This paper presents an in-depth discussion about the issues involved in honoring a patient’s advance directive. Ethical considerations surrounding the issue as they relate to the nursing profession are addressed. The purpose of the paper is to express an informed position on the issue of honoring a patient’s advance directive and explore reasons why one may not be honored. The topic was chosen on account of personal observation and awareness in an acute care setting.
The sources used to develop this paper are published nursing journals, current books related to this issue, and the Internet. The paper concludes with recommendations to assist the professional nurse in dealing with issues related to honoring a patient’s advance directive. Will Your Advance Directive be Honored?
Advances in medical technology have done a great deal to produce miraculous cures and recoveries. In some circumstances however, these advances have created problems for the elderly. More aggressive technology approaches are used to extend the life of the elderly. On the whole the elderly, as well as others, welcome that development — even if they fear some of its consequences. With these advances it has become possible to keep people in a vegetative state for almost unlimited periods of time.
Moreover, there are situations in which neither the patient nor the family has the ability to bring such unhappy circumstances to an end. For this reason, advance directives are becoming increasingly prevalent. In a recent study, King (1996) reported that approximately 90% of the American public want advance directives. Both the young and the healthy express at least as much interest in planning as those older than 65 and those in fair to poor health (p. 77).
According to Lynne (1986) nurses play a significant role because they attend to the patient continuously and have an especially strong claim to be allowed the opportunity to be comfortable with the care plan (p. 216). Advance directives, also known as living wills, are documents that a person can complete to ensure that health care choices are respected. An advance directive only comes into play if a person cannot communicate wishes because the person is permanently unconscious or mentally incapacitated.
A 1991 law called The Patient Self Determination Act (PSDA) requires hospitals and nursing homes to tell patients about their right to refuse medical treatment. People can put anything in their advance directives. Some people list every medical intervention they do not want, while others want to make clear their request for heroic measures at any cost. It is a way to spell out personal wishes. It is crucial that the issue of advance directives and the issue of euthanasia not be confused.
These issues couldn’t be more dissimilar. Euthanasia is largely illegal. Advance directives are seen as a way to protect one’s legal rights for refusal of treatment. But are advance directives effective in achieving the aim intended? There is evidence to indicate that advance directives alone fall far short of their objective. In a recent study conducted at Harvard Medical School, Fishback (1996) reported 66% of all physicians interviewed felt there was nothing wrong with overriding a patient’s advance directive, even if the directive unambiguously stated the conditions for the withdraw and withholding of medical treatment.
Fishback also reported 40% of the physicians questioned chose a level of care different from that requested in advance by patients who subsequently became incompetent. The physicians interviewed indicated that they would only follow a patient’s advance directive if it was consistent with their own clinical judgment.
The physicians indicated that they wanted to reserve the right to make clinical judgments about treatment regardless of a patient’s request. In another study, Docker (1995) reported on a study where 900 patients were studied over a period of ten years. In very few cases did advance directives have any influence over decisions to withdraw or withhold life prolonging treatment.
The passage of the PSDA half way through the study changed their effectiveness by barely one percent. A study conducted in the state of Utah, among 1398 participants, found little evidence that advance directives affect life sustaining treatments (Jacobson, Kasworm, Baltin, Francis, Green, 1996). Jaffe and Ehrlich (1997) report “unfortunately, the advance directive movement has not had great success . . . breakdowns occur with alarming frequency in the chain of responsibility to observe them” (p. 145).
When patients were transferred from ambulatory to acute care settings, only 26 percent of the patients who had advance directives had them recognized by the admitting hospital (Jaffe & Ehrlich, p. 143). These statistics command our attention. They also make us focus on the tension and disagreement that exists between physicians and their patients. The population clearly seeks more control over both their future medical care and also the method, timing, and place of their death.
Patients want “. . assurance that there will be no unreasonable efforts, an affirmation that the dignity to be sought in death is the appreciation by others of what one has been in life. . . the acceptance of one’s own death is a necessary process of nature . . .”(Nuland, 1993, p. 255). Yet these statistics show that physicians often do not allow patient control.
How disheartening for a patient to fear that the doctor cannot be trusted in a matter of such importance. It appears that many doctors have no respect for their patients’ wishes. According to Edwards (1994), nurses as patient advocates have a responsibility to make sure patients’ wishes are respected; it is nursing’s role to raise informed questions and even objections if a patient’s treatment violates the patient’s wishes.
Without strenuous interventions to improve the situation, we will have expended a vast effort to establish something that basically doesn’t work. Let’s evaluate the reasons for the failure to implement a patient’s advance directive. In one study, nurses indicated that family opposition to the terms of the advance directive was the primary factor that inhibited health care providers from following the patient’s living will (Weiler, Eland, Buckwater, 1996).
When families contradict the patients wishes, physicians take their views under consideration giving them immense weight. After all, who does the physician have to answer to? The living, of course. This is why when the family disagrees with the advance directive, the family’s decisions usually win out. Dealing with death and suffering on a daily basis does not make it easy for medical professionals to make decisions about removing life support. Most make an effort to be as dispassionate as possible about such situations so that families can make informed decisions.
The result is that the profession tends to err on the conservative side (Edwards). Another factor for the failure to follow an advance directive was the treating physician’s refusal (Weiler et al). One reason for the physician’s refusal may be reluctance to acknowledge increasing patient autonomy. After all, the medical decision horizon looks substantially different today than it did just a few years ago. Before the 1960’s physicians enjoyed a substantial degree of autonomy in making treatment decisions for, rather than in conjunction with their patients.
Unlike in the 1980’s and 1990’s, where medical decision making has become radically transformed from what once was a matter of professional concern into what has become a matter of individual choice. Change is in the air, brought on by forces that have put pressure on members of the medical profession to ease their control on patient care and treatment decision making. “The days of autonomous physician ruling by fiat without much consideration of patients wishes are slowly drawing to a close” (Hoefler, 1994, p. 191).
According to Hoefler, “dramatic changes in the medical profession itself have led to a breakdown in patient trust”. Another reason for their refusal may be that it is unmistakably apparent that medical paternalism still exists. “A lingering paternalistic attitude on the part of many physicians is fostering distrust. If the treatment preferences of patients are to be honored, doctors may face the difficult prospect of relinquishing, at least in part, this central element of their professional role” (King, 1996, p. 51-52).
Still another reason physicians may refuse is a for-your-own-good reasoning. If physicians are reluctant to honor patients’ choices, they may explain their reluctance as a disagreement about whose judgment is better – theirs or their patient’s (King, p. 52). Also, physicians may give their own ethical principals priority when they conflict with patients wishes. This is reflected in the following statement by J.M. Hoefler: withdraw treatment. (p. 93)