Palliative and Hospice Care

Dear Grief ~

When we met, you were an unwanted and unwelcome visitor. The kind that makes their-self at home without invitation and bears a stubborn resolve to never leave. Sometimes ignorable, usually not.

And since that time, though I have tried to shield those around me from your agony, I’ve watched as you’ve met many friends, family and patients. You have appeared through sorrow, through anger, through hyper-productivity and through helpless despair. And in this I have begun to realize the beautiful complexity of your presence.

Medical school was, at times, traumatic for me. Although I now love practicing medicine, I am honestly not sure I could endure the training again. In fact, many of the lessons I learned in the process of becoming a physician were about what type of physician I did not want to be.

I still remember the moment—midway through my third-year clerkship, following a tumultuous internal medicine block—when I realized that palliative care was where I belonged. By carrying forward lessons learned from the imperfect practice of medicine, I have developed a set of values that now ground my current practice.

To my former neuro-oncologist (separated by insurance):

Greetings, again.

What you said when I first became your patient, about the consequences in adult survivors of childhood cancer with secondary tumors, was spot on, and I’m now in palliative care.

A dentist friend once mused that people should be born with a third set of teeth that would erupt late in life, since our permanent teeth evolved at a time when humans’ life expectancy was shorter and thus they wear in midlife. Imagine the Tooth Fairy visiting us in our sixties!

Since that conversation, I’ve pondered how long our bodies are meant to last. As a family physician, I wonder whether medical advances have set up some body parts to fail prematurely. I’m deeply saddened that societal structures have evolved minimally to keep pace with the way we now age.

I cradle my ninety-nine-year-old mother’s head in one hand while I massage shampoo through her sparse hair. She floats in the water; her feet do not touch the end of the tub. Always a small woman, now she is barely there. I offer spoons of coffee ice cream.  Of all the pleasures she still manages to eke out of her vastly diminished life, eating ice cream in a warm tub ranks high. Should one of the cats sit on the rim of the tub . . . . Well, that is perfection.

Life is a series of choices—some important, some mundane. This is a story about a rather mundane choice of mine that was very important to someone else.

It was Friday. Because of the location of my visits that day as a hospice nurse, I’d had no opportunity to get lunch. Now, finally headed home, I decided to find a restaurant for dinner. I wanted a relatively quiet place so I finish writing my last few care plans and notes as I ate. I remembered Uncle Joe’s—a nice little Italian restaurant; even if it was full, it had no more than 12 tables. I hadn’t been there in a while but knew they had good iced tea, so I decided it would be just right.

My father-in-law was dying. He’d had five years of remission from esophageal cancer, but the latest recurrence hadn’t responded to treatment. As he neared the end, he and his family decided to move him from the custom-built contemporary home he’d designed to a privately run hospice, just over a mile from his home.

I had taken some time away from work to support my husband, his father, and the family during those last days. My main jobs were to run support and errands as needed so the family could stay at his bedside.

It was an overcast Saturday as I made my way down the hall, examining one elderly patient after another at our in-patient hospice unit. Mr. G was alone, his room dark. He didn’t respond to my voice. I wasn’t surprised:  his nurse had told me he was close to death and appeared comfortable.

I reached for his wrist to feel his pulse with one hand while I placed my stethoscope at the bottom of his sternum. No radial pulse. But the sound of his heart was remarkable: a thrumming, a quivering, a vibration, a sound I’d never heard before but instinctively recognized. He was in ventricular fibrillation, his heart was flailing.

When she came, her legs were cold and her heart weak. The tracings showed flickering beats. She was confused and barely there. She was a ticking time bomb.

Sometimes I have to pinch myself. Is this really my twenty-fifth year of practice as a palliative care physician? My head is full of memories of caring for hundreds of patients as they navigate their final days of life.

I would not have survived caring for my parents at the end of their lives without the help of my hospice angels. Ma spent the final 10 days of her life in a palliative care facility; Dad endured the last three months of his life getting at-home hospice care. The individuals from hospice—nurses, occupational and physical therapists, counselors, and aides—not only supported my parents but also gave me the love and care I desperately needed.

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.