Marketing Death and Alzheimer’s Disease

An April, 2019 study in the Journal of the American Medical Association titled “Attitudes Toward Physician-Assisted Death From Individuals Who Learn They Have an Alzheimer Disease Biomarker” found that  approximately 20% of cognitively normal older adults who had elevated beta-amyloid — a biomarker that is thought to increase the risk of Alzheimer’s disease — said they would consider physician-assisted suicide if they experienced a cognitive decline. Not everyone with amyloid plaques goes on to develop Alzheimer’s disease.

Although no state with legalized physician-assisted suicide currently allows lethal overdoses for people with Alzheimer’s or other dementia, Emily Largent, JD, PhD, RN (one of the authors of the  study) said that:

“Our research helps gauge interest in aid-in-dying among a population at risk for developing Alzheimer’s disease dementia and grappling with what they want the end of life to look like”

And

“Public support for aid-in-dying is growing…Now, we are seeing debates about whether to expand access to aid-in-dying to new populations who aren’t eligible under current laws. That includes people with neurodegenerative diseases like Alzheimer’s disease.”

CHOOSING DEATH

As the US birth rate declines to a 32-year low  while people are living longer, now there are more people older than 65 than younger than 5. This has major economic and cultural implications, especially with diseases such Alzheimer’s that usually affect older people.

Back in 2012, I wrote   about a Nursing Economic$ Summit “How Can We Afford to Die?” that had an 8 point action plan. One of the points discussed the importance of getting everyone over the age of 18 to sign “living wills” and other advance directions that also included the caveat: “if many patients have advance directives that make positive, cost-conscious systemic change impossible, most of the other efforts discussed as part of our  action plan will go for naught”. (Emphasis added).

It should not be a surprise that the latest Oregon physician-assisted suicide report   shows that 79.2% of those people dying by assisted suicide were age 65 or older and most reported concerns such as “loss of autonomy” and “burden on family, friends/caregivers”.

With Alzheimer’s disease routinely portrayed as the worst case scenario at the end of life for a person (and their family), there are now programs to “help” people plan their own end of life care.

Such programs include Death Cafes where “people drink tea, eat cake and discuss death” and the Conversation Project  that is “dedicated to helping people talk about their wishes for end-of-life care”. The Conversation Project was co-founded by journalist Ellen Goodman after years of caring for her mother, who had Alzheimer’s.

Compassion and Choices (the former Hemlock Society) is the largest and best funded organization working for decades to change laws and attitudes about assisted suicide and other deliberate death options. Compassion and Choices now has a contract rider for people in assisted living facilities that:

 “will respect Resident’s end-of-life choices and will not delay, interfere with nor impede any lawful option of treatment or nontreatment freely chosen by Resident or Resident’s authorized healthcare proxy or similar representative, including any of the following end-of-life options” which include:

“Forgoing or directing the withdrawal of life-prolonging treatments

Aggressive pain and/or symptom management, including palliative sedation,

Voluntary refusal of food and fluids with palliative care if needed

Any other option not specifically prohibited by the law of the state in which Facility is located.” (Emphasis added)

CONCLUSION

I have both a professional and personal interest in Alzheimer’s disease.

Having taken care of a mother with Alzheimer’s until her death, I treasure many of the moments I had with her. It is possible to both begin the eventual mourning and still appreciate the special moments that indeed do come. My mom was a very high-strung woman who constantly worried about everything. The Alzheimer’s calmed her down somewhat and especially blunted her anxiety about the presence of a tracheotomy for her thyroid cancer.

One of my favorite memories is sitting on a couch with my mom on one side and my then 2 year-old daughter on the other. Sesame Street was on and I noticed that both Mom and my daughter had exactly the same expression of delight while watching the show. A friend thought that was sad but I found it both sweet and profound that their mental capacities had intersected: One in decline, one in ascension. Perception is everything.

Also, I often took care of Alzheimer’s patients as a nurse and I enjoyed these patients while most of my colleagues just groaned. Even though such patients can be difficult at times, I found that there is usually a funny, sweet person in there who must be cared for with patience and sensitivity. I found taking care of people with Alzheimer’s very rewarding.

And although I might be at a higher risk of developing Alzheimer’s disease myself because of my mother, I won’t be taking a test for biomarkers to try to predict the future.

Instead, I will spend my time living the best life I can and hopefully helping others. I believe that life is too  precious to spend time worrying about things that might happen.

American Academy of Family Physicians Urges the American Medical Association to Drop Opposition to Physician-assisted Suicide

Compassion and Choices, the former Hemlock Society and now well-funded promoter of assisted suicide and other death “choices”, is celebrating the new resolution by the American Academy of Family Physicians (AAFP) to oppose the American Medical Association’s (AMA) long-standing opposition to assisted suicide.

The AFFP, the second largest component society of the AMA with over 131,000 members, just approved a new resolution adopting a position of  “engaged neutrality toward medical-aid-in-dying (aka physician-assisted suicide) as a personal end-of-life decision in the context of the physician-patient relationship.” (Emphasis added)

But as Dr. Rebecca Thoman, campaign manager for Doctors for Dignity for Compassion and Choices explained when the Massachusetts Medical Society adopted the same policy in 2017:

A “‘neutral engagement’ position is even better than a simply neutral position. It means if Massachusetts enacts a medical aid-in-dying law, the medical society will offer education and guidance to physicians who want to incorporate medical aid in dying into their practices.” (Emphasis added)

Now, yet another physician-assisted suicide bill is expected to be introduced next year in the Massachusetts legislature.

The AAFP resolution also stated that:

“By supporting the AMA’s opposition to medical aid in dying, some members feel the AAFP is telling them that they are unethical

and that

“the American Academy of Family Physicians reject(s) the use of the phrase ‘assisted suicide’ or ‘physician-assisted suicide’ in formal statements or documents and direct(s) the AAFP’s American Medical Association (AMA) delegation to promote the same in the AMA House of Delegates.” (Emphasis added)

CONCLUSION

In 1994, Oregon became the first state to pass a physician-assisted suicide law. This came after the Oregon Medical Association changed its position from opposition to neutrality. 21 years later and after multiple failed attempts, the California state legislature approved a physician-assisted suicide law after the California Medical Association changed its opposition to neutrality.

The unfortunate message sent-and received- was that if doctors themselves don’t strongly oppose physician-assisted suicide laws, why should the public?

Still, it was a surprise that in June 2018, the American Medical Association House of Delegates rejected the AMA’s Council on Ethical and Judicial Affairs (CEJA) strong report recommending that the AMA continue its long standing policy opposing physician assisted suicide. Instead the delegates “voted 314-243 to refer the matter back to the trustees for further deliberation”.

With the crucial help of a supportive media, Compassion and Choices started this momentum towards acceptance of physician-assisted suicide and other death choices like VSED (voluntary stopping of eating and drinking), terminal sedation and withdrawal of even spoon-feeding, affecting not just doctors but also nurses and other health care professionals and institutions.

In addition, Compassion and Choices also opposes conscience rights, even stating that  the new Federal Conscience and Religious Freedom Division:

“is not about freedom; it’s about denying patient autonomy. Under their proposed rules, providers are encouraged to impose their own religious beliefs on their patients and withhold vital information about treatment options from their patients — up to, and including, the option of medical aid in dying. And your federal tax dollars will be used to protect physicians who make the unconscionable decision to willfully withhold crucial information regarding their care from a patient and abandon them when they are most vulnerable.” (Emphasis added)

However, here are a few ways any of us can help turn around this dire situation:

When the most basic medical ethic of not killing patients or helping them to kill themselves can be discarded in favor of “choice” or “quality of life”,  none of us of us can afford to be neutral- or silent-on this life or death issue.