This is a story about failures. First, it’s about my inability as a pediatric hospice physician to do the one most important job in this tender space. Second, it’s about well-meaning, loving parents’ inability to do their part in that job.
Jacob was a smart, funny, elementary-age kid, great with Legos.
It is a mitzvah to take care of your parents: “Honor thy father and thy mother.” And caring for people comes naturally to me. I’m a physician; this is what I do.
But when my father looked to me to cure my eighty-five-year-old mother’s dementia, saying, “You’re the doctor! Help her!” I knew he was asking too much.
And yet. How could I stand idly by while my mother’s mental acuity slowly drained away?
It’s the bright orange color that catches my eye. Nestled in a box under my home office desk, alongside unused breast pads and pumping supplies left over from the birth of my first daughter.
My first, because there should have been a second. A girl.
As a practicing child and adolescent psychiatrist, I’ve been trained to treat depression and evaluate suicidal risk. Yet when it comes to working with an adolescent who expresses a wish not to exist, trying to clarify what’s actually meant feels daunting.
I’m reminded of this one Monday morning as thirteen-year-old Paula sits across from me in the interview room.
Time fractured when my first husband died.
There was a before, which no longer existed, and an after, which was unimaginable.
In between, the thinnest–unfathomably thin–line, was the today. The today meant putting one foot in front of the other. One today led to the next today. And finally the year was over.
For the past three years, I worked as a rural primary-care doctor. Two months ago, I resigned to pursue further training in hospice and palliative care. My patients were the inspiration that illuminated every step of my way towards this new path.
Marly came to me for a workup of her persistently elevated liver enzymes. Together, we navigated her new diagnosis—liver cancer—and a series of failed treatments. Eventually, Marly’s thoughts turned to facing her mortality.
“Let me die,” you say.
You’ve listed the reasons, presented the arguments: You’re a burden, a mere speck in a world of billions, one that will not be missed. A life that never asked to be born. Why prolong this pain?
“Please, let me die,” you say again, this time with a sob that allows no more words.
I hear you, I do.
In 2013, as a hospitalist, I attended the annual conference of the Society of Hospital Medicine. This meant traveling from my home base in Ohio to Washington, DC, the site of that year’s conference.
The second day was winding down. Colleagues, new friends and countless strangers were scurrying to their rooms to freshen up and get ready for a night out on the town, where they’d continue to mingle, share research and professional achievements and scout out career opportunities.
IÂ had other plans, however.
Ever since his adolescent years, my son and I have had an ongoing conversation (you might call it an argument) about my habit of speaking too frankly when sharing my opinions, which I do frequently.
Or, as he puts it, I have a big mouth.
One winter morning in 2020, I was called to the reception desk to meet my patient Esther and her husband Hertzel. Some time earlier, I’d asked Esther–somewhat awkwardly–if she’d be willing to talk to me about her experience of being diagnosed with and treated for advanced breast cancer, and she’d willingly agreed. Today was the day.
Eighteen months earlier, Esther, in her sixties, had come to my hospital’s ER at her rabbi’s urging.
“I can’t do it—I’ll die!”
Veronica is in tears.
I’m a family physician, working in a pain-management clinic in the Bronx. As Veronica’s doctor, I’ve asked her to see me to discuss coming off her opioid medications. It’s part of a clinic-wide initiative to reassess using these medications long-term with patients who have chronic pain.
In the first months of medical school, we’re taught that patient autonomy should be one of a physician’s guiding tenets. The doctor provides diagnoses, prognoses and treatment plans, but ultimately it’s up to patients to make decisions about their own care.
As a family doctor, I often tell patients: “Only you can know what the right decision is for you. I’m here to provide information and recommendations and then to support your decision.”
But over the past year, as my father’s memory deteriorated and his life drew to a close, I learned about the ways in which our medical system limits patient autonomy.
During his last months, my father said repeatedly, “My brain is in chaos.”
