For terminally ill patients who lack secure housing or loved ones to care for them, hospice is typically not an option.
Organizations called comfort care homes have been working to fill this gap. These are generally nonprofit residential facilities that will give patients a place to stay while they receive hospice care. These organizations first emerged in the 1980s during the AIDS epidemic to serve patients who had ben rejected by their families.
While some comfort care homes do have paid staff, many are volunteer-run, according to Karen Cassidy, founder and executive director of Hildegard House in Kentucky.
Cassidy is a nurse practitioner, board-certified in palliative care, who also worked for 30 years as a professor of nursing. During her clinical practice in a hospital, she recognized that the end-of-life care needs of some patient populations were not being met.
“So many people that needed to access hospice care that couldn’t get it. It’s a gap in the continuum of care. For homeless people, the hospital would give them taxi money and send them back to a shelter or just out to the street,” Cassidy told Hospice News. “For other people that didn’t have a family that could provide them with care 24/7, they would just put them on an ambulance and send them home. I wanted to take them all home with me.”
This led Cassidy and a nursing colleague to visit the comfort care home Francis House in Syracuse, New York, to learn more about their care and business models. The upstate New York region has a higher concentration of these organizations than much of the country.
The visit inspired them to establish Hildegard House in Louisville, Kentucky, area. Named for St. Hildegard of Bingen, the facility is a former convent that admitted its first resident in 2016 after undergoing about a year of renovations.
Like most comfort care homes, Hildegard House is supported entirely by philanthropy and receives no reimbursement from any type of insurance, including Medicare or Medicaid. All staff members are volunteers, with the exception of one certified nursing assistant who works the night shift.
Hildegard House itself does not provide medical care. Rather, it offers a place where hospices can come in to see patients they otherwise would not be able to reach.
“These are often the forgotten people,” Cassidy said. “They’re always the most difficult patients to place from a hospital’s point of view because they don’t have a home; or they live at home alone, and it’s not safe for them to return.”
Adults 50 and older accounted for nearly half of the nation’s homeless population in 2016, a rise from 11% in 1990 that is largely attributed to an aging baby boomer generation, the National Institute on Aging (NIA) reported.
The financial and other burdens on the family can also be a deterrent. Research has shown that patients who are faced with end-of-life decisions are less likely to choose hospice unless they have a network of friends or family who can serve as home caregivers.
Also, the depletion of a family’s financial resources is a greater predictor of aggressive treatment at the end of life than patient preferences or demographic factors, a 2016 study concluded.
“There’s a huge caregiving crisis. It’s a huge stressor for families now,” Cassidy said. “When hospice started in the 80s, families weren’t as mobile. There wasn’t so much of this ‘sandwich generation’ where people are taking care of both children and older family members.”
Annually, nearly 53 million people assist family members or other loved ones in maintaining health, quality of life, and independence due to aging, disability, or a chronic health condition, according to the Administration for Community Living (ACL), a component of the U.S. Department of Human Services.
The expense alone can be a struggle. Roughly three-quarters of caregivers spend upwards of $7,200 annually for associated costs, AARP reported. For many caregivers, this amounts to 26% of their income.
Moreover, nearly 20% of unpaid caregivers are elderly, frail, or chronically ill themselves, according to the U.S. Centers for Disease Control & Prevention.
Support for these caregivers is severely lacking in the United States, which threatens to make caring for sick or dying loved ones unsustainable for many families. ACL recently unveiled a National Strategy to Support FamilyCaregivers to help address their needs, but the development and implementation of particular interventions may take several years.
The average length of stay for Hildegard House residents is three-and-a-half weeks, and the facility currently has three patient beds. But that number is soon to expand. The organization recently received a $100,000 grant to purchase a nearby house that will enable them to take in four additional residents.
Approximately 80 comfort care homes are in operation in the United States, according to Cassidy. Nationwide, these facilities offer a total of 192 beds and serve roughly 2,550 residents annually, the Omega Home Network, a comfort care home association, reported.
As the U.S. population continues to age, the availability of comfort care homes will likely prove to be one more area in which demand exceeds supply. Expanding awareness and financial support for these organizations would go a long way towards improving access, Cassidy indicated.
“We don’t get very much publicity. There are not enough providers, and there’s even a shortage of hospice nurses. Some kind of funding for us would be great, some kind of recognition,” Cassidy told Hospice News. “We’re trying to fill a big gap in the continuum.”
In addition to connecting hospices with underserved patients, comfort care homes may to some extent be able to help attract more workers to the hospice space or improve understanding of the benefit among other clinicians.
A 2018 study published in the American Journal of Hospice and Palliative Care examined the results of a pilot program in which 18 college students in various clinical disciplines volunteered to care for the dying in a comfort care home.
Researchers concluded that the experience gave students a greater degree of exposure to end-of-life care than they otherwise would have received.
“Community-run residential homes for the dying offer a unique opportunity for skills training in end-of-life care,” researchers indicated. “The opportunity to serve as a caregiver for the dying improved students’ confidence and ability to provide empathic patient- and family-centered end-of-life care to hospice patients in their final days.”