As I have stated previously in these posts, I do not intend to allow myself to live far into the condition we term dementia, should that fate befall me. However, we never know what might happen to thwart our intentions, which is why I have chosen to use advance directives as creatively as possible to prevent being forced to live a life that I find intolerable and inhumane. This is why I welcome any efforts to create the circumstances that allow everyone to have the lives and deaths they want.
End of Life Washington (EOLW) has made at least two important efforts to further this purpose. EOLW provides support in Washington state for people choosing end-of-life options. The group offers two advance directives that pertain to someone who develops Alzheimer’s or some other form of dementia – the “Alzheimer’s Disease/Dementia Mental Health Advance Directive” and a recently developed and published directive – “Instructions for Oral Feeding and Drinking” – that is similar in some ways to the supplemental directive I discussed in earlier posts. It seeks to decline food and fluids during late-stage dementia, whereas my supplemental directive includes declining food and fluids for what I have termed “my future demented self” when I lose normal mental capacity as I define it. (I derived the phrase “future demented self” from reading both Norman Cantor’s and Thaddeus Mason Pope’s essays on the same subject.)
EOLW’s “Alzheimer’s Disease/Dementia Mental Health Advance Directive.” includes detailed instructions and caveats about how and when such directive may or may not be honored. It includes many concerns about Alzheimer’s and other dementias, but does not focus on voluntarily stopping eating and drinking (VSED), the subject of the newer directive. Both directives are intended for use in Washington state and will require some revision for use elsewhere.
The EOLW dementia directive deals with such matters as when to stop driving, financing care, where to live in various circumstances, who can serve as a Washington state mental health care agent if you don’t select someone, the importance of a statement of personal values to explain choices made in your directive, decisions about sexual relationships (including stating your views about a partner’s or spouse’s sexual activity with others), disposition of your pets when you can no longer care for them, participation in drug trials for dementia, what to do if your care facility refuses to honor your directive, your choice for a guardian should one be needed, and how the directive may be revoked.
With respect to revocation of the directive, the EOLW dementia directive allows you to choose to revoke the directive if you are mentally incapacitated. I am unable to understand how a person can make what is essentially a legal or medical decision without having the mental capacity to understand the consequences of their decision-making and without being able to give informed consent. While the drafters of the directive seem to understand the consequences of a revocation under these circumstances, they do not explain why anyone should be able to revoke a legal/medical document without mental capacity or competence.
The directive also suggests where it should be kept, who should have a copy, making changes to it, and several other relevant, practical matters. Except for the revocation matter, this dementia directive covers many important issues for someone who later becomes incapacitated by dementia, and could be informative for those in other states who are concerned about dementia.
While EOLW’s VSED directive would not satisfy my decisions about my future demented self, it does move the discussion in a positive direction. The VSED directive provides a list of criteria to determine that a person no longer wants to continue to eat and drink. While the list is useful for its purpose, I choose to decide this matter for my future demented self while I am still mentally competent to do so with the full understanding of my purpose and its effect, rather than let others decide the matter for me.
One section of the VSED directive lists numerous actions of the patient that should be understood to mean that food and fluids are not wanted by the patient. I have no quarrel with the list. But most of the actions occur, usually, only in the late stages of dementia. I have chosen to make the decision to stop receiving food and fluids at an earlier point in the progression of dementia.
I do not want to wait until the end-stage of dementia to die. I want to die once it is clear, according to my written criteria, that I am permanently mentally incapacitated because the person that I am now and have been will no longer exist. My body will be there, but my personality, my cognitive functioning, my values, and essentially the essence of what made me who I was will no longer exist. This is my decision for myself and not for any other person. Everyone faced with dementia must decide for themselves when they no longer want to continue to live. Unlike me, many may want to continue to live until their dementia causes their death, which is their right.
I do not encourage anyone to follow my path. I encourage everyone to follow their own paths, just as I hope everyone would be willing to allow me the same right. My approach to dealing with my own dementia, should it occur, is not an established process and may not be honored. But I expect my healthcare agent or surrogate to do everything possible, including engaging in litigation, to assure that my healthcare wishes are honored.
What EOLW has done with its VSED directive is commendable, but it would do nothing to satisfy my right to decide when my life is no longer worth living, which is the point when dementia has robbed me of the dignity and humanity that I judge important for my own life. It is the point which, as Norman Cantor describes it, prolongation of my life would be, for me, “intolerably undignified.” I suggest that it would be, for me, also intolerably inhumane.
While there is not clear legal authority that allows such decision-making, if Cantor and I and others can’t decide that point for ourselves, what then is the meaning of liberty?