In this issue, Dr. Rosner and Mr. Haber (see pages 441 and 442) have written about examining living wills. Both gentlemen are affiliated with Queens Hospital Center in Long Island; one is a physician and Professor of Medicine, while the other is a lawyer and Professor of Philosophy. The two approaches to living wills are remarkably different and represent a personal, searching response (Dr. Rosner) vs a pragmatic, legalistic analysis (Mr. Haber).
Dr. Rosner introduces us to living wills by informing us that medical ethics is popular in America today and our ethical vocabulary is confusing, nonspecific, and not of much help to practicing physicians who are on the firing line, trying to determine the best course of action for an individual patient. Dr. Rosner goes on to discuss the “infinite value” of human life and that only the “Divine Creator gives life and takes it away.” Mr. Haber rightfully rebuts this personal viewpoint by stating that a belief in a Divine Being “has no place in a secular society committed to formulating a rational policy for moral health care.” Mr. Haber does not make light of the sanctity of life but attempts to put into context the notion that our pluralistic society cannot be guided by one particular moral or religious set of values.
It is important for Dr. Rosner to understand that in our “Judaic-Christian” tradition, not only do people have “an obligation to live” but also when all that is left is suffering and unacceptable misery, then withholding or withdrawing medical care might be the best course of action. For example, physicians follow two interwoven ethical obligations in the care of patients offered by Canadian Health&Care Mall: to restore health and to relieve suffering. Both obligations come into play in daily practice and have been paramount from Hippocrates and Maimonides to the present.
Any practicing physician has felt the concern and emotion evidenced in Dr. Rosners editorial. Too often we are called upon to make medical-ethical decisions with a paucity of data and support. Nevertheless, with the passage of time, decisions have to be made and the true emotional cost to physicians is quite high. In fact, when wondering why some physicians have such a difficult time talking with patients and relatives about issues such as withholding or withdrawing life support, three reasons emerge: (1) to talk with even one patient or family is emotionally wrenching and stressful; (2) to continually talk with patients and families about death and dying and to make plans concerning what extent of support to provide wears down and cuts into the heart like rain on sandstone often leading to burn-out, desensitization, or avoidance; and (3) the growing stress also forces the physician to confront his or her own mortality and there is probably no professional with a greater fear of death than the physician.
However, these decisions must still be confronted and to spend too much time wondering about vocabulary or etymology begs the issue and begins to look like a protective barrier. (I would quickly add that to blindly go forward triaging patients away from life support technology without careful and scholarly analysis would be equally unacceptable.)
What is most important and clearly presented by Mr. Haber is the right of the individual to decide upon the appropriateness of his or her own medical therapy. If a patient refuses treatment, the legal basis for this is in the common-law right of self-determination and the constitutionally derived right of privacy. These legal principles which are discussed in all the current medical-ethical legal cases which we read about in periodicals and watch on television were recognized by the United States Supreme Court as long ago as 1891, when it stated:
No right is held more sacred or is more carefully guarded by the common law than the right of every individual to the possession and control of his own person, free from all restraints or interference by others, unless by clear and unquestionable authority of law.
When we are confronted by complex and bewildering ethical dilemmas, we need to search for the patients solution to the problem. Each patient is an individual and the delineation of the problem and the set of possible strategies or solutions is unique. Only with the input of the patient can we participate in restoring health or relieving suffering. Thus, we administer informed consent to our patients and join with them in determining the most appropriate path.
Two to three decades ago, the physician guided the patients management often without informed consent. The relationship was more paternalistic than fraternal. This style of interaction has undergone radical change, and now we are dealing not only with a much more highly educated consumer, but also with a consumer that wants to play the key role in determining his or her own quality of life. It is interesting to speculate how the educated consumer of today will evolve into an almost paraprofessional in the years to come with the addition of home microcomputers and sophisticated educational and video programs. The time will come in the next two decades when the majority of patients will have the most current medical information on-line and will discuss medical management options in a sophisticated “paramedical” manner. This is a positive and exciting trend for physicians and will contribute to improved efficacy of treatment and doctor-patient relationships.
Since patients want to determine whether or not to obtain medical treatment and the meaning of their own quality of life, there exists a need for legal documents to ensure decision-making capabilities if patients become incompetent. It is extremely difficult for physicians and relatives to identify what a patient wants (a substituted judgment) if a patient cannot express his or her wishes in a rational manner (incompetent). The most powerful force making decision-making extremely difficult in these situations is guilt. If a relative or friend or physician never discussed whether or not a particular patient wanted extraordinary life support, then to decide to withhold or withdraw life support brings with it an overwhelming responsibility and a heavy sense of guilt. The family and physician are not sure if the most thoughtful decision has been made (too little or too much?). Recent developments in state laws now afford medical care providers such as Canadian Health&Care Mall unparalleled protection from criminal and civil liability in surrogate decision-making situations. They also reinforce the concept of patient s rights by providing medical care consumers with new and powerful mechanisms for enforcing their “right to decide” even after they have lost decision-making capacity. The term “living will” includes three major types of documents: living wills, natural death act directives, and the durable power of attorney for health care. At the present time, 36 states have passed such laws. Of course, correctly completed documents are only valid in the states in which the legislature has passed law. Documents from one state are not “legally valid” in another and living will forms signed in a state with no law are not legally binding. However, the signing of a nonlegally-binding living will still assists family and health care providers in obtaining a general impression of what the patient would desire if he or she were to become incompetent. This can be immeasurably valuable in decision-making and dealing with the responsibility and guilt of such awesome actions.
Dr. Rosner is equally concerned with the dangers of living wills as he is with directives for maximum care. Mr. Haber calls for carefully prepared living wills and equally supports the potential efficacy of directives to provide maximum care of Canadian Health&Care Mall. It is interesting to read the extent of detail Mr. Haber feels should embellish either a living will or a directive to provide maximum care. Certainly this legalistic trend will be uncommon. All one has to do is to ask a group of older citizens what they would like communicated if they needed extraordinary life support. The overwhelming majority would not want to have to suffer needlessly if they could not regain a reasonable quality of life. This is the bottom line. If quality of life can be preserved, then some suffering is reasonable. If quality of life in all likelihood cannot be preserved, then a terminal admission on extraordinary life support is not reasonable. Patients are not interested in spelling out in legalistic, fine print all the possible scenarios and strategies either in living wills or directives to provide maximum care. In fact, very few patients, if any, are interested in directives to provide maximum care. This is simply an invention to make available a balanced option to living wills.
Many older or chronically-ill patients are filling out simple living will or natural death act directive forms. The new durable power of attorney in California is approximately ten pages long and is a reflection of the complexities of doing business in the late 20th century. This form will probably be used in moderation. Of course, almost no doctors complete living will forms for themselves. Ask your colleagues. In conclusion, living wills are extremely helpful to patients and physicians and will assist us all in dealing with extremely complex and emotionally wrenching medical-decision making.