Dementia and the Goals of Care

Even though you think and behave perfectly normally, you might already have Alzheimer’s disease. In fact, you might warrant the label of “pre-clinical Alzheimer’s disease” for a full 20 years before graduating to the full-fledged condition. That according to the latest definition of Alzheimer’s put forward by the National Institute on Aging together with Alzheimer’s Association 3 years ago.

Heralded as a radical departure from earlier clinical diagnostic criteria, the new definition is in line with how we think about other chronic conditions such as cancer or heart disease. Normal cells often mutate into cancerous cells and proliferate for a long time before there are enough of them to produce symptoms—and a cancer diagnosis. Plaques may be deposited in the lining of coronary arteries long before they narrow blood vessels enough to impair blood flow to the heart resulting in chest pain. In all these cases, the hope is that we may be able to intervene during the pre-symptomatic phase, altering what is currently the inevitable trajectory of illness.

In the case of Alzheimer’s, detecting various “biomarkers” in the blood or cerebrospinal fluid would signal the need for some kind of biochemical intervention. The problem has been that we don’t as yet have any such intervention. For now, the main purpose of early diagnosis is to identify people who could enroll in research on the prevention of Alzheimer’s—assuming the diagnostic techniques are sufficiently reliable and the benefits of research outweigh the burdens of knowing what the future has in store.

Philosopher Dena Davis makes a different case for the value of early diagnosis last summer in Journal of Medical Ethics. Knowing that a person is destined to develop dementia, she argues, is invaluable so he can kill himself.

The option of “rational suicide,” as Davis calls it, is based on wanting to avoid becoming dependent and on wanting to spare family the burden of caregiving, as well as the potential loss of an inheritance. The diabolical nature of dementia is that if you wait until you are a burden, until you can no longer do any of the things that once gave meaning to your life, then you will most likely have reached a stage where you have also lost the ability to take your own life or even to remember that you ever wanted to end your life if you developed advanced dementia. And those countries (such as Switzerland, Belgium,  and the Netherlands) and those American states (Montana, Oregon, Washington, and Vermont) where Physician Assisted Suicide (PAS) is legal all require that the patient be of sound mind at the time the request is made and that she have a prognosis of not more than 6 months. So PAS is not generally an option for people with dementia.

There is a gentler alternative to pre-emptive suicide, and that is drawing up an advance directive that authorizes the withholding of life-prolonging medical treatment in the event of dementia. But Davis discounts this option, claiming that courts and ethicists increasingly dispute the right of a person, while cognitively intact, to make any claims about the interests of his future demented self.

In fact, opponents of pre-emptive suicide such as Rebecca Dresser, whose response to Davis appears in the same issue of the ethics journal, say something a little different. They do not assert, as Davis contends, that competent Jane Doe should have no say over what happens to incompetent Jane Doe. That would make little sense as much of the point of advance directives is to plan for possible loss of competence. Rather, Dresser argues that “precedent autonomy,” in particular the choices made when competent, should be tempered by considering the present interests of demented Jane Doe. This is the dilemma of the happy dement that Dresser addressed in an earlier article on the subject.

Suppose that today I am an anxious, driven, competitive person. I find the prospect of being unable to write articles or give talks or care for patients intolerable. But suppose that one day, I do lose my ability to write articles and give talks and care for patients. And suppose that lo and behold, I am no longer anxious or competitive. Instead, I am relaxed and cheerful. I smile at everyone indiscriminately. I am no longer inhibited and I clap my hands and tap my feet to all kinds of music. I’m no longer a picky eater and instead I say everything I’m served, no matter how bland or poorly prepared, is delicious. I don’t recognize my children but am glad to see them, just as I’m glad to see the aide who dresses me in the morning. Surely my best interest is in continuing to live as long as I can remain in my current state.

The challenge, as I think Rebecca Dresser understands and Dena Davis does not, is to balance the perspectives of Jane-Doe-ten-years-ago and Jane-Doe-today. How should we do this and who should be the arbiter? The way to proceed, I believe, is for former Jane Doe to identify the goal of care for her future self. Plausible goals are the prolongation of life, maximization of quality of life, or promotion of comfort. Death, parenthetically, is not a goal; it is a means to an end. Only rarely is it the only or the best means to achieving a legitimate goal. Most people, I suspect, would choose comfort as the goal in advanced dementia and maximizing quality of life as the goal in moderate dementia. All the physician needs to do is to translate that goal into practice.

For an acute medical problem such as pneumonia, for example, comfort means using Tylenol to keep fever at bay and oxygen to ameliorate shortness of breath. Maximizing quality of life may mean using oral antibiotics—but not hospitalization in an intensive care unit with a ventilator for breathing.

We will never entirely be able to prevent people from committing suicide upon learning they are at substantial risk, if they live long enough, of developing clinical Alzheimer’s. After all, people can kill themselves when diagnosed with a disease such as metastatic cancer, even before they develop intolerable symptoms, though few do so. They could kill themselves prophylactically at age 65 or 70 to assure they will never get any awful disease, though most people do not choose this route.  Our responsibility, however, as clinicians, ethicists, and lawyers is to try to make sure that every individual can live as good a life as possible, whatever cards she has been dealt. That’s what a good society does.

Dr. Muriel Gillick, who will qualify for Medicare in three years, is a geriatrician and palliative care physician, and a professor in the Department of Population Medicine at Harvard Medical School. She has written four books for a general audience discussing ethical, medical, and other issues arising in old age, most recently “The Denial of Aging: Perpetual Youth, Eternal Life, and Other Dangerous Fantasies” (Cambridge, MA: Harvard University Press, 2006). She blogs at Life in the End Zone, where this post was initially published.

[Readers interested in this post will want to see the May-June issue of the Hastings Center Report article on “Advance Directives, Dementia, and Withholding Food and Water by Mouth.”]


3 Responses to “Dementia and the Goals of Care”

  1. Carol Eblen

    Thank you for the clear truth you so beautifully express in this article. I have always wondered when I visited a locked unit with Alzheimer’s and late-stage Senile patients WHY advanced directives couldn’t or wouldn’t prevent the need for these units.
    Who, in their right mind, would choose to live like that?Your dissertation explains why so many people do live this way and the complexities involved.

    I understand that you are not suggesting that the frail elderly who are not senile should be deprived of ventilation for pneumonia if there is a good medical chance that the elderly and frail patient could live without ventilation when the pneumonia is resolved, and the frail person still wants to live.

    You know that it has been my concern that the frail elderly, the disabled, and the poor may now be hastened unto death for the fiscal expediency of Big Insurance and the Hospitals by means of inappropriate unilateral covert and overt(default) DNR hospital code status. I understand that inappropriate DNR Code status is a direct reaction sometimes to over treatment/errors in the outpatient setting as well as CMS and private insurance reimbursement protocols that will NOT reimburse the hospitals.

    Thank you for your truth in your Blog on DNR and for honestly reporting that DNR Code Status has been problematic for over 40 years.

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