11
THE SPECIAL CASE OF IRREVERSIBLE DEMENTIA AND END-OF-LIFE MANAGEMENT

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Most of us have a very real fear of being incapacitated mentally while our bodies continue to function reasonably well— the situation that can so often go on for years in Alzheimer’s disease or other forms of dementia. One of my colleagues wrote me of his wife’s mother and the trap she fell into because of this disease.

My first experience with what was called “Alzheimer’s” was the worst. My first wife’s mother [Susan] . . . was institutionalized with it at a fairly early age, in her 60s I think. . . . [Susan had] feared it all her life since her own mother had had dementia. [Susan] was an absolutely brilliant and very refined woman. She was very concerned with appearances. Every time she had difficulty remembering a word or forgot a task, she worried it was the onset of what her mother had had.

Tragically, she ended up gradually losing her memory and her grip on what was going on around her. Ultimately, [her husband] . . . had her institutionalized. My wife and I visited [Susan] . . . at the institution over the several years she was there, and it was a horror for my wife and me.

In the end, she was like a restless, pained animal—sitting in a chair pulling against her restraints. I kept hoping that she had no lucid moments, and I always thought how terrible she would have felt had she ever been able to foresee how she would actually spend her last years!

Few want to live in a state of being unable to recognize friends and family, know who one is or has been, know where one is, care for oneself personally, or interact with one’s surroundings in any way intellectually. Adding to this fear is the fact that present guidelines for decision making at the end of life are insufficient in patients with Alzheimer’s disease and other irreversible de-mentias. The dilemma is that there are no secure and dependable means for ensuring that in the future one’s wishes for care, developed while competent, will be followed when dementia supervenes. If someone acts to end life while still mentally capable of doing so, this can result in a death that is premature. There is no obvious or easy answer.

Attempts have been made to propose workable rules for making decisions in this situation, but usually efforts are frustrated. A group of my colleagues and I met four times in Boston during 2005 in an effort to work out some reasonable guidelines, and, although we were able to agree on a number of points, there were many difficulties.1

What many of us would like is to ensure that, if in the future we become demented, we do not continue to live. It is very hard to ensure this wish can be met. We need to be able to put into place a precommitment by the present self that will override the possibility that the future incompetent self might countermand the directions set forth by the previously competent self.2 Such prospective guidelines for shortening the period of dementia may be rejected by the future incompetent person. If the patient waits until dementia has occurred, he or she is, by definition, at that time unable to prescribe desired rules for care. Additionally, if other persons exercise substituted decision making for the patient and such decisions hasten dying, there is the question: From whom did they get this authority?

There are, however, some measures that can make precommit-ments of a competent person more likely to be carried out when and if incompetence develops. Some of this, but not all, depends on needed changes of the law. In discussing the problem, I have used Alzheimer’s disease as a model for all types of disabling dementia at the end of life since it is the most common cause. These suggestions can apply to all the various forms of irreversible dementia.3


THE DILEMMA OF ALZHEIMER’S DISEASE

Alzheimer’s disease is a progressive degeneration and loss of neurons in the brain, initially producing memory loss followed by steadily failing cognitive ability and dementia that severely affects behavior. Occurring equally in males and females over 65 (but sometimes earlier), the disease progresses to death in a course that can be prolonged over years. Microscopic tangles of neural fibers and plaques of an abnormal protein (amyloid) develop in most of the cortex and some of the subcortex of the brain, and certain other abnormal proteins can be detected in the diseased neurons. Diagnosis can be made with certainty only by autopsy, but because of the way the disease develops, certain blood tests and MRI imaging may also allow clinical diagnosis before death. Symptoms can range over a wide spectrum, and there is no typical case. Often, there is no reliable way to differentiate Alzheimer’s disease from the various other conditions that may also produce dementia; vascular disease is the next most common cause of dementia. The incidence of Alzheimer’s in both its symptomatic and asymptomatic forms is increasing (the latter diagnosed only by autopsy), and deaths from the disease are exceeded only by heart disease, cancer, and stroke. The Alzheimer Association, probably the biggest and most extensive advocacy group for families struggling to provide this care, is a good source of information about the disease.4

There is no known prevention for Alzheimer’s disease—nor is there an effective treatment—and, discouragingly, the prospects for good medical answers in the near future are not great. Some experimental medications are being used, but their effectiveness to date has been very limited.

The costs of dementia are immense.5 Dementia is associated with a tripling of Medicare expenditures, and financial costs for nursing home care in the United States for those with dementia are very high. The social cost is also vast—loss of dignity and suffering by the patient and family are incalculable. This continuation of physical life in the absence of sentient life imposes an incredible burden on our older population and their families. Since there is no good way to reverse the progress of Alzheimer’s disease at present, many people have tried to think of ethical and legal means by which the suffering of Alzheimer’s disease might be shortened.


WITHDRAWAL OF TREATMENTS THAT PROLONG LIFE: NOT A PROBLEM

As we have discussed earlier in this book, our society has slowly come to the universally held position that it is ethically and legally permissible to withhold or withdraw certain forms of treatment or support when a person who is competent refuses treatment or when an incompetent person has previously (when competent) given this authority to refuse to a proxy or agent by an advance directive.

Therefore, when treatment is withheld or withdrawn in the case of a patient with dementia who has previously executed an advance directive along these lines, there is unlikely to be justifiable protest, either legally or morally, and that person’s life of mental incapacity can often be shortened by simply withholding these unwanted measures. If an advance directive has not been executed and the time for decision making about such treatments occurs after the patient has lost mental capacity, there still is not likely to be any legal problem, as long as there is agreement among the persons responsible for the person’s care (relatives, a court-appointed guardian in the absence of relatives, and/or the responsible physician) that such a decision is in the best interests of the patient.


WITHHOLDING FOOD AND FLUIDS: MORE DIFFICULT

After rejecting unwanted treatments or procedures, the next move that comes to mind when a patient’s advocate or agent is trying to shorten a period of suffering in a demented patient is to withhold food and fluid, thereby hastening the time of death. We have seen previously that in a competent person, this clearly is a right (terminal dehydration with sedation) since one cannot be forced to eat or drink.

This legal and ethical right, however, becomes more problematic when fluids are withheld from a demented person, even if that person has previously indicated to a proxy by written advance directive that he or she would not want to continue living under the circumstances of irreversible dementia and would prefer dying by withholding fluids. If the demented patient is thirsty and asks for or shows that he or she wants water, it would be nigh impossible for the agent or any caregiver to explain to the patient why he or she could not have water; sedation would have to be used to counter the patient’s possible sense of distress. Directions to withhold fluids, given by the patient before becoming demented, could be challenged, even if they were strong and tightly written. Additional difficulty in withholding fluids from a demented person occurs if the patient appears to be contented and is not suffering in any way other than lacking cognitive function.

The problem is compounded further in the demented patient who has not executed such an advance directive or appointed a proxy. In such instance, there is no clear legal authority to carry out what the patient would have wanted. The caregiver is in a very gray area since the demented patient is likely to continue to want fluids and would have to be sedated in order to have such a course undertaken.


ASSISTED SUICIDE AND EUTHANASIA IN DEMENTIA: NOT POSSIBLE AT PRESENT

For the demented, assisted suicide and/or euthanasia are even more difficult procedures and are precluded by our current guidelines and laws. Even in Oregon, physician-assisted suicide is legally permissible only for competent patients who are terminally ill (and many demented patients are not terminally ill). The dilemma of incompetent patients is not addressed. Euthanasia is at present totally out of the picture legally.


WHAT SHOULD BE POSSIBLE, IDEALLY?

The demented patient by definition cannot commit suicide rationally, but while people are competent, they should be allowed to set forth in a legally binding document the circumstances under which they would wish, first, to have all fluids withheld (with the accompanying necessary sedation) so that death would intervene in a matter of days, or, second, to have a physician carry out active euthanasia with a lethal injection. The prior wishes of a competent self should be allowed to trump any possible later wishes of the confused, incompetent self. A change in the law would be necessary for this, but it is not far-fetched to picture legislatures allowing this at some time in the near future. The patient would have the right through such new legislation to define the circumstances of dementia under which he or she would not want to continue living. Withholding fluids and sedation is being done to some extent now in Europe, along with the even more aggressive remedy of active euthanasia for dementia under very carefully defined circumstances. We should do the same. With proper regulation there should be neither abuse nor a slippery slope.

A further reason for enacting legislation allowing the ending of a demented person’s life in accordance with a predementia binding agreement is that it would avoid the pressure people who are worried about possible dementia might feel to end life prematurely. They could enjoy what rational life was left, if they knew a definite course of action was guaranteed prior to the onset of dementia. Otherwise, there is, as Ed Lowenstein, a member of our dementia discussion group, said, “the hazard that many will shorten their lives when not demented or while only very mildly demented because they are so determined to avoid life with serious dementia. They may be led to do this due to the recognition that dementia will rob them of the capability of hastening their own deaths.”6


WHAT CAN BE DONE NOW, PRACTICALLY SPEAKING?

In the absence of new legislation, what can we do at the present time to avoid being kept alive indefinitely in a state of severe dementia? Taken together, the following suggestions, none of which is really new and none of which is guaranteed to lead to what each of us might ideally wish, probably will at least make an easier and more appropriate dying.


You will notice that these measures aimed at shortening the dying process in a demented patient have all been discussed earlier in the book in the context of the care any dying patient should have. The differences here are that in the demented patient, (1) these measures are often not undertaken because the patient is usually not dying or terminal and (2) the family and caregivers of a demented patient who is not terminal need to have heightened resolve not to prolong meaningless life since it is unusual to undertake these approaches in persons other than the terminally ill. Very firm determination is required.