Hospice Volunteer Training Ethical Issues

How should I respond when a patient’s family offers me gifts and gas money?

Is it okay to date my patient's unmarried caregiver?

Can I ask the family to only speak English when I’m around, so I won’t feel left out?

My patient wants me to help him commit suicide. He hates being alive in his condition. How do I handle this?

These are a few ethical questions that may concern hospice volunteers as they go about their duties of providing quality of life care for terminally ill patients. Perhaps you can think of many more. While training classes that certify hospice volunteers cover many topics, they don’t always cover the varied situations that can arise for someone playing the role of healthcare volunteer and friend.

The College of Nursing at Utah did a study that explores ethical issues hospice volunteers confront during their assignments with patients. These are the prominent themes resulting from interviews of hospice volunteers:

1) Dilemmas about gifts
2) Patient care and family concerns
3) Issues related to volunteer roles and boundaries
4) Issues surrounding suicide and hastening death

The study also concludes that hospice volunteer training should include more discussions after the initial training. This later training should include more ethical situations confronting volunteers and strategies for dealing with them.

You can read more here about this study of hospice volunteers and ethical issues.

Frances Shani Parker, Author
"Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes”
“Hospice and Nursing Homes Blog”

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.

Hospice and Nursing Homes Blog

Hispanic Elders Benefit from Architecture with Front Porches

I talk about the importance of a front porch in my book "Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes.” Baby Boomer Haven, an imaginary nursing home based on best practices of some, but not enough, nursing homes that already exist, has a great front porch. This is how a resident describes the front porch when she takes the reader on a tour:

“I love sitting in my rocking chair out here on the front porch surrounded by nature. It reminds me of when I used to sit on the porch getting my hair combed down South when I was a girl. That’s where I heard grownups tell stories about my family and African American history. The front porch is where I first grabbed a handle on life. In later years, that was where my own children learned life lessons and heard stories that were passed down through generations. Nowadays, other residents and I rock our chairs to discussions about everything imaginable.”

Did you grow up having a front porch or stoop where you could sit for hours interacting with and observing neighborhood happenings? Do you still have one? If you have had that experience, you’ll understand why the research I’m about to explain praises “positive front entrances” for elders in a low-income Hispanic neighborhood.

According to “Environmental Health Perspectives,” researchers at the University of Miami Miller School of Medicine theorized that Hispanic elders’ social, psychological, and physical functioning would be impacted by “architectural features of the built environment” (front porches or stoops) that promoted direct observations and interactions with the neighborhood. Studying a 403-block area in urban Miami, Florida for three years, they arrived at the following conclusions:

Elders living on blocks marked by low levels of positive front entrance features were 2.7 times as likely to have subsequent poor levels of physical functioning, compared with elders living on blocks with a greater number of positive front entrance features. The research supports what those of us who have had front porches suspected all along: “Architectural features that facilitate visual and social contacts may be a protective factor for elders’ physical functioning.”

Excuse me while I go sit on the porch.

Frances Shani Parker, Author
"Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes”
“Hospice and Nursing Homes Blog”

Hospice Team Meetings and Technology

Hospice services are a team effort. By law, hospice agencies must deliver services using an interdisciplinary approach to patient care. As technology evolves and becomes more accessible, it can play a larger and more beneficial role in the implementation of hospice teamwork. How effectively have hospice teams been using technology to address challenges faced at interdisciplinary team meetings?

In a study reported in the “International Journal of Electronic Healthcare,” 190 representatives of hospice agencies were surveyed by phone regarding the level of technology use in hospice Interdisciplinary Team (IDT) meetings. Survey results indicate that hospice team meetings often do not incorporate technology, even when it could be beneficial. Over half of the participants did not include computers at meetings, even though computers could help them access patient records and medication lists for designing care plans. Technology can better serve hospice agencies if they use it more to enhance the social and product functions of the group process at their team meetings.

You can read more here about this study on technology and hospice team meetings.

Frances Shani Parker, Author
"Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes”
“Hospice and Nursing Homes Blog”