Part 1 of this multi-part analysis identifies eight Dementia Directives by authorship and discusses overall characteristics of each. This second part analyses the approaches to drafting such directives to help readers think about the elements of each.
The first step is to clearly identify the purpose of the directive. For example, Barak Gastor explains that his dementia directive is intended to clarify a person’s goals as they reach each stage of dementia. Identifying goals is important for all of us. One problem with Gastor’s approach is the issue of who will determine when a particular stage of dementia has been reached. That is not specified in his directive, though he may assume that it will be the treating clinician.
Gastor’s dementia directive can help users think about their goals. However, it is not likely to satisfy my desire to die as quickly as possible once my mental capacity has diminished to a specified point. Depending on stages of dementia to trigger a directive leaves too much to the clinician’s interpretation to satisfy my goal to control the timing of my death and not live beyond my mental competency.
Norman Cantor describes clearly what he wants if he has dementia:
I wish to be allowed to die upon reaching a degree of permanent mental dysfunction that I deem to be intolerably demeaning. For me, this means mental deterioration to a point when I can no longer read and understand written material such as a newspaper or financial records such as a checkbook.
That degree of specificity is essential to satisfy Cantor’s (and my own) goals to die before lingering very long in incompetency. If living through dementia to wherever that takes a person is satisfactory to the person, though, these kinds of directives are not needed.
End of Life Washington’s dementia directive
End of Life Washington (EOLW) offers two advance directives and two related documents that pertain to someone who develops Alzheimer’s or some other form of dementia:
1. INSTRUCTIONS FOR THE LIVING WITH DEMENTIA MENTAL HEALTH ADVANCE DIRECTIVE (12 pages)
2. ALZHEIMER’S DISEASE AND DEMENTIA: MAINTAINING DIGNITY AND CONTROL OF THE END OF LIFE (2 pages)
3. MY INSTRUCTIONS FOR ORAL FEEDING AND DRINKING (2 pages)
4. ABOUT MY INSTRUCTIONS FOR ORAL FEEDING AND DRINKING (2 pages)
EOLW’s dementia directive with regard to VSED (item number 3) is similar in some ways to both Cantor’s directive and the one I developed. It allows a person to decline food and fluids during late-stage dementia, whereas my personal 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.)
The EOLW directives were drafted to be applicable in Washington state, which may account for their total length and provisions, some of which are unintelligible to me. The greatest incongruity I found in the EOLW dementia directives is that they allow a person who is mentally incompetent to revoke the directives. 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.
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–the point at which I have lost mental competency based on my specified criteria.
The EOLW 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.
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.
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 or some other malady causes their death, which is their right.
Compassion & Choices dementia directive
The dementia directive of Compassion & Choices (C & C) has much useful information, but the extensive materials (31 pages) may be daunting for many people to work through, including a checklist, planning guides, value-determination instruments, and more. C & C’s approach may be helpful for those who aren’t sure about what they want if they are diagnosed with dementia. C & C uses an addendum for dementia to be added to an advance directive.
The dementia addendum leads a person to VSED if other diseases or medical conditions do not result in death before reaching a triggering point, but it does so by giving other people the task to interpret the behavior of the dementia patient toward food, rather than being more directive about when providing food and fluids should cease. This approach creates opportunities for endless squabbles about the meaning of the actions of a demented patient.
It relies, also, on reaching a stage it terms “advanced dementia,” which the addendum defines adequately, though allowing too many people to be involved in the decision-making process. C & C’s approach to a dementia directive does, however, demonstrate an understanding of the main issues involved in honoring such an instrument.
End of Life Choices New York dementia directive
The End of Life Choices New York (EOLCNY) dementia directive is prefaced with a needed discussion of the circumstances of a patient with dementia and lays a foundation for the use of VSED, as do most other such modern dementia directives.
The EOLCNY dementia directive allows a person to choose to eliminate all food and fluids after a certain point in the progression of dementia OR to allow the person to choose “comfort-focused feeding,” which is unlikely to lead to death in a reasonable amount of time, if at all. This, of course, is a choice to be made by a competent dementia patient, but is not a solution to a lingering death from the later stages of dementia.
The VSED provision will take effect only after a person cannot eat without help, which a person may be able to do far past the time of mental competency. For example, my father was able to feed himself for about five years after he became mentally incompetent. This dementia directive also uses only one example of a behavior that some might interpret as indicating a desire to revoke the VSED portion of the directive. Those opposed to VSED have provided many examples of behavior that could be interpreted as revoking a VSED directive, something that is counter-intuitive because a person who is mentally incompetent cannot make such decisions under our laws.
Summing up Part 2
I do not encourage anyone to follow my path or the path of others who have tried to find ways not to live to the later stages of dementia. 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.
Part 3 of this series on dementia directives will be devoted entirely to a discussion of the Final Exit Network’s dementia directive, which includes one unique feature that no other dementia directive includes–the offer of free legal support to have the directive honored.
I would love to see a directive for those of us who cannot put ourselves in some kind of care facility. I know of two groups; one is the group I am a part of, whose exposure to toxic mold has made it impossible to live in facilities where there is any history of water damage. The medical community does not understand (and often does not even believe in) this disorder and the agony it exposes its sufferers to. The other group is those with chemical sensitivities, who once again cannot live in facilities where they are exposed to the usual cleaners, air fresheners, carpet, “new” anything including furniture put together with glue; anything with an odor that is often not even detectable by others. The mold-exposed are often brain-damaged and much more likely to suffer from dementia but the chemically sensitive are not immune. Nothing is available for us in the way of traditional medical help, and since traditional medical help often simply does more damage, making the assumption that a person is in a care facility under medical care is excluding these two growing groups of people who have no recourse. How does a person who can’t go in many medical facilities due to mold or chemicals even get a diagnosis that would make it possible to even have a directive?