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Research Magazine > ARCHIVE > Summer 01 > Article

Gaining Legal Ground
by Paul Karr

A septuagenarian diagnosed with Alzheimer’s disease still wants to drive, but has problems remembering and drives erratically. She wants to smoke, but her family fears for her safety and that of others. Finally placed in the Alzheimer’s unit of an assisted-living facility, she feels bitter that she has worked an entire lifetime, but now is not allowed to make basic decisions about her daily life.

The difficult decisions that face the elderly — and their families, who often are charged with making those choices — become all the more difficult when patients’ physical and mental faculties begin to diminish.

With that in mind, UGA Professor of Law Ned Spurgeon brought together some of the most relevant voices in the debate recently for a conference at UGA called “Legal and Ethical Issues in the Progression of Dementia.”

“This was the first conference to focus on the legal and ethical issues of dementia, particularly Alzheimer’s disease,” said Spurgeon, an expert on so-called “elder law.” The three-day event took an unusually direct aim at the thorny issues involved during the onset of Alzheimer’s disease, physical debilitation, dementia and other health problems associated with aging.

“There have been medical conferences on the subject of dementia and legal conferences about guardianship, for example, but this was the first to take a broad-range look at these issues,” he said. “To have the leading organizations all involved was especially important.”

Indeed, about 75 experts — not only university researchers, but also representatives of the Alzheimer’s Foundation, the American Bar Association’s Commission on Legal Problems of the Elderly and the National Academy of Elderlaw Attorneys — convened at the UGA Center for Continuing Education.

Programs touched on such topics as treatment options for the demented; legal planning; family members as caregivers; elderly activities — such as driving, cooking and smoking — which might affect personal and public safety; end-of-life issues — the ethics of removing life support or ceasing life-sustaining treatment, for example; and issues surrounding genetic screening and the potential for discrimination by long-term insurers.

The topics were framed with a real-life case study that followed the progressive aging and treatment of one presenter’s mother — from her gradual inability to drive, through worsening Alzheimer’s, institutionalization, medication, surgery and eventually her death. The presenter had served as her mother’s primary caregiver through much of that struggle, giving her an unusually up-close view of the dilemmas involved.

“Her story was dramatic and helpful,” Spurgeon said. “While she was speaking as a child and a caregiver, because she is a lawyer she was also able to provide us with important insights into the legal and ethical issues she confronted.”

Briefed by that story and a set of advance research papers, attendees divided into groups to examine specific issues. The autonomy and safety group, for example, resolved that even a full-blown Alzheimer’s diagnosis shouldn’t result in wholesale restrictions on an elderly patient’s ability to drive a vehicle — except in what it called those “very limited” circumstances when the patient was so functionally limited that doing so might cause harm to oneself or others.

Spurgeon joined the genetic discrimination group, which examined whether an identified predisposition to Alzheimer’s disease should affect the price of insurance premiums.

“Because the predictability of genetic testing for Alzheimer’s is low,” Spurgeon said, “we all agreed that — as a matter of public policy — you do not want to use genetic predisposition for this basis.”

That was a consensus opinion, but another group examining treatment options polarized sharply during a discussion about the various roles of doctors, relatives, elderly patients and nursing home staff in late-life medical decisions. At length, the group came to agreement on several broad points, including resisting the “influence of the pharmaceutical industry” during the making of these difficult decisions.

A final session then was held to discuss each group’s findings, and to modify and approve them before the entire body. Those recommendations, along with the conference working papers, were published in the April 2001 issue of Georgia Law Review.

“These were not just lawyers talking to each other, and that provided the perspective and breadth of view necessary to come up with recommendations that are fairly far-reaching,” Spurgeon said. “I’m confident this will serve as the basis for important policy development, law reform and education in the future.”

For more information, e-mail spurgeon@uga.edu.


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