The right to die

To Die Or Not to Die? Cross-disciplinary, cultural, and legal perspectives on the right to choose death,
By Joyce Berger

1 The Right to Die: Perspectives of the Patient, the Family, and the Health Care Provider
David V. Schapira

Get the full version of this research at Questia Online Library

Possibly the most neglected aspect of patient care is the medical and psychological management of a patient's death. The existence of a deficiency may seem surprising. One would think that either patients would have reached a conclusion regarding their deaths and resuscitative measures prior to serious illness, or a discussion by the physician with the patient and family would result in a decision on how to handle resuscitation.

When addressing how aggressively to manage and treat serious illness, implications that lie outside the boundaries of human rights and a person's quality of life should be considered. Approximately two million Americans die each year and, because of an increase in the population and particularly an increase in the number of elderly citizens, the annual number of deaths is rising. Eighty percent of the health care dollar is spent on people who survive less than one year. The care of nonsurvivors is approximately double that of survivors ( Scotto and Chiazze, 1974). Only 10 percent of patients who require admission to an intensive care unit because of complications of their disease or treatment leave the hospital. In the past fifteen years the cost of health care has risen from 8 percent to over 13 percent of the gross national product--more than a 50 percent increase. These statistics should encourage health care providers to address the issue of resuscitation and aggressive management of life-threatening or terminal illnesses.

By addressing such issues at an appropriate time, the use of expensive medical care in the pursuit of prolonging a patient's life would be averted. It is particularly important that the decision of whether or not to implement heroic measures be resolved at a time when the patient is able to make a decision.

Despite our best intentions to grapple with and resolve the issues of a patient's right to die, there are obstacles that can render arriving at a solution difficult, if not impossible. I would like to describe these obstacles from the perspective of the patient, family, and health care provider.

THE PATIENT'S PERSPECTIVE
Patients may not wish to decide how aggressively their illness should be managed; they may wish to relinquish the decision to the physician. The severity of the illness can affect a patient's desire to participate in active decision making. Increasing severity of illness increases a patient's dependence on the physician. As the severity of illness increases, the fear of dying may alter a patient's decision whether or not to be resuscitated. The reality may be too overwhelming. Additionally, medications such as potent analgesics may alter a patient's mental state and reduce his or her capacity for judgment.

Although the physician may attempt to inform patients about the severity of their illnesses, patients may employ an appreciable amount of denial. In a study of 315 cancer patients ( Eidinger and Schapira, 1984) being treated with chemotherapy or radiation therapy for advanced cancer, only 50 percent of the patients correctly responded that their cancer had spread and was in an advanced stage. All the patients had been informed of their condition prior to the study. This lack of knowledge was not due to an unwillingness to seek information, as over 90 percent of the participants wished to learn all information regarding their disease, irrespective of whether the information was pleasant or unpleasant. We asked the participants what they felt their prognosis was. The majority of patients felt they would live at least three years or longer, and an appreciable percentage felt they would "beat the cancer." In fact, over 75 percent of the patients expired within a year of participating in the study. If patients have a very optimistic view of their prognosis, discussions regarding resuscitation may seem incongruous.

If patients deny the severity of their condition, they may not make a rational and realistic decision about how the process of dying should be medically managed. Patients may also feel that making a decision not to be resuscitated may result in abandonment by the health care team and enhance a feeling of hopelessness. It is of interest that only 14 percent of patients who had a "do not resuscitate" order on their chart left the hospital alive at the end of the admission.

Factors other than denial may affect the patient's decision regarding resuscitation. A patient may make a decision not to be resuscitated based on erroneous information, emotion, or mood. A patient may become depressed with the side affects associated with the disease and feel that "life is not worth living." If, however, the symptoms can be alleviated, the patient's quality of life may be markedly improved and the desire to be aggressive with medical management may change.

Patients who feel they have not received a desired amount of attention and emotional support from spouse, family members, or friends may express a desire not to be resuscitated in an attempt to engender sympathy and emotional support from these individuals. Patients may even go so far as to attempt suicide to achieve the desired outcome.

Patients may have preconceived unpleasant illusions about the aspects of resuscitation. They may fear the trauma of intensive care units, tubes and intravenous lines inserted into the body, respirators, or the cardiac arrest procedure. Impressions of these traumatic measures may lead patients to decide to make a more passive decision.

These feelings of depression or fear that lead to a decision not to be resuscitated may be implemented by the health care team unless the reasons underlying the decision are examined. The situation can arise in which the patient's quality of life and desire for life is not dealt with appropriately. This is exemplified when an elderly patient with a terminal disease is admitted to an intensive care unit. The medical staff may view the admission and intensity of care to be inappropriate. They may be unaware that the patient wishes to remain alive for a few more weeks or months to see the birth of a grandchild or wedding of a child.

A somewhat similar philosophical decision was presented to a Massachusetts court ( Brophy vs. New England Mt. Sinai Hospital). The court authorized the withdrawal of nutrition from an adult in a chronic vegetative state. While healthy, he had stated that he would not want his life sustained if he were permanently unconscious. The court rejected the view that a decision to withdraw life-supporting measures could be made on the basis of a quality of life that was determined by individuals other than the patient. The decision should not be perceived as a step toward euthanasia for those patients who lack the capacity to satisfy someone else's vision of a satisfactory quality of life or are deemed to be a social burden.

THE FAMILY'S PERSPECTIVE
For reasons of grief or guilt, the family may press for disproportionately aggressive management. One can observe this phenomenon in patients undergoing treatment for advanced cancer. When all conventional treatments, usually chemotherapeutic drugs, have been exhausted and the patient and family have been told that nothing more can be done to prolong survival significantly, the family may persuade the patient to turn to unconventional therapies as a last resort. These therapies may not have demonstrated objective tumor shrinkage, but guilt or grief may drive the patient to try these treatments in desperation. Unfortunately, this decision can have disastrous economic results as the travel to the clinics and treatments are not covered by insurance. Thus the surviving family may expend an appreciable amount of its savings.

Families are placed in a similarly uncomfortable position when the patients are gravely ill and unable to make their wishes known due to decreased consciousness. Families may express a desire for inappropriately aggressive management because of guilt. A physician may attempt to educate a family with an objective presentation of the medical facts surrounding the case. Many families are uncomfortable with this amount of education and participation. They may not understand and assimilate the information at such an emotional time and may lack the objectivity to make such an important decision concerning a loved one. In order to avoid the responsibility and guilt associated with adopting a passive approach, they choose a safe course of action and request that "everything be done" for the patient. This situation can be rectified by the physician's explaining why a passive approach is in the patient's best interest; this can alleviate the family's guilt when they agree with the physician's decision.

Cultural or ethnic factors can make a decision regarding resuscitation almost impossible. Hispanic families prefer to shield the patient from unnecessary anxiety and depression and may ask the physician not to tell the patient anxiety-provoking information such as a diagnosis of cancer. Throughout the patient's course, the family protects the patient from any depressing information; therefore a discussion about dying and resuscitative measures between the physician and the patient is obstructed.
get the full version of this research at Questia Online Library

Although the situation of not informing the patient may seem inconceivable, one must be careful not to impose one's belief system as regards health, disease, treatment, and death on patients from a different ethnic or cultural background. If one attempts to impose one's wishes and values on patients, the response is often denial, resistance, and decreased compliance. In fact, although we feel that we are open in telling patients their prognoses, physicians often collude with patients in not correcting optimistic misconceptions of prognoses.

Because of their cultural or religious beliefs, and indeed their personality, some patients may wish to take a passive role in the decision making regarding the circumstances of their deaths. To disregard the wishes and beliefs of the family and to confront the patient with the decision will probably not be fruitful, and indeed may lack understanding and not be in the patient's best interest. Such a confrontation may impair the patient's quality of life and future communication with the physician.

Although such an approach may still seem untenable, I would like to illustrate how the traditional approach of Western medicine can be unsuccessful. A Haitian man may present to an emergency room with palpitations. This is usually a benign condition called paraxysmal atrial tachycardia, and can be aborted by stimulating the vagus nerve, whether by manually massaging the carotid body in the neck or by having the patient swallow ice or attempt to blow air out of the mouth with the mouth closed. The condition can be precipitated by drinking excessive amounts of coffee, tea, or alcohol. Having corrected the abnormal rhythm, the physician could warn the patient not to consume the stimulants that precipitate the condition, teach the patient the cardiac-slowing maneuvers, and possibly prescribe a B-blocker, a medication that slows the heart. Such an approach would most likely be ineffective and the patient would not take the medication. The reason is that the Haitians call this condition battement de coeur, or beating of the heart, and believe it to be due to weak blood. They would expect to receive a liquid tonic to build up the blood. If a Haitian did not receive a tonic, it is unlikely that the patient would return to a practitioner of traditional Western medicine. Lest this example seem too primitive and far-fetched, one only has to remember that almost half of the population of the United States takes at least one vitamin pill per day for no justifiable reason--certainly not to avoid vitamin deficiency. A study I made (with others) revealed that over 90 percent of vitamin takers are unaware of the recommended daily allowance of any of the vitamins. Indeed, attempting to persuade the members of this sophisticated population to stop taking a vitamin has, in my experience, been extremely difficult.

Unfortunately, medical anthropology and thanatology are not part of the curriculum of most medical schools. Without a knowledge of these areas, physicians may lack awareness and sensitivity toward alternate belief systems relating to health, disease, and death. The physician can only be left to impose his or her belief system and values on the patient, the result being an unsatisfactory outcome.

THE PHYSICIAN'S PERSPECTIVE
Dealing with ill patients exacts a toll on physicians, particularly if they deal with chronic diseases in which dramatic improvement is not often seen. A physician may have a tendency to equate a patient's death with professional failure, or unrealistic expectations. Having to impart unfavorable information to patients on a continual basis tends to lead to a feeling of being "burned out." The physician finds that it is easier not to become engaged in a discussion with the patient over topics that will be emotionally draining and time consuming. Thus physicians may avoid discussing topics such as prognosis or resuscitation unless approached directly by the patient or the family.

Apart from their desire to avoid discussing emotionally laden issues, physicians vary in their communication skills. Some may lack directness or honesty or may use technical language that is beyond the understanding of the patient and family. In this situation a facilitator, such as a psychiatrist attached to the health care team, nurse, social worker, or chaplain, can act as an intermediary and resolve any difficulties in understanding the issues. I find this approach very effective as patients and families may not want to ask physicians questions for fear of interrupting their busy schedules or for fear that certain questions are too simple or inappropriate. Members of a psychological team may be able to discuss and allay a patient's or family's fears because of their training and the fact that patients may find them less intimidating than the physician. In a study by Bedell et al. ( 1983), 95 percent of physicians felt it was appropriate to discuss the patient's wishes regarding resuscitation, yet in only 19 percent of cases did the physician discuss the subject of resuscitation with the patient, and in only 33 percent of cases did the physician discuss resuscitation with the family.

Fear of legal liability may interfere with a physician's ability to make the best choice for the patient. A physician may have a primary objective of minimizing liability, real or imagined. This strategy may be at the expense of humane treatment and may be at odds with the family's wishes. There is only one case (as of 1984) in which two physicians were charged with murder for withholding life support from a comatose patient. The charges were dropped by the California Court of Appeals. The fear of litigation following the withholding of life support is grossly exaggerated by physicians. If the conversation with, and wishes of, the patient and family are documented in the hospital records, it is extremely unlikely that a physician will be sued. In spite of legal uncertainties, appropriate and compassionate care should have priority over undue fear of liability.
The full version of this research is available at Questia Online Library

WHAT CONSTITUTES RESUSCITATION?
It appears that most members of the public understand resuscitation to involve cardiopulmonary arrest maneuvers. They may be aware that these maneuvers involve the mechanical stimulation of the heart by manual compression of the chest, ventilation by a small ventilatory bag, and the insertion of intravenous fluids and cardiac stimulus. Although this is certainly a valid impression of the scenario that surrounds the final event of a cardiac arrest, there are other interventions in medical management that, if withheld, would lead to the death of the patient. These more subtle areas of medical management that the public is often not aware of lead to problems of interpretation when a patient has written a living will. These subtler areas of "resuscitation" are frequently not included in the conditions or scenarios of a living will; they include the withholding of antibiotics from a patient with a terminal disease who has a life-threatening infection; the withholding of steroids for patients with cerebral metastases; withholding of intravenous fluids or hyperalimentation; and not performing laboratory tests to correct electrolyte disorders. All of these instances obviously assume that patients are unable to transmit their wishes because of decreased consciousness. Although these situations do not directly involve the saving of life, they can, when implemented, appreciably prolong a patient's life. If patients are not conscious and cannot make their wishes known, implementing these interventions would seem to be uneconomical and contrary to the patients' interests.

The living will is a document, distributed nationally, that outlines patients' wishes regarding medical management should they subsequently become incompetent to decide ( Society for the Right to Die, Living Will, New York, 1985). This document is not binding in some states, but it does clearly outline a patient's desires and expectations. At the present, thirty-eight states have enacted living will or "natural death" legislation ( Jonsen, 1978).

CONCLUSION
There are no simple solutions when attempting to elicit a patient's request for withholding resuscitation and granting that request. The most important point to be made is that the patient has the ultimate right to control all aspects of medical care and resuscitation, and the family and health care team must abide by the patient's wishes. If patients are unable to make a decision, their spouse or close family may decide what course should be taken. It is hoped that their decisions would be based on prior discussion with patients regarding their opinions and wishes concerning resuscitation.

The medical team in a hospital is often faced with a situation in which a patient has a life-threatening episode such as cardiac arrhythmia or cardiac arrest, and there is no statement in the patient's chart regarding resuscitation. Under these circumstances the medical team has to make every effort to resuscitate the patient, even though resuscitation seems inappropriate and would have been against the patient's wishes. This not uncommon situation can be frequently averted if the attending physician discusses resuscitation measures with the patient either before admission or on the first day of admission to the hospital. This discussion should not be held with every patient, but only with those patients deemed to have limited survival or a serious life-threatening condition.

I doubt that this practice will become widespread, as it involves many emotionally draining and time-consuming discussions. I do not state this opinion with any degree of cynicism because I realize the very appreciable increased amount of time and emotion that physicians would have to give to engage in such discussions on almost a daily basis.

Another approach would be to educate patients regarding their rights to make a living will, and to make the drawing up of such a will a relatively simple and inexpensive exercise. Living wills drawn up by patients attempt to extend patients' authority to decline certain therapeutic measures that may be involved in their death. This attempt would be made at a time when the patient was capable of entering into decision making. A standardized document could be obtained from a doctor's office or hospital that would describe the various levels of resuscitative measures with explanations. Patients could then make informed decisions as to the level of resuscitative procedures that they would want to have invoked should they become critically ill.

A third approach would be to have certain criteria for the entry of patients with terminal illness into intensive care units. There is considerable evidence ( Cullen et al., 1974) that an appreciable portion of the cost of caring for terminally ill patients is associated with treatment in intensive care units. There are standards that cover the admission of patients to intensive care units. The bill for such an admission may not be totally covered by the insurance company and the surviving family may be left having to pay a considerable amount of money. A more stringent application of admission guidelines would reduce expenditures for the health care system and family, which is important when the admission of a patient to such a unit is inappropriate and unsuccessful.

A very reasonable alternative in caring for terminal patients who do not wish an aggressive approach to their management is the hospice movement. Hospices provide an alternative form of care for the dying. They allow terminally ill patients a choice of dying at home or in facilities other than the hospital. Hospices are often a more appropriate form of care, as they are designed for palliation and caring rather than curing. Patient autonomy and dignity are enhanced.

In 1982 Congress ensured that hospice care would be covered by Medicare. It is not clear that hospice care will reduce the cost of health care, but the system allows terminal illness to be more bearable for the patient and family if a decision has been made not to follow an aggressive course.

Get the full version of this research at Questia Online Library