ETHICAL, LEGAL, AND SOCIAL ASPECTS OF MEDICAL CARE
Session II: Withholding Life-Prolonging Interventions
|1300 - 1420
||Joanne Lynn, M.D.|
|1430 - 1550
Prioritized Learning Objectives:
To know major ethical and legal considerations regarding the withdrawing
and withholding of hydration and ventilation.
To discuss feelings physicians may have when treating severely ill
To consider relieving patients' suffering even when this means using drugs
which could hasten their death.
To understand relative strengths and weaknesses of estimating the patient's
preference and assessing their benefit/burden ratio when determining
incompetent patients' treatment.
To appreciate strengths and weaknesses of, and distinctions between
ordinary and extraordinary treatment, starting and stopping treatment,
omission and commission, and of the doctrine of double effect.
To know recent representative court decisions and controversial legal
issues regarding withholding and withdrawing food and water.
Computerized Learning Experience: Lesson E
Beauchamp, TL, Childress, JF: Principles of Biomedical Ethics,
Oxford Press, 4th Edition, 219-235, 1994.
Edwards, MJ, Tolle, SW: Disconnecting a Ventilator at the Request of a
Patient Who Knows He Will Then Die: The Doctor's Anguish. Annals of
Internal Medicine 117:254-256, 1992.
Quill, TE: You Promised Me I Wouldn't Die Like This!: A Bad Death as a
Medical Emergency. Arch Intern Med 155: 1250-1254, 1995.
Prioritized Recommended Reading on Reserve in the Library:
Nicholson RH, Kody HG, Ulshaefer T and Qiu RZ: No Feeding Tubes for Me.
Hastings Center Report, June 1987, pp. 23-26.
(Contemporary views on withholding a nasogastric feeding tube from British,
German, and Chinese perspectives.)
Areen J: The Legal Status of Consent Obtained from Families of Adult
Patients to Withhold or Withdraw Treatment. JAMA 258:229-236, 1987.
(A current description of laws pertaining to family consent. The author
points out that physicians cannot safely rely on family consent in the absence
of legal authority, but since the courts are increasingly providing this
authority, physicians who rely on family consent are unlikely to be sued
successfully unless families are not acting in "good faith".)
Morse: Final Requests: Preparing for Death. The Washington Post,
July 15, 1985, D5.
(A discussion of the current status of two means by which patients can
issue advance directives, the living will and the durable power of attorney.)
Quilty WJ: Ethics of Extraordinary Nutritional Support. Journal of the
American Geriatrics Society 32:943-944, 1984.
(An Australian physician's views on whether or not hyperalimentation should
be given to an 89-year old man who had Alzheimer's disease and had suffered a
cerebrovascular accident which left him stuporous.)
Curran WJ: Law-Medicine Notes/Defining Appropriate Medical Care:Providing
Nutrients and Hydration for the Dying. NEJM 313:940-942, 1985.
(A criticism of the court's solution in the Conroy case.)
Wanzer, SH, Federman, DD, Adelstein, SJ, et al. The Physician's
Responsibility Toward Hopelessly Ill Patients. The New England Journal of
Medicine 320(13):1989, 844-849.
(A state of the art document discussing among other important issues the
use of extra analgesics which may shorten a patient's life.)
Marcus, E: Living with Court Limits on "Right to Die". The Washington
Post, June 2, 1990, A8.
(A short article on the implications of the Cruzan decision namely that
patients should be encouraged to indicate advance directives)
Engelhardt and Rie: Intensive Care Units, Scarce Resources and Conflicting
Principles of Justice. JAMA 255:1159-1164, 1986.
(A discussion of difficulties encountered in attempting to design a system
to distribute scarce resources justly.)
Smedira, NG, et al.: Withholding and Withdrawal of Life Support from the
Critically Ill. New England Journal of Medicine, 322(5):1989, 309-314.
(A study indicating that about half of the deaths of patients dying in an
ICU are due to their care being withheld or withdrawn.)
Emanuel, EJ and Emanuel, LL: The Promise of a Good Death. The
Lancet, 351: 1998, 21-29.
(This article focuses on the need to provide better care to patients over
weeks and months when they have a prodrome before dying, such as patients with
congestive heart failure and COPD.
Booth, W: Oregon Suicide Is Called the First Under Law Legalizing Doctor
Role. The Washington Post, March 16, 1998. A7.
(This article, in addition to presenting information and some pros and cons
of the new law, describes the first patient who used it, a woman in her
mid-eighties with breast cancer.)
Lowe, AD: Feeling the Final Exit. ABA Journal, September 1997,
(This article provides a succinct summary of the recent Supreme Court
holdings regarding physician-assisted suicide and it discusses some of the key
considerations regarding this practice, as well.)
INTRODUCTION TO SESSION II
September 1, 1998
The focus for Session II will be on the care of patients who are reaching the
end of their lives. Joanne Lynn, a world-renowned geriatric and hospice
physician, will present state-of-the-art approaches to the care of dying
In general, when competent patients have terminal illness, they can refuse
any measures which would prolong their lives without their refusals being
construed as a suicide attempt. They can, for example, refuse treatment with
chemotherapy for cancer.
Problems arise in regard to what should count as terminal illness. If, for
example, a patient with early Alzheimer's Disease refuses a potentially life
saving treatment, such as penicillin for pneumonia, the nature of the patient's
refusal may be in doubt: Should the patient's refusal be considered "valid" or
should it be more construed as a "suicidal equivalent" stemming from depression?
When patients have terminal illness, there is an ethical and legal consensus
that they should be given as much pain medication as necessary to provide
maximal comfort. Careproviders cannot give patients doses of analgesics which
they know will kill them. As long as careproviders' intent is to relieve
patients' pain however, they may do so even if the medication could trigger
patients' death prematurely by impairing patients' respiratory drive.
Some physicians believe in the sanctity of life so that they would not give
excessive doses of analgesics if this could hasten death. This unwillingness to
provide relief from pain could be to a patient's detriment. In my view,
physicians holding such a view, at a minimum, should inform patients who may
face this situation, that they hold this personal view. Preferably, they should
treat patients whose likelihood of encountering this situation is negligible.
Patients who do not have an imminently terminal condition, in most instances,
also can refuse life sustaining treatment. Patients with amyotrophic lateral
sclerosis, for example, may refuse ventilary support which could sustain their
life for years.
At one time it was believed that it was preferable, at least legally, not to
start patients on a respirator, than to discontinue it later. Ethically and
legally, the opposite is now the case, because unless artificial ventilation is
initiated, it is often unclear how a patient will tolerate this experience.
Some physicians oppose withdrawing artificial ventilation because they
believe -- rightfully -- that dying by suffocation is a "terrible death".
Patients' potential agony can be eliminated, however, by use of medications such
as morphine and valium. If a patient, even with these medications, finds the
experience of having ventilation withdrawn too stressful, ventilation can be
Whether to withdraw ventilation from infants can be especially problematic
since infants cannot indicate their preferences. The decision is best made by
assessing infants' benefits and burdens, which may be difficult. Does, for
instance, the pleasure an infant gets from hugs outweigh the burden of
experiencing artificial respiration and of undergoing such procedures as being
suctioned? The decisive consideration may sometimes be who should make the
decision. This usually should be the parents since they are the ones most
closely involved. Yet, if they are overly involved, their ability to assess
their infant's interests may be highly impaired.
Not too long ago, it was felt that providing food and water to patients was
ethically equivalent to providing comfort to patients by touching them. More
recently, withholding artificial nutrition and hydration has been construed as
equivalent to withholding other interventions.
As with ventilation, some care providers are unwilling to withdraw nutrition
and hydration because they believe that dying from hunger or thirst is a
terrible way to die. In many patients with serious illness, however, the
experience of hunger and thirst differs from that of persons who are healthy who
would, of course, experience substantial discomfort. Unhealthy persons may not
want to eat and the effects of dehydration due to not drinking may diminish
rather than increase pain. Further, if discomfort occurs when patients go
without artificial nutrition and hydration, medications such as those named
previously can be given to alleviate it, or if their conditions become overly
burdensome, nutrition and hydration can be initiated.
One such dilemma arose recently in New Jersey and involved an 84-year old
terminally ill woman, Claire Conroy, who was mentally incompetent. Her nephew,
her sole living relative, sought judicial authorization to have her nasogastric
tube removed so that she could die. The trial court decided to permit removal of
the tube, but the intermediate appellate court reversed this holding. On appeal,
the New Jersey Supreme Court ruled that a nasogastric tube is a form of
"artificial feeding" and, as such, may be classified as a medical procedure
which may be withdrawn from a dying patient.
An incompetent patient is entitled to the same respect as a competent
patient. If, for example, an incompetent patient has a terminal illness, is
suffering, and has previously stated that he wants life-prolonging treatments
withheld, ethically, his wish should be respected even if his family objects.
Legally,a patient can best express his preference in such instances by issuing
an advance health care directive such as a living will or by appointing a
durable power of attorney.
Living wills can provide physicians immunity for withholding or withdrawing
treatment from incompetent patients who are terminally ill. Appointing a durable
power of attorney is a legal means by which patients can enable others to make
decisions for them if they become incompetent. Its use is recognized in all
states, but its practicality may be limited because many patients tend to deny
their prognosis, especially when they have an illness, such as Alzheimer's
Disease, which is slowly progressive. Exploring these options early in the
course of terminal illness may enable patients to be more active in their own
care. Sometimes this requires initiative on the part of the physician. When
homosexual patients who have AIDS are estranged from family members, for
example, physicians might take initiative to inquire if they wish to appoint a
In principle, for a patient to be considered legally incompetent, this
judgment should be made by a court and a legal guardian appointed. To an
increasing extent, physicians are willing to act without legal authority when
the patient's best interest and expressed preferences correspond with the
family's preferences. Since the family or next of kin would most likely be
appointed surrogate decisionmakers if a guardian were appointed by a court, the
legal risk to physicians acting in the absence of express legal authority is
likely to be minimal.
Generally, a formal declaration of incompetence and the appointment of a
guardian should be considered when treatment is major, the illness is
progressing, or the patient is difficult to manage. A guardian's authority may
be limited, however, and patients found incompetent to refuse psychiatric
treatment may remain competent to refuse medical intervention. Physicians,
therefore, must know the law of the jurisdiction in which they practice. If, for
example, they are in doubt as to a guardian's authority, they should request to
see the court order of appointment or contact the appointing court directly.
When patients are permanently comatose and treatment is futile, whether
treatment can be withheld or withdrawn may be decided on the basis of the
"subjective" standard (i.e., what is presumed the patient would have wanted), or
the "objective" patient standard (i.e., what most patients in the same situation
would want, taking into account the patient's particular burdens and
benefits).The former standard most respects patients' individuality by
permitting family members or others closest to the patient to implement
patients' personal desires. It allows more possibility, however, that those
speculating regarding the patient's preferences, knowingly or unknowingly, may
impose their biases. Ms. Mary Hier, a woman in her nineties was irreversibly
incompetent, for example, and pulled out her gastrostomy tube. Her surgeon
testified that he believed she didn't want it reinserted, but later acknowledged
that he had expressed this opinion in part because he wanted to save taxpayers'
What kinds of evidence accurately indicates patient preference? The patient's
pulling out a nasogastric or gastrostomy tube? The patient's groaning as if in
pain when moved? The patient's seeming to like ice cream? All have been cited as
evidence in recent cases. What problems do you see in using these as evidence of
a patient's "true" preference?
A key determination when the objective patient standard is used is which
intervention would cause the least suffering. Physicians should know what other
patients in the same situations tend to experience. Dying by suffocation, for
instance, is an agonizing experience, but a patient can remain relatively serene
if he is given morphine and valium prior to being taken off a respirator. If, on
the other hand, the patient experiences distress, the respirator could be
reconnected. As a second example, most healthy persons feel hungry and thirsty
when food or water is withheld. Patients with cancer often experience little
When patients with terminal illness have severe pain but are competent,
physicians should assure that they receive medication to relieve pain. In
hospices, physicians attempt to relieve suffering even when this might
precipitate death by compromising respiration; they have not been prosecuted.
Ethically, a competent patient should be allowed to choose whether or not he
wishes to risk dying prematurely in order (hopefully) to obtain relief from his
pain. Accordingly, an incompetent patient should have as much access to pain
relief as a competent patient or else the discrimination between the two would
When a patient is irreversibly incompetent, who should decide what treatment
the patient receives? In the Quinlan case, the court decided that this decision
should be made by the patient's family and physician and an ethics committee.
The ethics committee in this case was intended to insure that the medical
conclusions were reasonable, not to decide life or death. In Massachusetts, such
decisions must be made by the court. What do you imagine to be the major
advantages and disadvantages of each approach?
What role should cost considerations play? How should costs be weighed
against a patient's life? Should there be a distinction between how much society
will pay to keep competent patients and incompetent patients alive? Engelhardt,
et al., in the last recommended reading suggests that one criterion which might
be considered is whether or not a patient can provide self-care. Do you agree?
Do you think a physician should be permitted to make the decision that an
incompetent patient should die because treatment costs too much, or should a
court, or should such decisions be prohibited?
Should an irreversibly comatose patient be kept alive so that relatives can
arrive from a distant state before the patient dies or so that a spouse who
cannot accept his partner's death can have more time to adjust to it? In these
cases, as when an incompetent patient is kept alive at his own request, the cost
is considerable. These last two situations have occurred at Walter Reed or Naval
Hospital in the last few years and in both instances these patients were kept
alive. Do you consider this allocation of funds justified?
A focal question on this issue is when, if ever, nutrition and hydration
should be withheld or withdrawn when patients are permanently unconscious or in
vegetative states. Although food and water may be qualitatively distinct from
other life-supporting measures such as a respirator, how much of society's
exceptional regard for food and water should count in deciding what is medically
mandatory is open to debate. If withdrawing food and water were precluded in all
cases, some patients would experience prolonged suffering.
Does the provision of food and water represent ordinary or extraordinary
treatment; and is this distinction ethically important? The
ordinary/extraordinary distinction has been used by courts to categorize life
support technology in the degree to which it is intrusive or expensive. Although
these two considerations are important, the terms ordinary and extraordinary
provide little substantive clarification to the underlying values in conflict.
Should a distinction be made between starting and stopping treatment?
Clinicians have feared that if they withdrew treatments, such as a respirator or
IV, they would be more vulnerable to legal sanctions than if they were never
started. This reluctance is reinforced because it is psychologically more
difficult to stop than not to start treatment. Clinically, it is preferable that
it be easier to start treatment than to stop since the degree to which a patient
will benefit from medical interventions may become apparent only after they are
tried. The ethical distinction between not starting and stopping treatment is
similar to that between bringing about a patient's death by failing to act and
Is pulling out a patient's intravenous line or unplugging his respirator
failing to act or acting? The consequence, in both cases, is identical. Some
argue that there is no morally relevant distinction between killing by an act of
commission and omission. Yet, the law may hold otherwise and public regard for
physicians might change if they actively killed patients. When physicians began
performing abortions after Roe v. Wade in 1973, did the public's view of
doctors change? Is this example a valid test of this question? Would public
respect for physicians change if physicians performed euthanasia on patients who
were suffering? Recent reference on physician assisted suicide are listed in the
At some hospitals, patients on respirators who want to die are given heavy
sedation and their blood chemistries are ignored until they suffer cardiac
arrest. Is this practice morally equivalent to allowing a patient to die by
withholding food and water? Would society accept this practice if it were more
It is necessary to distinguish between killing which is unintended and
killing which is intended. This doctrine of double effect has been raised in
regard to whether or not it is morally permissible to kill a fetus to save the
mother's life. By analogy, a physician might be permitted to withdraw a
patient's IV if this were the only way to relieve his suffering, but not if the
patient's death were the physician's primary intention.
This distinction, however, like that between extraordinary and ordinary
treatment, may blur rather than illuminate the values in conflict, namely the
sanctity of life versus relief from suffering. Yet, this distinction is
important in protecting physicians legally. Although prescriptions of high doses
of morphine in hospices may be tolerated by society because it relieves
suffering; giving lethal injections to prisoners to bring about death might not.
Three cases involving the withdrawal of nutritional support from incompetent
patients illustrate recent court responses to these issues. In the Barber case
which occurred in California, physicians stopped intravenous feedings to a
patient irreversibly comatose. They were prosecuted for murder despite the fact
that the patient had indicated when competent that he would not want his life
prolonged in this state and his family had given written consent for his
treatment to be discontinued. The court ruled that nutrition should not be
considered distinct from other life-preserving interventions when further
treatment would be futile. The court considered a benefit versus burden
A second case involved Mary Hier, a 94-year-old woman. She had been taking
anti-psychotic medication for several years and pulled out her gastrostomy tube.
Two questions raised were whether thorazine should be given against her will and
whether the gastrostomy tube should be reimplanted. Applying the subjective
patient standard, the court initially decided that she would want thorazine but
not the surgery, inferring that her removing the tube reflected her genuine
This case illustrates the great difficulty which can arise when attempting to
determine an incompetent patient's subjective desire. Psychologically, even
persons who make serious suicide attempts may feel ambivalent about death. Ms.
Hier's pulling out her gastrostomy tube may have represented one side of her
ambivalence rather than a clear intention.
Consider the case of Claire Conroy. Ms. Conroy showed only slight awareness,
sighing as if experiencing pleasure when massaged, and groaning when moved. The
criteria the court established for deciding future cases of this sort involve
the patient's prior wishes, the benefit-burden ratio, and a combination of both.
The United States Supreme Court has decided another case involving Mary
Cruzan, a patient in a persistent vegetative state. Basically, the court said
that each state may determine its own standards and procedures for withdrawing
life preserving interventions.
The court also stated that it regarded hydration and nutrition to be
interventions ethically equivalent to placing a patient on a respirator as
opposed to a different kind of entity representing basic care to give the
patient dignity and comfort.
In practice, it would appear that Cruzan changed little. It was
important before Cruzan to learn patients' preferences prior to their
becoming incompetent. It remains so.
A development which has taken place since the Cruzan holding is the
passage of the Patient Self-Determination Act. This act requires all medical
facilities receiving medicare or medicaid funds to inform patients admitted to
that facility that they may issue advance directives, such as a living will and
durable power of attorney, if they later become incompetent. Those favoring it
believe that it will promote patient autonomy, make it easier for ward staff to
determine what to do, and perhaps save costs of treating patients whose
treatment is futile and who would not have wanted treatment. Those opposing the
act fear that highly sensitive issues may be dealt with impersonally, perhaps by
non-medical personnel admitting patients to the hospital.
A recent case which represents a new holding involved Mrs. Helga Wanglie. In
this case, her doctors went to court to seek permission to discontinue the
respirator which kept her alive in a persistent vegetative state. In this state,
it is believed that patients have no human awareness, such as hearing, touch, or
the sensation of pain. The court decided that the decision should be left to
patients' families so long as they are competent.
An emerging controversial issue is what conditions should render a substitute
decisionmaker incompetent. One question involves substitute decisionmakers who
have severe mental illness, such as schizophrenia. Consider this example:
A woman is comatose with a terminal illness, but after surgery she may regain
consciousness and survive another six months or so. Her husband says she would
not want the surgery, yet you discover that he has had extramarital affairs and
may be having one now.
Should he be permitted to decide against surgery as his wife's substitute
An extremely controversial issue is, of course, physician assisted suicide.
You may want to consider what you believe you should do if and when a patient
makes this request.
Session II - Cases for Discussion
September 1, 1998
A 32-year-old woman presents chief complaints of increasing fatigue,
abdominal pain, shortness of breath, and headaches. She has lost 15 pounds over
the past four months.
On physical examination, the patient is found to have hepatomegaly, a left
flank mass, and weakness of the left arm and leg. She is admitted to the
hospital and is found to have a renal cell carcinoma, metastatic to the liver,
lung, and brain. Consultants agree that no treatment will alter the progression
of the disease, and they advise against surgery, radiation therapy, or
What might your negative feelings be in this situation?
- Inadequacy because of the inability to alter the patient's course
- Fear of your own vulnerability to a similar condition
- Anger about the cruelty of life
- Distress by the plight of the patient's husband and children
- Frustration about the unsuitability of caring for a dying patient in an
acute care hospital
Which of the following are constructive responses and which destructive?
- Listen attentively to the patient's concerns and emotional reactions
- Avoid conversation with the patient and family. Become hard to reach and
postpone returning phone calls
- Allow the patient to participate in decisions as she desires or is able
- Fail to acknowledge a reluctance to care for or talk with the dying
- Ascertain by appropriate means the patient's wishes about DNR orders,
sustaining treatment, hospicecare, homecare, and experimental therapy
- Review medication to assure symptomatic relief
- Fabricate or equivocate about prognosis
- Deny other health care professionals the opportunity to express their
attitudes and emotions
- Ridicule or criticize others who express distress at caring for dying
She becomes disoriented and confused and from her grimacing and groans seems
to be in constant pain. Excessive doses of morphine could relieve her distress
but also could kill her. Do you relieve her pain?
A 73-year-old man, brought to you by his elderly brother and sister-in-law
with whom he lives, has become increasingly forgetful and confused over the past
1 1/2 years. After two episodes of night wandering and one episode of combative
behavior during which he did not recognize his brother, they bring him to the
clinic. He cannot remember to take medication prescribed for arthritis and
cardiac arrhythmias. He sometimes dresses inappropriately and on several
occasions has urinated on the floor outside his bathroom.
His brother, in a separate interview, expresses distress and some disgust.
"He forgets what he wants in the time it takes to go upstairs. I spend all day
looking after him. He's almost a full-time job. If it gets worse, we may have to
find a place for him somewhere."
The patient has just been evaluated at your hospital. The diagnosis of
Alzheimer's disease is verified in his records.
Which of the following negative feelings might you have in this situation?
- Irritation by another case which is likely to be "untreatable"
- Annoyance at the brother's attitude
- Hopelessness about your inability to improve the patient's quality of life
Which of the following are constructive responses and which destructive?
- Tell the patient's family that nothing can be done.
- Discuss with the family the likelihood that the patient will become
progressively dependent and show willingness to remain involved
- Discuss other resources available, now and in the future.
- Discuss the financial situation of the patient
- Urge the family to place the patient in a nursing home
This patient subsequently shows kidney failure and is placed on renal
dialysis. The dialysis unit states that his care is expensive and he is taking
the place of another competent patient who could benefit more. They want
Assume that the family agrees and that there would be no adverse legal
repercussions. Should dialysis be discontinued on the basis of this man's
irreversible incompetence and the expense of his treatment?"
Mr. C.D. is 81 years old with severe dementia and totally dependent for
assistance with activities of daily living. He has been your patient and a
resident at an intermediate care facility for the past 2 years. He has one
relative, a second cousin that visits about once every two months. His social
interactions have decreased and his food intake has become erratic,
necessitating feedings by hand by an assistant.
In the last two weeks, he has been refusing food and water; spitting out
food, clamping his mouth shut, and pushing hands away. He has lost twenty pounds
and is mildly to moderately dehydrated. You consider the institution of tube
A feeding tube is placed and Mr. C.D. pulls it out repeatedly. It becomes
apparent that only by constantly restraining his hands and feet will the feeding
tube stay in.
Mr. C.D.'s cousin believes that this patient is suffering and would want to
die if competent and able to express his desires. Should this patient's nearest
relative be permitted to decide for him or should this decision be made by his
physician, an ethics committee, or the court?
What should the decision be? Why?
A child has been born with meningomyelocele, a congenital defect of the lower
spine and spinal cord coverings which allows the spinal cord to be exposed. The
parents of this child have five previous children and have some savings to pay
for their future education should they wish to go to college, but, otherwise,
just make ends meet.
If untreated, 60 to 80 percent of such children die within the first year of
life, due to meningitis, hydrocephalus (accumulation of fluid around the brain),
or kidney disease. There are new surgical techniques with which such infants can
be aggressively treated soon after birth. However, this child has a large area
of defect with some hydrocephalus already present, and in such cases the
benefits from surgery have been minimal.
A pediatrician on the staff argues that this is a case in which it would be
appropriate to intervene to end the life of the infant quickly. He states,
"Having seen children with unoperated meningomyeloceles lie around the ward for
weeks or months untreated, waiting to die, I can't help feeling that the highest
form of medical ethic would have been to end the pain and suffering, rather than
wishing that the patient would go away."
The chief of pediatrics retorts that it makes no sense to talk about the
infants "waiting to die" and suffering in that light, since they do not, at that
age, have the capacity for self-and-future-awareness that such suffering would
require. He concludes that therapy, even where cure is not possible, is still a
major goal of medicine, and that one can't get off the hook by doing away with
Assuming that the parents regretfully do not want treatment, and that legally
any of the following would be permissible, which of these approaches would you
find most acceptable?
- Positive euthanasia
- Withhold food and water
- Treat surgically
(Adapted from Ethical Decisions in Medicine, Howard Brody)
This patient is an elderly individual who resides in a nursing home and
suffers from severe dementia and incontinence. He spends his day in bed or in
his wheelchair staring at the world around him, occasionally responding in a
confused way to the environment. When he develops a severe urinary tract
infection-and he does so on a regular basis--he is transferred to a hospital for
care until the infection is cured. Then he is transferred back to the nursing
home. It costs society considerable money to provide care for this elderly,
demented patient. Should physicians keep this factor in mind when deciding
whether or not they should aggressively treat this patient's infection? Would
that depend on who is paying for the patient's nursing home and the accompanying
(Adapted from Bioethics Readings & Cases, Baruch A. Brody and H.
Tristram Engelhardt, Jr.)
The patient in this case is a 77-year old gentleman who has recently been
diagnosed as having oat cell carcinoma of the lung. The tumor is fairly
widespread. The physicians treating the patient recommend a combination of
radiation therapy and chemotherapy. They point out that this usually increases
survival by many months, and also provides some palliative care. The patient
refuses the care suggested, but for a very unusual reason. He is concerned that
the cost of this care (including the cost of his wife staying with him near the
hospital) will use up whatever money he has saved. He wants to leave as much as
possible to his wife. All of the people caring for this patient are much moved
by his feelings, but they are also much moved by the wife's insistence that he
be pressured to accept therapy. Sadly enough, real conflict has arisen between
these two loving older people, and everyone is distressed by the couple's
conflict. What should be done in such a situation?
(Adapted from Bioethics Readings & Cases, Brody and Engelhardt)
Mr. C is a 55-year-old former coal miner who has been retired for the last
ten years because of black lung disease compounded by chronic obstructive
pulmonary disease attributable to Mr. C's 40-year habit of smoking two to three
packs of cigarettes a day. Over the last year and a half, he has been
hospitalized three times because of his lung disease, intubated, and then slowly
weaned from his ventilator and sent home. He was last discharged from the
hospital six weeks before. He continues to smoke heavily and recognizes that his
life expectancy is very meager. After the last hospitalization, he completed a
directive to his physician in accordance with his state's natural death act. He
instructed that, should he be hospitalized again, he did not want to be put on
the ventilator, but rather made comfortable and helped to die with as little
pain as possible. He amplified this directive with a note in which he explained
that he had lived a full life and could not stand being put on a ventilator
again. In that note he emphasized that, should he be hospitalized and request
treatment, the request should be disregarded. The last time he was hospitalized
he recalls being disoriented and not being able to carry through his wish not to
be intubated again. Two weeks later, he is hospitalized again, gasping "Help me,
help me!" Because of the directive he signed, rather than intubating the
patient, the physicians sedate him so that he dies peacefully.
Did these physicians act in the patient's best interest?
(Adapted from Bioethics Readings and Cases, Brody and Engelhardt)
FACILITATOR'S GUIDELINES FOR DISCUSSION CASES
SESSION II - SEPTEMBER 1, 1998
Case 1 - The first questions in this and the next case are intended to
emphasize to the students the importance of physicians keeping aware of their
own feelings so that their feelings do not impair their capacity to most
effectively treat their patients. This is particularly important when the
physician treats a patient with a fatal illness. The usefulness of physicians
taking time to share their negative feelings with a colleague or friend to
relieve their intensity should be discussed. If students are reluctant to
discuss what they imagine their feelings would be in the discussion group
session, the facilitator might point out how much more difficult this would be
on the ward.
In Case 1 all the negative feelings given should be explicitly identified and
discussed. Possible ways in which students might unconsciously act out their
feelings should then be identified. Counterproductive behaviors in the list
given are probably obvious, but include avoiding conversation, fabricating or
equivocating about prognosis, denying other health care professionals an
opportunity to express their feelings, and ridiculing others who find it hard to
care for dying patients.
The ethical issue raised here is whether or not the physician should err in
the direction of attempting to relieve a patient's pain when it might hasten a
patient's death. The point should be made that if the patient is conscious, in
general, this choice should be his. That is, some patients might prefer living
longer even with severe pain. Others would prefer being free of pain. Similarly,
pain medication may cause sedation. Some patients might prefer being mentally
clear though in pain, others to be free of pain even if overly sedated.
The patient in this case is disoriented and confused and cannot express her
preference. There might be a tendency on the part of physicians to give this
patient less relief from pain than they would a patient consciously requesting
it. The question should be raised whether there is any justification in
physicians' "discriminating" against this patient by allowing her, because she
is confused, to remain in more pain.
A distinction to be raised here is between giving morphine to relieve pain
knowing that it could possibly precipitate a patient's death prematurely by, for
example, compromising the patient's respiration and giving morphine specifically
to bring about a patient's death. Hospice physicians err frequently on the side
of relieving patients' pain even when this risks precipitating patients' death.
None have been criminally prosecuted.
The students might also consider what they believe the physician should do if
the family asks the physician to give the patient a lethal dose of morphine.
This question is far more controversial. Clearly, it is illegal to kill the
patient. Yet, some physicians and perhaps some students would find it acceptable
or even morally praiseworthy.
Case 2 - In this case, again, the physician's feelings should first be
addressed. In addition to those feelings mentioned, the students should be asked
whether they find themselves making moral judgements that the brother is "weak"
or a complainer. They might be asked how their feelings or judgement of the
brother compares with their response towards a parent who places a retarded
child in an institution as opposed to caring for him at home. The mother of a
retarded person discussed her own experiences in dealing with this question
during the first session of the course.
Again, the students should identify possible ways that they could "act out"
negative feelings which are outside their awareness or are too intense for them
to handle appropriately. The two counterproductive behaviors listed are telling
the family that nothing can be done and urging the family to place the patient
in a nursing home. That is, there may be a number of other options for the
family. The students might be informed, in addition, that it is extremely
helpful for physicians to inform families of patients with Alzheimer's disease
that the situation will continue to become worse and exactly how. This is an
instance in which the truth offers little hope, but is unquestionably
The ethical question in this case is whether an incompetent patient's care
should be withdrawn when he does not have an imminently fatal disease either to
benefit other patients by "freeing up" dialysis machines and/or to save society
money. The students should explore what kinds of problems could be anticipated
if patients irreversibly incompetent are "killed" in this manner. The word
"kill" might, in fact, be used. If the students argue that the patient is not
being killed, what are they claiming? If they are making a distinction between
active and passive euthanasia, they should be asked whether this distinction is,
in this instance, genuine or morally relevant? That is, does this difference
count in this case or are they using it disingenuously to bootstrap a decision
they do not feel they can justify by other arguments? They have, you might
remind them, addressed a similar question the previous week in regard to the
differences between lying by commission and omission.
Case 3 - This case raises the question whether an irreversibly
incompetent patient who does not have a terminal illness should be permitted to
die when it is arguable, but in fact unclear, that the patient is suffering. The
students might explore first what they believe permissible when a patient is
suffering and then what they believe permissible in a case such as this in which
a patient's suffering is more equivocal.
The point should be raised that in some cases a patient will have recently
lost significant weight or become dehydrated. This weight loss may affect his
emotions and his desire to live. In this instance has the patient's refusing to
eat "caused" his pulling out his feeding tube? If he were force-fed would he no
longer pull it out? Or does his pulling out his feeding tube reflect some
"underlying, true" desire? What presumptions should be made in this situation?
The other equally important question in t his case is who should decide? Does
it make sense for the person closest to the patient to decide whether the
feeding tube should stay in when the patient's suffering is equivocal? Would
this maximize the likelihood that what the patient would have wanted is carried
out? Even if not, allowing a relative or a close friend to decide respects the
patient's dignity more than an ethics committee's or court's deciding. Or is a
relative or close friend likely to be too involved in the case and so affected
by his feelings that he cannot be objective?
Case 4 - This case is similar to one the students have discussed
previously in the first session involving a child with spina bifida, but in this
instance the question is raised after students already discussed what should be
done when adult patients are irreversibly incompetent. The students should be
asked whether they perceive relevant differences between choosing to let adults
and infants die when treatment would be futile. Are society's sentiments for the
two groups different? If different, what weight should society's views be given?
Case 5 - The first issue this case raises is whether, aside from
economic considerations, it is appropriate to give this patient maximally
aggressive treatment. If students feel that this is not appropriate, they should
be asked why and, in particular, how they would go about drawing a line between
cases like this one in which they would withhold certain interventions and other
cases in which they would not. They also might be asked whether they would be
concerned that if they permit themselves to withhold optimal treatment in this
case, in principle, other physicians could withhold optimal treatment in cases
in which they felt this was appropriate. Ultimately, doctors might decide on the
basis of their idiosyncratic values when maximal treatment should be withheld
and when not. The students might then be asked whether physicians possess the
moral expertise to make these decisions and whether society would be willing to
permit physicians to make them.
The second issue this case raises is whether cost considerations are a valid
ground for withholding optimal care from patients who are incompetent. Again,
the students can be asked to explore what basis, if any, there is for
withholding aggressive treatment from an incompetent patient which would be
given if the patient were competent and requested it. If society is unwilling to
authorize such choices, on what basis should physicians do so? If society is
unwilling to make such choices legally acceptable but expects physicians to
carry them out, should physicians comply?
Finally, does it make a difference who is paying for the patient's care? It
might be argued that so long as the family can pay for such patient's care and
wants to, fully aggressive care is indicated, at least as long as the patient is
not suffering and has not previously indicated that as long as the patient is
not suffering and has not previously indicated that under these circumstances he
would want aggressive care withheld. Students favoring this approach would be
implicitly supporting the two tier system in which incompetent patients who are
wealthy could live perhaps several years longer than those who are not. The
students might be asked whether life versus death is a kind of outcome that
should be tolerated between rich and poor or is a kind of inequity which should
not be permitted.
Case 6 - This case raises both public policy and clinical issues.
>From the standpoint of public policy, the issue raised is whether the
government should allocate funds for such purposes as allowing family members to
stay in the vicinity of a hospital in which a patient is staying so that the
quality of that person's life can be improved. If the students consider this
extravagant, facilitators might raise for their consideration the point that
whether members are present may make a difference between the person's
benefitting overall from treatment and suffering. If the students felt that in
the previous case inequity based on wealth could not be tolerated, they might be
asked why it should be tolerated in this case.
A second policy issue this case raises is whether public monies should be
provided when patients such as this require hospitalization to enable the family
to retain certain savings so that patients will not want to die to keep the
savings from becoming depleted. A similar question has been raised in regard to
situations in which infants are born with severe deficits. That is, the
suggestion has been made that whereas these infants should be kept alive their
families should not be made to suffer poverty as a result of this choice. The
ethical basis for such a distribution of public monies is that of equity. If it
is assumed that any person is vulnerable to a member of their family or
themselves experiencing debilitating illness, society has a choice, allowing
those patients and families who suffer this misfortune to bear the brunt of the
consequences or providing some means of reducing them.
The last issue this case raises is clinical. Generally, a patient stating
that he wants to be permitted to die so that his family's savings will not be
depleted has not been considered sufficient justification for making this
choice. Suppose, for example, that a patient indicates that he would want to
live unless he were depleting family savings and then becomes incompetent. It is
unlikely that an ethics committee would ask the family the degree to which their
savings were becoming depleted. If, in fact, the family funds were being
depleted and the family asked that a permanently comatose patient be allowed to
die for this reason, the family might be seen as acting on the basis of their
own as opposed to the patient's best interests. The medical team after assessing
the patient's best interests or prior preference might then even go to court on
behalf of the patient.
But should this be? The students might consider that to some persons the
greatest meaning in life is that they have acquired savings which they can pass
on to their family. If both patient and family concur that they wish to not
deplete these savings, should this wish not be respected?
Case 7 - This case raises essentially one clinical question, but an
important one. When a patient indicates a prior preference, and especially when
the preference is unequivocal, can they change their mind at the last minute? Or
to put the question more usefully, are there instances in which the physician
should not respect the patient's change of mind? Cases of this kind are not so
uncommon as some might imagine. In one particularly difficult case in a nearby
military hospital, a mother had given permission for her child to have a no-code
order. When the child experienced a respiratory arrest in the presence of a
nurse, the mother abruptly changed her mind and cried out for the nurse to
intervene. The nurse believed she should. The physician who was on call
The aspect of the case above which makes it especially urgent is that dying
by suffocation is considered to be a most agonizing way to die. At a nearby
military hospital, also, a situation occurred in which a patient who had a
do-not-resuscitate order suddenly had excessive secretions, began coughing and
cried out for help. Again the nurse went to suction him, but the physician on
call, believing that the patient's do-not-resuscitate order represented a prior
preference, intervened and ordered her to stop.
The facilitator might differentiate for the students cases of an acute nature
in which the patient impulsively changes his mind and situations of a less acute
nature in which other options are possible. If, for example, it were anticipated
that a patient would experience panic because he is not able to adequately
oxygenate his lungs, medication could be given prior to his being placed on a
respirator which could reduce his panic.
Author: Dr. R. Howe
Date: September 1998