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:
When a patient's advance directive was too restrictive to allow a simple or basic procedure that would yield the patient substantial benefits from the physician's perspective, the physician gave their own ethical principals priority. The reverse may also be true: Despite an advance directive requesting that treatment be provided, physicians may judge that treatment would be of little benefit to the patient in the given circumstances and unilaterally decide to withhold or withdraw treatment. (p. 93)
Fear of litigation is another factor. Added to the moral, ethical and humane considerations, physicians also must keep the legal risks in mind. No group is more subject to the risks of litigation than the medical profession. The medical professional does not want to be accused of pressuring the family for removal of life support, or to be second guessed by other medical personnel in a court of law. Even when advance directives that would seem to protect the physician are executed, relieving the physician of some liability, physicians may not comply with their patient's wishes (Hoefler, p. 93).
Uncertainty about the meaning and application of a directive is another reason for not implementing an advance directive once it has been found and examined. The law on honoring advance directives from one state to another is unclear. "Actually the forms are not significant legal documents in and of themselves" (Purtilo, 1995, p. 132-133). "Even a signed living will could be disqualified if it failed the court's measure for being not recent enough, not logically consistent, or not specific enough" (Lynn). Interpreting advance directives can be problematic at times, as when information is lacking, or when a strict reading of the document does not seem to make sense. For example, the advance directive may suggest one course of care, while the physician and/or family believe the patient would in fact have wanted something else. No advance directive can anticipate every situation that could possibly arise.
Emergency circumstances can be another barrier to the implementation of advance directives. The emergency room physician treating an accident victim is not really in a position to halt things immediately when a nurse, looking through the patient's wallet for people to contact, finds a living will card. If heroic measures are applied in an emergency situation, placing the patient on life-support systems, it is sometimes very difficult to remove them (King, p. 91).
Some believe that discussing advance directives upon admission to a health care facility is yet another factor. Some would argue that this is the wrong place and the wrong time. The PSDA made it necessary for every patient to be asked, upon admission to a health care institution if they have an advance directive or want to prepare one and to supply them with the forms. Many institutions are largely paying "lip service" to this matter. "Many institutions, reluctant to give the appearance of proselytizing about advance directives, do little to initiate discussions with new patients who do not have them" (King, p. 110). Many hospital personnel whose job it is to answer questions and help patients execute advance directives have insufficient training. Perhaps the PSDA needs to be modified. The PSDA has, however, increased the public's knowledge. More still needs to be done. Why, then, should an information giving requirement concerning advance directives be applied not to physicians but to health care institutions? Most would agree that the outpatient setting is the best place and time for such discussion. The physician and patient could discuss this issue one to one before an admission to a hospital or long term care facility. If advance directives are to become an integral part of health care it is essential to implement interventions that would make a difference. What can nurses do if they believe a patient is being treated contrary to the spirit or letter of an advance directive?
According to the American Nurses Association Code of Ethics (ANA, 1985): Clients should be as fully involved as possible in the planning and implementation of their own health care. Clients have the moral right to determine what will be done with their own person; to be given accurate information, and all the information necessary for making informed judgments; to be assisted with weighing the benefits and burdens of options in their treatment; to accept, refuse, or terminate treatment without coercion; and to be given necessary emotional support. Each nurse has an obligation to be knowledgeable about the moral and legal rights of all clients and to protect and support those rights.
Nurses can make sure everyone on the health care team knows the document exists, beginning with the physician. Place it in a conspicuous position on the patient's chart and label the chart, if necessary.
State laws may place some restrictions on advance directives or a patient may have one from another state. If, after reading an advance directive, a nurse is unsure whether it meets the state's requirement, the hospital's risk manager, nursing administrator or ethics committee should be asked to review the document with the nurse (Edwards).
Nurses in the outpatient setting can educate patients to ask their physicians to make their advance directive part of their medical record, they should keep a copy where it can be found easily and to communicate their wishes clearly to their family and physician and be sure they are understood.
Providing psychosocial support for patient and family has always been an essential part of nursing. Nurses may well be trusted in large part because they are presumed to act in defense of their patients lives. Nurses give great importance to the psychosocial health of their patients. According to Smith, most professional literature related to the psychosocial care of the dying is written by nurses. "The dichotomy between nursing and medicine is striking in this regard" (Smith, 1985, pg. 284).
Nurses will undoubtedly, sometime during their career, be faced with similar challenges. However, being focused on the nurse's most significant role as a patient advocate, will assist the nurse when making incisive decisions.
American Nurses Association. (1985). American Nurses Association Code for Nurses with Interpretive Statements, Section 1.1. Washington, DC:ANA.
Docker, C. (1995). Deciding How We Die. The use Limits of Advance Directives. [On-line]. Available: http://www.finalexit.org/wfn27.3.html.
Edwards, Barbara S. (1994). When a living will is ignored. American Journal of Nursing, 94(7), 64-5.
Fishback, R. (1996). Harvard Medical School Division of Medical Ethics. Care Near the End of Life. [On-line]. Available: www.logicnet.com/archives/file2001.php.
Hoefler, J.M. (1994). Deathright: Culture, Medicine, Politics and the Right to Die. Boulder, CO:Westview Press.
Jacobson, J.A., Kasworm, E., Baltin, M.P., Francis, L.P., & Green, D. (1996). Advance directives in Utah. Journal of American Medical Association, 156, 1862-1868.
Jaffe, C., & Ehrlich, C.H. (1997). All Kinds of Love: Experiencing Hospice. Amityville, NY:Baywood Publishing.
King, N. (1996). Making Sense of Advance Directives. Washington, DC:Georgetown University Press.
Lynne, Joanne. (1986). By No Extraordinary Means. Bloomington, IN:Indiana University Press.
Nuland, S.B. (1993). How We Die. New York:Vintage Books. Purtilo, R. (1995). Ethical Dimensions in the Health Profession. Philadelphia:W.B.Saunders.
Smith, Walter, J. (1985). Dying in the Human Life Cycle. New York:Holt, Rinehart, & Winston.
Weiler, K., Eland, J., & Buckwater, K.C. (1996). Iowa nurses' knowledge of living wills and perceptions of patient autonomy. Journal of Professional Nursing, 12(4), 245-252.