Coming home: trading hospital nursing for hospice care

by Clara Yim Bolduc

This article was originally published in the Boston Globe under the title One less hospital nurse in America - me

When I tell people that I work in hospice, inevitably their reaction is to stop smiling. Their expressions turn serious, solemn, concerned, or uncomfortable — all the things we feel about death. “That must be really hard,” they often say, or, “I could never do that.”

People assume that being a hospice nurse must be sad or emotionally taxing. The truth is, my job is a lot of fun. It’s joyful. I spend my time helping people live well in their final weeks and days on Earth. What could be better than that?

Like so many nurses, I left my job at a hospital during the pandemic. The problems I faced in the hospital environment — unsafe staffing ratios, grossly unrealistic requirements for productivity, and the relentless administrative focus on efficiency at the expense of safety and patient care — long preceded COVID-19. But they’ve grown far worse in its wake. Some 600,000 health care workers left their job in November alone. That’s nearly 3 percent of the health care workforce. This supports what I keep hearing from the nurses and doctors I know across the country: Hospitals have become unsafe and unpleasant places to work.

The truth is, despite the unpleasantness, I really loved working with patients at the hospital. It was exciting and rewarding to help people with complicated illness and injury return, as much as possible, to their former selves. I wasn’t sure how I’d adjust to the slower pace of home health care, but I knew I needed a job where I could spend quality time with my patients without feeling constantly rushed and pulled in several directions at once.

Most of medicine strives to prolong life and repair the body, restoring to us, as much as possible, the potential and vitality of youth. Hospice care for terminally ill patients in their final six months of life is comfort-oriented, and the treatments we offer are palliative, not curative. Our primary concern is increasing quality, not quantity, of life.

As a nurse accustomed to thinking of death as the enemy and patient recovery as a universal objective, the move to hospice required that I come to an entirely new understanding of healing and wellness. Profound healing can happen outside of the goals of repair and restoration, but it took me a while to learn this. When I started the job, despite knowing the parameters, I kept hoping, almost instinctively, that my patients would make some miraculous recovery.

A few months into my new job, I had a patient, I’ll call her Ann, who’d taken up painting after retirement. She’d been prolific, filling her ramshackle house with stacks of canvases. Every inch of wall space was covered. She mostly painted landscapes, the rocky shoreline, similar to the view outside her window. My favorite hung over her fireplace: children running on a beach in front of a choppy sea, and a small boy standing still behind them, his feet in the water, his head tilted up, a single stroke of thick white paint depicting the kite he is flying, high in the sky, almost out of view.

By the time we met, Ann’s lung condition had gotten so bad she could hardly walk across the room. She hadn’t painted in more than a year, not since her husband passed away. She told me that she hoped to paint one last picture before she died. She’d been thinking about it for a long time, she said, and showed me the photograph she’d taken years ago from the top of Mt. Katahdin in Maine.

One of the things we do in hospice is to help our patients set and accomplish end-of-life goals. Ann and I talked about what she would need in order to paint again. We brainstormed easel contraptions that might sit comfortably over her legs in her recliner. Her sister, who had moved in to take care of her, would work on finding all her old painting supplies.

I visited Ann a couple of days later. Her decline had been swift. She told me she was finally comfortable, breathing easily thanks to the right medications and a hospital bed, but she didn’t open her eyes when she spoke. Then we talked about the painting again, the one she’d hoped to create before she died.

She described the photograph to me, the rocky summit, and the iconic Knife’s Edge trail leading off to the distance. She recalled the day it was taken, how they’d hiked in the sweltering late August heat, and how the mosquitos had finally abated when she and her husband crossed the tree line. She now knew that she’d probably never paint that picture. She said she wished she had a little more time. But she didn’t mind too much, not really. “It’s good to have something left to look forward to,” she said.

Working individually with people in their homes allows me to offer a depth of care that was impossible in the hectic environment of the hospital. In hospice, we’re tasked with caring for the whole patient, including their physical, psychological, social, and spiritual needs, as well as readying their families and loved ones for loss. I’ve come to understand healing as bringing these sometimes-dissonant aspects of the self into harmony with each other, rather than treating each individual wound as a problem to be fixed.

I won’t pretend that there isn’t sadness in my job, though there’s less for me now that I’ve stopped secretly hoping my patients will live forever. Loss is sad, sometimes even traumatic, and grief is painful. We help our patients and families through all of this. But the dying process itself, which so many people are afraid of, is by no means inherently tragic. It can be as joyful and jovial as the life that came before it.

Swapping the hospital for dying people’s homes has given me new insight into living, and dying, well. It doesn’t require optimizing your health or finishing everything you’ve set out to do. Death is its own healer, and the best-lived lives often leave a few paintings undone.