A New Approach to the Dementia Dilemma

Sherman Frankel

Imagine 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 medically and legally incompetent. Such patients number in the millions in the United States today, a number far larger than those who are mentally competent but are suffering from a terminal and painful disease.

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 and 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.

Note that his situation is quite distinct from the mentally competent, terminally ill, patient who has the ability to commit suicide, unaided, or who may ask for assistance because he is physically infirm or because he cannot obtain necessary drugs. The subject of this article is therefore unrelated to the discussions of ``assisted suicide'' that now fill television, radio and the press, and will soon be taken up by the U. S. Supreme Court. Difficult as it may be, the reader should put the debates over the legality and ethics of that activity out of mind in assessing what follows.

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. (2)

How then can one arrange to exit life as gracefully as one tried to live it, and in a way to 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''. There is much excellent literature on this subject. (3)

It is to find a new solution to the dilemma.

Our plan is to examine the establishment of a small Society of like-minded members who will help each other, at the appropriate time, provide assistance for demented members to achieve a graceful death. 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 is the outline of such a Society that this article addresses.

It appears from our initial studies that this subject is very difficult for most people to address: Deep seated emotional feelings on death always exist. Often, except for the ``aged'', this is a subject people have difficulty facing. 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 solutions. There are legal, financial, moral, and operational organizational concerns that must be addressed. A small group of us has been working at this problem over a period of several years and this article represents some of the solutions to problems we have tried to address. Our work is in its infancy and has benefited from discussions with physicians, lawyers, and friends. We believe that it is time for this issue to enter significantly into the public domain and hope that this article will be the stimulant for such discussion.

We start with a small review: Dementia is the progressive decline of mental power. It is a syndrome and can be distinguished from normal aging. (4) A widely used definition of dementia appears in the ``Diagnostic and Statistical Manual of Mental Disorders'' (DSMIIIR) 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 neurone, especially those that produce the neurotransmitter acetocholine. 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. For our purposes, there is no need to distinguish between the forms of dementia, only to establish that dementia is present.

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. A demented person is not the person one knew prior to the onset of dementia. More important for our discussion, he is not the person he was. One has only once to visit one's demented parent in a nursing home to become aware of the quantitative changes that have slowly taken place. A mentally competent person can arrange to handle even the annoying features of incontinence. But the demented person must rely on family or friends, often producing frictions and anguish.

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 methods are improving very rapidly.

A major task before us is to establish a rating scale for dementia. This would roughly assess how far the dementia had progressed. To this end we can build on the results of tests that are long established for obtaining semi-quantitative ratings. Among them are an intellectual rating scale, (the Hodkinson Memory Information Scale) (6) and a behavior rating scale, the Modified Crichton Geriatric Behavior Rating Scale. (7) There are other scales based on clinical mental status examinations and on psychological tests, some of them quite detailed. (8) There are many shorter tests such as the Mini-Mental State Examination. (9) In the case of DAT there is the NINCDS-ADRDA scale. (10)

The key fact is that many tested scales exist and the 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 (11) would be a sufficient grading scale for the purpose. Clearly the Society needs a set of tests and standards which medical experts can help develop, which its members clearly understand, and which will be the basis of action prescribed in each member's will. These tests are often revised and are being improved. (Researchers believe that a satisfactory set of tests can be implemented for setting a dementia scale suited specially to our use.)

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 for his life to end. All these tests and a set of test ratings would be a prerequisite for setting the conditions for Society-arranged dying.

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 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 a will that specifies the conditions under which a competent member decrees that the wish to die, and the circumstances that conform to the wish to die, have been fulfilled. Clearly the member will have to have education from the Society on the whole subject of mental deterioration covered in the previous section so he can set his own conditions. The member will also need to understand what the steps and consequences of the advanced 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.

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 will format. It is not a ``standard will''. Assistance to the user might be in the form of a document or a ``help file'', which educates the user and allows the user to specify his desires in a way that all other members can understand. It not only allows the user to choose from alternate conditions but allows the user to specify the form, location, and attendance at the graceful exit. With the help of the will format, the user makes his will. This would allow the user to clearly give his specifications in language that the members would have no difficulty in comprehending. It would allow the user to assign weights to various behaviors or to the tests themselves, to arrive at a tailored rating scale. It might be useful to store, along with this Society will, elements of the user's insurance or estate arrangements that might be impacted by the Society-arranged death.

It appears that 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. This is a standard legal procedure and the documents might be enhanced to take into account the special role of the Society. This seems to be a necessary condition, but this kind of mental incompetence to handle affairs is not identical with the decision that the incompetence should lead to carrying out the advanced directive. That decision is based on the state of dementia that the patient has reached.

The directive might be prepared in conjunction with the usual will which describes the estate decisions made by the member. The most serious 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 the 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 will in any way. One would require that the family members or executors sign in advance that they will not impede the actions stated in the will. Members will be reminded periodically to update their wills or reaffirm them. When they no longer have the mental competence to do so, their last directive will be the final directive.

Such procedures and all other Society rules will be part of a Society constitution that will be democratically established.

We designate servers as the persons who are selected to make the study of the patient's condition and compare the patient's wishes as they appear in his will. They will be chosen by lot, but not from members of the family. The servers will examine the evidence and make the decision. To ensure that they have done a professional job, these servers will have to report their findings to the Society so that they can be questioned to make sure that they have followed the Society's procedures. If their process is deemed to be in order, their decision, whatever it may be, must be accepted by the Society.

In order to proceed in a careful manner, certain apparatus will have to be available. One piece of apparatus is a unit that contains the chemicals and hypodermics, etc., necessary to produce death. Another is the cryptographically secure computer that is interrogated to determine the patient's wish, that will store the medical test records, and which holds the cryptographic codes that are assigned to the members.

When the decision is made by the Society to carry out the person's end, each Society member punches in his code number. The computer then chooses a new set of n persons, at random, telling them that they have been chosen to be effectors and providing them with the access code that unlocks the safe that contains the needed materials and the codes that allow access to the will itself. The effectors comprise the team that carries out the terms of the will. Only chosen effectors will know who they are and no other member will know who the effectors are. Thus members can testify truly in court that they do not know the effectors. The effectors are also now informed of the details of the patient's last wishes: where the suicide should take place, who is to be informed after the fact, and other details that are specified in the will.

There are precautions that must be taken. 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.

We now turn to the question of legal liability. This is a problem that the Society needs to handle with the advice of lawyers, preferably like-minded individuals who might want to be members of the Society. Most existing forms of assisted suicide are presently illegal. (12) The members of the first Society will have to understand that they are a test case and that there is risk of prosecution. It is very likely that the first test case will not only require engaging law support but may be costly. Yet it is also possible that pro-bono lawyers will be interested in the case. Since this cannot be assured, a better possibility might be to have, within the Society, a like-minded lawyer or lawyers who might be able to command help from their law firms. In any case, some agreement by a member to abide by a levy for such costs will need to be considered. Since the Society will rarely have to act, an annual dues could be used to accumulate a legal defense fund over time.

In spite of the burden of legal costs one can learn from the results of court cases in recent times. Juries do not appear to convict persons for presently illegal assisted suicides even where there may be possibilities for abuse. One strength of our proposal is the fact that ``like-minded'' members would have no financial involvement to invite abuse and no emotional impulses to abuse as can occur in family interactions.

The first Society will have to have funding to establish the computer based will depository and provide for secure storage of the needed materials. It will need to do studies of the performance of its members in creating the advanced directive. It is not unthinkable that a devoted group would get funding for such studies. Eventually their results would be distributed and made available to a larger group.

Not everyone is suited to becoming a Society member, since there is considerable sophistication required for making the will, making the final decision, and carrying out the terms of the will. Thus, rules must be established for admitting members. We envisage the societies as being small, perhaps with no more than 15-20 members, so that discussion and democratic procedures would be used to determine its rules. Before admission, each prospective member would be required to study and understand the way the decisions are to be made, even before a will is completed.

Unfortunately the single pill that would produce a painless, swift, and certain death, suitable for graceful dying, does not exist. Seconal and and Nembutal are drugs most often prescribed. However, when taken orally in sufficient quantities, they often cannot be retained. (13) Somehow, overcoming failure of the drugs by patient suffocation with a plastic bag, is an approach that cannot be described as dying with grace.

There are more civilized methods: In the Netherlands, according to law, two injections are given by attending physicians. One is a sedative to eliminate pain and consciousness. The other is a heart and a muscle blocker to produce death. For example, a solution of of potassium chloride and succinylcholine has been used for this purpose. Injection is presently the practice used in many States to carry out capital punishment. Effectors could be trained to give the intravenous injections themselves, perhaps by a physician, nurse, or technician member of the Society. (14)

This article is only an outline of a proposal and is not the appropriate vehicle for describing many details that each Society will have to face. Here are some of the questions which will have to be faced and which are treated in a preprint entitled ``Organization and Society Rules'', S. Frankel, (isaac/papp preprint dem896 ):

1) How will access to the will be obtained and who will have access to write and/or read?

2) How can persons outside the Society be inhibited or prevented from interfering with the will of the participant?

3) Under what rules can members of the family be members of the Society?

4) How will the act be carried out to ensure minimum legal complications and how and by whom will the authorities be notified?

5) What cryptographic methods will be employed to ensure security of the wills and the Society minutes?

In the course of this study we have found that the idea of a society to aid in carrying out the advanced 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, our 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 advanced directive, established before the dementia developed.

Critics of our suggested Society might argue that legalizing our form of advanced 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 discussed in this article the many excellent papers (15) on the ethics, legality, or other aspects of physicians and family deciding the fate of a mentally competent or incompetent person and carrying out the final act. Important as those papers may be they do not address the new proposal that this article describes, which places like-minded members of a new Society in the key position of carrying out a demented person's will, established in the earlier period of mental competence.

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 worldly bonds to the person who has made the advanced directive.

One finds in the literature (16) 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 our 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.

The purpose of this article has been to start discussion of a problem that has received almost zero attention in our country. The problem of handling a patient's prior wishes, once dementia sets in, is not only a personal problem that is very rarely faced, but is one that has widespread effects on the economic well-being of family and on the cost of health care programs. If, for whatever moral or religious or civilized reasons, one desires to die with the grace with which one tried to live, and to spare family and friends from a long lasting tragedy of slow death, often under deplorable conditions, the pros and cons of the Society we propose need discussion. As we can see from the simpler problem of physician assisted suicide in the case of mentally competent patients with terminal illness, the slow progression of that debate and its legal complications do not augur for a speedy solution to ``the dementia dilemma''. But we should keep in mind the perseverence, and methods, of the Christians in the catacombs.