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Medical empowerment of the elderly.

Medical Empowerment of the Elderly

"Empowerment" of the elderly has become a popular gerontological buzz-phrase of the 1980s.[1] It refers to the movement among advocates for older individuals to encourage activism among the capable elderly regarding their own rights and interests whenever possible, within a society in which rights are respected and acted upon only if one claims those rights personally or through a proxy.[2] There is widespread philosophical agreement among professionals concerned with the well-being of the elderly that political, legal, social, economic, and health-related services that support the capacity of older persons to speak for themselves--that is, that empower older persons--greatly enhance the autonomy, independence, and dignity of the older self-advocate.

Additionally, recent research underscores the relationship between a sense of control over one's decisions and life goals and positive outcomes in aging.[3] Many interpret such data to show that the extent to which individuals are encouraged to take more control over their lives and health may be a major determinant of satisfaction and well-being (that is, quality of life) in their later years.

The chief legal mechanism of empowerment in the health area is the doctrine of informed consent, the requirement that medical interventions be administered to a patient only if preceded by the voluntary, adequately informed agreement of a capable patient or that patient's legally authorized substitute decision-maker. The depth of commitment to the notion of empowerment of the elderly in health care is manifested in the growing use of legal planning devices, such as the living will and the durable power of attorney, on a prospective basis to effectuate informed consent later in life.[4] Through these legal mechanisms as well as other means, professional advocates, family members, friends, physicians, and other health care providers all play an important role in helping the elderly to make and exercise their own life choices.

Limits of Empowerment

The enthusiasm for empowerment must be tempered with caution, however. There are important limits and nuances to this concept that must be thoroughly considered.

First, power over one's life entails more than mere control over particular choices. In a real sense, it is knowledge that creates power. Hence, the older individual's purported right to make choices about matters affecting him or her acquires meaning only if those choices are accompanied by adequate information, both about the personal rights involved and the factual ramifications of one's decision, as well as the range of reasonable alternatives among which to choose. As our early experience with "Medigap" insurance policies teaches, the older person's right to choose should not be confused with the "right to be ripped off." Thus, insistence on adequate information is essential to meaningful (as opposed to apparent) empowerment.

Second, decision-making power must be accepted voluntarily (if at all) by the older person. We rightly start with a legal and ethical presumption that most elderly people wish to make their own decisions regarding health care. However, this presumption is rebuttable, not conclusive. There are a significant number of adults, including but by no means limited to a substantial percentage of the elderly, who would not voluntarily accept responsibility for making some or all of their own difficult decisions.[5]

This paradox--older individuals who would rather not make their own decisions--compels us to confront a fundamental policy issue of whether we should permit capable, informed older adults voluntarily to waive empowerment if they so wish, or instead force empowerment on them. Put more starkly, should we recognize a right of the elderly to be dependent on others? This dilemma invokes basic philosophical premises about the nature of personal choice and responsibility, and their interaction and tension. In the context of elderly empowerment, is the relationship of rights and duties one of polarity or correlativity?

Forced Empowerment

There are several plausible arguments for forcing capable, informed older individuals to be empowered, that is, to advocate for themselves and participate maximally in their own significant decisions. Some would argue that there is a fundamental duty incumbent on all of us to be autonomous, to accept personal responsibility as masters of our own ship. This view sees that decisions concerning one's own health are of such a deeply personal character that they cannot ethically be delegated to anyone else. The decision--and its consequences--belong to the patient alone. Jay Katz has claimed, for example, that as a matter of universal ethical and social policy, he would never permit any capable patient to abdicate or waive his or her right to make final medical decisions.[6]

Moreover, under this philosophical view, older persons who are capable of being empowered to fend for themselves in medical decisionmaking have a duty to assume responsibility for decisionmaking as a matter of justice. Otherwise they will unnecessarily consume increasingly scarce resources that should instead be directed toward the growing number of involuntarily dependent elders who have no choice but to rely on others for basic advocacy and proxy decision-making services. The establishment, administration, and monitoring of a proxy decision-making apparatus requires substantial financial costs.

Further, Katz and others have suggested that forcing consumers of medical services, including the able elderly, to accept decision-making power is the only effective way to safeguard against health care professionals acting paternalistically and condescendingly toward the consumer.[7] This position suggests a skeptical, even cynical, perspective toward the helping professions, particularly toward physicians, but one that is not convincingly disproved by historical analyses of communication within the professional-patient relationship and failures in implementing the spirit of the doctrine of informed consent.

Forgoing Empowerment

Nevertheless, persuasive arguments can be asserted in favor of allowing capable, informed older persons the choice to forgo, to a greater or lesser extent, personal empowerment and thereby waive or abdicate responsibility for some of the decisions they are ethically and legally entitled to make. On this position, choosing dependence on others rather than independence would be a respected alternative for the capable elder.

It can, first of all, be argued that honoring the older person's autonomy logically encompasses that person's right to delegate to others his or her decision-making duties, just as much as does honoring his or her right to consent to or refuse offered medical services. There is no logical mistake in permitting a capable person knowingly and voluntarily to transfer some decision-making power to another of his or her choosing. As Arthur Dyck reminds us, autonomy is not synonymous with self-determination; rather, autonomy is the capacity for self-determination, a capacity that the individual may or may not choose to exercise.[8] Both ethically and legally, society clearly permits informed individuals voluntarily to choose not to exercise their fundamental rights in other areas of life. For instance, few of us would object to an older person turning over to an attorney substantial power relating to management of his or her financial affairs. Since the attorney stands in a fiduciary relationship with the client, he or she is ethically and legally obligated to act in the client's best interests. Similarly, the fiduciary nature of the physician-patient relationship mandates a commitment to the patient's best interests; hence, appointing a physician as an agent for choosing the appropriate course of medical care to follow is neither unwise nor an unwarranted burden upon the physician.[9]

Perils of Independence

Nevertheless, placing too much reliance on empowerment of the elderly can lead, if we are not careful, to the implicit condoning of neglect of the elderly if they do not exercise their power sufficiently. Individualism and independence, if too rugged, may turn into health care nihilism. When our expectations about responsibility are shifted too radically from institutions and agencies to the older individual, we run the risk of letting those institutions and agencies escape their proper duties too easily. We may provide them with too ready a defense, in the face of neglect, harm, and deterioration of older patients, that the power belonged to the older person (that is, the victim), and that the institution or agency was merely carrying out the elder's explicit or implied orders.[10] To blend autonomy with beneficence effectively, empowerment ideally should entail a negotiated sharing, as opposed to a sequential transfer of authority.[11]

For instance, an older hospital patient may insist on being discharged to a home environment where he or she lives alone and refuses assistance from home care staff. The hospital and its staff who facilitate the discharge without giving sufficient attention to alternatives may be compromising their commitment to beneficence under the guise of respecting autonomy. The institution and its staff should instead make every reasonable effort to negotiate terms of home care that are palatable to the patient but that provide at least minimally adequate assistance and assurance of protection. The proper degree of cajoling, persuasion and--if necessary--legal intervention will vary from case to case.

Lastly, it frequently is difficult to ascertain and interpret older individuals' actual preferences regarding specific questions about their medical care or other services. Many may wish to receive certain services, or conversely may desire to reject those services, but are too embarrassed or afraid to announce their preferences. Even after barriers to effective communication and informed consent have been vigorously addressed, some persons still simply would rather be led by others than assert themselves. This phenomenon should not surprise us, considering how many young and middleaged persons in our society in effect elect to forfeit their own empowerment in important matters in favor of passively relying on the presumed expertise, experience, charisma, or caring of professionals, family members, or friends.

We cannot reasonably expect people who have a long-standing personal history of attempting to "escape from freedom"[12] suddenly to embrace an ethic of individual empowerment upon reaching a certain chronological age. If anything, the physical and social infirmities of age tend to compel movement in the opposite direction. Several recently completed empirical studies regarding the process of geriatric decisionmaking, as well as a body of published research concerning do-not-resuscitate decision-making, strongly suggest that many elders both want and expect others, such as their physicians, family members, and friends, to take primary responsibility for making medical decisions. Frequently these surrogate decisionmakers are provided with little or no direction by the older person to aid them in fulfilling this responsibility.[13]

Of course, the empirical fact that some elderly persons refuse their own empowerment does not definitively settle the normative question of whether such dependency is acceptable, let alone desirable. Still, such data are a meaningful part of health policy formulation and cannot be merely dismissed; instead, the relevance of moral principles for the question of empowerment of the elderly must be tested against this empirical basis. Ethical questions are not resolved by popular plebiscite, but actual opinions and actions are relevant factors in the health policymaking calculus.

Resolving the Tension

How, then, may we begin to resolve the tension created between the emphasis on empowerment of the elderly and the persisting desire by certain capable, informed older adults voluntarily to delegate their decision-making rights and responsibilities? No solutions are hazarded here, but a few guidelines may prove helpful.

The common law regarding the doctrine of patient waiver as an exception to the ordinary medical informed consent requirement is generally sensible and instructive. Such allowances recognize that society has a duty to strive for and facilitate empowerment of the elderly without forcing it on unwilling persons. Physicians and others in positions of authority ought to presume that most older persons would desire to make, or at least extensively participate in, medical and other decisions having an impact on their own lives, reserving reliance on a waiver of decision-making rights to a special, extraordinary occurrence.

By the same token, physicians should also recognize that exceptions to this presumption are displayed in the lives of a sizable number of older patients. Some capable elderly individuals will voluntarily and authentically choose, based on adequate information, to refrain from exercising their decision-making rights and responsibilities and to delegate those rights and responsibilities to the physician, family, or friends. Respect for persons necessarily entails respect for such conscious decisions not to decide personally.

The key ethical and legal concern lies in achieving the delicate balance of recognizing and respecting the older person's right to transfer empowerment, but not doing so too quickly or facilely. Physicians and other health care professionals should ensure that any purported delegation of decision-making authority by an older patient is indeed intentional and voluntary, made in the context of adequate information conveyed ( or at least a bona fide attempt to convey) to the patient about the decision itself, its likely ramifications, and the patient's right to make that decision.[14] Before accepting and acting on the older patient's transfer of decision-making power, the physician or other professional should insist that the patient's wishes be indicated expressly and unambiguously. As an element of risk management, all professional-patient interactions concerning empowerment or its delegation should be thoroughly documented in the patient's medical record. In these circumstances, the physician or other health care professional ought to openly acknowledge reliance on the waiver exception, rather than hollowly pretend to follow the standard informed consent ritual.[15]

Empowerment of the elderly in medical decisionmaking is a noble social, political, and ethical cause. Like other noble causes, however, excesses and intolerances can occur unless we are on guard against them. It would be ironic indeed if we were to deny the elderly their autonomy by forcing it upon them. Yet another exquisite challenge for health professionals lies in recognizing and respecting the older patient's right to forgo and thereby delegate choice, as well as the right to choose his or her own medical destiny. References [1]Philip G. Clark, "Individual Autonomy, Cooperative Empowerment, and Planning for Long-Term Care Decision Making," Journal of Aging Studies 1 (1987), 65-76. [2]Elias S. Cohen, "Nursing Homes and the Least-Restrictive Environment Doctrine," in Legal and Ethical Aspects of Health Care for the Elderly, Marshall B. Kapp, H.E. Pies, and A.E. Doudera, eds. (Ann Arbor, MI: Health Administration Press, 1986), 173-184, at 173, 177-78. [3]Judith Rodin, "Aging and Health: Effects on the Sense of Control," Science, 19 September 1986, 1271-1276, at 1271. [4]Society for the Right to Die, The Physician and the Hopelessly Ill Patient: Legal, Medical, and Ethical Guidelines (New York: Society for the Right to Die, 1985); Mark Fowler, "Appointing an Agent to Make Medical Treatment Choices," Columbia Law Review 84 (1984), 985-1031, at 985. [5]Arthur L. Caplan, "Can We Talk? A Review of Jay Katz, The Silent World of Doctor and Patient," Western New England Law Review 9:43 (1987), 43-52, at 47-48; Marie Haug, "Doctor-Patient Relationships and the Older Patient," Journal of Gerontology 34:6 (1979), 852-60, at 852. [6]Jay Katz, The Silent World of Doctor and Patient (New York: Free Press, 1984). [7]See Barry Furrow, "Informed Consent: A Thorn in Medicine's Side? An Arrow in Law's Quiver?" Law, Medicine and Health Care 12:6 (1984), 268-73, at 278. [8]Arthur Dyck, "Self-Determination and Moral Responsibility," Western New England Law Review 9 (1987), 53-65, at 53-54. [9]See Benjamin Freedman, "A Moral Theory of Informed Consent," Hastings Center Report 5:4 (August 1975), 32-39, at 32. [10]Sandra H. Johnson, "Sequential Domination, Autonomy and Living Wills," Western New England Law Review 9 (1987), 113-37, at 113, 119. [11]Harry R. Moody, "From Informed Consent to Negotiated Consent," Special Supplement Gerontologist 28 (1988), 64-70, at 64. [12]Eric Fromm, Escape From Freedom (New York: Rinehart and Company, 1941). [13]Terrie Wetle, Susan Levkoff, and Julie Cwikel, "Research in Nursing Homes: Ethics and Methods"; Nancy R. Zweibel and Christine K. Cassel, "Preferences of Older Patients and Their Children for Life-Extending Medical Care: An Empirical Analysis of Values in Geriatric Medicine"; papers presented at the 40th Annual Meeting of the Gerontological Society of America, Washington, DC, November 21, 1987. [14]Alan Meisel, "Informed Consent: Who Decides for Whom?" in Medical Ethics and the Law: Implications for Public Policy, M. Hiller, ed. (Cambridge: Ballinger Press, 1981). [15]Jay Katz, "Physician-Patient Encounters `On a Darkling Plain'," Western New England Law Review 9 (1987), 207-226, at 207, 217. Marshall B. Kapp is professor in the School of Medicine, Wright State University, Dayton, Ohio.
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Title Annotation:medical rights of the aged
Author:Kapp, Marshall B.
Publication:The Hastings Center Report
Date:Jul 1, 1989
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