More and more people are caring for their dying loved ones at home. A New Orleans nonprofit is showing them how.
Liz Dunnebacke is not dying, but at a recent end-of-life care workshop in New Orleans, she pretended to be.
Dunnebacke was still lying on a folding table that served as a bed, complaining that her legs hurt. Nurse Ana Kanellos, rolling up two small white towels, showed him how to elevate his ankles to ease the pain.
“Mommy’s legs are still swollen? Pull them up,” Kanellos said.
About 20 New Orleans residents listened attentively, eager to learn more about how to care for their loved ones at home as they near the end of their lives. Alix Vargas, one participant, said she was afraid of dying. But about three years ago, the death of a close cousin led her to participate in group writing workshops, helping her come to terms with her grief and overcome her fear.
“I feel very drawn to this work,” she said. “It’s definitely a knowledge that I wanted to gain and expand my mind in that way. And it’s also something that we’re all going to encounter in our lives.”
The workshop made her think of a neighbor whose mother has dementia.
“I immediately thought, ‘OK, there’s someone in my immediate orbit who’s going through this,'” Vargas recalled. “Here is a practical way to implement mutual aid. »
Demand for home health care, including home palliative care, has skyrocketed since the start of the Covid pandemic, as has the number of family caregivers. An estimated 63 million people in the United States — nearly a quarter of all U.S. adults — have provided care in the past year to another person with a health condition or disability, usually another adult, according to a 2024 survey by AARP and the National Alliance for Caregiving. Over the past ten years, around 20 million more people have worked as caregivers.
With nearly one in five Americans expected to be 65 or older by 2030, health care experts predict that the demand for in-home caregivers will continue to rise. Online resources for end-of-life care are widely available, but hands-on training to prepare people to become caregivers is not, and it can be expensive. Yet untrained family members who become caregivers take on nursing and medical tasks.
Donald Trump promised more support for caregivers during his 2024 campaign, including pledging to create new tax credits for those caring for family members. He approved a bill reintroduced in Congress this year that would allow family caregivers to qualify for tax credits of up to $5,000, but the legislation has not moved forward.
Meanwhile, expected Medicaid cuts under Republicans’ One Big Beautiful Bill Act, which President Trump signed in July, could prompt states seeking to offset their added costs to reconsider their participation in optional Medicaid programs, such as one that helps pay for in-home hospice care. That would threaten to make dying at home even more unaffordable for low-income families, advocates and researchers said.
Advocates like Osha Towers are trying to help caregivers navigate uncertainty. Towers leads LGBTQ+ engagement at Compassion & Choices, a national organization focused on improving end-of-life care, preparation and education.
“It’s definitely very scary, but what we know we can do now is be able to just introduce ourselves to all the individuals to make sure they know what they need to prepare for,” Towers said.
In New Orleans, a nonprofit called Wake, which focuses on supporting family caregivers providing end-of-life and death care, is one of the organizations trying to fill the knowledge gap. Wake organized the free three-day September workshop during which Dunnebacke, the group’s founder, pretended to be a dying patient. These workshops aim to prepare participants for what to expect when loved ones die and how to care for them, even without the help of an expensive professional. Full-time home care is rare.
“You don’t need any special training to do this job,” Dunnebacke said. “To achieve this you just need some skills and support. »
In some ways, the evolution of end-of-life care in the United States over the past century has come full circle. It was not until the 1960s that people moved from dying at home to dying in hospitals, nursing homes, and hospice facilities.
Such institutions can provide immediate advanced medical support and palliative care to patients, but they often lack the human connection that home care provides, said Laurie Dietrich, Wake’s program manager.
Today, more and more people want to die at home, among their families, but with the support and technology that modern medical facilities offer.
Over the past decade, death doulas – who serve the non-medical and emotional needs of the dying and their loved ones – have gained popularity to help guide people through the dying process, helping to fill this gap. Douglas Simpson, executive director of the International Association of End-of-Life Doulas, said his organization recognizes the lack of resources for funeral care and therefore trains doulas to become community educators. He hopes doulas can be especially helpful in rural communities and lead conversations about death.
“Making people more open, more comfortable talking about death and considering their mortality,” Simpson said.
Training for death doulas varies by organizer, but Simpson’s group focuses on teaching participants about the dying process, how to maintain the dying person’s autonomy and how to be mindful of how they show up to a job and care for themselves while caring for others.
Some people who attended Wake’s workshop had also participated in some form of death doula training in the past. After Nicole Washington’s mother was murdered in 2023, she considered becoming a death doula. But she thought doula training, which can cost $800 to $3,000, was clinical and impersonal, unlike Wake’s community-based approach.
“I feel very energized, very exhilarated,” Washington said. “It’s also really nice to be in a space with people who experience death and grief.”
Ochsner Health’s Susan Nelson, who has worked as a geriatrician for 25 years, said there is a need for more specialized programs to train and prepare caregivers, like Wake’s.
“Learning caregiving skills is probably, unfortunately, a trial by fire,” Nelson said.
Compassion & Choices is another organization that attempts to educate caregivers. Towers said the group’s training ranges from advanced planning to acting as a health care proxy to caring for the dying.
“We’ve come to a place in our country where we are so far removed from end-of-life care that we weren’t before,” Towers said.
Towers said the movement to care for people at home and provide community support has its roots in the AIDS epidemic, when some doctors refused to treat AIDS patients. Friends, particularly in the lesbian community, began coordinating food deliveries, visits, bedside vigils, and even contact circles, where patients could receive comforting forms of touch, such as hand holding, to relieve pain and feelings of isolation.
“I like to think of it as a model of what we can start doing again now, which is again just prioritizing community care,” Towers said.
This article was produced in collaboration with Verite News. Verite News reporter Christiana Botic contributed to this report.
KFF Health News is a national newsroom that produces in-depth journalism on health issues and is one of KFF’s primary operating programs, an independent source of health policy research, polling and journalism. Learn more about KFF.
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