Hospice Foundation of America (HFA) has developed a new program to improve caregiver education and awareness, inspired in part by a hospice clinician’s end-of-life experience and mission to improve quality.
The new, 68-minute program, “From Caregiver to Patient: Hospice Nurse Allyson’s Final 39 Days,” includes caregiver education, a panel discussion and the documentary “A Butterfly Has Been Released” by TGBeyond. Advance care planning discussion materials are available as well.
The new education initiative is designed to better facilitate conversations about the end of life, dying and death and improve these experiences for professionals, patients and families, according to HFA President and CEO Amy Tucci.
“I hope that it generates discussion among hospice professionals about any number of topics including living funerals, the intrinsic value of hospice and hospice teamwork, professional boundaries, pain management and patient autonomy,” Tucci told Hospice News in an email. “For the public, we want to show them that dying on your own terms … is possible with hospice. We want them to start thinking about how they want to die and know that hospice care is an option.”
The new caregiving program’s curriculum contains supportive materials for community or clinical settings, Tucci stated. The program offers continuing education credits for nurses, social workers and other interdisciplinary professionals through individual or group viewing.
The program’s panel discussion explores three major topics:
- Educating hospice interdisciplinary teams on ways to facilitate meaning-making, storytelling and legacy-building among families
- Strengthening goal-concordant care delivery around pain and symptom management, ethical considerations and patient autonomy and dignity
- Emphasizing the importance of individualized ritual and the person-centered nature of grief
Kenneth Doka, senior vice president for grief programs at HFA, is among the new program’s discussion panelists. The panel also includes perspectives from a hospice social worker, nurse and executive director.
The documentary included in the program follows the end-of-life journey of Allyson Z., a hospice nurse who provided care to patients and their families in Atlanta for more than 20 years. She was diagnosed with an aggressive terminal brain cancer and had the last 39 days of her life documented by TGBeyond. The nurse’s full name has not been disclosed due to privacy concerns.
The documentary included her perspective as a clinician and patient, and insights from family, friends and professional health care colleagues. Experiences included a living funeral, a green burial and turning a kitchen table into an educational classroom to discuss end-of-life options. The film illustrates ways to honor self-expression and meaning near death and improve goal-concordant care.
A main goal of the new caregiver education program and the documentary is to empower choice and improve awareness, according to Barry Koch and Jason Zamer, co-founders of TGBeyond. The organization was founded in 2018 to increase death literacy and to help normalize end-of-life discussions. TGBeyond’s projects are centered around expanding education and entertainment opportunities related to the end of life and death.
“A person can have more choice and control, but what we see is the default response of ignoring death until it comes at you,” Zamer told Hospice News. “It’s learned helplessness. We want people to understand [that] they can take agency if they want. Our hope is that you can take inspiration [to] face your death, not in the complete lockdown of fear. We’re doing what Allyson asked us, which was to help people.”
Through TGBeyond, Koch and Zamer developed a grief strategy dubbed as the “5 Step Journey,” which focuses on bereavement concepts of acknowledgement, arrangement, honoring, rearrangement and living. The goal is to help people to better understand end-of-life care options and death resources, which can result in reduced stress and family conflict and save both time and money, according to Koch and Zamer.
Having the documentary featured as part of a new continuing education program also available to the community could go a long way toward improved outcomes, Koch indicated. Families often lack information about the full scope of financial and logistical details, as well as burial, memorial and legacy-building options available — an issue that has resulted in complicated grief journeys, he said.
“We’re helping people who may not have been through it to understand that there can be a long arc or a long tail to the dying experience,” Koch said. “We’ve built a continuing education program around it and really hope to get it out to lots of hospices, hospitals and community groups. We call it ‘deaducation’ and ‘deadutainment.’ By having these conversations and being more dedicated and death literate, you can avoid family stress and conflict, because wishes are made known.”
The new caregiving program is among other public and professional educational initiatives from HFA. The foundation received funding eight years ago for the PBS documentary “Being Mortal,” which was viewed at clinical and community death education events across more than 1,000 locations nationwide. HFA also piloted a film project recently unveiled in California, “Caregiver: A Love Story,” which included screenings alongside a continuing education program for clinicians.
Storytelling can be an impactful avenue when it comes to inspiring positive changes in hospice awareness and workforce development, according to Tucci. Hospice clinicians who have engaged in the new caregiver program and seen the documentary have thus far “deeply appreciated it,” she said. Clinicians’ feedback has included reports of feeling more validated in their decision to choose hospice as a career path, she stated.
“We’ve learned that film can be a powerful way to introduce topics that people wouldn’t otherwise discuss,” Tucci said. “Educating clinicians improves care quality, care delivery, and it’s obviously an important part of professional development and even self-care. Educating the public about advance care planning, hospice and grief opens the door to hospice care and improves grief literacy.”