Over the last few months I have found myself listening to interviews, recordings and webinars about end of life decisions, especially when dementia is the primary diagnosis.

What I have learned is both shocking and empowering.

What has shocked me is that the language in a common, generic living will does not give any directive to family members and health care professionals of persons with dementia, who despite severe brain damage, are not being sustained by artificial nutrition or hydration from which to be withdrawn. For most end stage dementia patients, life dwindles very slowly, and commonly, no feeding tubes or other mechanical devices have been utilized. When the patient no longer feeds themselves, well-meaning family members and caregivers find themselves feeding them by hand, thus sustaining the person’s life despite the fact that the patient’s cognitive impairment has become so severe that all awareness and abilities have dwindled.

What I have discovered that empowers me, is that new language can be added to our living wills, for any of us having, or fearing a dementia diagnosis, and wanting to avoid a long and slow decline beyond the time we are cognizant of our surroundings, able to care for ourselves –or ultimately recognize our loved ones.

The issue is that at this point, is life worth living? Some may say yes. Others, like myself, want to be sure to include language that underscores a desire to direct others to stop manually feeding or hydrating us, when all awareness, all abilities are gone. This, then, initiates an absolute course toward a natural death. It is critically important that we have discussed this with family and health care professionals this and update our Living Wills when still cognitively intact.

This is the statement I will be adding to my living will. ( almost verbatim from the interview recorded on the recent Diane Rehm show.(noted below)

“When my brain is shutting down, and I have forgotten who I love, how to eat, and am in a fetal position, merely being kept alive, I want my family to have a creative collaboration with the forces of nature* to allow a natural death at the earliest possible moment.”

* death by withholding of nutrition and hydration

If my family must advocate for me to have this final gift, I thank them in advance.

Resources:

NPR’s Diane Rehm show 7/7/14 on Choosing to Die copy/paste into browser
- http://thedianerehmshow.org/shows/2014-07-07/choosing-die
End Of Life University- Karen Wyatt, MD’s interview of Stanley Terman, MD of CaringAdvocates.org