to Intractable Terminal Suffering: The Role of Terminal Sedation and Voluntary
Refusal of Food and Fluids
E. Quill, MD; Ira R. Byock, MD, for the ACP-ASIM End-of-Life Care Consensus
Intern Med. 2000;132:408-414.
provided by a skilled, multidisciplinary team, palliative care is highly
effective at addressing the physical, psychological, social, and spiritual
needs of dying patients and their families. However, some patients who have
witnessed harsh death want reassurance that they can escape if their suffering
becomes intolerable. In addition, a small percentage of terminally ill patients
receiving comprehensive care reach a point at which their suffering becomes
severe and unacceptable despite unrestrained palliative efforts; some of
these patients request that death be hastened. This paper presents terminal
sedation and voluntary refusal of hydration and nutrition as potential last
resorts that can be used to address the needs of such patients. These two
practices allow clinicians to address a much wider range of intractable
end-of-life suffering than physician-assisted suicide (even if it were legal)
and can also provide alternatives for patients, families, and clinicians
who are morally opposed to physician-assisted suicide. This paper will define
the two practices, distinguish them from more standard palliative care interventions
and from physician-assisted suicide, illustrate them with a real clinical
scenario, provide potential guidelines and practicalities, and explore their
moral and legal status. Although medicine cannot sanitize dying or provide
perfect answers for all challenging end-of-life clinical problems, terminal
sedation and voluntary refusal of hydration and nutrition substantially
increase patients' choices at this inherently challenging time.
Palliative care, which
addresses the multiple physical, psychosocial, and spiritual dimensions of
suffering, should be the standard of care for the dying (1-5).
Such care is usually effective (6-12), but some patients
develop intolerable suffering despite excellent care (13-17).
This paper discusses terminal sedation and voluntary refusal of hydration
and nutrition as potential last-resort responses to severe, unrelievable end-of-life
suffering. As part of their palliative care skills and services, clinicians
must have strategies for responding to the troubling problems of patients
who experience such suffering. These two options provide a means of response
for patients, families, and clinicians who oppose physician-assisted suicide.
BG was a 66-year-old
retired radiologist who developed a large glioblastoma in the left parietal
lobe. After extensive discussion, he elected to pursue a purely symptom-oriented
approach. BG was married with two grown children. He was a proud, independent
person who valued his intellectual abilities and physical integrity. He
was a lifelong Unitarian. From his experience as a radiologist, he knew
the natural history and potential burdens of aggressive treatment of similar
brain tumors. He did not want to die but was fearful of becoming physically
dependent and intellectually impaired.
The treatment goal was
to manage his symptoms so that he could have quality time with his wife
and children. Dexamethasone and antiseizure medications were the central
symptom-relieving measures. Initially, his right-side weakness and headache
improved for several weeks as he and his family worked to achieve closure
in their lives together.
Unfortunately, BG abruptly
developed right-side weakness and intermittent confusion secondary to focal
motor seizures, and his symptoms steadily worsened despite treatment. Sensing
his physical and intellectual deterioration, BG wanted to "get on with it
before I can't do anything for myself." Further mental and physical deterioration
became more frightening to him than death. He hoped he could die quickly
by stopping corticosteroid therapy. BG's physician urged him to continue
his medications for symptom relief, but BG did not want to take anything
that could in any way prolong his life. At his internist's insistence, BG
agreed to a single visit with a psychiatrist, who confirmed that BG understood
his treatment options and was not clinically depressed. After saying his
good-byes to friends and family, BG discontinued dexamethasone therapy.
To BG's consternation,
he did not become comatose or die. Instead, his right-side weakness worsened
and his seizures became more frequent. BG found his situation intolerable.
He did not explicitly request medication that could be taken in a lethal
dose, but his desire for a hastened death was clear. "I just want to go
to sleep and not wake up," he said.
All members of the team
were committed to relieving his distress but had different views about explicitly
assisting death. They searched for common ground while continuing to adjust
his seizure management, support his family, and bring some quality to his
days. None of their efforts changed BG's certainty that he did not want
to continue living under his current circumstances. He began to consider
refusing all food and fluids and asked his physician what it would be like
and whether she would support him.
care is highly effective (6-12), but survey data show
that 5% to 35% of patients in hospice programs describe their pain as "severe"
in the last week of life and that 25% describe their shortness of breath as
"unbearable" (15). On occasion, such symptoms as delirium,
bleeding, weakness, open wounds, profound weight loss, and seizures challenge
the most experienced hospice teams.
In terminally ill persons,
requests for physician-assisted death are infrequently triggered by unrelieved
pain alone but more commonly result from a combination of physical symptoms
and debility, weakness, lack of meaning, and weariness of dying (18-21).
Some of these patients are clinically depressed, and others are not (22-25).
Usually, their suffering is a complex amalgam of pain; physical symptoms;
and psychosocial, existential, and spiritual issues, which are balanced by
hope, love, connection, and meaning (26-30). Understanding
each patient's unique situation and responding to it in a multifaceted way
is the crux of palliative medicine. Suffering can arise from a sense of impending
disintegration of one's person (26) or a loss of meaning
(27) that may have little to do with uncontrolled physical
BG feared becoming a
burden to his family and developing progressive loss of mental capacity
more than he feared uncontrolled pain. He had no moral reservations about
hastening death under his current circumstances. For him, the humaneness
and effectiveness of the intervention were more important than whether it
required his physician's "active" or "passive" assistance. His physician
had moral and legal reservations about hastening death but was deeply committed
to BG's comfort and wanted to be responsive to the dilemma that he faced.
of the Practices
Terminal sedation is the
use of high doses of sedatives to relieve extremes of physical distress. It
is not restricted to end-of-life care and is sometimes used as a temporizing
measure in trauma, burn, postsurgical, and intensive care. Although rendering
a patient unconscious to escape suffering is an extraordinary measure, withholding
such treatment in certain circumstances would be inhumane. Because most of
the patients who receive heavy sedation are expected to recover, careful attention
is paid to maintaining adequate ventilation, hydration, and nutrition.
When applied to patients
who have no substantial prospect of recovery, terminal sedation refers to
a similar last-resort clinical response to extreme, unrelieved physical suffering
(14, 31-36). The purpose of the medications is to render
the patient unconscious to relieve suffering, not to intentionally end his
or her life (37). However, in the context of far-advanced
disease and expected death, artificial nutrition, hydration, antibiotics,
mechanical ventilation, and other life-prolonging interventions are not instituted
and are usually withdrawn if they are already in place. These measures are
withheld during terminal sedation because they could prolong the dying process
without contributing to the quality of the patient's remaining life. In the
context of end-of-life care, the component practices of intensive symptom
management and withholding life-sustaining treatment have widespread ethical
and legal support (31, 38-40). However, because death
is a foreseeable, inevitable outcome of the aggregated circumstances of the
patient's condition and interventions, the act can be more morally complex
and ambiguous than is often acknowledged (31, 40-43).
Terminal sedation should
be distinguished from the common occurrence of a dying patient gradually slipping
into an obtunded state as death approaches; this occurrence is a combination
of the metabolic changes of dying and the results of usual palliative treatments.
Terminal sedation is also distinct from the sedation that occasionally occurs
as an unintended side effect of high-dose opioid therapy, which is used to
relieve severe terminal pain (37). In contrast, terminal
sedation involves an explicit decision to render the patient unconscious to
prevent or respond to otherwise unrelievable physical distress. Terminal sedation
is also used regularly in critical care practice to treat symptoms of suffocation
in dying patients who are discontinuing mechanical ventilation (44).
Cessation of Eating and Drinking
In the context of far-advanced
illness, a competent patient can consciously choose to refuse food and fluid
(31, 45-48). When a patient who is still capable of
eating and drinking makes this decision with the intention to hasten death,
it can be distinguished from the natural anorexia and loss of thirst that
frequently accompany the end stages of dying. Some consider such decisions
to be a form of suicide (31). However, because such
patients view continued eating and drinking as measures that prolong life
without value, others argue that the decision to stop eating and drinking
can be categorized as a decision to forgo life-sustaining therapy (45-48).
The patient's decision to refuse food and fluids has the ethical advantage
of being neither physician ordered nor directed. In practice, however, honoring
the decision requires the support of the family, physician, and health care
team, who must provide appropriate palliative care as the dying process unfolds.
During food and fluid
fasts, any uncomfortable emerging symptoms will need palliation. In the context
of advanced oncologic illnesses, hunger is rare and transient and symptoms
of dry mouth and throat usually respond to assiduous mouth care (49).
Dying under these circumstances can take several days to a few weeks, depending
on the patient's disease burden and nutritional and metabolic state at the
outset. Doubts on the part of the family or physician may arise as the process
unfolds, especially if the process is prolonged or the patient develops preterminal
delirium. If in the context of a subsequent period of confusion or delirium
the patient persistently calls out for a specific food or beverage, it is
reasonable to offer it. If such requests persist, the overall plan should
be reevaluated. If a patient becomes severely agitated as death approaches,
intensive symptom management, including terminal sedation, may be indicated
to ensure comfort.
and Legal Status
Although legal precedents
guiding terminal sedation and cessation of eating and drinking are less developed
than those involving other end-of-life decisions, the June 1997 U.S. Supreme
Court decision on assisted suicide suggested that these practices are permitted
under current law (50-52). The Court unequivocally supported
the patient's right to refuse treatment, even if the intention is to hasten
death, on the basis of the patient's right to bodily integrity. Furthermore,
Justices O'Connor and Souter each wrote a concurrence supporting the use of
medication to alleviate the pain and suffering of terminally ill patients,
even to the point of causing unconsciousness or hastening death (51,
Public and professional
discussion of these practices is now under way (31, 37-42,
48, 53). In Supreme Court briefs opposing physician-assisted suicide,
hospice, palliative care, and geriatric groups stated that terminal sedation
and cessation of eating and drinking were morally and clinically preferable
last-resort alternatives because death is not directly or intentionally hastened
by the physician (54, 55). In addition, in the context
of advanced disease, sedation and patient refusal to eat and drink can be
used to respond to a much wider range of clinical circumstances than physician-assisted
suicide, even if the latter were legal. Both sedation and refusal to eat and
drink can be undertaken and supported within usual health care settings.
However, several challenging
moral questions remain. Are these practices fundamentally different from physician-assisted
suicide? An in-depth comparison of these last-resort options has been presented
elsewhere (31, 48). Some clinicians, patients, and families
believe that the differences between such practices and assisted suicide are
fundamental (39, 41, 42, 48, 53). For others, all such
practices, including assisted suicide, are more similar than different (31,
37, 40). Many who believe that physicians should never intentionally hasten
death consider terminal sedation the end of the continuum of symptom management.
Because voluntary cessation of eating and drinking is by definition a patient
decision, the clinician's role is one of continued care and support. Conversely,
a clinician who counters a patient's decision by forcing food or artificial
nutrition and hydration risks committing assault. Many clinicians may find
that these options provide morally acceptable ways to respond to severe terminal
suffering without violating their consciences or abandoning the patient.
When a patient stops eating
and drinking to hasten death, is clinical support for the decision equivalent
to assisted suicide? The moral evaluation of clinical practice in these situations
depends in part on their clinical context. For a patient with anorexia nervosa,
clinical depression, or mildly symptomatic illness, cessation of eating and
drinking would be considered a form of suicide that should be prevented by
appropriate interventions. In contrast, for a patient with severe, unrelieved
suffering and advanced, incurable illness, cessation of eating and drinking
might be considered part of the right to refuse treatment (31,
Some clinicians and ethicists,
however, consider any and all intentional hastening of death by a patient
to constitute suicide, making physician support of such choices unacceptable.
An absolute stance of this nature creates a double bind for patients who are
ready for death and desire the continued help of their physician. If such
patients are honest about their intention, their request for physician support
cannot be granted. To maintain a therapeutic relationship and be guaranteed
continued symptom management, they and their families may have to collude
in a deception and conceal their decision to stop eating and drinking.
Are physicians required
to support requests for these practices? All physicians should fully explore
patient requests for terminal sedation or inquiries about voluntary cessation
of eating and drinking to ensure that they are not emanating from unrecognized
depression or symptoms that may respond to palliative measures (56,
57). However, physicians should not be required to participate in these
processes if doing so violates their fundamental moral precepts (31).
If physicians cannot find common ground with a patient, they have a responsibility
to obtain palliative care or ethics consultations and to transfer care to
more receptive physicians.
questions provide subjects for future research, description, and discussion.
How frequently will sedation or refusal of food and drink be needed in the
context of state-of-the-art palliative care? How acceptable will either of
these possibilities be to patients, families, and health care providers? Will
predictable availability of these last-resort options diminish patients' fears
that their physicians will not respond to severe terminal suffering or lessen
public interest in assisted suicide? Will discussion of these options make
some patients feel pressured or more fearful about physician power and potential
abuse? If care of this nature were predictably available, how many patients
would still prefer assisted suicide and how many physicians would still covertly
break the law by providing assistance? Do patients, families, and physicians
see these actions as morally different from physician-assisted suicide or
euthanasia? If voluntary cessation of eating and drinking is considered a
variation of forgoing life-sustaining treatment, should it be made available
to incurably ill and suffering patients whose conditions are not imminently
The published guidelines
for terminal sedation and voluntary cessation of eating and drinking are summarized
1 (31, 33). Informed consent, which includes assessing
the patient's capacity to comprehend the treatment and the available alternatives,
is one cornerstone of these guidelines (56, 57). Clinicians
should carefully screen terminally ill patients for clinical depression because
it is extremely prevalent and can be difficult to diagnose (24-28).
Although full decision-making capacity is an absolute requirement for voluntary
cessation of eating and drinking, terminal sedation may sometimes be needed
in acute symptomatic emergencies when the dying patient cannot respond. In
such severe circumstances, family members, consultants, and other members
of the health care team may have to represent the patient's values.
A second cornerstone is
the presence of severe suffering that cannot be relieved by other available
means. The main indication for terminal sedation is usually severe, uncontrolled
physical suffering, such as intractable pain, dyspnea, seizures, or delirium.
Patients who have more unrelenting, persistent, unacceptable symptoms, such
as extreme fatigue, weakness, or debility, may consider refusing food and
fluids. If either option is being considered by clinicians, patients, or families
when the suffering person is not imminently dying, assessments should always
include second opinions from mental health, ethics, and palliative care specialists.
These guidelines represent
the minimum requirements for these measures. Terminal sedation should be used
only in the most difficult cases, which are typically marked by intense discussion
of the clinical and ethical issues on the part of the physician, the clinical
team, the family, and the patient. Similarly, a patient's decision to stop
eating and drinking must include thorough evaluation for depression and spiritual
suffering and assiduous clarification of motives and alternatives with the
patient, family, and professional caregivers. The struggle experienced by
the clinical team involved with these cases is a mark of the authenticity
of care and contributes to the moral acceptability of the choices made.
In response to BG's
decision to stop eating and drinking, his physician discussed the likely
clinical course and the symptoms he would experience. She promised to use
medications for sedation if his suffering became intolerable during the
dying process. His physician reassured him that the process was usually
comfortable and that together they would address any discomfort that arose.
BG felt liberated by having made a choice that he could openly pursue at
his own volition. Two weeks would probably pass between the decision to
refuse food and fluids and death, but BG did not view this prospect as an
excessive burden. It would allow him some time to again say good-bye to
his family, but with a predictable beginning, middle, and end. BG discussed
his decision with his wife, children, and minister and the psychiatric consultant.
All severely ill patients
who experience substantial suffering and have a poor prognosis should be informed
about the potential of palliative care to address their symptoms (58,
59). However, it would be burdensome and inappropriate to discuss these
last-resort options with all patients who have late-stage illness. Information
about terminal sedation and cessation of eating and drinking becomes important
when patients express fears about dying badly or explicitly request a hastened
death because of unacceptable suffering (56, 57). Such
information must be presented with sensitivity, however, because some patients
may consider discussion of these options coercive, potentially requiring them
to justify a decision to continue living. Other patients may find the prospect
of spending their final days in an iatrogenic coma to be meaningless and undignified
and may prefer a more decisive action, such as assisted suicide.
BG stopped eating and
drinking. The initial week was physically comfortable and personally meaningful.
BG's family shared stories, played cards, and listened to music. BG took
antiseizure medications with sips of water but absolutely nothing else orally.
Morphine by continuous subcutaneous infusion at an initial dosage of 1.0
mg/h controlled his headaches without causing sedation. His mouth was kept
moist with ice chips and swabs, but he was careful not to swallow any of
the liquid. After 9 days, he could be roused but spent most of the day and
Although the patient's
refusal of food and fluids technically does not require the physician's participation,
a physician should be part of the team who assesses the patient's request
and provides palliative care as the process unfolds. Therefore, physicians
who oppose their patient's decision from the outset must decide whether they
can provide all forms of indicated palliation. If the physician feels morally
unable to do so, transfer of care to another provider should be considered.
On day 10, BG became
confused and agitated and began having hallucinations. The peace and comfort
that he and his family had achieved began to unravel. BG was now incapable
of informed consent but had previously given permission for sedation if
this problem arose. After discussions with his family, BG was started on
a low-dose subcutaneous infusion of midazolam for treatment of seizures
and agitation. The plan of care was to use whatever dose was required to
control seizures and agitation. The initial dosage was 0.5 mg/h, with bolus
doses of 0.5 to 1 mg ordered up to every 15 minutes as needed. The option
of transferring BG to an inpatient unit was explored, but the family preferred
to keep him at home. Around-the-clock home nursing was arranged under the
"continuous care" provision of the Medicare hospice benefit program. After
several bolus doses and adjustment of the infusion to 2.5 mg/h during the
first 6 hours, BG seemed to be sleeping comfortably. No attempt was made
to restore consciousness, and no further increases in medication were needed
to maintain sedation.
In the context of advanced
illness and imminent death, sedation can be achieved with a barbiturate or
benzodiazepine infusion, which should be rapidly increased until the patient
is adequately sedated and seems comfortable. A level of sedation that eliminates
signs of discomfort (such as stiffening or grimacing spontaneously or with
routine repositioning and nursing care) is maintained until the patient dies.
2 shows potential starting dosages and strategies for increasing dosages
and monitoring. Depending on the severity of the patient's physiologic condition
at the onset of the procedure, the interval from initiation to death is usually
hours to days. Continuous sedation usually requires a subcutaneous or intravenous
infusion and intensive involvement by the health care team for observation,
monitoring, and support. When a dying patient requires sedation, opioids for
pain and other symptom-relieving measures should also be continued to avoid
the possibility of unobservable pain or opioid withdrawal. However, opioids
are generally ineffective at inducing sedation and are not the medications
BG died quietly approximately
24 hours later in his home, surrounded by his family. BG's family had remained
resolute in their support for his decision and firmly committed to keeping
him at home. However, they also continued to have emotional family discussions
and at times struggled with whether they had done too little or too much
to help him die peacefully. They drew comfort from recognizing that they
had kept BG's values in the forefront and made the best of a potentially
Medicine cannot sanitize
dying or provide perfect solutions for all clinical dilemmas. When unacceptable
suffering persists despite standard palliative measures, terminal sedation
and voluntary refusal of food and fluids are imperfect but useful last-resort
options that can be openly pursued. Patients and their families who fear that
physicians will not respond to extreme suffering will be reassured when such
options are predictably made available (65). Relevant
professional bodies can help by adopting policy statements that attest to
the ethical and professional acceptability of these components of palliative
Author and Article Information
This paper was written
by Timothy E. Quill, MD, and Ira R. Byock, MD, for the American College of
Physicians-American Society of Internal Medicine (ACP-ASIM) End-of-Life Care
Consensus Panel. Members of the ACP-ASIM End-of-Life Care Consensus Panel
were Bernard Lo, MD (Chair); Janet Abrahm, MD; Susan Block, MD; William
Breitbart, MD; Ira R. Byock, MD; Kathy Faber-Langendoen, MD; Lloyd W. Kitchens
Jr., MD; Paul Lanken, MD; Joanne Lynn, MD; Diane Meier, MD; Timothy E. Quill,
MD; George Thibault, MD; and James Tulsky, MD. Primary staff to the Panel
were Lois Snyder, JD (Project Director), and Jason Karlawish, MD. This
paper was reviewed and approved by the Ethics and Human Rights Committee,
although it does not represent official ACP-ASIM policy. Members of the Ethics
and Human Rights Committee were Risa Lavizzo-Mourey, MD (Chair); Joanne
Lynn, MD; Richard J. Carroll, MD; David A. Fleming, MD; Steven H. Miles, MD;
Gail J. Povar, MD; James A. Tulsky, MD; Alan L. Gordon, MD; S.Y. Tan, MD,
JD; Vincent Herrin, MD; and Lee J. Dunn Jr., JD, LLM.
The Greenwall Foundation provided support to the End-of-Life Care panel.
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Current Author Addresses:
Dr. Quill: Department of Medicine, The Genesee Hospital, 224 Alexander Street,
Rochester, NY 14607.
Dr. Byock: The Palliative
Care Service, 341 University Avenue, Missoula, MT 59801.
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