More People Are Caring for Dying Loved Ones at Home. A New Orleans Nonprofit Is Showing Them How.
Liz Dunnebacke isn’t dying, but during a recent end-of-life care workshop in New Orleans, she took on the role of a patient. Lying still atop a folding table dressed as a bed, she complained about her aching legs. Registered nurse Ana Kanellos demonstrated how to elevate her ankles using rolled towels to alleviate the discomfort.
“Mom’s legs are always swollen? Raise ’em up,” Kanellos advised, as about 20 local residents listened intently, eager to learn how to care for loved ones nearing the end of life. Attendee Alix Vargas shared her journey from fear to acceptance of death, sparked by her cousin’s passing three years ago. She began attending group writing workshops to embrace her grief.
“I’m feeling very called towards this work,” Vargas expressed. “It’s definitely knowledge that I wanted to obtain and expand my mind in that way. And this is also something that we’re all going to encounter in our lives.”
The workshop prompted Vargas to think of a neighbor whose mother has dementia. “I was immediately thinking, ‘OK, there’s someone in my immediate orbit that is experiencing this,’” she recalled. “Here’s a practical way to put the mutual aid in use.”
Since the onset of the COVID-19 pandemic, the demand for home health care, including hospice services, has surged. According to a 2024 survey by AARP and the National Alliance for Caregiving, an estimated 63 million Americans—nearly a quarter of all adults—provided care to someone with a medical condition or disability in the past year. Over the last decade, the number of caregivers has increased by about 20 million.
With nearly 1 in 5 Americans expected to be 65 or older by 2030, health care experts predict a continued rise in the need for at-home caregivers. While online resources for end-of-life care are plentiful, hands-on training is scarce and often costly. Untrained family members are increasingly taking on nursing and medical tasks.
During his 2024 campaign, Donald Trump promised more support for caregivers, including tax credits of up to $5,000 for family caregivers. However, the proposed legislation has yet to advance. Meanwhile, anticipated Medicaid cuts from the One Big Beautiful Bill Act, signed by Trump in July, could lead states to reconsider participation in optional Medicaid programs that fund at-home hospice care, making it even less affordable for low-income families.
Advocates like Osha Towers are working to help caregivers navigate these challenges. Towers leads LGBTQ+ engagement at Compassion & Choices, a national organization focused on improving end-of-life care and education. “It is certainly very scary, but what we know we can do right now is be able to just show up for all individuals to make sure that they know what they need to be prepared for,” Towers said.
In New Orleans, a nonprofit called Wake aims to support family caregivers providing end-of-life care. The organization hosted a free, three-day workshop in September, where Dunnebacke, the founder, role-played as a dying patient. These workshops prepare attendees for the realities of caring for loved ones at home, even without professional help. “You don’t have to have any special training to do this work,” Dunnebacke emphasized. “You just need some skills and some supports to make that happen.”
Over the past century, the landscape of end-of-life care in the U.S. has evolved significantly. It wasn’t until the 1960s that the trend shifted from dying at home to institutional settings like hospitals and nursing homes. While these facilities offer immediate medical support, they often lack the personal connection that home care provides, according to Laurie Dietrich, Wake’s programs manager.
Today, many people prefer to die at home, surrounded by family, while still benefiting from modern medical support. The rise of death doulas—who assist with the emotional and non-medical needs of the dying—has become increasingly popular. Douglas Simpson, executive director of the International End of Life Doula Association, highlights the organization’s efforts to train doulas as community educators, especially in rural areas, to foster conversations about death.
“Making people more open, more comfortable about talking about death and considering their mortality,” Simpson noted. Training for death doulas varies, but his organization emphasizes understanding the dying process and maintaining the autonomy of the individual.
Some attendees of Wake’s workshop had previously undergone death doula training. After losing her mother in 2023, Nicole Washington considered becoming a doula but found the training too clinical compared to Wake’s community-focused approach. “I feel very energized, very uplifted,” Washington said. “It’s also really nice to be in a space with people who are familiar with death and grief.”
Ochsner Health’s Susan Nelson, a geriatrician with 25 years of experience, stresses the need for specialized caregiver training programs like those offered by Wake. “Learning caregiving skills is probably, unfortunately, more trial by fire,” she remarked.
Compassion & Choices also provides education for caregivers, covering topics from advanced planning to acting as a health care proxy. Towers noted, “We’ve gone to a place in our country where we’re so removed from end-of-life care in a way that we didn’t used to be.”
Towers traces the movement for home care back to the AIDS epidemic, when many doctors refused to treat AIDS patients. Friends, particularly in the lesbian community, organized support networks, providing food, visits, and comforting touch to ease pain and isolation.
“I like to look at it as a blueprint for what we can get back to doing now, which is again just prioritizing community care,” Towers concluded.
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 about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.
USE OUR CONTENT
This story can be republished for free (details).
Liz Dunnebacke isn’t dying, but during a recent end-of-life care workshop in New Orleans, she took on the role of a patient. Lying still atop a folding table dressed as a bed, she complained about her aching legs. Registered nurse Ana Kanellos demonstrated how to elevate her ankles using rolled towels to alleviate the discomfort.
“Mom’s legs are always swollen? Raise ’em up,” Kanellos advised, as about 20 local residents listened intently, eager to learn how to care for loved ones nearing the end of life. Attendee Alix Vargas shared her journey from fear to acceptance of death, sparked by her cousin’s passing three years ago. She began attending group writing workshops to embrace her grief.
“I’m feeling very called towards this work,” Vargas expressed. “It’s definitely knowledge that I wanted to obtain and expand my mind in that way. And this is also something that we’re all going to encounter in our lives.”
The workshop prompted Vargas to think of a neighbor whose mother has dementia. “I was immediately thinking, ‘OK, there’s someone in my immediate orbit that is experiencing this,’” she recalled. “Here’s a practical way to put the mutual aid in use.”
Since the onset of the COVID-19 pandemic, the demand for home health care, including hospice services, has surged. According to a 2024 survey by AARP and the National Alliance for Caregiving, an estimated 63 million Americans—nearly a quarter of all adults—provided care to someone with a medical condition or disability in the past year. Over the last decade, the number of caregivers has increased by about 20 million.
With nearly 1 in 5 Americans expected to be 65 or older by 2030, health care experts predict a continued rise in the need for at-home caregivers. While online resources for end-of-life care are plentiful, hands-on training is scarce and often costly. Untrained family members are increasingly taking on nursing and medical tasks.
During his 2024 campaign, Donald Trump promised more support for caregivers, including tax credits of up to $5,000 for family caregivers. However, the proposed legislation has yet to advance. Meanwhile, anticipated Medicaid cuts from the One Big Beautiful Bill Act, signed by Trump in July, could lead states to reconsider participation in optional Medicaid programs that fund at-home hospice care, making it even less affordable for low-income families.
Advocates like Osha Towers are working to help caregivers navigate these challenges. Towers leads LGBTQ+ engagement at Compassion & Choices, a national organization focused on improving end-of-life care and education. “It is certainly very scary, but what we know we can do right now is be able to just show up for all individuals to make sure that they know what they need to be prepared for,” Towers said.
In New Orleans, a nonprofit called Wake aims to support family caregivers providing end-of-life care. The organization hosted a free, three-day workshop in September, where Dunnebacke, the founder, role-played as a dying patient. These workshops prepare attendees for the realities of caring for loved ones at home, even without professional help. “You don’t have to have any special training to do this work,” Dunnebacke emphasized. “You just need some skills and some supports to make that happen.”
Over the past century, the landscape of end-of-life care in the U.S. has evolved significantly. It wasn’t until the 1960s that the trend shifted from dying at home to institutional settings like hospitals and nursing homes. While these facilities offer immediate medical support, they often lack the personal connection that home care provides, according to Laurie Dietrich, Wake’s programs manager.
Today, many people prefer to die at home, surrounded by family, while still benefiting from modern medical support. The rise of death doulas—who assist with the emotional and non-medical needs of the dying—has become increasingly popular. Douglas Simpson, executive director of the International End of Life Doula Association, highlights the organization’s efforts to train doulas as community educators, especially in rural areas, to foster conversations about death.
“Making people more open, more comfortable about talking about death and considering their mortality,” Simpson noted. Training for death doulas varies, but his organization emphasizes understanding the dying process and maintaining the autonomy of the individual.
Some attendees of Wake’s workshop had previously undergone death doula training. After losing her mother in 2023, Nicole Washington considered becoming a doula but found the training too clinical compared to Wake’s community-focused approach. “I feel very energized, very uplifted,” Washington said. “It’s also really nice to be in a space with people who are familiar with death and grief.”
Ochsner Health’s Susan Nelson, a geriatrician with 25 years of experience, stresses the need for specialized caregiver training programs like those offered by Wake. “Learning caregiving skills is probably, unfortunately, more trial by fire,” she remarked.
Compassion & Choices also provides education for caregivers, covering topics from advanced planning to acting as a health care proxy. Towers noted, “We’ve gone to a place in our country where we’re so removed from end-of-life care in a way that we didn’t used to be.”
Towers traces the movement for home care back to the AIDS epidemic, when many doctors refused to treat AIDS patients. Friends, particularly in the lesbian community, organized support networks, providing food, visits, and comforting touch to ease pain and isolation.
“I like to look at it as a blueprint for what we can get back to doing now, which is again just prioritizing community care,” Towers concluded.
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 about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.
USE OUR CONTENT
This story can be republished for free (details).
