maas PJ, van Delden JJ, Pijnenborg L, Looman CW.
Euthanasia and other medical decisions concerning the end of life.
Lancet North Am Ed.
1991;338:669-674.
MEDLINE
31.
Emanuel EJ, Fairclough DL, Emanuel LL.
Attitudes and desires related to euthanasia and physician–assisted suicide
among terminally ill patients and their caregivers.
JAMA.
2000;284:2460-2468.
ABSTRACT
| FULL TEXT
| PDF
| MEDLINE
32.
Veldink JH, Wokke JH, van der Wal G, Vianney de Jong JM, van den Berg LH.
Euthanasia and physician-assisted suicide among patients with amyotrophic
lateral sclerosis in the Netherlands.
N Engl J Med.
2002;346:1638-1644.
MEDLINE
33.
Emanuel EJ, Fairclough D, Clarridge BC, et al.
Attitudes and practices of US oncologists regarding euthanasia and
physician-assisted suicide.
Ann Intern Med.
2000;133:527-532.
MEDLINE
34.
Dutch legalize euthanasia the first such national law.
New York Times.
April 1, 2002:A9.
35.
State of Oregon and Peter A Rasmussen, et
al, v John Ashcroft, in his official capacity as United States
Attorney General, et al, Permanent Injunction.
Civil No. 01-1647-JO. Filed April 17, 2002, in the United States District Court
for the District of Oregon. Available at: http://www.ord.uscourts.gov/rulings/rulings.html.
Accessibility verified June 4, 2002.
36.
Directive. Dispensing of controlled substances to assist suicide.
66, Federal Register,
56607-56608, November 9, 2001. Available at: http://www.deadiversion.usdoj.gov/fed_regs/notices/2001/fr1109.htm.
Accessibility verified May 28, 2002.
37.
Haley K, ed, Lee M, ed, Task Force to Improve the Care of Terminally Ill
Oregonian.
The Death With Dignity Act: A Guide Book for
Health Care Professionals.
Portland: Oregon Health Sciences University Press; 1998.
38.
Ganzini L, Nelson HD, Lee MA, Kraemer DF, Schmidt TA, DeLorit MA.
Oregon physicians' attitudes about and experiences with end-of-life care since
passage of the Oregon Death With Dignity Act.
JAMA.
2001;285:2363-2369.
ABSTRACT
| FULL TEXT
| PDF
| MEDLINE
39.
Meier DE, Back AL, Morrison RS.
The inner life of physicians and care of the seriously ill.
JAMA.
2001;286:3007-3014.
ABSTRACT
| FULL TEXT
| PDF
| MEDLINE
40.
Tolle SW.
Measure 16: a wake-up call to medicine.
Sunday Oregonian.
November 13, 1994;C1, C4.
41.
Muskin PR.
The request to die: role for a psychodynamic perspective on physician-assisted
suicide.
JAMA.
1998;279:323-328.
ABSTRACT
| FULL TEXT
| PDF
| MEDLINE
42.
Block SD.
Psychological considerations, growth, and transcendence at the end of life: the
art of the possible.
JAMA.
2001;285:2898-2905.
ABSTRACT
| FULL TEXT
| PDF
| MEDLINE
43.
The SUPPORT Principal Investigators.
A controlled trial to improve care for seriously ill hospitalized patients: the
Study to Understand Prognoses and Preferences for Outcomes and Risks of
Treatment (SUPPORT).
JAMA.
1995;274:1591-1598.
MEDLINE
44.
Field MJ, ed, Cassel CK, ed.
Approaching Death: Improving Care at the End
of Life.
Washington, DC: National Academy Press; 1997.
45.
Jansen LA, Sulmasy DP.
Sedation, alimentation, hydration, and equivocation: careful conversation about
care at the end of life.
Ann Intern Med.
2002;136:845-849.
MEDLINE
46.
Quill TE, Byock IR.
Responding to intractable terminal suffering: the role of terminal sedation and
voluntary refusal of food and fluids.
Ann Intern Med.
2000;132:408-414.
MEDLINE
47.
Sulmasy D, Pellegrino ED.
The rule of double effect: clearing up the double talk.
Arch Intern Med.
1999;159:545-550.
FULL TEXT
| PDF
| MEDLINE
48.
American College of Physicians.
Ethics manual.
Ann Intern Med.
1998;128:576-594.
MEDLINE
49.
Quill TE, Lo B, Brock DW.
Palliative options of last resort: a comparison of voluntarily stopping eating
and drinking, terminal sedation, physician-assisted suicide, and voluntary
active euthanasia.
JAMA.
1997;278:2099-2104.
MEDLINE
50.
Quill T, Lee B, Nunn S.
Palliative treatments of last resort: choosing the least harmful alternative.
Ann Intern Med.
2000;132:488-493.
MEDLINE
51.
Silveira MJ, DiPiero A, Gerrity MS, Feudtner C.
Patients' knowledge of options at the end of life: ignorance in the face of
death.
JAMA.
2000;284:2483-2488.
ABSTRACT
| FULL TEXT
| PDF
| MEDLINE
52.
Singer PA, Martin DK, Kelner M.
Quality end-of-life care: patient's perspectives.
JAMA.
1999;281:163-168.
ABSTRACT
| FULL TEXT
| PDF
| MEDLINE
53.
Cassell EJ.
The nature of suffering and the goals of medicine.
N Engl J Med.
1982;306:639-645.
MEDLINE
54.
Byock IR.
When suffering persists...
J Palliat Care.
1994;10:8-13.
MEDLINE
55.
Cohan SR, Mount BM, Tomas JJ, Mount LF.
Existential well-being is an important determinant of the quality of life:
evidence from the McGill Quality of Life Questionnaire.
Cancer.
1996;77:576-586.
MEDLINE
56.
Passik SD, Dugan W, McDonald MV, Rosenfeld B, Theobald DE, Edgerton S.
Oncologists' recognition of depression in their patients with cancer.
J Clin Oncol.
1998;16:1594-1600.
MEDLINE
57.
Block SD for the ACP-ASIM End-of-Life Care Consensus Panel.
Assessing and managing depression in the terminally ill patient.
Ann Intern Med.
2000;132:209-218.
MEDLINE
58.
Chochinov HM, Wilson KG, Enns M, Lander S.
"Are you depressed?" Screening for depression in the terminally ill.
Am J Psychiatry.
1997;154:674-676.
MEDLINE
59.
Breitbart W, Rosenfeld B, Pessin H, et al.
Depression, hopelessness, and desire for hastened death in terminally ill patients
with cancer.
JAMA.
2000;284:2907-2911.
ABSTRACT
| FULL TEXT
| PDF
| MEDLINE
60.
Colburn D.
Death as unpredictable as life.
The Oregonian.
May 27, 2002:A1-A10.
61.
Lynn J.
Serving patients who may die soon and their families: the role of hospice and
other services.
JAMA.
2001;285:925-932.
ABSTRACT
| FULL TEXT
| PDF
| MEDLINE
62.
The Death With Dignity Act.
Ore Rev Stat. 127.800-127.897.
63.
Moyers B.
On Our Own Terms: Moyers on Dying
[videotape series].
New York, NY: Public Affairs Television Inc and presented on PBS by
Thirteen/WNET New York; 2000.
64.
Prigerson HG, Jacobs SC.
Caring for bereaved patients: "all the doctors just suddenly go."
JAMA.
2001;286:1369-1376.
ABSTRACT
| FULL TEXT
| PDF
| MEDLINE
Edward E.
Rylander, M.D.
Diplomat American
Board of Family Practice.
Diplomat American
Board of Palliative Medicine.