Deciding on an End of Life Plan
When I believed I had Alzheimer’s, I didn’t seriously entertain the possibility of killing myself for a number of practical reasons. The most important was that people with dementia are still capable of meaningful relationships well into the course of their disease, and many readers insist that the often-difficult season of caring for a person who may not even recognize family offers many joyous times, too. The only reason I could imagine for checking out early was to prevent the burden of caregiving on someone I love. No matter how deep our relationship, I didn’t want to burden my wife Marja with caring for me when I became completely incapable of a relationship or unable to tend to my own needs.
I thought often about the conflict between my unwillingness to foist upon Marja my care in the last stages of my illness and my choice not to commit suicide. At one point, however, a woman wrote me that her husband (who had Alzheimer’s) decided upon something “in between” suicide and the burden of care in the last stage of the disease. They agreed that when he reached the point where he could no longer feed himself, no one else would feed him, either. When the time came and she withheld food and water, her husband died within two weeks.
At Joseph’s House, we’ve had analogous experiences of people unable to eat or drink as they neared the end of their lives. As we do for all other residents, we accompanied them around-the-clock, and death from lack of food or water seemed to us no more painful or difficult than the deaths of the many others we accompany.
I’ve asked myself whether deciding against food or water when I am terminally ill is a form of suicide. I don’t think it is. It’s rather more like deciding against what the medical world calls “extraordinary measures,” for instance, choosing not to put a terminally ill patient on a respirator, an acceptable and common medical practice. I can see little moral or emotional difference between, on the one hand, not feeding a person and, on the other, choosing not to put in a feeding tube or treat an infection in the last stages of disease.
Arranging not to be fed seemed like a good middle ground. I talked about it extensively with Marja, my children and some others close to me, and we agreed upon that course. We realized that if I were in a nursing home, however, such a decision would probably not be allowed, so my family would have to take me out to die at home… which is a better choice, anyway. I made my decision formal by filling out the appropriate legal documents. Legally, then, this would be my decision alone, and no one else would have to risk guilt or the disapproval of others by making such a “heartless” decision for a dying person. I’m keeping that living will intact in case my impairment begins progressing again or I’m in the same situation from another cause of death.
I would offer several cautions from my experience as a physician, though. First, talk the decision through with everyone who is close to you or might be able to cause trouble when the decision needs to be made. At Joseph’s House we’ve had relatives come out of the woodwork at the last minute to insist upon a different course of action than that decided by the patient and close family, even threatening legal action when we, for instance, didn’t hospitalize a patient for whom nothing medically could be done. Second, get it written down. Everyone should have a written living will (or advanced health care directive) anyway, but especially in this situation. This does not need to be prepared by a lawyer or any third party (see Five Wishes). Third, find a hospice provider or physician in your area who will agree to provide support. Finally, review the decision with family regularly, perhaps once a year, until you are no longer capable of doing so.
There was no debate in our family; it seemed right to everyone. I’m sure Marja would never have protested the burden of caring for me, but it was important for me to protect her from those meaningless months or years when the demands of care were enormous and I was no longer aware of much of anything.