- 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?
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
Physician-assisted dying requires caution
Now that physician-assisted dying will be permitted in California, let me voice one note of caution that these three stories illustrate.
“Roger” (not his real name) believed that at 74, he was in an early stage of dementia. His goal was to avoid a prolonged dying in advanced dementia. Roger had been a successful entrepreneur. Now retired, he was depressed after his five-year search failed to find a new romantic partner.
As he was completing his living will forms and videos, Roger learned a right-to-die organization offered helium asphyxiation to die “sooner and more quickly.” Its leaders taught that the only sure way for patients to avoid prolonged dying in advanced dementia is to die in early dementia, while they still have capacity, even though it sacrifices years of good living.
Worried that Roger’s dying might be premature, I decided to contact Roger’s son. He definitely wanted his father, his children’s grandfather, to live. The son revealed Roger had two brief psychotic episodes that Roger intentionally never revealed.
I contacted the right-to-die organization from which Roger sought “help.” Without revealing his name, I described his identity sufficiently. I explained helping him with “self-deliverance” was legally treacherous and similar to the litigated case of Jana Van Voorhis, an Arizona psychiatric patient. After her brother and sister learned she died by helium, they asserted they could have (once again) prevented her dying – had they been notified she wanted to die. Unfortunately, no one from this organization responded. Several months later, an obituary announced Roger had died. Cause of death: not disclosed.
Tragic, unnecessary premature deaths like those of Roger, Jana Van Voorhis and Godelieva might be prevented by a law that requires patients to contact their family members about their intent to die. Yet the California bill allows patients to initial this sentence: “ I have decided not to inform my family of my decision,” and states, “A qualified individual who declines or is unable to notify next of kin shall not have his or her request denied for that reason.”
Why inform the family members?
• Family members might encourage patients to accept treatment that might be effective.
• To consider living longer, patients may need to hear family members say they are appreciated, important and not overly burdensome.
• Loved ones deserve their last chance to say, “Goodbye,” to avoid a prolonged bereavement that is harder to resolve.
• Requests for assisted dying are sometimes the patient’s way of asking, “Do you still love me?” or “Am I still worth all this trouble?” or “Can I talk about my existential crisis?”
• Suicide can be patients’ way to express great disappointment and anger directed toward someone (their final “F-U”).
Such reasons suffice to automatically require a referral to a mental health specialist. Yes, respecting patients’ privacy is important, but this becomes irrelevant after death.
The End-of-Life Option bill requires attending physicians to “refer the individual for a mental health specialist assessment … if there are indications of a mental disorder.” So does the law in Oregon. Yet only three of 105 patients who died were referred in 2014, while a study showed one in four had clinical depression. If referrals were required for those who refuse to inform family members, the outcome could range from, “Patient has sound reasons not to inform family members,” to “Patient’s judgment is impaired due to a mental disorder.”
Physician-assisted dying is much less expensive than cancer chemotherapy. It may even be less costly than psychotherapy in Belgium. I, like many, would prefer psychiatric evaluations for every patient who wants to hasten her dying. The law should at least require referrals for those who refuse to notify their next of kin. Consider them waving a flag that says, “Please evaluate me before you help me kill myself.”
Originally published in The San Diego Union-Tribute:
The “Ironclad Strategy”
These clinical and strategic forms work with most other Living Wills and state’s required forms:
- Natural Dying—Living Will (generated by sorting My Way/Natural Dying Cards);
- Natural Dying Advance Directive combined with the Natural Dying Physician’s Orders;
- Consent Form to Relieve Unbearable Pain by Palliative Sedation;
- Natural Dying Agreement & Natural Dying Affidavit—strategic forms based on the law;
- Natural Dying Organ Donation Form (Optional) and Natural Dying Explanation and
Commitment (for skilled nursing and assisted living facilities); and,
- Designation of Proxies/Agents; Specifying their Authority.
PEACEFUL TRANSITIONS: Stories of Success and Compassion
Peaceful Transitions: Stories of Success and Compassion, describes the powerful opposition to Natural Dying. This book has two goals: to educate and to motivate. It describes how to overcome their challenges to make sure others will honor your Known Wishes by creating your ”ironclad strategy”:
- How to select an appropriate proxy/agent.
- How to complete several forms (and why all are necessary).
- How to alert 9-1-1 first responders and make your most current forms available when critical decisions need to be made.
A story shows how a hypothetical person’s ironclad strategy successfully overcame a series of challenges. He started planning at age 45 and attained his goal of a PEACEFUL TRANSITION that was also TIMELY: neither prolonged nor premature at age 90.
A Medical Thriller by Stanley A. Terman, Ph.D., M.D.
From conspiracy to enlightenment- A medical thriller based on the premise that insurance companies must promote greater willingness to hasten dying to increase their profits. Includes the author’s position paper on Physician-Assisted Suicide, and a “How To” guide to the alternative — A legal peaceful way to hasten dying.
The BEST WAY to Say Goodbye: A Legal Peaceful Choice at the End of Life
A Comprehensive discussion of several end-of-life options illustrated by poignant memoirs, with useful guidelines and suggested forms, that is still entertaining by including humorous stories. Actually a book within a book, non-professional readers can, if they wish, skip the more technical sections that refer to over 200 legal citations and medical references. About 475 pages, shrink-wrapped, 7 by 10 inches, hardbound or trade paperback. Available in books stores soon or on the web. Audio version of memoirs and narratives coming soon. Free pdf and audio excerpts are on the web site below, which describes several e-books now available.
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.
Caring Advocates Living Will Planning Packages
- 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.
- 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.
- 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.
- 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”).
- 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.
- 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.)
- 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.)
- 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.
- Telephone and e-mail support from Caring Advocates’ staff, to help you complete all forms and videos for your strategic Advance Care Planning.
- 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.
Helping dementia patients avoid premature death.
“How long do I have?” is question No. 1 after receiving a terminal diagnosis. If diagnosed with dementia, often the next is, “How can I avoid prolonged dying in advanced dementia?”
The movie “Still Alice” featured Julianne Moore in an Academy Award-winning performance portraying losses of memory, family, profession, independence, perhaps dignity and losing control over one’s destiny.