Washington DCAs 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 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 (“living wills”), documenting their desire not to be fed when they can no longer feed themselves. So, anyone contemplating either 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:
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 onself” can be a little unclear:
[I]n 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 [but are then] given a fork & knife or spoon, they may still feed themselves very well or 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.
My mother, 79, is in an excellent board and care home in California. She has been well taken care of and feed by others 3 times a day for the last 4 years. (She has had dementia for 10 years and can do nothing for herself, not even speak). She would not have wanted this life. But her advance directive only states no feeding tube. So her life has been artificially prolonged. As her daughter, and her POA, I'm not sure what to do.ReplyDelete
I'm no lawyer, but my understanding is that as your mother's Power of Attorney (POA) you have wide latitude to make decisions for your mother, especially if you believe they are what your mother would have chosen had she known of the options. Unless there is something in her advance directive that explicitly declines not feeding her, it would seem to me that you could make that decision for her. You could at least check it out.Delete
Thank you for your reply. I guess I do have the power to make that decision—and my mother trusted my to make it for her. But at this point, I couldn't bring myself to stop feeding her. I feel like it would be murdering her—in spite of knowing she would want me to. Would I ask my daughter to do the same for me? Its a lot to ask of someone. There are no easy answers.Delete
Your feelings in this case are of primary importance. If you feel as if it would be "murdering her," of course you should NOT do it. If you and your mother had explicitly talked about this eventuality and she had said she didn't want to be fed, then, in my opinion, you would have had the responsibility either to agree to follow her desires or pass responsibility for her care on to someone who could. But you didn't have that explicit conversation, and it's not fair for ANYONE to feel guilty (or be made to feel guilty) for their own spiritual and/or moral sense. In my opinion, you made the right decision, regardless of what your mother MIGHT have wanted. (And just to state the obvious, your mother is most likely oblivious to the impact of your decision BY this time, so you're not really forcing her to undergo undue suffering.Delete
Thank you. Thank you. Thank you - for this installment, for your previous entry and for all the people who commented upon it. I have been plagued by guilt for over 30 years for blindly following my mother's instructions that there be no extraordinary measures and No IV. Without food and without fluids, it took my mother well over a week to die, and I have been beating myself up ever since.ReplyDelete
The whole issue of refusing and withholding food and water is very complicated. Here in Canada a family took a case to court because staff (in a religion-based facility) continued to spoon-feed their mother who had made a living will in advance of her decline.ReplyDelete
One argument was that the mother continued to open her mouth to receive food when a soon was placed on her lips and closed her mouth when she was "full." She had, therefore, changed her "mind." Though this is likely a body reflex and would not have matched the mother's original intent.
Another argument the facility used was that the family, then, should take responsibility for the mother and "watch her die from their neglect" themselves.
In addition, the facility was not about to withhold "basic care" and put itself at risk for criminal charges. It wouldn't be out of the question to think that families who did take responsibility themselves in those final days could face criminal charges as well as the guilt that Anonymous describes.
Ultimately, the Canadian woman's wishes were denied in court. news.nationalpost.com/.../alzheimers-patients-desire-to-die-denie...
Despite the rapidly evolving ethical, spiritual, and legal standards in end-of-life care, I'm sure there will be relatives who object, doctors who won't attend, and nursing homes that won't allow it. I can't blame the judges; in most cases the case law has not been well established and their responsibility is to judge on the basis of the law not on the basis of their own ethical precepts.Delete
Ultimately, then, it's still the case that people who make these kinds of decisions about end-of-life care must take all the appropriate legal steps, talk through the issues thoroughly with any relatives close enough to cause trouble, review their desires with their physician (and get his or her assent to stay with the care) and find institutions that will cooperate (or at least let you take the dying patient home).
Such a loaded topic. As my mother's POA, I finally allowed hourly morphine and thereby no food or water. It was such a long struggle getting to that point, but as much as I miss her demented, cancer-ridden soul... I feel it was the Right thing and was supported by hospice and her "home".ReplyDelete
Here is a link to an article on hand feeding in patients with advanced dementia from Annals of Long Term Care:ReplyDelete
Here is a link to the accompanying editorial:
I seem to remember a poll done at the time, but cannot find a trace of it.
People smarter than I am seem to frame the discussion as about whether or not hand feeding is an "ordinary measure" like clean linens that is obligatory or an "extra-ordinary measure" like antibiotics that is optional and can be refused. It seems to me that in advanced dementia if the person has made their wishes clear (ideally explicitly in the form of an advanced directive or similar document, but not necessarily), that hand feeding is not required and, in fact, if the person does not want it, should be forbidden. I think this will become a more and more active area of debate in our society as the boomers age.
Unrelatedly, I have been a long time lurker here as well as a reader of your books dating back to *my* med school days. Thank you for sharing your thoughts and experiences over the years. They have immeasurably enriched my life and made me a better doc and person. Thank you.
Thank you for this post. I feel talking through these issues is good information for your doctor and loved ones and care givers. No antibiotics. No tubes etc. But asking another to withhold care…… hmmmmmm I wonder if it’s ever OK to ask someone to stop caring. I feel not. Won’t the eating and drinking decrease naturally? The pain medicines would provide comfort. I do not want to burden those around me with the guilt of what I would have wanted. Things happen, changes, things come up. Time will work its magic. I waffle at times on the subject. But I still question the demand this puts on another human being.ReplyDelete
These are very difficult questions that must be worked out (in each unique situation) together between the dying person and his/her caregivers. I would suggest, however, that withholding food and water at the dying person's (previous) request is not to "stop caring." It might be the most caring thing you could do.Delete