Ethical Foundations of Palliative Care for Alzheimer Disease

EIGHTEEN: Social Marginalization of Persons with Disability: Justice Considerations for Alzheimer Disease

mc h a  t e r e i g h t e e n Social Marginalization of Persons with Disability Justice Considerations for Alzheimer Disease Ruth B. Purtilo, Ph.D. The trends that point to an increasing number of persons with Alzheimer disease (AD) worldwide and the perceptions of escalating financial and other burdens occasioned by this increase have prompted growing discussion by governments, private insurers, and national and international organizations about how best to allocate resources to address the new challenges. From the ethicist’s point of view, answers to these challenges best are derived from the biddings of justice and, more fundamentally, should be based on a clear understanding of the situation of all those affected by the allocation decisions. Thus, this chapter lays out some basic areas of consideration that should be taken into account when allocation policies are forged. It will not surprise readers that persons with AD and their families do not fall easily into one health care or social services policy niche.AD is one of those confoundingly complex, long-lasting, progressively debilitating medical-social conditions that renders it at high risk of falling through the policy slats. In both the United States and Europe, interventions are piecemealed together through various medical and social service sources, changing sometimes abruptly as new manifestations of the disease appear. The overall spectrum of care almost always is, at best, fragmented. Of the several common health care allocation categories, the members of our international dialogue concluded that AD is least often viewed as an“acute care” problem, though acute symptoms do occur. In the United States, in Western Europe , and in Central and Eastern Europe it is viewed variously as a chronic disease , a long-term care challenge, or a terminal illness. But most frequently it is treated, over time, as an impairment that has become a disability. When do impairments reach the point of disability? According to the medical model, the disability ensues when the impairments are deemed to merit medical intervention. Presumably, the proffering of health care (and other social service) benefits are judged according to the level of impairment. In short, this approach focuses on the “broken person” approach (Silvers, 1998). Susan Wendell’s (1996) term the unhealthy disabled aptly fits the societal perception of AD, though such a category does not appear in policy-making arenas. Thus, a just basis for allocation policy cannot be determined without an exploration and understanding of the effects of this social perception of persons with AD. Any person judged to have a disability—more importantly, a mental disability —is perceived to present a special challenge involving special burdens on society . Mental disability is a more stigmatizing attribute than physical disability (Nussbaum, 2001). In fact, the label of mental disability is an occasion for social disregard and disrespect toward members of society who otherwise might continue to have a voice in policy matters (Daniels, 1988). This lack of regard (i.e., having an identity deemed worthy of others’ attention) and respect (i.e., having an identity deemed worthy of others’caring and having one’s contributions considered worthwhile) goes beyond the psychological damage imposed on persons with impairments by virtue of important personal and social identity props being withheld or withdrawn. There are also damaging social effects on such persons because society does not deem them deserving of resources that are being allocated. What can be done to help assure that persons with AD and their caregivers do not become unduly marginalized? An apt starting point for assessment is John Rawls’s (1971) conception of justice since it takes seriously the role of regard and respect and how they are key in a social contract approach to allocations that treat everyone fairly. Social Marginalization of Persons with Disability 21 m Justice Allocations through Rawls’s Social Contract Approach Rawls’s social contract approach has become an extremely influential foundation for disability and health policy within the United States and elsewhere. Some have found his approach useful on the basis of his “circumstances of justice ,” which include (1) a situation of moderate scarcity; (2) the presence of a cherished but scarce resource, and especially (3) the requirement that any arrangement for the distribution of resources among legitimate claimants must meet the requirement of benefiting the least well off. His approach does not preclude that dramatic disparities in resource allocation toward...