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Hospice Girl Friday | ‘Getting Too Close to a Terminal Patient’

Published: January 31, 2014


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.

A few months ago I went into the hospice on a Wednesday to sit vigil for a patient whose elderly mother wanted to ensure her daughter did not die alone. When I arrived I ran into the hospice chaplain who told me about a new patient in room four.

“She is a young woman and is delightful to talk to. If you have some time, you might like to go say hello,” he said. I stopped by her room before I left, but did not knock because I heard a number of different voices talking and laughing inside. Instead I made a mental note to see her in two days when I came back for my regular shift.

I found her name on the census. Elizabeth Goode-Hart. Pulmonary Fibrosis. Thirty years old. I asked her nurse about the diagnosis since I had never heard of it before.

“Is it caused by anything specific?” I asked.

“No, it’s a crap-shoot-disease as you would say. She enjoys company, but I was with her yesterday when she got into a dry-coughing jag that was very difficult to stop. Please be mindful of that if you go see her.”

Since hospice care focuses on symptom management and comfort, I rarely see patients in distress other than when they first arrive. My first reaction to the nurse’s warning was fear that I might weaken with panic if Miss Goode-Hart started to cough or choke so I busied myself with the other patients until I felt confident that I would know how to appropriately respond. When I have moments of doubt like that I take a quick inventory of other patients I may have helped and remind myself that I am experienced and emotionally strong enough to know what to do.

I made my way over to room four and knocked on the door as I walked in. The patient was sitting up in bed wearing brown pajama bottoms and matching t-shirt under a pink chenille robe. A laptop computer was open on the bed in front of her next to two cell phones. I was struck by how young and energetic she looked.

I introduced myself as I always do: “Hello, Miss Goode-Hart, I’m Devra, the Friday morning volunteer.”

“Hi, please call me Lizzie. Everyone else does.”

“Okay, Lizzie. It is nice to meet you,” I said, looking away as I said her first name out loud. I was uncomfortable being on a first-name basis with her. My friend Victor, a former hospice nurse, taught me to call the patients by their last names to avoid getting emotionally involved while caring for them. “Getting too close can cloud our judgment,” he said. “I call it ‘compassionate distance.’” I wondered how I would manage calling Miss Goode-Hart by her first name.

“You look like you’re busy here in your home office so I won’t stay long,” I said. “Just want to make sure you’re comfortable and ask if there is anything I can get for you right now.”

“I’m fine,” Lizzie said. “I am trying to stay connected to people and get some work done. So many people are calling and emailing and texting so there are a lot of interruptions.”

“Oh, well I don’t want to be another one,” I said, taking a step back toward the door.

“Please do not go,” Lizzie said. “I like being connected to people so I am not complaining.” Her eyes were clear and bright, but her breathing in between words was slightly labored. She picked up the oxygen mask on her bedside table and took a couple of deep breaths into it before continuing.

“I am so grateful to you for volunteering,” Lizzie said. “We do not do enough for each other in our society.” She looked like she had more to say but she started to cough. I was relieved when she stopped after three or four dry hacks and immediately started to talk again. “As I was saying, we do not do enough. Some people do nothing and others just get by doing the minimum….” She started to cough again before she could finish her sentence. This time she coughed eight or nine times.

“Should I get the nurse?” I asked as soon as she stopped.

“No, I’m okay. I just need a second,” Lizzie said, closing her eyes.

“Does talking cause you to cough? Maybe we should stop chatting,” I offered.

She nodded then said, “Talking makes me cough, but if I use my last breath sharing with you like this I will die a happy woman, so please don’t go yet.”

I stayed with Lizzie for only a few more minutes. She started to thank me again for volunteering. I interrupted her and insisted that I would do most of the talking so she could rest.

“You’re sweet to thank me,” I said, “but truth is, it is an honor to be a volunteer here. I bet all of the other volunteers would say the same thing.”

“Why?”

“Because we get to work with hospice doctors and nurses who are the most compassionate, dedicated people I’ve ever known.” Lizzie nodded in agreement. “And, because we get to meet people like you.”

A long coughing jag took over before I could tell her how inspiring she was for knowing how she wanted to live until she took her last breath. I quickly left her to get a nurse and did not see Lizzie again before my shift ended.

Driving home I thought about Lizzie. She is the kind of person I would want to be friends with so why let my rule of ‘compassionate distance’ stop me from getting to know her now? Lizzie’s openness about her fate and her eagerness to connect to people is refreshing, and I am strong enough to witness–and if possible to help–her live while she is dying.

Previous post: When a Child is Terminally Ill Next post: Coming Soon!

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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