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Controlling the End Game of Dementia

In her New York Times article of January 20, “Complexities of Choosing an End Game for Dementia”, Paula Span reviewed the use of advance directives to withhold food and water as a way of avoiding living long into dementia. She wrote that “ethicists, lawyers and older adults themselves have begun a quiet debate about whether people who develop dementia can use VSED [voluntary stopping eating and drinking] to end their lives by including such instructions in an advance directive.” Part of that debate was conducted in the Hastings Center Report last May-June in an essay by us that Span cites.

Span’s article elicited more than 400 comments, with opinions ranging from vigorously supportive of such directives to strongly critical. Our purpose here is to put some of the main criticisms expressed in these comments in perspective by viewing directives to withhold food and water by mouth in their larger context, as one among an array of strategies that people can employ to control how long they live.

Even among those who were sympathetic, some who commented on Span’s article criticized such directives as inadequate. Dying by starvation and dehydration, while often comfortable, may still involve suffering; legal difficulties remove the assurance that such directives will be implemented; and death may still come objectionably late if implementation of the directive has to wait until dementia is so severe that life retains little subjective value. The picture that focusing on such limitations paints is unduly pessimistic.

Let’s first clear aside an unrealistic wish. Some critics advocate active aid-in-dying as a far superior way to die than stopping eating and drinking. In dementia, though, active lethal assistance would have to take the form of euthanizing an incompetent patient, not physician-assisted suicide carried out by someone still competent.The Dutch may have legalized euthanasia for patients who are no longer competent, but politically, in no state of the United States does such legalization have the remotest chance.

Three realistic measures, however, can help expand control over how long we live with dementia. They can do that already, without much if any legal change.

(1) Conventional directives to withhold or withdraw all life-sustaining treatment, to take effect when dementia becomes sufficiently severe, are clearly legal. If sufficiently broad to include common treatments like antibiotics, and when pursued persistently by an attentive proxy, such conventional directives can often reduce the years in dementia. To be sure, their effectiveness is limited, for a person may turn out not to need any lifesaving care. Yet no one who desires to control the length of life with dementia should be without such a directive.

(2) Advance directives to withhold food and water by mouth add an important option not contingent on happening to need life-sustaining treatment. Existing U.S. law does not provide such directives a bright green light, but it provides considerable logical support. Competent patients already have the legal right to die by stopping eating and drinking, as well as the legal right to direct refusal of treatment in advance, including treatments absolutely necessary for continued life. So if becoming incompetent doesn’t cause someone to lose her rights but only means the rights have to be invoked by a proxy, why should becoming incompetent cause someone to lose the right to die by refusing to eat and drink?

To be sure, to minimize legal and institutional barriers to their implementation, such directives will need to be knowledgeable and very clear.They should reflect the writer’s understanding that quality of life with dementia is variable and avoid any stereotype that life with dementia is generally not worth living. A good directive will be as specific as possible about the severity of the dementia that the writer wants to be the trigger for withholding food and water. Even when that stage has been reached, a strong directive will speak to how later proxies and caregivers should respond to behaviors that may leave them in doubt: Should the directive be implemented when the person is indifferent to food but does not actively resist it? Should it be implemented only when considerable assistance is required for successful ingestion, or before that point? What if one turns out to actively resist feeding before the stage of dementia when the directive says life should be discontinued is reached? Etc. Such a directive, while of more than the run-of-the-mill sort, is not that difficult to construct. An example of one person’s actual such directive is contained in ourHastings Center Reportessay.

(3) A third strategy avoids the medical limitations of directives to refuse treatment and the legal limitations and implementation difficulties of directives to withhold food and water: stopping eating and drinking when a person is still decisive (“preemptive VSED”). VSED can guarantee an end to one’s life before severe dementia – very likely, well before it. Therein lies its disadvantage: sacrificing what many people regard as the still valuable life between the last decisive time when they could employ VSED and the time when they believe life with progressive dementia will have lost so much value it should end. To some that sacrifice will seem a small price to pay for the assurance that they will not live long into dementia – witness, for example, Alan Alberts, featured in the TEDx talk by his wife, Phyllis Shacter. To others preemptive VSED simply requires too much; for them the viable options will be the two sorts of directive that constitute the first two strategies.

None of the three strategies is ideal, but together they provide people with a considerable degree of control over how long they will live into progressive dementia. To many, the prospect of life capped off by years with severe dementia is a horrifying contradiction of their lives – a real and terrible prospect that must be dealt with by the means that are available, even if none of those means is ideal.

Paul T. Menzel, Ph.D., is a professor of philosophy emeritus at Pacific Lutheran University. M. Colette Chandler-Cramer, P.A.C., is a retired physician assistant and hospice volunteer in Coupeville, Wa.

Posted by Susan Gilbert at 02/03/2015 09:58:56 AM |

Published on: February 3, 2015
Published in: Chronic Conditions and End of Life Care, End of Life

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