ETHICAL, LEGAL, AND SOCIAL ASPECTS OF MEDICAL CARE

Session II: Withholding Life-Prolonging Interventions

September 1,1998

Prioritized Learning Objectives:

1. To know major ethical and legal considerations regarding the withdrawing and withholding of hydration and ventilation.

2. To discuss feelings physicians may have when treating severely ill patients.

3. To consider relieving patients' suffering even when this means using drugs which could hasten their death.

4. To understand relative strengths and weaknesses of estimating the patient's preference and assessing their benefit/burden ratio when determining incompetent patients' treatment.

5. 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.

6. To know recent representative court decisions and controversial legal issues regarding withholding and withdrawing food and water.

Computerized Learning Experience: Lesson E

Required Reading:

1. Beauchamp, TL, Childress, JF: Principles of Biomedical Ethics, Oxford Press, 4th Edition, 219-235, 1994.

2. 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.

3. 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:

1. 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.)

2. 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".)

3. 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.)

4. 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.)

5. 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.)

6. 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.)

7. 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)

8. 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.)

9. 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.)

10. 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.

11. 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.)

12. Lowe, AD: Feeling the Final Exit. ABA Journal, September 1997, 47-52.

    (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 patients.

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 restarted.

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 surrogate decision-maker.

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' money.

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 discomfort.

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 be invidious.

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 by acting.

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 recommended readings.

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 openly acknowledged?

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 analysis.

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 desire.

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 decisionmaker?

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

Case 1

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 chemotherapy.

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
• Depression
• 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 patient
• 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 patients

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?

Case 2

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 dialysis terminated.

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 feedings.

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?

Case 4

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 the patient.

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)

Case 5

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 medical care?

(Adapted from Bioethics Readings & Cases, Baruch A. Brody and H. Tristram Engelhardt, Jr.)

Case 6

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)

Case 7

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 beneficial.

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 dissented.

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.