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[Right_to_die] One way to handle dementia as it starts
World right-to-die news list (nonprofit) right-to-die at lists.opn.org
Thu Aug 11 18:46:03 PDT 2011
THE ONSET OF DEMENTIA
On 8/11/2011 1:48 PM, Stanley Terman wrote:
A key question in the Sir Terry Pratchett interview [yesterday] is, “Where do you draw the line?”
Sir Terry said, "People who I have met who have opted for it are very rational in their thinking… they know they are in the grip of a terrible disease for which there is no cure and they do not want to spend any more time than necessary in the jaws of the beast."
But this is what Sir Terry Pratchett and many others with dementia conclude… only because of what they do NOT know: "[It's] always a problem for someone with Alzheimer's… Regrettably, quite a few people go earlier than they might need to, to make certain that they are totally coherent when they are asked various questions and fill in the various forms that they have to fill in."
This position confuses the “RIGHT-to-choose-to die” with the URGENCY to die while your mind is still sound enough to make the ultimate, existential decision. The unfortunate result is PREMATURE DYING. Actually, premature dying is NOT necessary and would only increase the great tragedy of having dementia. The alternative solution requires you to accomplish two Advance Care Planning tasks when your mind is still sound: you must clearly state WHEN you want to draw the line, and WHAT you want to happen at that point.
To describe the precise condition for which you would want to die, you need to learn what it is like to suffer from Advanced Dementia. There are a constellation of symptoms, losses of function, unwanted behaviors,
and conflicts with lifelong values. Some may be much more important to you than others. Your task is to make your present decisions so clear about YOUR criteria that your future doctor and decision-makers will agree “WHEN” that time has come.
You also need to clearly and convincingly (which is a legal term) express your desire for “Natural Dying” when that time comes. “Natural Dying” means you wish to refuse all food and fluid by all routes, included manually assisted spoon feeding as well as to refuse all life-sustaining treatment, but to receive all the Comfort Care you need, which will include ways to decrease the symptom of dry mouth or thirst. “Natural Dying,” which research, observation and personal experience all indicate can be quite comfortable, has also been called Voluntary Refusal of Food and Fluid. It’s medical dehydration, not starvation, and the two weeks or less it generally takes to die can let some alert people change their minds or exchange healing goodbyes. While some may also refer to it as Voluntarily Stopping Eating and Drinking, there is really nothing to which any patient in the advanced stage of dementia can voluntarily give consent. Such decisions must be made when you still have a sound mind.
To sum up, you need to define WHEN and WHAT so your future physician will honor your treatment preferences. Physicians in the UK risk losing their license or being charged with a crime if they disregard a clear and valid Living Will (Advance Decision). In contrast physicians in the US are protected from discrimination if their religion or conscience conflicts with complying with patients’ wishes. There are powerful groups that oppose “Natural Dying,” who may present a significant challenge to fulfilling your wishes. That’s why, to make sure others that will honor your “Known Wishes,” should consider setting up an effective strategy.
--- Stanley A. Terman, PhD, MD, Carlsbad, California
Author of “The BEST WAY/ to Say Goodbye: A Legal Peaceful Choice at the End of Life” (2007),
“Peaceful Transitions: Stories of Success and Compassion; Plan Now, Die Later—Ironclad Strategy” (Second Edition, 2011) and
“My Way Cards for a Natural Dying—Living Will” (2011).
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NEW: Videos in “Plan Now, Die Later—Ironclad Strategy” are posted on YouTube, Amazon.com, and www.CaringAdvocates.org/videos.php. (A DVD containing most of these videos is available.)
- A Living Will for Alzheimer's Dementia: it's easy and effective. (10 minutes.)
- Natural Dying plus Strategies can Prevent Prolonged Dying and Pain in Advanced Dementia and Terminal Illnesses. “Part I: Challenges”; “Part II: Strategies” (Each part is less than 30 min.)
- WHEN WE DIE: How to avoid premature dying and prolonged dying. (30 minutes.)
- MyLastWishes.org: A rapid way to inform and to convince future clinicians to HONOR your emergency orders and Known Wishes. Demonstrates how “smart” phones can scan, read and retrieve forms; and play short video recordings of you and your physician. (23 minutes.)