When are doctors allowed to act as next of kin? I recently experienced this situation with my patient Mary.
Now 74, Mary has short black-gray hair and rimless glasses. She is spry and fit. A retired artist, she has the gift of engendering in her doctors a desire to care for her. Recently, we were in the middle of a medical discussion when she interrupted to comment on something sitting on my desk: a ceramic ashtray that my mother had made. It is just this kind of attention that endears Mary to me.
When Mary first came to see me some 10 years ago, I noticed that she tended to be spacy, but over time, the spaciness has progressed to mild cognitive impairment and now Alzheimer’s. Given Mary’s genotype, it's not surprising that she finds herself in this predicament. She carries two APOE-4 genes, and without intervention, the risk of Alzheimer’s in such individuals is quite high.
Alzheimer’s is a condition that concerns me greatly. My mother died of it, as did my mother-in-law. My first cousin, 77, has it now. That is why, a few years ago, when I came across a course offered by Alzheimer’s expert Dr. Dale Bredesen called “Reversing and Preventing Cognitive Decline,” I signed right up.
The Bredesen Protocol is a multifaceted approach involving nutrition, exercise, sleep, brain training, hormone replacement, and supplements. Many participants have been able to regain their brain health and return to their former level of functioning. But it takes work, and social support.
Mary never married and lives alone. She is not a member of any faith group. Her only relatives are a 99-year-old mother in Arizona and an estranged sister, also in that state. She has many friends and until this pandemic year, was an intimate part of her block and her community. But there is no one person responsible for her health and safety.
I had been thinking for some time that Mary needed a personal assistant to serve as her “care partner.” The Bredesen support team connected me with a household staffing agency. I contacted them, and very quickly they found a suitable candidate.
Was I right to call the agency on Mary’s behalf? I had to use her credit card and sign a contract in her name.
Had I overstepped my bounds as a physician?
“You’re not her legal guardian,” my husband reminded me.
And yet, to me, it’s not so much a legal question as a moral one. How can I just sit back and let a patient of mine go downhill?
I’ve treated Alzheimer’s patients before, but never one with no next of kin. Is it possible to hire such a person? In effect, that’s what we're doing.
When my father was in his late 80s and widowed, he needed someone to cook and clean and do all the things my mother used to do before she got sick.
It took some time to convince him to accept a stranger in the house. “I don’t want someone underfoot,” he would protest.
Eventually, we hired a woman from an agency called “Caring Companions,” and it worked out rather well. Dad enjoyed dining out with Lygia, loved her enthusiasm in greeting trick-or-treaters, and relished the impromptu concerts she and her friends would give on our piano. She was almost like a wife, my brother remarked.
With Mary, we face the same objections my father had. She knows she needs help but cherishes her independence. “I’m not an invalid,” she complained when the care partner tried to cook for her.
The hired aide must tread a narrow path, helping but not taking over. It’s like the parenting challenge — encouraging independence while protecting from pitfalls.
Mary desperately wants to reverse her cognitive decline but cannot follow the Bredesen protocol on her own. Although I cannot hire her a next of kin, I can certainly seek out a loving person to serve as one. This brings me to a deeper question — exactly what is my role as a physician? If it is to enable my patients to achieve and maintain optimal health, then what I am doing for Mary is not just within my purview, it’s my job.
Have you ever gone above and beyond the job requirements for a patient? Share your experience in the comments below.
All names and identifying information have been modified to protect patient privacy.
Marjorie Ordene, MD is an integrative physician practicing in Brooklyn, NY. Her essays, short stories, and poetry have been published in various magazines and anthologies including The Sun, Tablet, Lilith, and Michigan Avenue Review.
Illustration by Diana Connolly