Virtual Mentor. January 2002, Volume 4, Number 1.
End-of-Life Care Ethics
A hospice volunteer relates his first experience of visiting and befriending a dying patient.
I first saw the notice for hospice volunteer training about the time I retired—about the time I started giving more thought to my own longevity. I had already signed my Living Will and Durable Power of Attorney for Healthcare. The idea of hospice care as an alternative to being hooked up to a machine appealed to me. Although I wasn't sure what was expected of a hospice volunteer, it seemed like a worthwhile undertaking.
I had retired from substance abuse counseling which had been rewarding for the deep connections I often established with clients. Working with people who knew they were dying seemed to offer at least as much potential for such connections. But, this was not a decision I would make lightly despite the immediate appeal; I tore out the notice and filed it away in a folder of possibilities for part time employment or volunteer work.
I saw additional notices for hospice volunteer training from time to time, but it was never convenient to attend. When I did have more free time, I only thought about it on weekends or after hours.
The day didn't come until 3 years later that I called the hospice team office to inquire about training. A new series of training sessions was set to begin in a couple weeks. I signed up. I had an initial feeling of exhilaration; I couldn't wait for the training sessions to start.
By the time the training started, I was beginning to doubt my qualifications, but the more I learned about hospice, and the more people in the organization I met, the more I knew it was right for me. I felt like I was entering an exciting new phase of my life. Then I couldn't wait to be assigned my first patient.
When the call came the exhilaration returned, followed by my doubts as I prepared to telephone and arrange my first visit. After all, who was I to present myself to some poor dying soul and his grieving family? What did I have to offer? The volunteer coordinator mentioned the patient enjoyed playing dominoes; I didn't even do that.
I'll call my patient Fred not because that was his name but because it wasn't; hospice patients' identities are confidential. He did remind me of a Fred that I had known a long time before but even revealing the reasons for that would tend to compromise his identity.
Although Fred's wife was not a hospice patient, she also required twenty-four hour care. Their daughter lived nearby but was employed full time, and I was unable to contact her that day. I made arrangements with the evening attendant to visit on Saturday morning hoping the daughter might also show up.
The son-in-law came to the door Saturday morning and I went into the family room to meet Fred, his wife, their daughter, and the Saturday attendant. At this point I violated my first hospice rule by forgetting to wash my hands on arrival. Fred sat on the sofa—eyes closed, not speaking. I talked briefly to the family. The daughter told me, "He was alert and playing dominoes a couple days ago but he's just sleeping now." I went over to him and tried unsuccessfully to introduce myself. How can I relate to someone who doesn't talk? I admitted that I had just completed my volunteer training and that Fred was my first patient. The family had questions for me. I responded with more questions. Hospice volunteers don't give advice. We engaged in awkward small talk until I excused myself saying that I would come back a couple times the next week and see if Fred was willing and able to talk with me then. This wasn't exactly what I had hoped it would be like. I bought some dominoes and arranged to have a friend teach me how too play. I only wanted to play well enough not to aggravate Fred. I figured he'd enjoy beating me; I knew my friend would.
Tuesday morning Fred was more alert; his medication had been adjusted. He responded to my questions about what kind of work he had done, how long he'd been married, how many children they'd had, and that sort of thing. Although his answers weren't always accurate, it was still some kind of communication. He asked a few questions too. Was I a doctor? A nurse? He told me I could come back and take over at 4 that afternoon when everybody else was gone—which they wouldn't be. I told him I would bring dominoes the next time I came. It was still not what I was looking for, but I had made a little progress. At least, I felt like I had introduced myself, and I was more comfortable with the smaller audience.
I called Thursday morning to see if that would be a good day to visit. The attendant told me he'd been angry. I told her I wasn't afraid of his anger. I'd done some of my best counseling work with angry people. I was excited that he was angry and hoped it would be a way for us to start talking. Forget dominoes.
By now, Fred was in a hospital bed in the family room and the sides were up. His wrists were bandaged where he had tried to cut them. He tried to talk a little but was incoherent. The only thing I understood was when he yelled, "Pull me up!" once when he was choking. Still I had the sense that he knew who I was. Later he reached for my hand and I held his for about 20 minutes without speaking until he fell asleep. I could hear the rattle in his chest. I found myself praying for him to die, then retracting the prayer both because I don't believe in praying for God's direct intervention and when Fred would die wasn't really a volunteer's business no matter what I thought or felt. There must be a hospice rule about that.
I planned to visit Monday but before I did, I got word from hospice that Fred had died Friday. I was glad for him. I figured he had been ready when he tried to cut his wrists and that at last his suffering was over. I was glad for him but I felt empty.
I decided I'd go to his funeral, but he had already been buried early Monday morning. The next best thing would be to visit with his daughter or the daytime attendant who I imagined would still be there with Fred's widow. I had had more contact with the daytime attendant. I had only met her twice but she had been helpful and friendly both times and I knew she'd cared about Fred. Her shift ended at 3, so I waited until Tuesday to go by the house. When I did, the garage door was down and the van wasn't in the driveway anymore. The house looked different; it looked empty. I drove on.
F.R. Burdett lives, writes, and walks the seawall in Galveston, an island off Texas, in the Gulf of Mexico.
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