A recent article in National Review by Wesley J. Smith gets so many things wrong about Voluntarily Stopping Eating and Drinking (VSED) that it is difficult to know where to begin a response.
Among the many errors in Smith’s article are his references to Final Exit Network (FEN) as “euthanasia advocates” and an “assisted suicide supporting organization.” FEN does not advocate hastening a person’s death, whether by euthanasia or by one’s own hand. The decision to do so, FEN believes, is for each individual to make, and no one else.
What FEN supports is having the right to make such a decision. In addition, FEN urges that hastening one’s death in the face of unremitting suffering or anticipated, irreversible suffering or loss of cognizance should be preceded by thoughtful study, research, and discussion with one’s family. Hastening one’s death after such a process is far from what we think about when we use the term suicide — a word usually associated with mental illness and impulsive action, using less-than-peaceful means.
The headline to his article screams that right-to-die activists want to “starve” people with dementia. The article repeats the claim several times, as does another National Review article Smith wrote on the subject almost two years ago. If Smith were writing about VSED for the first time, he might be forgiven for this oft-repeated false statement, but it is irresponsible for a writer to know so little about his subject that he repeats a falsehood over such a long period of time. Even a modicum of research would reveal that people who choose VSED understand that they will die of dehydration, not starvation. This is why it is necessary to provide diligent oral care, to relieve the mouth dryness that occurs with those who have ceased eating and drinking. That dryness is caused by dehydration and can be ameliorated.
It is not uncommon, as individuals near the end of life and begin the dying process, for them to have no interest in eating and drinking. Those who provide palliative care to such people also must provide adequate oral care to keep them comfortable. It is no different for those who choose to hasten their deaths using VSED. I have written about this subject several times for FEN, including here and here.
FEN provides extensive information about VSED, as do numerous other organizations concerned with end-of-life issues. Anyone researching the matter would have to intentionally ignore the vast literature on VSED to make Smith’s mistake.
Smith also fails to acknowledge that hand-feeding is recognized as medical care, as discussed at length here and quoted below.
It should be clear — from [the Centers for Medicare & Medicaid Services’] own statement, from the training required of feeding assistants by federal and state regulations, from the supervision required of feeding assistants by nurses, and from the efforts of the states to provide extensive training done by medical personnel — that hand feeding is medical care. If so, it is a procedure or care that can be addressed in advance directives; that is, we may accept such care or we may reject such care.
This conclusion strengthens the case for rejecting food and fluids by hand feeding in dementia directives for those who do not want to live through the later stages of dementia and no longer feed themselves.
Smith ridicules a survey question by FEN about VSED. The question, he claims, is somehow defective because one of its five verbs is written in the passive voice:
Some people also propose that individuals with early stage dementia, who are still competent, should be able to stipulate for their future incompetent selves that they want food and drink withdrawn and for doctors to keep them comfortable so they can die peacefully.
To Smith, the question is the same as this example he offered:
If I threw you in a room and locked the door until you starved and dehydrated to death, would you consider that dying “peacefully?” Would you consider it “peaceful” if a doctor drugged you so deeply that you could not ask for food?
Of course, Smith’s example is absurd and faulty in several respects. It suggests that a dying person be neglected and refused palliative care. I know of no end-of-life organization that takes such a position on dying, but Smith falsely suggests by his example that supporters of VSED are as cruel as he wants to imagine they are.
Finally, Smith takes up the arguments about whether a person has a right to decide on future medical treatment and care if they have dementia. There really is no question here. The Supreme Court in its 1990 Cruzan decision, and virtually every state by statute, made clear that we have a right to decide our future medical care and treatment in advance of losing our mental competency, which is what happens in the later stages of dementia. If we declare that hand feeding is medical care and we don’t want it at some point after we have lost mental capacity, it is reasonable to expect that courts will honor this decision. In fact, this reasoning is at the core of FEN’s Supplemental Advance Directive for Dementia Care and other similar dementia directives that are available.
However, there is a provision in FEN’s dementia directive that addresses the possibility that hand feeding could be provided in certain circumstances after the implementation of the directive: “I instruct that I not be hand fed or hydrated unless, in my surrogate’s view, the lack of hand feeding and hydration appear to cause me physical or emotional distress and I affirmatively appear to seek to be hand fed or hydrated to relieve the distress.”
Two years ago, Smith made his position clear about who should decide our future care when we become mentally incapacitated:
No one should have the right — no matter how scared of dementia they may be — to compel others to starve them to death.
In spite of Smith’s starvation error again, it is clear that he does not accept that each person, while competent, has the right to make decisions for their own future care at a time when they can’t make those decisions for themselves. Contrary to Smith’s claim, no one is forced or compelled to care for anyone. If a care-giver is unwilling for any reason to provide the care called for in an advanced directive, they can be replaced, as they should be in that situation.
Smith’s position on advance directives would deny us constitutional rights and control over our own bodies in favor of his view about what should happen to us. I, for one, do not want Wesley J. Smith in charge of my future care. Fortunately, by both constitutional and statutory law, he is not able to control the care directed in our advance directives; each of us can and should control our own destiny.
How much of your rebuttal will National Review print? Might a petition signed by members of FEN and other supportive organizations influence NR’s editorial decision?
Ed — I think we’re assuming that very few supporters of the right to die are also National Review subscribers. I’d love to be proven wrong.