Voluntary Stopping Eating and Drinking (VSED) in Alzheimer's Disease

This morning I was reminded by a fellow dementia caregiver of the journey that some people with Alzheimer’s choose—VSED. In fact it’s come up in my world three times this past week.

Regardless where you are on the spectrum of opinions on this choice, it is something that people choose more frequently these days. Artificial feeding has been a controversial topic in healthcare since the eighties, but over time declining artificial feeding and hydration has become an established component of advance care planning. The fact that nutrition scientists proved at the end of the twentieth century that methods like parenteral nutrition did not replace regular food in cancer patients, and in many cases produced more harm than good.

But of course, not eating and drinking by mouth seems and is a bit more intentional. And that’s the whole point. The patient themselves, knowing the natural course of the disease, perhaps having seen it in their own family, is saying I don’t want to keep going after my existence is full of suffering.

Over on Reddit there are always a group of people that feel it is starving someone which is tantamount to murder and only God can determine when someone dies. Just as loud on the other side folks argue the ethical principle of autonomy is a foundational component of being a sentient being, therefore a human right.

The bottom line? How one traverses end of life is a personal decision that only the patient can make. It may make some family members uncomfortable. And that’s okay. They can choose to not be on the team of people that support their loved one through voluntary stopping eating and drinking, but they don’t get to veto it.

One of many thorny complexities involving late stage Alzheimer’s Disease remains the uncertainty of when one will lose capacity to make decisions for themselves. In our case, my husband was in the moderate stage of Alzheimer’s, then after two major hospitalizations within two months, had declined rapidly to Stage 6e—the cusp of the severe stage.

It can happen that fast. These end of life decisions have to be explored early in the course of the diagnosis.

I now personally know of three Alzheimer’s patients who chose the VSED path. All made the decision in the moderate stage of the disease, executing VSED advance directives, recording videos of why they chose this route, such as being able to avoid their own suffering and prevent suffering for their loved ones, reassuring family that they were not depressed and had given it lot of thought. They set-up hospice care and designated who they wanted to be there for their last days.

All three of the folks I know of died within 2 weeks. The End of Life Washington organization has a great deal of information about VSED, so I’ll drop the link to that page here.

I have now seen my mother and my husband fall to late stages dementia. VSED is an option I may very well consider if my time comes.

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