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LETTER TO THE EDITOR< |
1 Department of Neurology and Alzheimer's Disease Research Center, University of Alabama at Birmingham.
2 VA Boston Healthcare System and Department of Psychiatry, Harvard Medical School, Boston, Massachusetts.
AN ATTRACTIVE and intriguing aspect of the capacity assessment field is that it occupies an important intersection between a wide variety of disciplines and perspectives, among them medicine, clinical practice, behavioral science, law, and ethics. Each of the commentaries to our preceding article adopts one or more of these vantage points in highlighting new and needed directions in the empirical study of capacity in older populations with neurocognitive and neuropsychiatric disorders.
In his commentary, Marshall Kapp adopts legal and public policy perspectives in addressing the challenges that capacity loss will present our society in the coming century. While recognizing the clinical progress that the standardized assessment of capacity represents, he focuses on the implications to the legal system of this progress. He properly notes that capacity determinations for elderly individuals will need to occur in both clinical and legal settings, and he highlights the need for research that can inform us about the desirable and realistic scope of judicial involvement in this enterprise. Kapp also raises research questions as to whether and how the legal system actually uses capacity evaluation findings and reports. Finally, Kapp proposes that new approaches to capacity decision making be considered, in which the decision of an individual proxy might be replaced by shared decision making among patients, families and friends, or a health care panel.
In our experience, hospital-based biomedical ethics committee can be useful forums for resolving ethical issues involving capacity. We wonder if there might be a community-based equivalent? For example, in Quebec a guardianship hearing may result in the appointment of a plenary guardian ("curator"), limited guardian ("tutor"), or "advisor." An advisor is a legally appointed individual who provides support but has no authority to make decisions on behalf of the individual. The advisor receives guidance from a three-person committee that involves the lay public (a "tutorship counsel"). We are not aware of any U.S. equivalents to advisors and tutor counsels, although some courts actively direct cases to mediation and less restrictive alternatives to guardianship for resolving issues of family conflict. Increasing dialogue is needed between legal and clinical systems to explore innovative solutions for addressing the needs of elders in the least restrictive manner while respecting the elders' values and preferences.
In his commentary, Mick Smyer also addresses interrelationships of clinical and legal practice in the capacity arena. He notes the importance of clinical capacity assessments that take into account the definition and specific legal elements for capacity of the local jurisdiction. A similar appreciation of state-level variability should inform assessments of capacity to live independently, which is the standard for legal guardianship. Public policies that encourage home-based and consumer-directed care—as a substitute for institutional care—may compel increasing assessments of independent living capacity. However, the global capacity of "independent living" comprises a vast array of functional abilities that are challenging to assess in a clinical setting. A current need in the capacity field is to establish empirically the core abilities and problem-solving skills that underlie this capacity, and to operationalize them in clinical assessment measures.
In her commentary, Sara Qualls views capacity issues through the lenses of behavioral science and family systems. Like Kapp, Qualls observes that many issues of diminished capacity are resolved nonlegally within supportive family environments—a shared decision making relying sometimes on the heavy hand of familial social pressure. In our experience, the capacity question is most often raised when the elder with diminished capacity is at serious risk of harm, and there are no family members or friends, or alternatively when family members are in open conflict or themselves have quite poor judgment. For example, in a recent clinical situation, an elder with schizophrenia fell at home and was unable to get up. A brother, who lived with him, addressed the situation with "shared familial decision making"—by providing food to the elder while he remained on the floor, covered with urine, feces, and maggots. Eventually he was admitted to the hospital with multiple stage IV decubiti and requiring intubation for respiratory acidosis. When we evaluated him for capacity, he was minimally communicative and fearful. We agree with Qualls that issues of diminished capacity are ideally resolved within supportive families, but at times, such as in this case, familial decision making is not the solution. Thus a research question emerges: In what cases and contexts do shared capacity decision making and social management succeed, and in what cases do they fail? Further, how can we maximize the functioning of families and the support for elders in their home environment?
The field of capacity assessment is complex and challenging. There are many types of decisions that humans confront, many "types" of capacity questions that are brought forward to clinical and legal professionals, and many variations on what a "good decision" is for any individual. As noted by Qualls, there are also many contexts for capacity assessment—the family, the health care system, the clinical professionals within the system, laws of different types in different states—that in turn raise many questions. What then is capacity? Although it is not susceptible to easy definition, clearly it is a multidimensional construct with important clinical, legal, ethical, social, and policy aspects.
Amidst the complexity, answers are needed. Today in a clinic near you, an elder will present who has dementia and is increasingly exercising poor judgment. Perhaps her life savings are going to international sweepstakes and she is unwilling to accept help from family and unable to resist the spurious promise of easy wealth, despite her growing inability to provide for her own needs. The good doctor wants both to promote the elder's autonomy and also protect her from harm caused by her failing capacities. Do we respect the elder's autonomy, knowing that dementia is robbing her judgment, or do we find her clinically incapable of managing her financial affairs and seek intervention through the family or the legal system? Clarity is needed in understanding the interrelationships of diagnosis, cognitive and functional abilities, values, culture, and capacity in these cases.
We return then to where we started. Clarity in capacity assessment is founded on strong conceptual foundations, on empirically grounded assessment instruments and clinical practices, on appreciation of the clinical and legal contexts in which the assessments take place, and on ongoing study and critique of these assessments and practices. In our article we sought to identify and describe the conceptual and empirical basis of capacity assessment in the domains of medical decision-making capacity, and financial capacity. We also addressed more dynamic issues such as how clinicians arrive at capacity judgments, and how legal professionals arrive at legal resolutions. In turn, the aforementioned commentaries serve as both review and critique, and they remind us that capacity assessment is an interdisciplinary endeavor that calls for creative, collaborative, and cross-disciplinary approaches.
Footnotes
Decision Editor: Thomas M. Hess, PhD
Received for publication August 31, 2006. Accepted for publication August 31, 2006.
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