May 1991 XII/9
COMING SOON TO YOUR
NEIGHBORHOOD HEALTH CARE FACILITY:
THE PATIENT SELF DETERMINATION ACT
The Patient Self Determination Act (PSDA), scheduled to go into effect in December 1991, will change considerably the manner in which health care facilities offer patient care. The overall purpose of the act seems to be to increase the use of advance directives for health care. In a recent essay, the merits of two most common forms of advanced directives, the Living Will and the Durable Power of Attorney, were discussed. (October 1990) in this essay, we consider briefly the main provisions of the PSDA and more extensively some ethical issues to which the new legislation may give rise.
The main provisions of the PSDA affecting health care facilities and physicians are:
1. Every health care facility which receives Medicare or Medicaid funding from the Federal government must give to each incoming patient a statement of rights in regard to making health care decisions. Thus, the bill applies to hospitals, nursing homes, home health agencies, hospice programs, and HMOs. The statement of rights will be derived from the law and court decisions of the state in which the facility is located.
2. The health care facility also must ask patients if they have advance directives. If a person has made an advance directive, this fact must be documented in the medical record. Possibly, the simplest way to fulfill this stipulation is to place a copy of the advance directive in the patient's chart. If the patient has not executed an advance directive, this fact also must be documented, but health care may not be withheld for that reason.
3. The facility must also give the patient an explanation of its own policy in regard to advance directives. If the provisions of the advance directives of the patient violate the policies of the facility, the patient must be informed that some stipulations of the advance directives will not be honored. For example, if an advance directive calls for physician assisted euthanasia, facilities which oppose such a practice should have a statement prepared in advance which explains that advance directives containing such requests will not be honored.
4. The health care facility must "ensure compliance with the requirements of state law". For this purpose, the facility has the duty to provide education programs for staff and community regarding advance directives and their meaning. Clearly physicians, as well as other health care professionals, will need instructions concerning effective implementation of advance directives.
At least three significant ethical issues may arise as the result of this new legislation:
1. If they have not done so already, some patients may wish to execute advance directives at the time of admission to the health care facility. Because of the tension, anxiety and depression experienced by many people when they are admitted to a nursing home, hospital or hospice program, this is a poor time to make decisions concerning future health care. Moreover, advance directives should be made after prudent reflection and from a perspective of faith. To allow patients to prepare hurriedly advance directives fosters the depersonalization of medicine. In general then, it would be beneficial for all concerned a the advance directive were executed well before patients are admitted to health care facilities. If a patient has not executed an advance directive and requests to do so at the time of admission, it would seem more helpful to persuade the person to delay the process. If a patient were to insist on executing a directive at the time of admission, it seems the facility should provide counseling in regard to the meaning and effects of the document.
2. Because an advance directive is such an important document, the person who will make health care decisions for an incapacitated person should know the goals and wishes of the person who has executed the document. Often, the communication between the person who executes the advance directive and the person who will ensure compliance with it is weak or non-existent. How can one act as a reputable agent for another unless the proxy is able to "stand in the shoes" of the patient? Studies show that decisions of proxies are inaccurate if effective communication has not taken place. If communication between patients and the persons who will become their agents is non-existent or weak, then the process of decision making may become a legalistic farce.
The need for communication between patient and proxy is also obvious if advance directives have not been executed. Legislation authorizing advance directives does not create the right of proxy decision making. Rather, such legislation merely regulates this right of proxy decision making and seeks to make the exercise of this right more effective. The proxy for a person who has not executed an advance directive usually will be a family member. Unless some serious conversation has taken place concerning the wishes of the patient, the proxy will be left without any objective evidence for decision making. The use of artificial nutrition and hydration for example, should be discussed explicitly. People with a living faith will do well to discuss the implications of their faith with family members so that decisions concerning the prolongation of life will be formulated in accord with their religious beliefs.
3. Potentially, the most serious ethical issue resulting from the PSDA is the implied assumption that physicians are simply to carry-out the wishes of the proxy or attorney-in-fact. Physicians have a moral responsibility to listen to the requests of proxies, but they also have a moral responsibility to do what is "good" for the patient. The "good" of the patient is derived from an appreciation of the patient's value system and from the knowledge and skill of medicine. Thus, though a proxy or attorney-in-fact may convey accurately the patient's stated requests, these requests are to be interpreted in light of information only physicians are able to supply. A recent case illustrates this issue: When Sam, a young man in a coma as a result of an automobile accident, was brought to the emergency room, his family told the trauma surgeons that Sam had stated he never wanted a respirator or artificial hydration and nutrition to be used in his behalf. The physicians countered: "if we don't use these life supports Sam will die, and we have seen people in worse conditions eventually walk out of here." After some persuasion, the family consented to the use of both ventilator and artificial hydration and nutrition. The happy ending of the story is that Sam did recover and walked out of a "rehab" center four months later. However, the essential issue in this case is not the success of the therapy. Rather, it is the nature of the decision which must be made when caring for seriously debilitated persons. Certainly, an attorney-IN.-fact has the right to request removal of life support which is a grave burden or which is ineffective. But therapy can not be judged to be a grave burden or ineffective unless the medical condition of the patient and the hope for recovery (diagnosis and prognosis) are known. Supplying this information is the responsibility of the physician.
Anyone associated with health care knows that incapacitated patients are often maintained on life support when it is no longer beneficial for them. In these cases, the "good" of the patient is equated sometimes with prolonging life, no matter what the quality of function. But in spite of these obvious cases of "over care," the nature of the decision to utilize or remove life support must be portrayed accurately. More often than not, physicians continue life support because there seems to be some hope of restoring the incapacitated patient to a quality of function that the patient would consider beneficial. Medicine is not an exact science and the patient must be given the benefit of the doubt. When the PSDA was being discussed prior to approval by the U.S. Senate, the statement was often heard: "Thirty percent of Medicare funds are expended upon people in the last month of their lives." While the statistics may be accurate, it should be realized that this is a retrospective judgment. If physicians knew which patients would die in spite of aggressive and expensive care, the decision to withhold or remove life support would be much less complicated. But because medicine is an art as well as a science, the outcome of aggressive therapy is not predictable. Hence, determining what is "good" for the patient requires more than the statement of a proxy or attorney-in-fact.
While an advance directive is a useful and beneficial method of exercising one's natural right to make decisions concerning health care, perhaps the sledge hammer approach of the PSDA will cause more problems than it solves. Clearly, medical care should be withheld and life support should be removed if they are not beneficial for the patient. However, deciding what is beneficial is an act of love on the part of the proxy, and an act of advocacy on the part of the physician. Both love and advocacy are frustrated unless adequate communication and empathy precede medical decision making.
Kevin O'Rourke, OP
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