The Dementia Dilemma

THE DEMENTIA DILEMMA SHERMAN FRANKEL '¦ In the last decade there has been considerable discussion of end-of-life issues and in particular of "assisted suicide." In Oregon, it is now possible, under very controlled circumstances and with the consent of two physicians , for a mentally competent person with a painful terminal illness to legally receive drugs to accomplish a graceful end. But consider a person who, because of Alzheimer's disease, a series of recurring strokes, or some other affliction, has become progressively demented and is established to be mentally and legally incompetent. Such patients number in the millions in the United States today, a number far larger than those who are mentally competent, suffering from a terminal and painful disease, and wish to die. Can one ensure a dignified end after dementia sets in? The "dementia dilemma" can be highlighted by the following "thought exercise." Suppose, by some miracle, the demented person is restored to his earlier state for a few minutes, such as the state you are presently in, and is made aware of the state to which he has fallen. His assembled family, physician, nurse, and lawyer explain that the medical knowledge does not exist that will allow his mental state to be reversed. They attest that his degeneration will progress. He is then told he will soon relapse to his demented state and is asked this question: Do you want to continue to live in that state or would you want to be helped to a graceful exit from life? Many persons would choose the latter option, and this article is addressed to those who desire to control the circumstances at the end of their lives. How can we arrange to accomplish that option when present attitudes and laws do not allow such a person to accomplish that end and the deThe author would like to thank his colleagues, from a variety of disciplines, for helping him wrestle with this difficult and emotional topic: R. Bajcsy, A. Caplan, M. Cohn, P. Liëbman, R. Schmidt, G. Spaeth, and W. Wales. A longer draft version of this article appears on http://www.physics.upenn.edu/ facultyinfo/frankel.html * Department of Physics and Astronomy, University of Pennsylvania, 209 South 33rd Street, Philadelphia, PA 19104.© 1999 by The University of Chicago. All rights reserved. 0031-5982/99/4202-1093$01.00 1 74 Sherman Franke! ¦ The Dementia Dilemma mented person is incompetent to understand and carry out this act alone? This article explores this dilemma. Its purpose is to stimulate wide discussion , especially in the community of physicians, of this end-of-life issue. It attempts to do so by making a proposal that might frame the discussion. In helping a person to die, physicians and family are placed in a position which they can rarely handle. In our society, physicians are the only ones that have the legal authority to obtain lethal drugs. On the other hand, they are also trained with the ultimate purpose to maintain life. Thus they are placed in a position where medical tradition and training place unbearable burdens on their possible involvement in arranged suicide. Even more traumatic is the state offamily and friends. They too are placed in situations where their own mental and physical health is endangered by decisions they are called on to make on behalf of their loved ones. These factors are at the base of the confusion and grief that accompany attempts to deal with the problem of the progression of dementia in the persons in their care. At times, the decisions they are called on to make cause family conflict and even legal actions. Can one arrange to exit life as gracefully as one tried to live it, and spare our family and caretakers the attending trauma? The purpose of this article is not to discuss the legal and moral aspects of the "dementia dilemma." Rather, it is intended as the beginning of a search for a solution to the dilemma. The plan is to examine the establishment of small societies of like-minded members who will help each other, at the appropriate time, provide assistance for demented members to achieve a graceful death. Such a "Society...