Dear readers,
My thoughts and feelings about palliative and hospice care took hold during medical school and residency training.
I was a medical student during the AIDS epidemic of the mid-1980s, when our Bronx hospital admitted a succession of patients infected with HIV, a virus that compromised their immune systems and made them vulnerable to a host of infections.
They came to the emergency room short of breath, feverish, somnolent, unable to see properly, convulsing, soiling themselves with intractable diarrhea…The list of possibilities was long and scary.
These patients, invariably young, were all going to die. We ordered blood tests, X-rays, spinal taps, more blood tests, biopsies, CT scans, more blood tests, intravenous antibiotics and pills, knowing that our efforts to save them were ultimately futile.
I recall a four-year-old girl, infected with HIV at birth, who I helped care for. Now in the final stages of the disease, as emaciated as a concentration-camp victim, she gradually became bedridden, her breathing more labored. She was clearly dying, and we had nothing left to offer. Still, to the very end, we continued making her cry with our blood sticks and IV insertions.
One Friday night, she died in her hospital room. Alone.
To this day, her lonely death–and the physical pain we caused her during her last days–haunts me.
As a resident, I recall taking care of an intubated patient in the ICU. She was dying of metastatic lung cancer. The last days of her life would be spent in that ICU, surrounded by beeping machines, her family clinging to a belief that she would somehow improve.
In short, during my training, I saw far too many instances of too much care–or, at least, the wrong kind of care, where we offered medical interventions instead of therapies to relieve suffering. I saw far too many futile resuscitations. Too many heroic measures that caused pain and came to naught.
During my training, I also got to observe hospice nurses, who paid attention to their patients’ suffering and made sure that the dying were comfortable. Who spent time with grieving family members. Who were able to accept the fact that we are all mortal–that there comes a time when death can no longer be defeated, but must be negotiated with.
For myself, I decided that I didn’t want to spend my last moments on earth having my ribs broken during a failed resuscitation–or unable to speak to loved ones because of a breathing tube in my windpipe.
When my elderly mother began suffering from dementia, my brother (also a physician) and I were on the same page. We’d seen what happens to the elderly in the hospital. The tests that lead to more tests. The confusion that comes with being in new surroundings, sharing a room with a screaming roommate. The days that pile up as problems multiply.
Our goal was to spare Maman that trauma.
We arranged for her to live in a nearby nursing home, where she received affectionate care and where we visited regularly. On occasion, I’d get a call late at night: A fall, a complaint of belly pain–that would have automatically meant a trip to the emergency room.
“Wait,” I’d say. “Let me come see her first.”
I’d get dressed and drive over. The moment she saw me, Maman would brighten. It could have been mid-afternoon, as far as she knew. She’d laugh. We’d chat.
I’d make sure she could walk. A nurse and I would apply a Band-Aid if needed. If the issue was belly pain, I’d poke at her abdomen to reassure myself that this wasn’t a surgical emergency.
Then I’d kiss her good night, and an aide would tuck her into bed.
We kept her out of the hospital. Maman died in her sleep at age 96. I’m grateful that her final days were peaceful–and free from some of the medical excesses I’ve witnessed.
September’s More Voices theme is Palliative and Hospice Care. What’s been your experience of palliative or hospice care–as a caregiver, a recipient or a healthcare provider?
Share your story using the More Voices Submission Form. For more details, visit More Voices FAQs. And have a look at last month’s theme: A Turn for the Better.
Remember, your story should be 40-400 words. And no poetry, please.
We look forward to hearing from you!
With warm regards,
Paul Gross
Editor
5 thoughts on “September More Voices: Palliative and Hospice Care”
Beautiful story. Lucky mother to have such a caring son to ‘save’ her from unnecessary, costly investigations…for what?
Thank you for sharing your story
My mother used to tell us even when we children were very young that she didn’t want to be admitted to a hospital, let alone the ICU, in her final days. She always said she wanted a peaceful passing. I never understood untill I witnessed how an ICU environment is as a house surgeon!
The lonely passing away of my mother-in-law and my father-in-law just 16 days apart, during COVID, each of them in a different ward in the same hospital, was extremely painful for the whole family.
Palliative Care is a blessing. Training in Palliative Care has been fulfilling for me.
I could not have said it any better. As an ICU nurse, retired after 43 years, the last few ridden with fitful nights thinking dreading the intensive care I would be required to provide and the futility that I would be faced with, I finally retired on March 1, 2020. That was just a stroke of luck for me as Covid had just emerged. Things had changed significantly since I had begun my career in 1973. We did not have such sophisticated equipment, tests and drugs to keep us alive above and beyond the ability to be functional. Physicians were able to help families come to terms with the inevitable. Kudos to you, Dr Paul Gross!
Paul,
The more I read about you, your own experiences and those of your patients the more I admire you. You make a great editor for this journal.
Paul, you and your brother were both great sons and great doctors to your mother; it appears she had what we all wish for: a happy and peaceful death.