Monday, March 23, 2009

Who Wants a Hospice-Palliative Care Volunteer?

Everybody wants a hospice-palliative care volunteer, right? Wrong. I never assumed that patients would always be glad to have me as their hospice volunteer, and it’s a good thing I didn’t. One day I met a patient who made it clear I wasn’t wanted. My book Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes explains what happened. This is how the initial conversation went with a hospice patient named Lelia:

“When I first met her, she was sitting alone in a dimly lit room she shared with three other women. Her blouse was unbuttoned, exposing one sagging brown breast and a wormlike scar where her other breast had been removed. Depression embraced her like a close friend. A wary look in her eyes told me she had no place for a hospice volunteer on her agenda.

“What’s that, you say you a hospice volunteer, and you want to come see me every week? No, I don’t need to see you. I have enough visitors,” Lelia complained shortly after I arrived. Her tone reeked with annoyance at my intrusive presence in her gated world.

“Lelia, I came by to see you today because I hoped we could get to know each other better. I was thinking that I might be able to help you in some way, maybe with a problem or something.”

“No, I got enough help. Like I said, I don’t need to see you. I don’t need to see nobody. I just want to be left alone.”

© Frances Shani Parker

So much for making me feel welcomed. Fortunately, I was able to win Lelia over and have a very interesting relationship with her. Her story is one of my favorites.

What does research say about dying people wanting hospice-palliative care volunteers? According to the “The American Journal of Hospice Palliative Care" research at Mount Allison University yielded the following results using 100 adults:

Participants were asked to imagine they were terminally ill and told about services volunteers could provide. Finally, they were asked if they would want a volunteer and why. Eighty-nine participants wanted a volunteer, mostly for general support and lack of nearby family. What about the other thirty-five? Some sounded just like my patient Lelia by saying they didn’t need help. Other reasons included being private people.

In the total group, sixty-five participants were aware of the volunteer program. Among those who were not aware, 89% expected their family doctor to inform them of the program. These results indicate a need for more patient information regarding the availability of hospice-palliative care volunteers.

Frances Shani Parker, Author
Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes is available in paperback and e-book editions in America and other countries at online and offline booksellers.


  1. It is the responsibility of the professionals on the team to (not just the MD...the RN and MSW specifically) to instruct family and patients about the availability of volunteer services. This is a medicare requirement. This should be done not just on the admission assessment but anytime there is a change. With the new COPS in effect 12/14/08 there must be an update to the POC every 14 days. This is when volunteers services should be revisted. This is not the responsibility of the MD. My guess is the 89% expecting their family MD to inform them of the program do not understand it is those managing the program who understand it. The family MD makes the referral.

  2. Thank you for addressing that medicare requirement. This reiterates the need for more information from those who are responsible for keeping patients and caregivers informed about available hospice services.