When Diane Button’s grandfather passed away at 85, he had a smile on his face and a sense of peace that made him want to learn his secret.
Being with him in the final hours of his death after seeing his life caring for others as a doctor inspired Button to earn a master’s degree in counseling and begin volunteering in palliative care programs. She went on to train as a “death doula,” wrote books on living well, and now teaches in the professional end-of-life doula certificate program at the University of Vermont’s Larner College of Medicine.
“It wasn’t so much about learning how to die as learning how to live well and ultimately how to die well,” Button said.
Button is one of a growing number of so-called “death doulas” who provide non-medical care and support to people who are dying. Similar to the dynamic between a midwife and a birth doula, a doctor or hospice caregiver would provide end-of-life medical care, while a death doula would provide emotional and spiritual support and assistance to the patient. , his family and his friends.
There are currently no licenses, no industry standards, and no insurance reimbursement for death doula services. Doulas can be volunteers or paid out of pocket.
Without licensing requirements, it is 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 1,350 members in 49 states (all except South Dakota) and 13 countries.
Karen Reppen, an end-of-life doula and board member of the National End-of-Life Doula Alliance, attributes the growth in awareness and numbers of doulas, in part, to COVID, when people were often dying alone, as well as the growth of the palliative care movement and the large number of people near death as baby boomers age.
“More people are willing to explore options beyond the hospital and what the medical system can provide,” Reppen said. “We don’t have multi-generational homes anymore, communities may not be as tight-knit as they once were, everyone is working – caregiving is a huge, huge challenge. Non-medical support is necessary to survive death with some grace.
“There is an incredible need for support when you are a caregiver and your loved one is dying. Whether it’s just walking the dog, getting groceries, taking a few minutes for yourself, getting help navigating medical information, there are so many reasons to have support. said Reppen.
“Caregivers are very tense. The need for compassionate and knowledgeable people to fill this space in our increasingly isolated society is so precious,” said Reppen. “So many people are traumatized and terrified of death. Even people with family and friends may need help. Truly, there is nothing we are all sure to share except the fact that we are going to die.
Robert Gramling, a palliative care physician and senior faculty partner in the University of Vermont’s doula program, agreed that the pandemic has created an opportunity to talk about death in a way society hasn’t before. .
“It can be terrifying to be sick. The COVID pandemic has highlighted that death is part of life. The tragedy of social distancing has sharpened our focus on the space of being alone and isolated. It has catapulted us into a public health crisis of loneliness and isolation. Our world is craving this,” Gramling said.
The University of Vermont program, which is online, is only a certificate program offered nationwide. It attracts people from all stages of life, from diverse backgrounds – social workers, chaplains, palliative care workers, family caregivers – all with a central desire to learn more about death and dying.
“There will be a tipping point where it becomes more accepted. I think with the pandemic, the world is valuing this idea of “I want to be known” more. I want to be worthy and accepted,” Gramling said. “We are bubbling towards a tipping point where talking about death becomes part of life. Our world is becoming more open.
“The role of doulas is to fill in the gaps whenever people feel alone or unheard. Anywhere during a critical illness, doulas can provide non-judgmental space,” Gramling said.
Doulas can help younger, healthy people with advance directives, hold wakes for the dying, or create story legacy projects to pass on to other generations.
Button said more doctors are referring patients to end-of-life doulas once medical needs can no longer be met.
“The time has come for doulas to emerge. The pandemic has opened up the conversation about death and agony. So many people have been impacted by it. The pandemic opened the door and gave them insight into mortality,” Button said.
“It’s an honor to be invited to the bedside of the dying,” Button said. “It’s moving. It is a deep work of the heart.
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