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.

Godelieva De Troyer was a 64-year old Belgian woman. She was estranged from her son and his children. No one will ever know if reconciliation would have been possible. Belgium’s criteria for euthanasia include unbearable emotional suffering that can be alleviated only by dying. By themselves, antidepressant medications had been insufficient to relieve her depressive symptoms. Evidently, Godelieva was never offered relationship-focused psychotherapy. While the physician who approved euthanasia for Godelieva knew she received years of psychiatric care, he still allowed her to decide not to contact her son before he euthanized her.

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: