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 these notions in a philosophical /religious forum, or from a medical pundit, or equally likely, by 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)/dementias, might detect abnormalities before any discernible symptoms. What if the results so distresses someone that they seek PAD?
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 refused to use the term “bucket list,” but we did sit down and plan 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, not just during treatment, but in the evaluation of surviving after successful treatment. 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, NMDA agents, etc that were known to be non-curative, not even considered “disease-modifying.” I insisted on 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.
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, resveratrol, turmeric prepared in capsules, coconut oil, cocoa in capsules, etc., even a “photobiomodulation helmet” [they cite an MIT study which I read, not of 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. If anything, 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. There were no sudden changes, no outward displays of discomfort. Maybe a turning point was 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. But again, is it “quality life”? Is it “quality dying”?
Her research autopsy met AD diagnosis 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. The cognitive issue was highlighted in the JAMA Viewpoint cited above.
They cite the extensive ethical framework surrounding testing issues for Huntington’s Disease, another deteriorating neurological condition. 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. Home hospice might be thought to be about dying in comfortable surroundings (even though we couldn’t get hospice in time because of bureaucracy). Perhaps our home care demonstrated both aspects without an obvious switch (and no billing or paperwork), even having “physician assistance” in the end, just because a doctor was there, but without any prescriptions.
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