Casey Kasem’s Living Will Didn’t Work for Dementia: How to Make Sure Your (Client’s) Advance Directive Works

“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 did the man who communicated with such a great voice, in the end, have NO voice?”

This is what Stanley A. Terman, Ph.D., M.D., goes about answering in a presentation to the San Diego Dementia Consortium on June 18, 2014.  Dr. Terman is a psychiatrist, bioethicist, and author of books on end-of-life issues. Here’s the slightly-edited video of his presentation.  (Though the audio is a little rough and there may be a few unfamiliar medical terms, you can easily get past it.)

Also — Dr. Terman founded a not-for-profit organization, Caring Advocates, dedicated to “helping people express their end-of-life wishes strategically.”  As part of this commitment, Caring Advocates is offering to have its professional staff review your living will or advance directive, at no cost or obligation, for its effectiveness for Advanced Dementia, Pain and Suffering Relief, and Mistaking a Living Will for a DNR.  (The website says it’s a limited time offer, but no deadline is given.)

In the video, Dr. Terman makes some notable points:

• He discusses both premature dying and prolonged dying.
• He is sensitive to what he describes as 2 types of decision-makers: the champions of autonomy and the religiously observant (he uses Catholicism in his examples), and he explains how this affects a person’s choices and the language in a living will.
• Given that nutrition and hydration can become big issues for people with dementia, Dr. Terman draws a distinction between withholding (not offering) food and drink, and withdrawing it (taking away artificial nutrition and hydration but putting out food and drink for the individual).
• There’s also some interesting legal language on the website for how to encourage physicians to honor an individual’s wishes (see “Ironclad Strategy”).

If you do get a review of your advance directive template, please let me know about this experience so I can share with others.  As always, I’m interested in your thoughts.

Randi J. Siegel, MBA, is the President of DocuBank (docubank.com), which ensures that the emergency information and healthcare directives of its 200,000+ enrollees are available 24/7/365 through the largest advance directives registry in the U.S., as well as access to an online safe for storage of digital assets and other vital documents.  Working with estate planning professionals since 1997, Randi frequently speaks at national estate planning conferences and has appeared on radio and television as an authority on registries.  A member of the Philadelphia Estate Planning Council, the International Society of Advance Care Planning and the Coalition to Transform Advanced Care, Randi is active in health education and public engagement related to advance care planning/advance directives.  She serves as Pennsylvania liaison to the National Healthcare Decisions Day initiative and as a board member of the Center for Advocacy for the Rights and Interests of the Elderly.  Randi is an ongoing contributor to the Academy blog.

Academy Guest Blogger
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