Volunteering with death

Although nothing is certain, my experience as a hospice patient volunteer has given me at least some idea of what lies ahead for me as I enter the last years of my life.

I have spent more than twenty years as a hospice volunteer, working with hospices in three states. Over that time I have connected with a couple of hundred patients, people of all backgrounds—rich, poor, white, Asian, African American, veterans from four wars, single, married—people dying of all manner of ailments, including cancer, of course, as well as heart disease, emphysema, multiple sclerosis, Lou Gehrig’s disease, and simply old age. I’ve heard some fascinating stories from patients: an Anglo woman in her early 30s from Kenya, a World War 1 vet in his 90s whose father was killed in the 1906 San Francisco earthquake, an animal trapper, a blind recent immigrant who spoke only Spanish, a Filipino who was with McArthur at Corregidor.

My first introduction to hospice was more than thirty years ago when my father was dying of metastatic kidney cancer. After some medical tests because of a sudden weight loss, the oncologist who ordered the tests told my father that cancer from four years before had recurred and that his condition was terminal. Not knowing what else to do, my mom and I signed my dad up for hospice care. A few months after he died, I saw a notice from a local hospice seeking patient volunteers. I went through a two-day training session and soon was assigned my first patient, a fellow whom I will call Bill, who was in his late 70s and dying of cancer. Things went well from the beginning. First, the hospice nurse who was his case manager accompanied me when I went to meet him so that I did not have to do that by myself, which might have been difficult since I knew so little then about my role and how to make the initial connection. Now after many years of volunteering, that step is easy: I call to introduce myself and then make a short visit to meet the patient and family, talk about how I might work with them, and plan a subsequent visit. After that, they know who I am, and I am no longer a stranger.

I was lucky to have Bill as my first patient. He had been a long-time volunteer for Lions Club, so he understood my role with hospice. He was social and easy to talk with. He liked jokes, and part of our connection was sharing our favorite ones. In fact, he told me one that I still tell. Bill’s wife Mary had dementia, so in addition to the burden of his own illness, he had the responsibility to take care of her. I had not been around anyone with dementia before, so it was an opportunity to begin to learn about interacting with people with that disease. Often, I would stay with Mary and talk with her while Bill’s daughter would take him for medical appointments.

With Bill, I also learned an important lesson about hospice volunteering: you can only give a limited about of time and you cannot “fix” anything. That point came across as Bill was nearing the end. I had to go out of town on business for a few days. When I told Bill, he said, “You can’t leave me!” I did, though. That experience taught me that as a volunteer, I can only do so much and that I have my own life. At the same time, I also have come to see that I can make a difference with the time I am able to give.

It took me a while to understand that an important role I would play as a volunteer is as a stranger. While that may sound odd, being a stranger is important in a couple of ways. First, when I interact with patients, I know them as they are now, not when they were healthy. Also, I know about their past only what they tell me. Often friends and family members are uncomfortable visiting a patient because the patient’s illness or something in the past affects their perspective. They don’t know what to say. I was in that position when my father was in his final months. As a stranger, however, I can talk about whatever they want without feeling self-conscious. Further, patients occasionally confide in me about things they are uncomfortable discussing with their family. Also, as a stranger I am a fresh audience for patients’ stories about their past, stories that family and friends often have heard so many times that their ears are tired and patience worn thin. Telling one’s stories is important to many people in their last weeks, and a volunteer can be a receptive audience.

Hospice has changed over the years since I began as a volunteer. The hospices with which I volunteered in San Francisco and in Klamath Falls, Oregon, were non-profit organizations. I was surprised to find that when I moved to Arizona nine years ago almost all of the hospices were private, for-profit corporations. Although, I volunteered for a few months with a for-profit hospice I became increasingly uncomfortable with the fact that end-of-life care is viewed as a business opportunity for “entrepreneurs” and investors. To me, that is another example of the monetization of almost every aspect of our lives. And not only private corporations are getting in the game. I have recently learned about “death doulas.” They are similar to the better known birth doulas who offer physical and emotional support as well as information to clients before and after childbirth – for a fee. Death doulas, also known as end-of-life coaches or death midwives, offer similar services related to the dying process, again for a fee. There is no required certification for death doulas, but there are (of course!) on-line classes and death doula associations offering training and certification. While there might be a role in some cases for such people, both corporate hospices and “professional” death doulas represent the intrusion of crass commercialism into an intimate human experience. It seems that as a people we will do anything to turn a buck.

Finally, when I tell people I am a hospice patient volunteer, I get some interesting responses. Almost always people say that it must be hard dealing with dying people. For me that is not true at all. Being a patient volunteer with hospice is easy for me. I tell them that it is much easier than volunteering in an elementary school classroom.

One more thing: volunteering with hospice has shown me that rich or poor, saint or sinner, we are all equal in that final struggle.