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When Diane Button’s grandfather died at 85, he had a smile on his face and a sense of peace that made her want to learn his secret.
Being with him in the final hours of his death after watching his life caring for others as a doctor inspired Button to get a master’s degree in counseling and start volunteering with hospice programs. She then trained as a ‘death doula,’ wrote books about living well, and now teaches at the end-of-life doula professional certificate program at the Larner College of Medicine at the University of Vermont.
“It wasn’t so much to learn about dying as it was to learn about living well and ultimately dying well,” Button said.
Button is part of a growing number of so-called ‘death doulas’ who provide nonmedical care and support for people who are dying. Similar to the dynamic between a midwife and a birth doula, a physician or hospice caregiver would provide medical care at the end of life, while a death doula provides emotional and spiritual support and help to the patient and the family and friends.
There’s currently no licensing, no industry standards and no insurance reimbursement for death doula services. Doulas can be volunteers or get paid out of pocket.
Without licensing requirements, it’s difficult to track the number of people providing end-of-life support doula services. But since its inception in 2017, the National End-of-Life Doula Alliance has grown to 1,350 members in 49 states (all except South Dakota) and 13 countries.
Karen Reppen, an end-of-life doula and a member of the board of the National End-of-Life Doula Alliance, attributes the growth in awareness and numbers of doulas, in part, to COVID, when people often died alone, as well as the growth of the hospice movement and the sheer numbers of people closer to dying as baby boomers age.
“More people are willing to explore options beyond the hospital and what the medical system can provide,” Reppen said. “We no longer have multigenerational homes, communities may not be as tight knit as they once were, everyone is working – caregiving is a huge, huge challenge. Nonmedical support is needed to survive death with some grace.”
“There’s incredible need for support when you’re a caregiver and your loved one is dying. Whether it’s to simply walk the dog, go grocery shopping, get a few minutes to yourself, get help in navigating the medical information – there’s so many reasons to have some support,” Reppen said.
“Caregivers are very strained. The need for compassionate, skilled people to hold that space in our progressively isolating society is so valuable,” Reppen said. “So many people are traumatized and terrified of death. Even people with family and friends surrounding them may need help. Really, there is no other thing that we’re all guaranteed to share than the fact that we’re going to die.”
Robert Gramling, a palliative care physician and a core faculty partner for the University of Vermont doula program, agreed that the pandemic created an opportunity to talk about death in a way society hadn’t before.
“It can be terrifying to be sick. The COVID pandemic brought into sharp relief that death is part of life. The tragedy of social distancing has sharpened our focus on the space of being alone and isolated. It catapulted us into a public health crisis of loneliness and isolation. Our world is thirsty for this,” said Gramling.
The program at University of Vermont, which is online, is just one certificate program offered around the country. It attracts people from all stages of life, from diverse backgrounds – social workers, chaplains, hospice workers, family caregivers – all with the central desire to learn about death and dying.
“There will be a tipping point where it becomes more accepted. I think with the pandemic the world is valuing more this idea of ‘I want to be known. I want to be dignified and accepted,’” Gramling said. “We’re bubbling toward a tipping point that talking about death becomes part of life. Our world is becoming more open.”
“The doulas’ role is to fill the gaps any time people are feeling lonely or not heard. Anywhere along the course of a serious illness doulas can provide space with nonjudgment,” Gramling said.
Doulas can help younger, healthy people with advance directives, sit vigils for the dying or create legacy projects of stories to pass down to other generations.
Button said more doctors are referring patients to end-of-life doulas once medical needs can’t be met anymore.
“The time has come for doulas to emerge. The pandemic opened up the conversation about death and dying. So many people were impacted by it. The pandemic opened the door a crack and gave them a glimpse of mortality,” Button said.
“It’s an honor to be invited to the bedside of the dying,” Button said. “It’s emotional. It’s deep work of the heart.”
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