The Dementia Dilemma

Sherman Frankel

July, 1998

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/her (1) 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.

Hence, the dilemma: How can we arrange to accomplish that option when present attitudes and laws do not allow such a person to accomplish that end. Yet the demented person is incompetent to understand and carry out this act alone.

This article explores the 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 of family 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 in 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''. It is to intended as a start of a search for a solution to the dilemma. Our 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 for an Assisted Graceful Exit'' (SAGE), hopefully would develop a wise resolution of the dilemma. It is crucial to appreciate that in this Society, physicians, lawyers, nurses, and family members will provide advice and direction, but they will not participate directly in making the final decision and performing the final act.

It appears from our initial studies that this subject is very difficult for most people to face: Deep seated emotional feelings on death always exist. Even raising this question often causes anguish among one's children. But older persons, and those who have observed their parents sink into the oblivion of dementia, are more receptive to examining their inner thoughts.

To establish rules for the Society, with which we can be morally and legally comfortable, we must anticipate problems and arrive at mutually acceptable solutions. There are legal, financial, operational and organizational concerns that must be addressed. Each Society will need to arrive at its own detailed ``constitution'' that all members agree to accept.

Dementia, as you are aware, is the progressive decline of mental power. It is a syndrome and can be distinguished from normal aging. The main dementias are: Dementia of Alzheimer's type (DAT) and Multi-Infarct Dementia (MID). DAT is believed to be a disorder of a few types of neuron, especially those that produce the neurotransmitter acetylcholine. In MID, blockages or ruptures of small blood vessels cause softening and local destruction of the brain. In both of these major types of dementia, the degeneration is progressive.

Demented persons suffer from a variety of impairments, not only loss in short-term memory that all aging persons experience. There is often loss in long-term memory as well. But more indicative are the myriad of other defects: change in personality, inability of the patient to respond properly to spoken or written commands, inability to use language correctly, inability to read or write, motor deficiencies in the use of legs or fingers, inability to recognize family or friends, inability to remember one's occupation, location, etc.. Perhaps more serious is the loss of logical capability or ability to distinguish between different objects.

The existence of dementia can be established in a variety of ways. This is done by physicians and trained geriatric specialists. Interviews with patients and their family and caretakers, as well as written and oral tests given to the patient, are part of the process. Physical measurements of brain damage, using magnetic resonance imaging (MRI) and positron emission tomography (PET) provide additional confirmation in some cases. These physical measurement methods are improving very rapidly.

A key medical task is to establish a rating scale for dementia. This is crucial because each member will have his own view of how much degeneration of his life he will want to tolerate. Fortunately, recent growth in our understanding of dementia allows development of special scales for the needs of our Society. These new scales would not be oriented towards determining what health care is needed for the demented patient but rather to establish the stage of dementia that the patient has reached. Possibly, five stages of dementia: no, questionable, mild, moderate, and severe (A,B,C,D,E) would be a sufficient grading scale for the purpose. Such tests, combined with the recorded observations of physicians and caretakers, are to be employed to establish a scale of dementia that the patient, when mentally competent, will use to specify the level at which he wishes his life to end. Crucial to this procedure would be the need to educate each Society member on the various symptoms and degenerations characteristic of dementia, the features of the tests, and the reliability of the rating scale. One of the problems in determining the level of dementia is the lack of prior history. Since members of the proposed Society can only join when they are clearly not demented, part of the membership will be the requirement of periodic taking of mental and other examinations, to set the normal pre-dementia performance of the subject. Those data, over years, might be very useful in studying dementia onset.

The first prerequisite is to establish a special will, better called an advance directive, that specifies the conditions under which a competent member wishes to die. The member will also need to understand what the steps and consequences of the advance directive will set in motion. He will need to understand that there will not be any Society action to override his directive and that the Society cannot be asked to perform an override function by any outside source..

It is necessary that the will be in a secure form, free from tampering. It should be in a format which is uniform for the Society, so the members can understand exactly what has been requested by the patient in the will. Here, the modern computer, equipped with cryptographically secure access, will play an important role. Slips of paper in drawers and in lawyers' offices should be replaced by a centralized, well organized, secure, data bank of members' wills. Legal assistance will be needed to establish the format of the advance directive. It is not a ``standard will''. Assistance to the user in preparing the will is expected to come from members of the society or any others that the member may choose.

One prerequisite for any action would be that the patient has been declared ``mentally incompetent'' and that others have been delegated to handle his affairs. A complicated problem relates to the relationship between the Society and the member's immediate family or the executors of the member's ordinary will. For example, suppose the Society has come to the conclusion that the conditions have been met to set in motion the member's directive. Clearly this cannot be carried out without the acquiescence of the persons responsible for the patient. These might be immediate family, persons who are responsible for the patient after he has been declared legally incompetent, or appropriate members of the Society. Not only must this relationship be set out in a directive but it appears to be essential that, when the member is competent, he specifies that his executors should not impede the Society's carrying out the terms of the advance directive in any way. One might require that the family members or executors sign in advance that they will not impede the actions stated in the directive. Members will be reminded periodically to update their advance directives or reaffirm them. When they no longer have the mental competence to do so, their last directive will be the final directive.

It is crucial that the process we have described be carried out slowly and methodically. Delays of months in arriving at conclusions are to be expected. To illustrate the kind of precaution that must be used, consider the question of distinguishing dementia from depression. There are known clinical methods for treating depression which can be invoked. However if repeated attempts do not verify the absence of dementia, the process would be allowed to proceed. Other precautions can be written in with the help of experts on dementia and geriatrics.

The idea of a society formed to aid in carrying out the advance directives of mentally competent persons who wish control of their fate, in the event they become demented, is continually confused with normal assisted suicide. There is always chance of abuse when family, physicians, and caretakers determine by themselves the fate of their charges since they may have a vested interest in the outcome. Thus one hears cries of ``slippery slope'' and ``abuse''. However, the proposed Society cannot be accused of assisting in suicide for financial gain or for desiring relief from the painful and often expensive duties of caring for the patient, since Society members are not involved in these aspects in any way. They are only involved in carrying out the patient's advance directive, established before the dementia developed, hoping for similar treatment if they are unfortunate and develop dementia themselves.

Critics of the suggested Society might argue that legalizing our form of advance directive would result in a decrease in interest in research in finding cures for some forms of dementia. This prediction seems to have little merit. It is those who fear the degrading onset of dementia who are most likely to support research that will keep them functioning to an older age. If they did not cherish normal life they would not go to the effort of finding a solution to the abnormal ``life'' of dementia.

I have not used the word ``euthanasia'' in this article since it has too many unhelpful connotations and several meanings. One should distinguish between the decisions by others to provide an ``easy death'' for a person who requests it, or for persons who have become mentally incompetent and have left no clear instructions. One must also distinguish between the cases when the agent is family and physician rather than a member of a Society whose members have no psychological or financial bonds to the person who has made the advance directive.

One finds in the literature much discussion of the morality of assisted suicide or euthanasia but the morality of the social act we describe needs to be considered in its own framework: The key foundation of this proposal is that each person has a right to die and that right is not bestowed by society or government. Persons who disagree will not join such a Society but should have no right to prevent others from doing so.

In this article I have not included discussions of most of the questions that would be raised in such a society, such as: a) how will the members make the final decision, b) how and by what subset of the Society will the final act will be carried out, c) what methods will be used, d) how will possible legal problems be handled,...

Footnotes:

(1) We shall use he to represent he/she in the material that follows.

A longer draft version of this article appears on

There one will find references to medical books and articles on dementia.

Information on the author's medical interests appears on his main web page:

Comments on this paper can be sent to: frankel@frankel.hep.upenn.edu

Acknowledgement: I should like to thank my colleagues, from a variety of disciplines, for helping me wrestle with this difficult and emotional topic. They are professors in a variety of disciplines, R. Bajcsy, A. Caplan, M. Cohn , P. Liebman, W. Wales, and physicians, R. Schmidt and G. Spaeth.

alzpersp print date February 4, 1999

 
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