Casey Kasem's Living Will Did Not Work for Dementia: How to Make Sure Your Advance Directive Works

Check out this new video by Stanley Terman.







Casey Kasem received the diagnosis of Lewy Body Dementia in 2007. He created a Living Will with expert legal advice and the wishes he expressed in his 2011 revision were consistent. So why didn't this expression of end-of-life wishes prevent him from extreme suffering during the last chapter of his life?  Why was his designated proxy/agent forced to go to court twice? Why did the man who communicated with such a great voice, in the end, have NO voice?



Similarly, why did the British Columbia Supreme Court rule that Margaret Bentley must continue forced feeding—in the opinions of her husband and daughter (both designated as agents) and her personal physician—as she stated in her Living Will? This former nurse cared for Advanced Dementia patients so she was passionate about wanting to avoid a prolonged dying in Advanced Dementia.



Are there effective end-of-life options for the rest of us? How can we be certain that others will honor our wishes?



This video is a slightly edited version of Stanley A. Terman, Ph.D., M.D.'s presentation on June 18, 2014, to the San Diego Dementia Consortium. Although initially intended for a professional audience, its message is clear for all (even if one does not know that "dysphagia" means swallowing difficulties or needs to learn that "double incontinence" means inability to control both "#1" and "#2"). Dr. Terman is a psychiatrist, bioethicist, and author of four books on end-of-life issues.



The non-profit organization that Dr. Terman leads (Caring Advocates) feels it is so important for people to have Living Wills that will be effective for both Dementia and for the complete relief of pain, that its professional staff will review anyone's Living Will or Advance Directives sent to us at no cost or obligation. See Dr. Terman's other videos here.



Here is the Table of Contents by time in minutes for this video:

0.00 Introduction; "We live in exciting times."
0.46 The horrible disappointment if others do not honor a person's end-of-life wishes
1.29 Casey Kasem's wife did not have legal authority to demand his AMA discharge
1.46 How Casey Kasem suffered before he died.
2.25 What were Casey Kasem's wishes?
2.35 Casey Kasem's 2007 Living Will (excerpt)
3.00 Casey Kasem's 2011 Living Will (excerpt)
3.43 What his Casey Kasem's wife has said
4.42 Margaret Bentley's wishes
5.02 Margaret Bentley 1991 Living Will (excerpt)
5.19 The request, "I ask to be euthanized"
5.29 (Announcing Caring Advocates' offer to give opinion on YOUR Living Will.)
6.39 Our opinion regarding Margaret Bentley's Living Will
7.38 How others hand-feed Ms. Bentley
9.03 Chandler-Cramer Living Will (excerpt) that requests Voluntarily Stopping Eating and Drinking (VSED)
9.29 Nancy Cruzan (1990)
9.54 Can an Advanced Dementia patient VSED?
10.28 Why some consider VSED immoral
10.53 How a Living Will can be consistent with the teachings of conservative religions
11.33 What is "Natural Dying" and how does it differ from VSED?
11.40 The difference between WITHHOLDING and WITHDRAWING (line drawing)
12.09 Some patients might regain function as they undergo dehydration
12.38 Withholding food and fluid could be viewed as euthanasia, which NOT legal
13.54 Other orders included in "Natural Dying"; WHBOF, all Comfort Care
14.45 The "Ironclad Strategy" includes a step that would have been easy for Casey Kasem:
Make an audio (or video) recording that states your precise wishes.
15.25 Advance Care Planning can prevent premature dying based on the Dementia Fear
16.07 "WHAT" and "WHEN" are the two questions that Living Will answer
17.07 Granting Proxies/Agents leeway
17.49 Zero or 100% leeway (which can be understood)
18.01 Example: Double incontinence. Yes
18.47 The Natural Dying Living Will Cards — to decide "WHEN"
20.09 Discussion. How to get physicians to comply? (The "Ironclad Strategy")