Like many of you, I have an Advanced Care Directive comprising a Living Will and Health Care Proxy (or Power of Attorney) to make decisions for me if I lose my capacity to do so. I live in a jurisdiction (the District of Columbia) that permits physician-assisted death. My family and I have discussed my health care values and preferences. If I ever have a mind crippling illness and had earlier told my family and physician my preference not to continue living in that situation, my family and doctor know what to do. Right? Wrong!
You’d think that even with advanced dementia, or Alzheimer’s, an Advanced Care Directive would prevail in any discussion of whether I should receive aid in dying. Not so. DC like other jurisdictions with “right to die” or death with dignity laws, requires I must be of “sound mind” if I choose to end my life. If I suffer from dementia, I’m obviously not of sound mind. Death with Dignity statutes (as they’re referred to) are highly detailed and must be strictly adhered to.
In her recently published book If I Ever Lose My Mind, retired Episcopal Priest Susan Mann Flanders poignantly re-counts her father’s battle with Alzheimer’s. She vividly portrays how her father, who she writes “left us years before he died,” and her family were ensnared in a no man’s land of forced inaction.
After acknowledging that “this area is fraught with legal and moral implications,” Rev. Flanders asks the unanswerable: while we place increased emphasis on personal autonomy as we age, “…how can autonomy be honored for those whose mental capacities have been ravaged by late-stage dementia? How can self-rule, or autonomy, be honored if there is no self?”
Flanders argues that “the same compassion extended to those with terminal disease who are of sound mind and wish to shorten their lives…should also be offered to those suffering from extreme dementia based on their clearly expressed desires and intentions while still of sound mind.”
Stories of friends (and their caregivers) who endured the wrath of Alzheimer’s drive her argument that “assisted suicide in the face of advance dementia can be seen as an affirmation of the goodness of life…” Others may disagree and question whether being of ‘un-sound mind’ justifies this level of compassionate care.
Rev. Flanders ends with two scenarios: one relates the long and tortuous natural death of her father. The second, imagined scenario, describes how her father, now with advanced dementia, is joined by his family who reluctantly agrees to their father self-administering a prescribed medication that brings on his death.
If I Ever Lose My Mind leads us to the next frontier in the debate over compassionate care, or aid in dying, or assisted suicide. Giving the growing number of dementia-impacted individuals and their families, has the time come for us to address this vexing issue?
NOTE: Neither Carolyn nor I endorse a number of the views put forth by Rev. Flanders in her book, If I Ever Lose My Mind. However, Sig felt her book deserves attention because of the rising incidence of dementia and Alzheimer’s Disease.
M. Jane Markley says
Sig and Carolyn, great write up. I can imagine you may not agree with her but the issue remains. It is of particular concern for one of my clients and we have been challenged by the question of what happens when your mind appears to change after dementia sets in. It is not an easy question. Thanks for addressing it head on.