Is Home Caregiving “Assisted Dying”?

Two conceptual questions:  Do we all “start dying” the minute we are born? Is home caregiving a kind of “aid in dying,” as captured in acronyms like MAID (medical aid in dying) or PAD (physician assisted death?).  I can’t remember if I first heard those notions in a philosophical /religious forum, or from a medical pundit, or equally likely, from a stand-up comedian.

A recent JAMA Viewpoint discussed dilemmas in PAD consults for those who get equivocal or bad results from some of the newer medical tests for dementia. These “biomarkers,” which purport to assess a person’s risk of developing Alzheimer Disease (AD) or other dementias, might detect abnormalities long before any discernible symptoms. What if the results so distresses someone that they seek PAD (or suicide)?

Some might consider AD and other dementias in the “fatal disease” category; after all, it is in the top ten listed death diagnoses in the US.

My wife developed early (now sometimes called “young”) onset dementia at age 57, with a diagnosis based on a battery of neuropsychological tests. Amyloid PET scans and other “biomarkers” were not available then.  We had noticed some behavioral changes, but her mother had died the year before, and I thought she was exhibiting “masked depression.”  

I had a hard time accepting the diagnosis, quite out of my territory as a pediatric oncologist, but my physician wife accepted it.  I was quite skeptical of the cognitive testing procedures, even though I highly respected my own neuropsychology colleagues, as we took care of childhood brain tumor patients together.

She had an awareness that I lacked; her own mother did have AD, which developed around age 85, until her passing away of an acute respiratory illness at age 90. My wife handled all the complicated executor duties without difficulty.

So the diagnosis was all the more shocking to me.  Afterwards, my wife refused to use the term “bucket list,” but we did sit down and she could still articulate ideas about some trips she had in mind.  We were able to complete some before her activities of daily living (ADL) became too onerous during travel: mobility, eating/feeding, dressing, bathroom use.

The progression of AD (Reisberg’s FAST is helpful) leads to ideas about “quality of life,” a notion that became more prominent in oncology care.  Sometimes the FAST scale is published with a timeline; we found the timeline didn’t apply.

After her diagnosis, we sought several opinions about the FDA approved cholinesterase inhibitors and NMDA agents, etc that were known to be non-curative, not even considered “disease-modifying.”  I insisted that she take them anyway, until she would not longer swallow them, even when I got liquid or chewable preparations.  She didn’t ever say, but she seemed indifferent to them. At least she didn’t have side effects. She was otherwise healthy anyway.

Now, in my own pediatric specialty practice, we discouraged OTC supplements: after all, some chemotherapy is considered to be “anti-vitamin” (methotrexate), so we didn’t want supplements to compete as we were striving to defeat cancer cells.  But my wife allowed me to forego any reservations I had, and allowed me to try OTC nostrums with her.  And I knew OTC things aren’t always innocent:  an herbal remedy in Europe was associated with the adverse event of bladder cancer.

My criteria was not just Internet hoo-haw, but a “legitimate” medical abstract somewhere, even better from a known academic center, or a listed clinical trial.  The Cochrane reviews (now perhaps less active) were helpful. We tried ibuprofen (“anti-inflammatory”), resveratrol, turmeric prepared in capsules, coconut oil, cocoa in capsules, etc., even a “photobiomodulation helmet” [their promo cites an MIT study which I read: not about effectiveness, but of the light energy penetrating cadaver skulls!].  It’s amazing what people will sell, but we didn’t knowingly try any real snake oil per se.

Nothing seemed to help in a bedside discernible way.  Progression  continued. If something slowed the progression, as the new anti-amyloid agents are supposed to do, it was hard to tell.  It was also hard to tell if anything accelerated the progression, but there were no signs of recovery. 

There were no sudden changes, but no outward displays of discomfort. No “Charly / Awakenings” magical movie moments.  Maybe a negative turning point happened in her last year, after she more or less refused to be fed, or take any liquid medication, with the obvious consequences. It seemed more “willful” than specific neurological dysfunction.

The time from diagnosis to death at home was about 14 years.  From gentleman bloggers who were also home caregivers, that duration doesn’t seem unusual; it’s hard to pin down an average duration of life from time of diagnosis, in the medical literature.  Observational studies seem to show mixed results for conventional older agents prolonging life in nursing home settings. But again, is it “quality life”?  Is it “quality dying”?

Her research autopsy met AD diagnostic criteria.

Of course, MAID and PAD are professional medical and/or legal definitions, which vary by location, usually involving a licensed practitioner writing a prescription for a lethal dose of FDA approved medication. It allows a terminally ill person, meeting certain cognitive and other criteria, the ability to end their own life fairly quickly. The cognitive issue was highlighted in the JAMA Viewpoint cited above.

They cite the extensive ethical framework surrounding testing issues, using Huntington’s Disease, another deteriorating neurological condition, as an example.  They didn’t mention Dr. Nancy Wexler’s own refusal to take the test she helped develop, or her ethical writings on the matter.  To paraphrase, she asked herself whether knowing that she didn’t have the mutation would make her any happier than she already was.  

Home caregiving might be thought to be about living as fully as possible, even as abilities deteriorate, in comfortable surroundings. We defied some conventions, like the Beers criteria for nursing home medications, when we gave children’s diphenhydramine to help her sleep. It seemed to work without a change in her cognitive status; she may have been more alert during the day because of better sleep.

Home hospice might be thought to be about dying in comfortable surroundings (even though we couldn’t get “real” hospice in time because of bureaucracy; I had done oncology home hospice visits in my career). Perhaps our home care demonstrated both aspects without an obvious switch (and no billing or paperwork).  We even had “physician assistance” at the end, just because a doctor was there, but without any lethal prescriptions.