New Advance Directive For Dementia?

Many people have advance directives in which they instruct medical personnel what they want done for them or not done for them in case they cannot give instructions themselves due to incapacity.

A usual advance directive might say that if the person is terminally ill, he or she does not want cardiopulmonary resuscitation, a ventilator or a feeding tube.

But a man profiled in a story in the New York Times went one step more. He declared that if he were to develop Alzheimer’s disease or dementia, he would refuse “ordinary means of nutrition or hydration.”

He wants his health care proxy — his wife — to make sure that nobody tries to keep him alive if he cannot recognize his loved ones or cannot articulate coherent thoughts.

This is a new phenomenon but it is growing, the story says, as more and more people develop dementia.

Sometimes this step, called VSED or voluntarily stopping eating and drinking is used by those older people who want to hasten their decline from terminal conditions. But it is not usually put into an advance directive.

And it is a new thing for dementia patients as the disease kills slowly over years and there typically is no life-sustaining treatment to withhold, no “plug to pull.”

The issue is very controversial and will not be resolved soon. Nursing homes, for example, are not allowed to withdraw nutrition or can face severe penalties. And some states ban the practice.

In the case of another patient profiled in the story, her nursing home refused to honor her wishes and the case went to court. A judge ruled she must continue to be fed because she could swallow. The case has been appealed.

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