Hospice Volunteers: Still Under the Radar

I recently submitted a case review for a patient I cared for as a hospice volunteer. The publisher asked me the following question that gave me pause: “Is it usual to have a hospice volunteer, or was that an exception?” I wondered how it was that a long-time RN and Case Manager had never heard about hospice volunteers. The concept of hospice has been around for a long time and volunteers have always been considered essential members of the hospice team.

The Evolution of Hospice

Most people have heard of hospice. The first modern version was established in London in 1967 by Dame Cicely Saunders. Her method was to have caregivers steadily dispense medication to terminally ill patients in order to stay ahead of their pain rather than waiting for the pain to return. In addition, she offered patients comfort care, ministering to their emotional and spiritual needs along with their physical symptoms, thus creating a new approach to helping the dying. These ideas, although revolutionary at the time, are central to the hospice philosophy.

An important aspect of the hospice philosophy is using an “interdisciplinary team” (IDT) to provide care. Typically, the team consists of a hospice physician, registered nurse, home health aide, social worker, chaplain, therapists, and a trained volunteer.

Hospice gained a foothold in the United States when in 1982 Congress authorized a hospice Medicare payment and brought financing to end-of-life hospice care. By the 1990’s, hospice use for the terminally ill became an accepted approach for end-of-life care. An important aspect of the hospice philosophy is using an “interdisciplinary team” (IDT) to provide care. Typically, the team consists of a hospice physician, registered nurse, home health aide, social worker, chaplain, therapists, and a trained volunteer. All work together to address the hospice patient's needs. Volunteer use of at least 5% of patient care hours was mandated from the inception and Federal law still requires it: Title 42 (CFR) § 418.78(e) L647: § Level of Activity: Volunteers must provide day to day administrative and/or direct patient care services in an amount that, at a minimum, equals 5% of the total patient care hours of all paid hospice employees and contract staff.

The Role of Hospice Volunteers

There are many roles and duties of a volunteer and these often include: patient companionship, writing letters to loved ones, documenting a life history, reading from a favorite book or the Bible, light housekeeping or cooking, running errands, caregiver respite, fundraising, administrative, and finally, providing family bereavement support for thirteen months after the patient’s death. Other volunteers bring skills to patients such as art or pet therapy or playing a musical instrument. One volunteer regularly prepares a tray of home-made mac and cheese for patients, family, and staff at a Vermont hospice home. “Up to twelve good souls are spending their final days in individual rooms and are able to invite family and friends to celebrate their lives and help them live well until they die.” (Roberta MacDonald)

I have been a volunteer for over fifteen years and my activities in addition to many of the ones listed, involved organizing a patient’s recipes, locating estranged loved ones for a final goodbye, arranging for an indigent patient to be buried in a National Cemetery, donating a patient’s player piano to a local theatre, and initiating an upgrade to handicap access so a young patient could go to her favorite restaurant. We always advocate for our patients and try to bring peace and presence to their final days.

Volunteers bring a level of compassion and love that is said to enhance the skills of the rest of the care team. Furthermore, they become the team’s “eyes and ears” because they visit patients and families more often than most other team members.

Hospice volunteers have diverse backgrounds and experiences, and include all age groups, ethnicities, and lifestyles. Many volunteers are retired from medical professions, some are students just starting out, or as in my case, a person who has experienced hospice care provided during the death of a loved one. Volunteers bring a level of compassion and love that is said to enhance the skills of the rest of the care team. Furthermore, they become the team’s “eyes and ears” because they visit patients and families more often than most other team members. Reporting any issues or misgivings to a superior about a patient’s condition or care is an important function and most hospice volunteers consider it an honor to give offer ourselves and our skills to provide comfort and closure to terminally ill patients and their families.

Hospice Volunteer Training

To maintain a high skill level, all volunteers have to go through an initial multi-week training, criminal background check, and proof of vaccinations. There are often monthly in-service meetings usually providing education in a variety of end-of-life subjects. Annually, there are HIPAA and sexual harassment trainings, TB testing, infection control reviews, and an evaluation of each volunteer. Some hospices have a robust and active volunteer program including the agency where I volunteer, Americare Hospice and Palliative Care in Mesa, AZ. americarehospice.org/ There are two volunteer coordinators who host in-service meetings where volunteers gather, share a light meal, and learn some aspect of volunteering or end-of-life care by watching a film, hearing a guest speaker, or sharing experiences.

Many volunteers are retired from medical professions, some are students just starting out, or as in my case, a person who has experienced hospice care provided during the death of a loved one. Volunteers bring a level of compassion and love that is said to enhance the skills of the rest of the care team.

In recent years, hospice has morphed from predominately small non-profit agencies, such as Americare, who provide outstanding care on a shoestring budget...to a growing number of national «for-profits» where making money is the primary goal. In 2019, The National Hospice and Palliative Care Organization reported that in 2017, 62% of active Medicare hospice providers were for-profit compared to 23% who were not-for-profit. It’s a trend that continues; since 2014, for-profits grew by more than 17% while nonprofits retracted by 3.9%. However, the 5% volunteer usage percentage has remained consistent. Most volunteers consider it an honor to give of ourselves and our skills to offer comfort and closure to terminally ill patients and their families.

Althea Halchuck, EJD, CT, BCPA is the founder of Ending Well! Patient Advocacy, LLC and is a Board-Certified Patient Advocate practicing in Arizona. Her advocacy focuses on end-of-life care and planning, aiming to help people have a “good death,” on their own terms. She earned an Executive Juris Doctor in health law in 2012, has been a Certified Thanatologist since 2015, a bedside hospice volunteer for 15 years, and a private practice family and civil mediator for over 17 years. She can be reached at althea@endingwellpatientadvocacy.comor visit her website at www.endingwellpatientadvocacy.com