Avoiding Prolonged Dying in Advanced Dementia: How Can Healthcare Professionals Help?


ASBH Conference – Houston, Texas

To avoid PROLONGED dying with dementia: which interventions may be LEGAL?
And, can health care professionals also help patients avoid PREMATURE dying?

—A video for those interested in Dementia and/or strategic Advance Care Planning.
There are two viewing options in addition to watching straight through:

The complete video bears the title of our presentation at the American Society for Bioethics and Humanities: Avoiding prolonged dying in Advanced Dementia. How healthcare professionals can help.Terman.2015.10.22. To prevent premature and prolonged dying and to reduce the suffering of patients and their loved ones who face dementia… these were the goals motivating the presentation of Dr. Stanley Terman and patient/advocate Michael Ellenbogen on 10-22-15 in Houston. The edited presentation was posted to YouTube on 11-10-15.  Link: https://youtu.be/gBim9UKI2-s

Note: This is the only video that includes 12 minutes of Q & A, but it is 1 hr. 13 minutes long. So…

Two alternative ways to view: (A) View this video in three sittings of about 25 minutes since there are natural places to pause as indicated in the Time Schedule in the YouTube description. (B) View any or all of the separate YouTube videos listed below:

(a) “Advanced Dementia patient–unable to complain–suffered unrecognized pain from second degree burns.”  https://youtu.be/-6FkR-9jhQ0

This 32-second video convinces some viewers that unrecognized pain can be a serious problem for Advanced Dementia patients. It is included in both the complete video and video (c).

(b) “A strong plea for a timely, peaceful dying by Young-Early Onset Dementia patient, Michael Ellenbogen.” (15 min)  https://youtu.be/VJ6h3pmDPtY Michael shares his personal story and what he knows about other patients.

(c) “An Advanced Dementia-specific Living Will. Michael Ellenbogen demos making one decision at a time.” (14 min)  https://youtu.be/i8HbZp9pbaI  Shows how to use the decision aid tool that generates an Advanced Dementia-specific Living Will.

(d) “Help us legalize the option to Withhold and Withdraw Food and Drinks for Advanced Dementia patients.” (4 min) https://youtu.be/235GbrpRtdE This is Michael’s mission: to increase end-of-life options for patients who will be suffering with Advanced Dementia.

(e) Avoiding prolonged dying in Advanced Dementia. How healthcare professionals can help. Terman.EXCERPT. Includes only Dr. Terman’s narrated slide presentation. (30 min. 11/11/15)  https://youtu.be/d0aSUCHknrI



The “Ironclad Strategy”

These clinical and strategic forms work with most other Living Wills and state’s required forms:

  1. Natural Dying—Living Will (generated by sorting My Way/Natural Dying Cards);
  2. Natural Dying Advance Directive combined with the Natural Dying Physician’s Orders;
  3. Consent Form to Relieve Unbearable Pain by Palliative Sedation;
  4. Natural Dying Agreement & Natural Dying Affidavit—strategic forms based on the law;
  5. Natural Dying Organ Donation Form (Optional) and Natural Dying Explanation and
    Commitment (for skilled nursing and assisted living facilities); and,
  6. Designation of Proxies/Agents; Specifying their Authority.



Store all YOUR forms and videos for rapid retrieval.

The www.MyLastWishes.org  Program is a national registry that stores your forms and videos,  to let clinicians use their smartphones, tablets, and computers to rapidly view emergency orders; obtain downloads/faxes of your clinical and strategic forms; and view videos by you and your physician. It further these goals: to avoid unwanted treatment; to increase your chances of surviving a medical emergency; to provide your contact information, address and map (if you get lost); and to display videos to convince others to HONOR your Last Wishes if the time has come for you to attain have a timely, peaceful transition.

MyWayCard from MyLastWishes.org

MyWayCard from MyLastWishes.org


Caring Advocates Living Will Planning Packages

  1. My Way Cards or Natural Dying Living Will Cards—an illustrated decision aid tool that generates a clear and specific Living Will that (A) informs your future physicians and others WHAT treatments you do, or do not want, and (B) serves as a guide so others will know WHEN to implement “Natural Dying” (if it is your choice); for example, if you suffer a bad car accident, a stroke, or reach Advanced Dementia.
  2. Unlimited, life-time updating opportunities of your Living Will (as long as you can still make treatment decisions). Just mail, fax, email or upload your updated “My Decisions Table” to Caring Advocates.
  3. Caring Advocates professionals can evaluate your present Living Will and recommend suggested wording for you to indicate which one you want to prevail—if in some areas, your two Living Wills may conflict.
  4. A set of Natural Dying Forms to implement your personal “Plan Now, Die Later—Ironclad Strategy.” Includes the Natural Dying Agreement (a bilateral contract between each of your proxies/agents and you); and the Natural Dying Affidavit (that most consider to be their “trump card”).
  5. A Consent Form for Relief of Unbearable Suffering that you and your current physician can sign, to help ensure that in the future, you will receive what treatment is required, for any kind of unbearable pain.
  6. Three books: (1) Peaceful Transitions: Stories of Success and Compassion; (2) Peaceful Transitions: Plan Now, Die Later—Ironclad Strategy; and (3) The BEST WAY to Say Goodbye: A Legal Peaceful Choice at the End of Life. (You can ask for a credit on this package for book(s) you already purchased.)
  7. MyLastWishes.org Program so clinicians can readily access your stored forms and videos if they urgently need to learn your end-of-life wishes. Includes a MyW Wallet Card, MyW Pouch, and MyW Stickers to place on drivers’ licenses and forms such as the Physician Orders for Life–Sustaining Treatment or POLST form as recommended in “B,” below. (You can extend your one-year subscription.)
  8. A $50 coupon toward Caring Advocates’ current price for its Thirst Reduction Aid Kit (TRAK), which you can purchase any time to use to help reduce symptoms of dryness, such as thirst.
  9. Telephone and e-mail support from Caring Advocates’ staff, to help you complete all forms and videos for your strategic Advance Care Planning.
  10. A ten-minute phone or SKYPE consultation with Caring Advocates’ Medical Director, Dr. Stanley A. Terman and then a $50 discount on his professional fee for consultations of one-hour or more.



Are these goals important to you?

  • To have a timely and peaceful transition?
  • To get complete relief from unbearable pain and suffering?
  • To avoid prolonged harm and burdens if you reach Advanced Dementia?
  • To have others honor your dignity and respect your privacy?
  • To protect your family members from stress and conflict?