It’s Faustian – giving a nondisabled or slightly disabled person a chance to deny themselves access to food and water if they become significantly disabled and have resulting functional impairments. End of Life Choices New York, a leading supporter of legalized assisted suicide, has developed an “Advance Directive for Receiving Oral Feeding and Fluids in Event of Dementia.”
The form is intended to take effect if “1. I am unable to make informed decisions about my health care, and 2. I am unable to feed myself.” There is some ambiguity about what inability to feed oneself means. Is it inability to use utensils neatly or is it inability to get any food into one’s mouth independently? Also, since the document sweeps in liquids, it is unclear whether it applies if the person needs assistance eating but can drink with a straw.
Be that as it may, the form permits the person to choose Option A or B. Option A states, “If I am suffering from advanced dementia and appear willing to accept food or fluid offered by assisted or hand feeding, my instructions are that I do NOT want to be fed by hand even if I appear to cooperate in being fed by opening my mouth.” Option B allows for “comfort feeding” if the person wants it but with no coaxing or cajoling permitted. Food can be withheld under this option if the person is “indifferent.”
The ethicist Thaddeus Pope believes that this type of form should be available to cover conditions other than dementia such as strokes and brain injury. These just happen to be two conditions where people due to manual dexterity issues may need help with feeding at least temporarily. Pope is part of a group that has drafted an “Advance Directive for Voluntary Stopping Eating and Drinking”. Under this document, a person can indicate when it will be effective such as when “I cannot communicate with others beyond a few words, eye movements, etc.” A person in such a circumstance may be quite competent to make decisions of great complexity. Nonetheless if this box is checked, the form applies.
The core of the form is what happens “if I express the desire to eat or drink.” This depends on the option chosen but the person is out of luck either way.
The form provides that if: “I repeatedly show by words or gestures that I want to eat or drink, I want my caregivers to reassess my palliative care and (initial one):
__ continue to withhold all help with eating and drinking.
__ give me only enough food and drink for comfort even if it’s not nutritionally adequate (also known as ‘comfort feeding only’). I understand this approach will likely prolong my dying process.”
Thus, the form’s title is a sham. It has nothing to do with voluntary stopping eating or drinking. It is about denying access to sustenance based on disability regardless of what the person may want at the time.
Pope isn’t sure about the enforceability of the form but he appears to find merit in putting it out there anyway.
The ethicist Jacob Appel in trying to be dispassionate about the matter has stated, “whether to respect such instructions is a challenging ethical dilemma. It will likely be rendered even more fraught when legal cases begin to arise in which patients who signed such documents in the past and have since become significantly impaired vocally demand food and drink—forcing loved ones and physicians to choose between following the advance directive…or honoring the patient’s current pleas.”
It has been argued that a competent “current self” should be able to make decisions to determine the fate of an incompetent “future self” and it denies autonomy to the “current self” to limit him in doing so. What about the autonomy of the “future self” who may have different views? It is not a solution, as some have suggested, to respond to the food requests of a “future self” with so-called “comfort feeding”. That is not respecting autonomy. It is deceiving a person into thinking he is being nourished when he isn’t.
To my mind, the current-self/future-self dichotomy is false. There is only one person even though that person may go through changes. For example, there are many instances where a person believes they would never want to continue living if they found themselves in a particular condition in the future, such as quadriplegia, but then see value in their life once they actually find themselves in such a condition. Appel calls this “bargaining down” as if the person is settling for a lesser existence. It is more properly known as the disability paradox.
The forms supported by Pope and others pervert the concept of advance directives. First, although some people reach a point where they can’t make medical choices, virtually everyone capable of oral feeding can express whether they want to accept food or not. They can do it in the moment and make shifting decisions from one time to the next. The forms themselves recognize this. Unlike true advance directives, they contain explicit provisions overriding a person’s expressed desires.
Proponents have argued that spoon or hand feeding is “medical treatment” and therefore can be refused in advance. These arguments are spurious. Spoon or hand feeding is simply assistance with activities of daily living much like help in dressing or showering and indeed is less intimate. Countless thousands of individuals incorporate such help into their daily lives.
Moreover, if spoon feeding is designated as medical treatment, how long might it be before proponents move past advance directives allowing the current self to withhold oral food and liquids from a future disabled self to allowing surrogate decision makers to do the same thing – in the name of “compassion,” of course?
OMG. My mother is developing dementia. I cannot even imagine doing this to her. Especially when her grand daughter has always needed help and a straw to eat.
Here’s an excerpt from my paper, “I support the right to die. You go first”: Bias and Physician-Assisted Suicide,” in David Boonin, ed., Palgrave Handbook of Philosophy and Public Policy, 2018:
Consider someone who anticipates or is in the early stage of Alzheimer’s or some other disease causing progressive dementia and who deems death more desirable than what [Ronald] Dworkin describes as “living [a] demented, totally dependent li[fe], speaking gibberish, incapable of understanding that there is a world beyond [him], let alone of following its course” and relegated to what Dworkin denigrates as “meager childish pleasures” —which, by the way, is apt to make some readers grateful he was not their father. Dworkin suggests that people with this attitude
“consider signing living wills stipulating that if they become permanently and seriously demented, and then develop a serious disease, they should not be given medical treatment except to avoid pain. They may consider trying to make . . . arrangements . . . to have their money given away, or even, if possible, to be killed.”
But a problem can later arise. What if the patient, when demented, changes his mind? What if, anticipating this possibility, he has directed in advance “that life-prolonging treatment be denied him later, or that funds not be spent on maintaining him in great comfort, even if he, when demented, pleads for it” ? Dworkin holds that these later pleas should be overridden. He handles non-demented reversals of mind very differently. He says,
“Suppose that a Jehovah’s Witness has signed a formal document stipulating that he is not to receive blood transfusions even if out of weakness of will he requests one when he would otherwise die . . . But when the moment comes, and he needs a transfusion, he pleads for it. We would not think ourselves required, out of respect for his autonomy, to disregard his contemporary plea.”
What accounts for this difference? According to Dworkin, “A competent person making a living will providing for his treatment if he becomes demented is making exactly the kind of judgment that autonomy . . . most respects: a judgment about the overall shape of the kind of life he wants to have led.”
Dworkin grants that autonomy can be overridden by a later competent judgment, such as that of the Jehovah’s Witness who exercises a new autonomy by changing his mind. Severely demented people, however, on Dworkin’s view, no longer have autonomy or enough in the way of minds for their reversal to deserve respect . . . Thus, on Dworkin’s view, “the conflict between beneficence and autonomy” disappears in favor of the view that beneficence is served by ending the life of a happy dementia patient if this accords with the advance directive that he made while still enough of a person to count as having autonomy. Note that, as remarks I have quoted above indicate, Dworkin has this dismissive attitude even toward dementia patients who retain enough mental acuity to plead to be kept alive and in great comfort. His dismissal of the severely demented as nonpersons is indicated by his statement that if we “refus[e] to enforce [a severely demented but happy person]’s living will . . . we cannot claim to be acting for her sake.”
Dworkin’s dismissiveness is especially significant in view of the research suggesting that “a viable, even if crippled, self may endure far later into the [Alzheimer’s] disease process than was earlier believed,” where full selfhood is defined as “the capacity to have feelings and to be aware of them, to reason and be able to make decisions, and to enter into relationships with other persons. A person who has even one of these capacities can be said to have a self, even if limited and impaired.” By respecting a person who regards the prospect of happy dementia as worse than death, Dworkin disrespects the subsequently demented person whose “viable, even if crippled, self” is manifest in his awareness that he wants to be kept alive and in great comfort. Discounting the choice of a dementia patient who has this awareness and desire is cruel and discriminatory cognitive snobbery. Moreover, even someone who falls short of the above-quoted criteria for “viable, even if crippled selfhood” may still manifest happiness in partaking of the “meager childish pleasures” that Dworkin denigrates. Seeing such a person as “voting with his pleasure” to reverse the advance directive he made when in a different frame of mind (and which, admittedly, he can no longer comprehend) seems more humane than holding him captive to his former cognitive snobbery. Even crueler is the cognitive snobbery of Dennis R. Cooley, who, discounting any wishes of the patient in question, holds that the soon-to-be–demented have a duty to themselves, on grounds of dignity, to commit suicide before they can even become demented.
If a demented person who has no living will expresses a wish to die, I wonder if Dworkin would consider them competent to make that decision? What if they previously said they would want to live even with advanced dementia?
Good question, and I don’t know what he would say about this particular case. But he certainly gives evidence of bias against disabled people. For example, he denigrates the wish of a demented patient to remain “at home, rather than living in an institution, though this would impose very great burdens on his family” (Dworkin, 1994, p.221). He justifies this denigration on the grounds that “we all agree that people lead critically better lives when they are not a serious burden to others” (Dworkin, 1994, p.221). He overlooks those of us who believe that a demented old person deserves some reciprocal care from the “adult children” she raised and for whom she made sacrifices and/or that the “in sickness and in health” part of the marriage vows should count against institutionalizing one’s spouse against her will. Dworkin’s bias is further illustrated by his failure to recognize that the words I have italicized cut both ways. After all, if people lead critically better lives when they are not a serious burden to others, then family members lead critically better lives when they do not make their own comfort and convenience a serious burden to a patient who is institutionalized against her will in order to serve that comfort and convenience. Cf Patient and Family Decisions about Life-Extension and Death
Felicia Nimue Ackerman (From R. Rhodes, et al [eds,], The Blackwell Guide to Medical Ethics Blackwell, 2007)
Freedom of Choice?
If you seek to end your life,
Will you get support or strife?
Healthy people meet resistance.
Sick old people get assistance
(From The New York Daily News 2/7/22
The twisted death mongers at End of Life Choices New York are as scary, disheartening and disgusting as Vladimir Putin.
OMG. My mother is developing dementia. I cannot even imagine doing this to her. Especially when her grand daughter has always needed help and a straw to eat.
Here’s an excerpt from my paper, “I support the right to die. You go first”: Bias and Physician-Assisted Suicide,” in David Boonin, ed., Palgrave Handbook of Philosophy and Public Policy, 2018:
Consider someone who anticipates or is in the early stage of Alzheimer’s or some other disease causing progressive dementia and who deems death more desirable than what [Ronald] Dworkin describes as “living [a] demented, totally dependent li[fe], speaking gibberish, incapable of understanding that there is a world beyond [him], let alone of following its course” and relegated to what Dworkin denigrates as “meager childish pleasures” —which, by the way, is apt to make some readers grateful he was not their father. Dworkin suggests that people with this attitude
“consider signing living wills stipulating that if they become permanently and seriously demented, and then develop a serious disease, they should not be given medical treatment except to avoid pain. They may consider trying to make . . . arrangements . . . to have their money given away, or even, if possible, to be killed.”
But a problem can later arise. What if the patient, when demented, changes his mind? What if, anticipating this possibility, he has directed in advance “that life-prolonging treatment be denied him later, or that funds not be spent on maintaining him in great comfort, even if he, when demented, pleads for it” ? Dworkin holds that these later pleas should be overridden. He handles non-demented reversals of mind very differently. He says,
“Suppose that a Jehovah’s Witness has signed a formal document stipulating that he is not to receive blood transfusions even if out of weakness of will he requests one when he would otherwise die . . . But when the moment comes, and he needs a transfusion, he pleads for it. We would not think ourselves required, out of respect for his autonomy, to disregard his contemporary plea.”
What accounts for this difference? According to Dworkin, “A competent person making a living will providing for his treatment if he becomes demented is making exactly the kind of judgment that autonomy . . . most respects: a judgment about the overall shape of the kind of life he wants to have led.”
Dworkin grants that autonomy can be overridden by a later competent judgment, such as that of the Jehovah’s Witness who exercises a new autonomy by changing his mind. Severely demented people, however, on Dworkin’s view, no longer have autonomy or enough in the way of minds for their reversal to deserve respect . . . Thus, on Dworkin’s view, “the conflict between beneficence and autonomy” disappears in favor of the view that beneficence is served by ending the life of a happy dementia patient if this accords with the advance directive that he made while still enough of a person to count as having autonomy. Note that, as remarks I have quoted above indicate, Dworkin has this dismissive attitude even toward dementia patients who retain enough mental acuity to plead to be kept alive and in great comfort. His dismissal of the severely demented as nonpersons is indicated by his statement that if we “refus[e] to enforce [a severely demented but happy person]’s living will . . . we cannot claim to be acting for her sake.”
Dworkin’s dismissiveness is especially significant in view of the research suggesting that “a viable, even if crippled, self may endure far later into the [Alzheimer’s] disease process than was earlier believed,” where full selfhood is defined as “the capacity to have feelings and to be aware of them, to reason and be able to make decisions, and to enter into relationships with other persons. A person who has even one of these capacities can be said to have a self, even if limited and impaired.” By respecting a person who regards the prospect of happy dementia as worse than death, Dworkin disrespects the subsequently demented person whose “viable, even if crippled, self” is manifest in his awareness that he wants to be kept alive and in great comfort. Discounting the choice of a dementia patient who has this awareness and desire is cruel and discriminatory cognitive snobbery. Moreover, even someone who falls short of the above-quoted criteria for “viable, even if crippled selfhood” may still manifest happiness in partaking of the “meager childish pleasures” that Dworkin denigrates. Seeing such a person as “voting with his pleasure” to reverse the advance directive he made when in a different frame of mind (and which, admittedly, he can no longer comprehend) seems more humane than holding him captive to his former cognitive snobbery. Even crueler is the cognitive snobbery of Dennis R. Cooley, who, discounting any wishes of the patient in question, holds that the soon-to-be–demented have a duty to themselves, on grounds of dignity, to commit suicide before they can even become demented.
If a demented person who has no living will expresses a wish to die, I wonder if Dworkin would consider them competent to make that decision? What if they previously said they would want to live even with advanced dementia?
Good question, and I don’t know what he would say about this particular case. But he certainly gives evidence of bias against disabled people. For example, he denigrates the wish of a demented patient to remain “at home, rather than living in an institution, though this would impose very great burdens on his family” (Dworkin, 1994, p.221). He justifies this denigration on the grounds that “we all agree that people lead critically better lives when they are not a serious burden to others” (Dworkin, 1994, p.221). He overlooks those of us who believe that a demented old person deserves some reciprocal care from the “adult children” she raised and for whom she made sacrifices and/or that the “in sickness and in health” part of the marriage vows should count against institutionalizing one’s spouse against her will. Dworkin’s bias is further illustrated by his failure to recognize that the words I have italicized cut both ways. After all, if people lead critically better lives when they are not a serious burden to others, then family members lead critically better lives when they do not make their own comfort and convenience a serious burden to a patient who is institutionalized against her will in order to serve that comfort and convenience. Cf Patient and Family Decisions about Life-Extension and Death
Felicia Nimue Ackerman (From R. Rhodes, et al [eds,], The Blackwell Guide to Medical Ethics Blackwell, 2007)
Freedom of Choice?
If you seek to end your life,
Will you get support or strife?
Healthy people meet resistance.
Sick old people get assistance
(From The New York Daily News 2/7/22