Hospice Girl Friday | ‘The Loner’

Sometimes just sitting with a patient is all the human contact they will allow.

Person standing alone in a lake with his back to the camera and holding a yellow umbrella

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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.

At the front desk of our hospice there is a notebook in which volunteers keep track of pertinent information about–and regarding interactions with–patients or their family members. These notes are part of the larger hospice files and allow us to catch up quickly on the current patients as we start our shifts. On a recent Friday morning I read about one patient who was described by the admitting nurse as ‘a bit of a loner.’ According to the notes, the patient in room 10 was an artist, had no local friends or family, and preferred to be left alone. Her name was Elaine Engle. Sixty-two years old. Jewish. Breast Cancer. Her 91-year-old mother who lived in New York City was listed as the emergency contact.

As I read about Miss Engle I glanced up and noticed her door was closed. The nurse must have seen me looking puzzled because she explained that we were honoring the patient’s request for privacy. “She’s sleeping and non-responsive, so if you go in there to check on her, don’t announce yourself or touch her. Try to be as unobtrusive as possible.”

Most of our patients have a spouse, a child, or a friend who stops by on a regular basis to visit and help make healthcare decisions. We expect that in the hospice. I started to wonder about who might be there for me since I have no children and my husband is much older than I am. If I outlive him, will I wind up alone like Miss Engle? The thought upset me so much that I avoided Miss Engle’s room until the very end of my shift.

When I went in she was so still and quiet that I had to watch for several seconds to make sure she was still alive. Her body was curled up facing away from the door, and she barely moved underneath the sheet as she breathed. I reported what I saw to the nurse who said, “She probably won’t be with us much longer.” Instead of feeling relief that Miss Engle’s suffering would soon come to an end, I felt sorry for her. Not just because she was alone, but also because she chose to go through life–and death–that way. I also felt a tiny pang for myself and hoped I would not wind up alone in a hospice like Miss Engle.

Two days later I received an email from my supervisor asking for volunteers to sit vigil with Miss Engle. The request came from the patient’s mother, who was unable to travel and wanted to make sure her daughter died with someone by her bedside–a Jewish tradition designed to ease the fear of uncertainty and the pain of separation for both the dying and the bereaved.

When I sit with dying patients at the hospice I like to interact with them somehow so they will feel a caring presence in the room. Miss Engle made it clear she did not want that, but her mother did, and I wondered if I could I satisfy both dying wishes at the same time. I tried to convince myself that I could not by coming up with several reasons why I should ignore the email: the long commute to and from the hospice; lunch plans I did not want to change; errands I wanted to run.

Eventually I realized these were all empty excuses designed to help me avoid thinking about my own end-of-life scenario. I thought about Miss Engle’s mother and how difficult it must be for her to lose her only child and not even have a chance to say goodbye. I responded to my supervisor’s email and asked to take a shift early the following morning.

When I arrived at the hospice Miss Engle’s nurse was coming out of room 10. She was all business. “The patient is resting comfortably,” the nurse said. “Please remember you’re here to be a presence for her mother. Don’t talk to or touch the patient. Feel free to read or watch television with the sound off if you’d like.”

While these instructions were counter to my training and instincts as a hospice volunteer, I obeyed. I sat facing away from Miss Engle after moving my chair away from her bedside. Occasionally I looked up from my book to check on her breathing and gauge her comfort level. The first time I felt an impulse to interact with Miss Engle I thought about how important it was to her to be left alone, and I reminded myself how important it was to me to carry out her wish. Then I finally realized that there was nothing sad about Miss Engle’s desire to be left alone. She was simply managing her death by defining her terms.

Since that day I have been thinking about what my terms would be. I wonder if I would want any of my friends or family members sitting vigil for me, or if I would like them not to bother, to continue living their own lives. I’m still not sure, but I have made a New Year’s resolution to figure that out and then communicate it to my friends and family so they won’t have to bear the burden of deciding for me. I may not be certain about whether I want them around when I die, but I know I want–and am grateful–to share my life with them now.

Previous post: The Power of Compassion Next post: Discussing Your Advanced Medical Directive

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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