Hospice Girl Friday | ‘These Four Walls’

A 41-year-old woman in 101 holds tight to a good book to help her escape the hospice room she may never get to leave.

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Devra Lee Fishman’s dear friend and college roommate, Leslie, died from breast cancer one month shy of her 46th birthday after a four-year battle with the disease. Being with Leslie and her family at the end of her life inspired Devra to help care for others who are terminally ill. Each week, she documents her experiences volunteering at her local hospice in her blog, Hospice Girl Friday.

book featured

When I arrive for my weekly hospice shift I always take a few minutes to review the list of patients, their diagnoses, and any notes made by other volunteers. Then I walk around and introduce myself to the patients and ask if there is any way I can help.

Electra Goodwin* was in room 101. Age 41. Metastasized breast cancer. I knocked on her open door and started talking as I walked in.

“Good afternoon, Miss Goodwin. I’m Devra, the Friday afternoon volunteer.”

She was sitting in a chair next to the bed with her back to the door, slowly unloading the contents of a small black tote bag onto the table in front of her. I watched her pull out a bottle of lavender scented hand lotion, an unread newspaper, and a pen. Miss Goodwin didn’t turn around so I repeated myself, not wanting to surprise or frighten her by simply appearing in her line of sight.

As I approached I noticed an oxygen tube stretching between her and a wall socket behind the bed, about 6 feet away from where she was sitting. When I got closer I heard the low burble of the oxygen that was secured around the pastel floral silk scarf on Miss Goodwin’s head. The open end of the tube rested just under her nose.

I read in the patient notes that she had a 3-year-old son, which explained the stuffed gray rabbit and open package of toddler Pull-Ups that were on the dresser. I wondered how soon after giving birth had Miss Goodwin been diagnosed; how long did she get to enjoy being a mother before her life started to end?

I moved in front of Miss Goodwin and squatted down to talk to her, resting my hand on hers. She was petite, but not frail, and beautiful. Her face looked like it was carved from an exotic piece of polished mahogany.

“How are you doing today?” I asked, doing a quick physical check. Her skin was smooth and warm to the touch. Her eyes clear and focused. All good. But she heaved and gulped for air before she spoke each word of her response.

“(GULP) I … (GULP) am … (GULP) fine … (GULP), thank … (GULP) you.”

I had to stifle my impulse to take a deep breath for her as I watched her struggle to speak, and I hoped she wouldn’t feel my pulse quicken through my hand, which was still resting on hers. Even though I did not want to engage her in a conversation because she seemed to have difficulty speaking, I had to ask, “Is there anything I can get for you?”

She paused, nodded, and, still gulping before each word she replied, “Yes … please. Do … you … have … any … books?”

“Yes, we do,” I responded. “Any particular kind?”

“Some … sort … of … psychological … thriller … that … I … can … get … lost … in.”

“Let me see what I can find,” I said, standing up. “I’ll be back in few minutes.”

The hospice in-patient unit has an open-plan living room with a sitting area, flat-screen television, two large round dining tables with chairs and, in one corner, several shelves full of books, games, DVDs, CDs, and toys donated by previous patients and their families.

I walked over and scanned the book titles. Among the collection were autobiographies, bibles, even a Chicken Soup for the Soul, but not the kind of book Miss Goodwin described. Then I remembered the library in the nursing home, which was located in the same building as the hospice. That’s where I found Devil in the White City by Erik Larsen, a murder mystery page-turner I read and loved a few years earlier. I was excited that I found the perfect book for Miss Goodwin and rushed back to tell her.

“Hi again,” I said as I knocked and walked into Miss Goodwin’s room. She was still in her chair, but she stood up when she saw me.

“Sorry I took so long, but I found a book for you,” I said, holding up Devil in the White City for her to see. I felt like a prizefighter with a trophy. “I had to walk over to the library in the nursing home. That’s where I found it.”

She took the book from me, turning it over to read the back cover. I kept talking, probably so she wouldn’t have to. “It’s a psychological thriller based on a true story about the Chicago World’s Fair, sometime in the late 1800s. I couldn’t put it down. I think you’ll really like it.”

Finally, she spoke, gulping the air. “How … far … away … is … the …library?”

“Oh, it’s just down the hall on the other side of the building. Not too far.”

“May … I … return … the … book … and … look … for … another … when … I’m … done?”

My smile froze for a split second as I looked past Miss Goodwin to the wall above her bed. I scrambled for a response and tried to recover, but I was too late. Miss Goodwin looked down at the oxygen tube that was under her nose and slowly followed it to where it tethered her to the wall. She turned back and looked at me, tears brimming in her eyes and mine, and then she crumpled into her chair, hugging the book.

“Let me see what we can do,” I said, trying to sound cheerful. “We might have a portable oxygen tank.” But, as I backed out of the room I could tell she wasn’t really listening. She had just realized the same thing I did—that she was never going to leave her room. Instead of helping Miss Goodwin take her mind off of her situation, I had just caused her to be unable to think of anything else.

I went back to check on Miss Goodwin toward the end of my shift and to tell her I was still trying to locate a portable oxygen tank. I wanted to leave her with some kind of hope, but she was asleep in her chair, still hugging the book.

My first thought when I drove home that night was one of gratitude—I am healthy and can go anywhere and do anything I want to, unlike Miss Goodwin. Then I was struck with sadness and shame that I was celebrating my freedom instead of feeling compassion. Holding these mixed emotions at the same time is never easy, and I struggle with it every week as I transition between my everyday life and the hospice unit.


*Names have been changed to protect patient privacy


Previous post: Why I Became a Hospice Volunteer Next post: Receiving Thanks

Bonus: For more on end of life care from a physician’s perspective, see How Doctors Die from our March/April 2013 issue.

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