Comfort care homes build bridges to hospice for underserved patients

For terminally ill patients who don’t have safe housing or relatives to care for them, hospice is usually not an option.

Organizations called comfort care homes have worked to fill this gap. These are usually non-profit residential facilities that provide patients with a place to stay while they receive palliative care. These organizations first emerged in the 1980s during the AIDS epidemic to serve patients who had been rejected by their families.

While some comfort care homes have paid staff, many are run by volunteers, according to Karen Cassidy, founder and executive director of Hildegard House in Kentucky.

Cassidy is a nurse practitioner, certified in palliative care, who has also worked for 30 years as a nursing teacher. During her clinical practice in a hospital, she recognized that the end-of-life care needs of certain patient populations were not being met.

“So many people who needed to access palliative care couldn’t. It’s a gap in the continuum of care. For the homeless, the hospital gave them money for taxis and sent them back to a shelter or just to the streets,” Cassidy told Hospice News. “For other people who didn’t have family who could provide 24/7 care, they would just put them in an ambulance and send them home. I wanted to take them all home with me.

This led Cassidy and a fellow nurse to visit the Francis House comfort care home 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 most of the country.

The visit inspired them to establish Hildegard House in the Louisville, Kentucky area. Named after Saint Hildegard of Bingen, the property is a former convent that welcomed its first resident in 2016 after undergoing around a year of renovations.

Like most comfort care homes, Hildegard House is funded 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 a qualified nursing assistant who works at night.

Hildegard House itself does not provide medical care. Rather, it provides a place where hospices can come to see patients they otherwise could not reach.

“They are often the forgotten people,” Cassidy said. “These are always the most difficult patients to place from a hospital’s point of view because they don’t have a home; or they live alone at home, and it’s not safe for them to come back.

Adults 50 and older made up nearly half of the nation’s homeless population in 2016, an increase from 11% in 1990 that’s largely attributed to an aging generation of baby boomers, according to the National Institute on Aging. (NIA) reported.

Financial and other burdens on the family can also be a deterrent. To research showed 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 caregivers at home.

Additionally, depletion of a family’s financial resources is a better predictor of aggressive end-of-life treatment than patient preferences or demographic factors, a 2016 study found. study concluded.

“There is a huge crisis in caregiving. It’s a huge stressor for families now,” Cassidy said. “When the hospice started in the 1980s, the families weren’t as mobile. There wasn’t so much of that “sandwich generation” where people take care of both children and older family members.

According to the Administration for Community Living (ACL), a component of the US Department of Human Services.

The expense alone can be a struggle. About three-quarters of caregivers spend more than $7,200 a year on associated costs, AARP reported. For many caregivers, this represents 26% of their income.

Closer 20% of unpaid caregivers are themselves elderly, frail or chronically ill, according to the US Centers for Disease Control & Prevention.

Support for these caregivers is sorely lacking in the United States, which threatens to make caring for sick or dying loved ones unsustainable for many families. The ACL recently unveiled a national caregiver support strategy to help meet their needs, but the development and implementation of specific interventions can take years.

The average length of stay for residents of Hildegard House is three and a half weeks and the facility currently has three patient beds. But that number will soon increase. The organization recently received a $100,000 grant to purchase a nearby house that will allow it to accommodate four additional residents.

About 80 comfort care homes are in operation in the United States, according to Cassidy. Nationally, these facilities offer a total of 192 beds and serve about 2,550 residents a year, reported the Omega Home Network, an association of comfort care homes.

As the US population continues to age, the availability of comfort care homes will likely prove to be one more area where demand exceeds supply. Increased awareness and financial support for these organizations would go a long way to improving access, Cassidy said.

“We don’t get a lot of publicity. There are not enough providers, and there is even a shortage of palliative care 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 to underserved patients, comfort care homes can, to some extent, help attract more workers to the palliative care space or improve other clinicians’ understanding of the benefits.

A 2018 study published in the American Journal of Hospice and Palliative Care examined the results of a pilot program in which 18 university students from various clinical disciplines volunteered to care for the dying in a comfort care home.

The researchers concluded that the experience gave the students a greater degree of exposure to end-of-life care than they otherwise would have received.

“Community-run residential homes for the dying provide a unique opportunity for professional training in end-of-life care,” the researchers said. “The opportunity to serve as a caregiver for the dying has enhanced students’ confidence and ability to provide patient and family-centered, empathetic end-of-life care to hospitalized patients in their final days.

Comments are closed.