If you wish to construct a special advance directive for shortening life when and if dementia supervenes in the future, you might consider something along the line of what I have done for myself. This is what I think should be available to us all, but is not at present—enabling legislation would be necessary for this to be. The statement is a combination of instructions that are now possible legally and ethically, combined with certain other instructions that I know to be legally problematic (and perhaps impossible). These instructions will be asking more of my appointed agent than she can deliver, but they indicate how strong my wishes are about not living in a state of dementia, which strengthens the hand of my agent in trying to do the best she can to honor my requests.
These requests that I have outlined can be attached to one’s presently accepted advance directives (proxy designation document and/or standard living will) as supplementary instructions. They can contribute to shortening the duration of dementia in that they indicate that the main thrust of decision making is, at every turn, to be toward those actions (or nonactions) that will prevent prolongation of life when dementia has supervened.
You could utilize the following proposals and statements in such a document, constructing a statement for yourself. The following is the sort of thing you might say.1
There should be an initial statement concerning your mental competence at the time of signing and your intact ability to make medical decisions, which is attested to by a physician. The document would then recognize that you, as a presently competent person, are making a decision that is to be binding on your agent as nearly as possible when and if, at some future time, you suffer from irreversible dementia. The directive would further recognize that you prefer dying to living in a state of dementia.
When this special advance directive is triggered by the onset of dementia (at a stage in the disease discussed next), the first required action of caregivers would be that they not employ any of the treatments or supportive actions outlined below, which would be withheld as unwanted treatment. (Much of this list is like an ordinary living will, but not all.)
These statements might be followed by a set of criteria defining the sort of dementia with which you would be unwilling to live and would wish further active measures to be undertaken to shorten life and the period of suffering, such as the withholding of fluid, accompanied by sedation (terminal dehydration with sedation), which would be the next step beyond withholding unwanted treatment. Such a step would be aimed at hastening death. These criteria (which trigger active measures to shorten life) you could list in detail, indicating which single criterion or which combination of criteria should trigger the withholding of fluids. The criteria I have listed for myself include the following, which you could add to or subtract from.
Under present laws, there is no legal assurance that the criteria above could be used in an advance directive to ensure that caregivers would withhold fluids and administer sedation, but there is an advantage to requesting this. Namely, it makes completely clear that the patient absolutely does not wish to live in a state of dementia. It could sway caregivers’ opinions as to what should or should not be done in various settings. That probably is the most that can be hoped for with our present laws. In the future, I hope that laws will be passed that will allow this request to be binding if a patient becomes demented.
In my own document, I have stipulated that my wishes have been carefully discussed with my agent and that she understands my wishes. I have stated further that if any of the actions discussed previously causes me to die sooner rather than later, that is my wish since I do not want to live in a state of senile dementia or cognitive impairment that precludes a rewarding and satisfying intellectual life.
A section for signature of the principal, witnesses, and designated agent(s) would follow. There would be no requirement for a notary or an attorney.
A proposal such as the one described in this appendix would reduce the indignity and suffering imposed on persons with dementia, and I feel that such a proposal should ideally become allowed by law in all the states in the near future.