“Health care professionals regularly grapple with ethical issues at end of life and many receive professional education in ethics. Hospice volunteers, however, often receive only brief training in ethics, and that is largely limited to confidentiality and fiduciary relationships (such as accepting gifts, personal/professional boundaries.)”
Berry, Patricia, and Sally Planalp, “Ethical Issues for Hospice Volunteers ,”
American Journal of Hospice & Palliative Medicine , 25(6): 458-62.
Researchers Berry and Planalp interviewed experienced hospice volunteers to understand the ethical issues confronting them in their work with patients and caregivers. Topics that arose frequently were receiving gifts, patient care and family concerns, volunteer role and boundaries, and suicide or hastening death . Wrapped around many of the dilemmas was the hybrid role of the volunteer—not a professional, not a friend.
Many volunteers report the uncomfortable middle ground of their hybrid role when offered
GIFTS , sometimes substantial, by the patient or family-- gifts that would likely not be offered to professionals and would not need to be refused by friends. The volunteer must refuse the gift but in a way that doesn’t offend the giver. So, what is a gift? A slice of cake and coffee during a visit? The whole cake to take home? What if the cake was a gift to the patient but the patient can’t eat it? Flowers from the patient’s garden? A potted plant for the holidays? A gift card to a restaurant? Does it matter?
Well, yes it does matter. Ethics tend to be codified into a system of rules that are typically adopted by a group of people to govern the conduct of members of that group. Therefore, defining what is ethical is not an individual exercise. In the case of the gift, Duke HomeCare &
Hospice has established such rules and codified them as Gifts and Courtesies Guidelines to cover this issue. “Yes” to food and flowers, “No” to cash or cash equivalents.
Volunteers also struggle with the limits of their position when they had CONCERNS ABOUT
THE CARE GIVEN THE PATIENT BY THE HOSPICE TEAM OR THE FAMILY . Again, neither professional nor friend the volunteer advocates for the patient by leveraging all the relationships to work for the patient’s welfare. Our core values of teamwork and safety combined with respect and compassion may help the volunteer work through the problem of guests exhausting the patient, or distressing symptoms between nurse visits. At the very least, prompt visit reporting and checking in with the Volunteer Supervisor or the clinical / social work team can lead to improvements in care.

This issue overlaps concerns that the volunteer interviewees felt about their ROLES AND
BOUNDARIES . What do you do when the caregiver clearly needs more of your time than the limits you agreed to? Or the patient needs to be lifted to the commode when the caregiver is delayed returning home? Or a visitor makes threatening comments or pockets the patient’s medications? At what point does flexibility become wishy-washiness? Or asking for help become an imposition?
And the fourth ethical concern volunteers expressed was conversation with the patient about
ASSISTED SUICIDE OR HASTENING DEATH . Volunteers were not concerned that they were being asked to assist in a suicide; they were concerned that empathetic listening might be construed by the patient as encouragement. Do you respect the patient’s fear, pain, and intelligence by allowing him or her to vent, or do you shut down the conversation? Do you appeal to your values or the patient’s / family’s values if they are in conflict?
Fortunately, on these four issues the volunteer interviewees felt well-supported by their volunteer coordinator and other members of the hospice staff. One of the advantages of an interdisciplinary team is that it really is a team. At DHCH we have the support of our staff and DHCH policies to help make decisions in the field that not only feel right but are right. While an ethical problem may be new and scary to you, it has probably already been experienced by another hospice staffer or volunteer, and you have the benefit of that experience—if you ask.
We address these issues in our volunteer training but if you encounter any of these situations please call Carolyn or the team working with your patient to talk about the best way to handle each unique situation. We would like to schedule a round table discussion to focus on best practices related how to handle these issues. If you have questions or ideas to move the conversation about Ethics and the Duke Hospice Volunteer along, please let us know. Everyone benefits.
Please contact Carolyn to give your input on this topic.