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The Regulatory EnvironmentOctober 1998Advance Directives/Health Care DecisionsThe advance of modern medicine enables us to live longer and have healthier lives. Great progress has been made in conquering and preventing many serious diseases. Many challenges come with such progress. In time of serious illness or imminent death, health care providers are called upon to make wise choices about the means that are available to sustain life. Many may need to make such decisions either for themselves or for loved ones. These can be between the most complex and difficult decisions of our lives.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. Overall 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. Moreover, there are situations in which neither the patient or the family has the ability to end such unhappy circumstances. 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). However, 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 were 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). 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). 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 could not be more dissimilar. Advance directives are seen as a way to protect one’s legal rights for refusal of treatment. 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 patient’s wishes, physicians consider their views giving them immense weight. After all, whom 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. 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 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”. 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). In addition, physicians may give their own ethical principals priority when they conflict with patient’s wishes.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” (Lynne). 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, placing the patient on life-support systems 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. Many institutions are largely paying “lip service” to this matter. “Many institutions, reluctant to give the appearance of informing them 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. However, the PSDA has increased the public’s knowledge. More stills need 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.When facing a terminal illness or imminent death or when a decision must be made about some specific treatment, we can readily understand how a person in prolonged agony, with no hope of recovery, might view death as a release from suffering. We also can appreciate how a family might even pray for the death of a loved one afflicted with an incurable disease. Euthanasia is the intentional causing someone’s death by either applying or withholding medical technology when that person is suffering from some terminal illness. To many, no matter how good the motives might seem, euthanasia is an attack on vulnerable human life. Everyone needs to have a clear understanding of what distinguishes euthanasia from morally justifiable decisions about accepting or refusing medical treatments in time of grave illness and imminent death.Patients and their families frequently need help in deciding which level of care is appropriate for preserving life. Such complex decisions often require consultation with health care professionals and with a parish priest; a hospital chaplain or others involved in a pastoral ministry. Those who are sick depend upon physicians and other health care professionals to explain the nature of their condition and the remedies that offer some relief. Some forms of medical intervention are designed to cure diseases; others merely relieve the symptoms or retard the progress of a disease. Still, others are designed to compensate for the failure of some bodily function. The ethical judgment to be made is whether the benefits of a proposed treatment warrant the significant difficulties and suffering which it may bring to a particular patient. Conversely, foregoing a potentially useful medical treatment is always morally wrong because of a decision that one’s very life is too burdensome and thus no longer worth living; such a decision opens the door to Euthanasia. Physician-assisted suicide occurs when the physician gives the patient the means or knowledge to commit suicide. Euthanasia is when the physician administers the death causing drug or agent. In June 1990, the Supreme Court decided that the parents of 32 year old Nancy Beth Cruzan, who had been in a car accident and in what Doctor’s called a vegetative state for seven years, could not end her treatment. Later that same year, a Missouri Court ruled that the feeding tube could be removed after evidence that Cruzan would wish to terminate the treatment was proven. Nancy Beth Cruzan died twelve days later (Pozgar 1996, p. 504). Physician-assisted suicide presents one of the greatest dilemmas to the medical profession. “Euthanasia is one of the most important public policy issues being debated today, according to the International Anti-Euthanasia Task Force; (http://www.iaetf.org/faq.htm).We should not stop medically useful interventions because we are tired of living or feel we no longer have a contribution to make. “The sentiment for physician-assisted suicide is not the right answer to the problem of inadequate care. Although for some patients hastening death might appear compassionate, institutionalizing physician-assisted suicide as a medical treatment would put many more patients at serious risk for unwanted and unnecessary death.” Angell, M. 336, 50-53 (1997). Discretion enables us to weigh all the factors involved in making an informed medical decision for another person. When doubt persists, the prudent person will seek the counsel and advice of wise persons well trained. References: 1. King, N. (1996). Making Sense of Advance Directives. Washington, DC:Georgetown University Press. 2. PUBLIC LAW 101-508 (NOVEMBER 5, 1990)THE PATIENT SELF-DETERMINATION ACT, Sections 4206 and 4751 of the Omnibus Budget Reconciliation Act (http://ccme-mac4.bsd.uchicago.edu/CCMEPolicies/Laws/PSDA) 3. Edwards, Barbara S. (1994). When a Living Will is Ignored. American Journal of Nursing, 94(7), 64-5. 4. 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). 5. Hoefler, J.M. (1994). Deathright: Culture, Medicine, Politics and the Right to Die. Boulder, CO:Westview Press. 6. 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. 7. Jaffe, C., & Ehrlich, C.H. (1997). All Kinds of Love: Experiencing Hospice. Amityville, NY:Baywood Publishing. 8. Lynne, Joanne. (1986). By No Extraordinary Means. Bloomington, IN:Indiana University Press. 9. Purtilo, R. (1995). Ethical Dimensions in the Health Profession. Philadelphia:W.B.Saunders. 10. 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. 11. Angell, M. (1997). The Supreme Court and Physician Suicide: The Ultimate Right. New England Journal of Medicine. 12. International Anti-Euthanasia Task Force; (http://www.iaetf.org/faq.html) “NRLC,” Suicide Factsheets, NRLC Depart. Of Medical Ethics, 419 7th Street NW, Washington, DC 20004. 13. Docker, C. (1995). Deciding How We Die. The Use Limits of Advance Directives. (http://www.finalexit.org/wfn27.3.html).

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