Ethical Foundations of Palliative Care for Alzheimer Disease

TEN: The Tendency of Contemporary Decision-making Strategies to Deny the Condition of Alzheimer Disease

mc h a  t e r t e n The Tendency of Contemporary Decision-making Strategies to Deny the Condition of Alzheimer Disease Jos V. M. Welie, M.Med.S., J.D., Ph.D. Even the most cursory review of the contemporary bioethical literature reveals that respect for the autonomy of patients has become the leading bioethical principle, easily trumping more traditional principles such as the principles of nonmaleficence and beneficence. This principle has been operationalized most clearly in the patient’s right to grant informed consent to proposed medical interventions. Health care providers may not initiate treatment, including palliative treatment, unless the patient has consented. Except in medical emergencies, informed consent is a necessary condition of treatment. This means that patients who are mentally incompetent to make decisions about their own health care, and hence legally unable to grant consent, cannot be treated. The classic example is that of the patient suffering from Alzheimer disease (AD). Unlike the patient who is unconscious after an accident, the AD patient will never again regain her capacity to make decisions about her own health care. Unlike the cancer patient who takes high doses of painkillers on most days but can do without on “good days” and be quite lucid, most AD patients do not have“good days.”Dementia patients are permanently unable to exercise their right to autonomous decision making. If patient autonomy is such an important value that it trumps all other values in decision making about health care, how can we treat incompetent patients in an ethically sound manner? If the single most significant vice of health care providers is to treat patients in a paternalistic manner, making health care decisions for patients without involving them in the decision making process and without allowing them the final say in these matters, what should care providers do when their patients have become incompetent? Obviously, it would be wrong to suddenly treat them in a paternalistic manner. The simple fact that a patient has become incompetent cannot possibly change the vice of paternalism into a virtue. A commonly proposed solution to this problem is the so-called advance directive . Advance directives allow patients to exercise their right to autonomy before they become incompetent. Patients may write down a set of specific instructions about their future health care that is binding for health professionals , called a “living will.” Alternatively, patients can grant another person a “power of attorney”; that is, the authority to speak on their behalf once they have become incompetent. The patient can specify how this surrogate should make decisions; or, in the absence of specific instructions, it is commonly believed that the surrogate should step into the shoes of the patient and decide what the patient would have decided had she been competent, a process known as “substituted judgment by a surrogate.” These two decision-making mechanisms—living wills and substituted judgments by a surrogate—are generally contrasted with a third alternative: best-interest judgments. If health care decisions for incompetent patients are based on best-interest judgments, it means that the decision will reflect what is objectively in the patient’s best interest. Obviously, a patient’s objective best interests may differ from what the patient would have preferred subjectively. Patients—people in general—frequently decide to do what they know not to be in their own best interests. Examples include enjoying unhealthy diets, living sedentary lifestyles, noncompliance with prescribed medications, undergoing dangerous aesthetic surgeries, and the committing of self-sacrificial suicides for the sake of relieving loved family members of their caretaking burden. Since autonomy allegedly trumps all other values, including the values of well-being, health, and even life, best-interest judgments are abhorred by many bioethicists and health lawyers (though not by all; for a recent example, see Sailors,2001).Their argument against best-interest judgments may take the form of the following analogy. It is ethically wrong to force a competent patient into undergoing medical treatments that she has refused, even if her refusal will have 164 Clinical Ethics Issues evident detrimental consequences to her own well-being. By the same token, it would be wrong to impose onto an incompetent patient treatments she has not consented to, even if those treatments are objectively in her best interests. The fact that a patient has become unable to resist and refuse does not suddenly justify...