As when I wrote about suicide in April of 2013, my last post about not feeding a person with end-stage dementia (or any other terminal illness) drew many comments and emails. If you're like me, you don't read all the comments of all the blogs you visit, but these comments seem important enough to deserve their own post.
I suppose I shouldn't be surprised, but there is an entire set of literature about the topic of not feeding at the end of life. It even has its own acronym, VSED (voluntarily stopping eating and drinking). A friend emailed me this link to a webpage that offers a TED-talk video of a spouse describing her husband's decision to refuse sustenance; the same page links to a number of other stories and professional articles about the choice of VSED, especially about its legality and its difference from assisted suicide.
As the acronym indicates, however, most of that literature seems to be about terminally ill patients who are still quite capable of feeding themselves but voluntarily stop eating. VSED should be differentiated, it seems to me, from not feeding a person who has lost the capacity to feed himself. The latter is a choice not to prolong a life that is clearly near its end, while VSED is a decision to shorten one's life, a decision that anyone could make, regardless of medical condition.
What is most helpful about the literature on VSED is that even this (which ethically could be considered a step closer to suicide) is legal almost everywhere. Two legal experts on the topic write in the abstract of their law review article:
"Specifically, we argue that both contemporaneous [made at the time] and (most) non-contemporaneous decisions for VSED are legally permissible. Individuals may refuse nutrition and hydration just as they may refuse other intrusions on their personal autonomy. This right is grounded in the common law of battery, statutes, state constitutions, and even the U.S. Constitution. Moreover, VSED does not, as many believe, constitute abuse, neglect, or assisted suicide. Even ex ante [before the event] decisions for VSED (exercised through an advance directive or a surrogate decision maker) are legal in most United States jurisdictions."
Another commenter countered my implication that nursing homes won't cooperate with such a decision. He wrote that most nursing homes and hospices will agree not to feed residents who have previously prepared appropriately and left advance directives, documenting their desire not to be fed when they can no longer feed themselves. So, anyone in either a nursing home or assisted living who is interested in not being fed should inquire about the policies of the institutions being considered.
Several other comments and emails offered stories of the writers' experience with not feeding. Especially important is the point made by Lee Ann Gerleman (a nurse with lots of experience with death) that dying from dehydration is not an especially difficult way to die, saying:
"People have a real problem sometimes with withholding food or water from their loved one. Actually, dehydration takes away pain. Someone dehydrated, in a coma or sleeping most of the time doesn't feel pain anymore. Its nature's way."
I should emphasize, however, that in the process of dying, any person can experience some pain and discomfort even if the underlying illness is not painful in itself. This is usually not severe and can be controlled with pain medications if necessary, but it is a result of the dying process not the withholding of food and water.
Another writer reminded me that even without any water, it can take much longer to die than one would think; in her mother's case, six days. This was also our experience at Joseph's House when residents were sometimes unable even to be fed during their last days.
A very important comment came from someone who pointed out that the meaning of "no longer able to feed oneself" can be a little unclear:
"In our nursing home setting, when someone is having difficulty chewing or swallowing or pushes away food, the first step is usually moving to a food texture which is easier to manage, such as minced food, or adding extra gravy. A further step would be to pureed food. In many cases, residents still feed themselves these meals. Another thing we see is that when people stop feeding themselves when given a fork & knife or spoon, they may still feed themselves very well when provided with finger foods such as sandwiches or cookies or a banana. And they may drink very well when the cup is placed into their hands but not drink at all if they have to reach for the cup on their own."
The obvious implication is that in prior discussions with family and writing the advance directive, you need to be clear about what you intend by "no longer able to feed oneself."
I'm grateful to all of you who made comments or wrote emails. I encourage such comments because they are often very helpful in clarifying and adding to what I have written.
Editor’s Note: David’s journey with Mild Cognitive Impairment was chronicled in “Fade to Blank: Life Inside Alzheimer’s,” an in-depth look at the real lives of families impacted by the Alzheimer’s epidemic. His story continues on his personal blog on AgingCare.com.