End of life is a reality for all of us-- the how and when remain clouded. For some, it may well be a debilitating, prolonged agony punctuated by indignity, infirmity, incontinence and loneliness. For others, a blessed peaceful painless shuffling of the coils while asleep. DRNC's mission is to enlarge the palette of options to North Carolinians, to bring about the best death for each individual. It must become an accepted right of every competent adult to have full autonomy to make the right choice for themselves, without undue interference from the state, organised religion or even one's family. It should be viewed on par with the right to life, liberty and happiness-- something so essential that it is accepted as God-given, inherent, undeniable, inalienable. We are far from there ... yet.
And yet there is another elephant in the room which we rarely seek to tame: what of the eternal darkness we know as dementia and Alzheimer's? Loss of cognitive function, of mental acuity, of memory are the byproducts of this incurable, degenerative disease. A slow but eternal good night. And when the light goes out, there is someone left tending the zombie that we have become: usually a spouse, child, grandchild, nephew, loved one who slowly sees their life usurped into full-time caregiver. This is perhaps the cruelest outcome: two lives essentially emptied of that which makes life not just enjoyable, but bearable.
For the loved one metamorphosed into caregiver, there is the exhausting routine of watching over the dementia-ridden family member, changing diapers, cleaning soiled bed linen, hand feeding three times a day, entertaining an adult child. That is the physical ordeal. There is also the equally arduous mental and spiritual void of losing contact with someone who physically looks familiar, but who no longer knows who the caregiver is or who in fact they are.
No one contemplates the possibility of advanced dementia with anything but horror and trembling. Everyone knows that what makes humans special is the mind which distinguishes us and makes us each unique. For people who spent a lifetime in the information world: lawyer, doctor, architect, engineer, writer, teacher, politician... the loss of that which defined their life is particularly heavy.
We at DRNC are most frequently asked if MAID might be available for those descending into dementia. The answer is an unambiguous "No!" MAID laws specifically require the applicant for a prescription to be of sound mind and clear judgment. By definition, dementia robs a person of mind and judgment. So what can I do, we are asked, because I would not want to continue if my fate is the eternal darkness of advanced dementia?
The only legal recourse is PERHAPS an advanced directive which contemplates a descent into advanced dementia, at which time a wish for VSED (Voluntary Stopping of Eating and Drinking) would be triggered. Where difficulties have arisen is in interpreting the seeming acceptance of food and hydration when offered by a caregiver. Does the Dementia sufferer's volition to eat countermand the Advanced Directive of the Cognitively Capable Person's directive not to receive nutrition? If you are a healthcare provider, do you continue to offer food to someone who seems to willingly accept the profered spoonful of applesauce... or do you respect the earlier language of the AD?
To avoid confusion and add clarity, Robert Rivas, General Counsel at Final Exit Network has produced a Supplemental Advance Directive for Dementia (SADD) for those who have given the issue serious reflection and who have a much trusted healthcare proxy. Attorney RIvas notes that each state might react differently to a challenge to enforcement of the SADD... but there is also a likelihood that in some states, it will be given legal effect.
DRNC thanks Attorney Rivas for his yeoman's work in drafting the first step in helping all of us prepare for the worst case. Not everyone would want to opt for VSED in the case of advanced dementia. But for those for whom a descent into the perpetual darkness of Alzherimer's is worse than death itself, there is at least a possible solution. Additionally Final Exit Network undertakes to litigate any denial of the proposed SADD should a state actor or private litigant try to halt enforcement.
The SADD can be found here: https://finalexitnetwork.org/wp-content/uploads/2020/05/SADD-web-document-b.pdf
Edmund Tiryakian
Ed Tiryakian, J.D., MBA, founded Dying Right NC in 2015 and is its Executive Director. He previously worked in international banking in Asia before retiring to his native NC.He believes End of Life issues are one of society’s most pressing challenges as we all live longer and the medicalization of the dying process continues to conflict with the individual’s right to choose his or her end.
