Hospice Girl Friday | Why I Became a Hospice Volunteer

I wasn't entirely sure what hospice was or how it worked until I cared for a terminally ill friend and learned the importance of peace, comfort, and dignity in the dying process.

Hospice volunteer caring for a female patient lying in bed

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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.

Hospice volunteer caring for a female patient lying in bed
Photo courtesy Shutterstock. © Dragon Images

“You’re so brave.”

“I could never do what you do.”

“I don’t know how you do it. You’re my hero.”

These are just some of the comments I hear when I tell my friends that I am a hospice volunteer.

I don’t feel brave or like I am doing something—anything—extraordinary. I’m embarrassed to admit that my stomach flip-flops every time I walk through the hospice doors to start my weekly shift because I am convinced that I will be found out as an imposter, unqualified to be around people who are ill and know that they are at the end of their lives. I am afraid that I will say or do the wrong thing and make patients or their family members uncomfortable, which is the direct opposite of my intentions. I doubt true heroes feel those emotions. But, greater than my fear of failure is a sense of being compelled—the same way I am compelled to breathe or write—to try to make a difference in the lives of people who are aware of their impending death, and are often afraid or unwilling to accept it.

I was inspired to become a hospice volunteer by my friend Leslie. She was diagnosed with stage 4 breast cancer in 2001, just after she moved back east from Los Angeles and had settled into a charming, quiet village on the Hudson River with her husband and 10-year-old daughter.

Knowing that the odds were not in her favor did not stop Leslie from fighting. She believed that if she could just stay alive long enough, some smart person would break the code and put an end to breast cancer once and for all.

“This is the best time to have cancer,” Leslie would say, “because researchers are this close to a cure.” So for four years Leslie pursued surgeries and treatments to hold back the cancer as it spread into her chest wall, brain and, eventually, throughout her body. Leslie succumbed to the disease a few weeks before her 46th birthday.

About a month before that, I drove up from my home in Virginia to stay with Leslie for several days while her husband attended graduate school classes. I was surprised to see how much she had deteriorated since my previous visit and for the first time I wondered if she was going to stay alive long enough to benefit from that elusive cure. Her skin was waxy and had a yellow cast. The left side of her body stopped working (the cancer in her brain came back after bouts of radiation) and her vision was diminished.

On my first day there I took Leslie to a doctor’s appointment that was meant to be a routine pre-chemo check-up. Instead, the doctor told Leslie that her cancer was no longer responding to the chemotherapy and that there were no more treatments available to try. Leslie was always stronger than me; the one who took on any challenge with a bright-side attitude and sense of humor, but the ride home was quiet with each of us in our own thoughts. I remember thinking that I was not qualified to handle the situation and considered going home, but then quickly decided I would not let my fear get in the way of being with Leslie at such a critical time.

I don’t know if her doctor recommended hospice care but when we got home that day I did, even though I wasn’t entirely sure what hospice was or how it worked. I only knew that hospice was for people who were sick and dying … people for whom there are no medical cures.

Leslie told me she was not interested. She argued that she was not dying and a few days later found another doctor to give her more chemo. The side effects made her sicker and it didn’t take long before her symptoms were out of control. Finally Leslie’s husband made the decision to put her into hospice.

Leslie spent the last five days of her life being cared for by a team of compassionate doctors, nurses, social workers and grief counselors who managed her symptoms and kept her comfortable as her body transitioned. They were patient, kind, and caring to Leslie and took time to answer questions and explain the dying process to those of us who were sitting vigil. Once Leslie was gone they generously shared hugs and sweet words of comfort. I am convinced they were all hiding angel wings underneath their scrubs.

Leslie and I shared all of our major life experiences since the day we met as freshman roommates at Syracuse University and it was an honor to be with her—and her family—as she died. Leslie gave me an opportunity to provide unconditional, loving strength and support when she needed it most and the hospice professionals inspired me to continue to at least try to provide some sort of comfort to others.

I became a hospice volunteer the year after Leslie died.

Next post: These Four Walls

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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