Public misconceptions about the dying process may have reaching effects on hospice utilization. Developing ties to death doulas could help bridge the gap between patients and hospice providers as they continue to seek ways to improve access to care.
A large proportion of adults in the United States have a limited understanding of hospice care. Nearly 40% of survey respondents in a nationwide study indicated that they did not know that hospice care is designed for patients who are expected to live six months or less, according to research from MorseLife Hospice and Palliative Care.
With COVID-19 showing no signs of slowing down, providers have been challenged in communicating the value of hospice from a distance. The pandemic has painted an isolated picture of serious illness and death, placing a spotlight on a growing need to bust common myths and misperceptions around hospice care. Working with providers such as death doulas can help hospices to ensure patients and their families receive an additional avenue of support during their final days.
“In this space of being a doula, I’ve found out much more about how and why people do and don’t get hospice care,” said Merilynne Rush, an end of life doula trainer through The Dying Year, during the Doulagivers International Summit. “I think hospice needs us now. It was different back when hospice first became more systemized.”
An end-of-life doula (or EOLD) is a non-medical support provider trained in caring for someone physically, emotionally and spiritually during the process of death. Their specific practices focus on facilitating conversations regarding the dying process, including advance care planning and discussions around hospice election.
The number of trained end-of-life doulas (EOLDs) has been growing across the country, with some hospices increasingly coordinating efforts to engage with providers of these services. Not included under the scope of the hospice benefit, providers stand to benefit from offering a complimentary death doula service to patients and their families.
According to Rush, who co-founded the National End-of-Life Doula Alliance (NEDA), hospices could benefit from developing partnerships with death doulas as an expanded service offering for patients and their families facing the end of life.
“We learn from one another. Death is one of our greatest teachers about life, if we could just pay attention to it bringing us together and the support system that we need to be there in all different facets. People do not understand what hospice does or does not do,” said Suzanne O’Brien, founder of Doulagivers International and a former hospice and oncology nurse, during the summit. “Unfortunately, our medical system is struggling and fragmented. At the end of life we have one opportunity to have that go well — we can’t go back and do it again. It’s so important that we step forward and do everything we can to make it happen.”