Less than six months. That’s how long Robert Carey-Hogue was expected to live when he sought the services of Kansas City Hospice and Palliative Care in the fall of 2008.
Carey-Hogue, 38 at the time, had been HIV-positive for 15 years, asymptomatic thanks to antiretroviral medications that kept the virus in check. But when UnitedHealthcare, his insurer, decided to stop paying for his treatment (despite continuing to collect his $3,600 monthly premium), Carey-Hogue had to do without the medication. He and his partner, Rand Souden, simply couldn’t afford the medications that cost thousands of dollars each month, even after mortgaging their home.
It didn’t take long for Carey-Hogue’s viral load — the number of HIV copies in the blood — to skyrocket and his immune system’s T-cell count to plummet. He had developed AIDS, the disease that renders the body defenseless to even the most benign pathogens.
Carey-Hogue also could not afford his prescription morphine, which he was on to blunt the intense pain resulting from HIV-related nerve damage. Quitting cold turkey sent him into severe withdrawal.
To top it off, Carey-Hogue had developed dementia.
“We were in a really dark place,” Souden recounted in an interview with NASW News. “I was taking care of [Carey-Hogue] all by myself, with no help at all, and didn’t know where to turn.”
On the advice of a nun living in the convent adjacent to their home, Souden looked into Kansas City Hospice and Palliative Care, which accepts patients regardless of their ability to pay. That’s when he and Carey-Hogue met Peggy Green, a social worker with Kansas City Hospice and Palliative Care’s palliative home care program. She immediately got involved in Carey-Hogue’s care.
“His situation was very dire,” Green remembered. “When Robert first came to us he was so ill we truly thought he did not have much time. We discussed hospice care but he wasn’t ready to give up; he’s definitely a fighter.”
Carey-Hogue elected to receive palliative home care, which differs from hospice care in that while both focus on relieving the symptoms of chronic illness, palliative care can include life-sustaining treatment.
As Carey-Hogue’s social worker, Green went to work on what she saw as the two most pressing issues in his life: his impending homelessness — Carey-Hogue and Souden’s home was going into foreclosure — and getting him back on antiretrovirals.
“She was a godsend,” Souden exclaimed. “She went so far above and beyond! She wore a lot of hats. She acted as therapist, she liaised with the medical team and government agencies. She’s very well-connected, and knew exactly who to contact for whatever we needed.”
Green was tenacious in getting Carey-Hogue’s insurance provider to resume coverage of his medications at least until he could be enrolled in Medicaid and the Ryan White HIV/AIDS Program. Carey-Hogue and Souden had no idea he was eligible.
Carey-Hogue responded so well to the attention and care he received in the hands of Kansas City Hospice and Palliative Care that his condition improved to the point that death was no longer imminent. He now enjoys a quality of life unimaginable just two and a half years ago.
“Palliative care is for people like me who want to continue to fight even though they are in declining health,” Carey-Hogue told NASW News. “It’s amazing. My palliative care team basically sees to it that at all times I am comfortable and not in any pain regularly.”
Souden added: “And, not just for Robert. The palliative care team is there for the family caregiver too. When we first met, Peggy immediately recognized the deterioration taking care of Robert all by myself had done to me and said, ‘We’ve got to get you help.’”
Hospice Team Manager Jan Magee, who’s also a social worker, says the hospice or palliative care social worker on the interdisciplinary team fills the unique role of meeting the psychosocial needs of both patients and their families. “Once we understand the whole person, we can better meet their needs in the dying process.”
Palliative care social workers juggle a lot of responsibilities, often for multiple patients at a time. On any given day, for example, they may be helping a patient transition from one care setting to another; connecting them with resources in the community like arranging for attendant care or finding an appropriate funeral home; or helping to tie up unfinished business or last wishes.
“One thing’s for sure, it’s never routine,” said Magee, whose feelings of helplessness while she watched her husband succumb to Hodgkin’s disease many years ago informed her career choice.
“I was so alone, so young,” she said. “I had very little support from the doctors and nurses who cared for my husband. There was no discussion prior to his death about planning. ... I kept thinking there’s got to be a different way, there’s got to be more support for people going through these experiences.”
At NASW’s annual practice conference, held last month in Boston, NASW Executive Director Elizabeth J. Clark told attendees, “We aren’t very good as a culture in dealing with personal loss and grief.”
In addition, health care professionals do not enter the medical field prepared to cope with death, says Clark, who has a background in oncology social work and is contributing to a forthcoming textbook on palliative social work by Oxford University Press.
The textbook, the first of its kind in social work, is edited by Shirley Otis-Green and Terry Altilio.
Kansas City Hospice and Palliative Care and similar organizations are working to change the climate — to reorient the medical field to embrace care for the chronically ill that focuses on quality and comfort rather than prolonging life indefinitely.
That’s why Kansas City Hospice and Palliative Care was awarded the American Hospital Association’s 2010 Circle of Life Award, co-sponsored by NASW. (Otis-Green represents NASW on the selection committee for the awards.)
The award — which honors programs that expand the reach of safe, timely, equitable, effective, efficient and patient-centered palliative and end-of-life care — also went to Snohomish County Palliative Partnership in Everett, Wash., and the Department of Veterans Affairs New York/New Jersey Healthcare Network.
“A patient needing palliative or end-of-life care faces difficult challenges that must be addressed with skill and unique expertise,” said AHA President and CEO Rich Umbdenstock in a press release. “These winners exemplify what the health care field is striving for: compassionate care for patients and families at all times. These innovative programs serve as guiding lights for others on this path.”
“It truly is an honor to be recognized with the Circle of Life award,” said Magee. “Usually, this award goes to a specific program, but all of Kansas City Hospice & Palliative Care’s programs were honored, and we’re very, very proud.”
Those programs include home, assisted living facility and nursing home hospice care; palliative home health care, its Kansas City Hospice House; Carousel pediatric and perinatal care program; and Passages community counseling program.
Said Magee: “In this business there is a tremendous amount of burnout. There’s always more to give, and indentifying and maintaining boundaries is a huge issue for anyone working with hospice or palliative care.”
Self-care is critical. NASW’s policy in Social Work Speaks (8th Ed.) states that “Professional self-care is an essential underpinning to best practice in the profession of social work. ... Promoting the practice of professional self-care in social work explicitly acknowledges the challenging and often overwhelming nature of our work.”
Magee said having the emotional support of other members of the care team and family is important. So is having a life outside of work.
Easier said than done, however. Even though Green is no longer officially involved in Carey-Hogue’s care, she continues to check in on him every now and then to make sure he’s doing OK, and she makes herself available at all hours.
When Carey-Hogue suddenly developed an infection last December, Souden phoned Green first thing.
“She was at the house within half an hour, went to the hospital with us and stayed there until he was checked into a room — well after her workday was done,” said Souden.
“‘Nine to five, I’m out of here, we’ll deal with it tomorrow’ — that’s not her mentality,” Carey-Hogue said.
“It truly is a privilege to work in this field,” said Green. “I had no idea how much I would be moved by people and their stories and their lives and their pending deaths until I got involved in palliative care. I have received so much more from these people than I’ve ever given. It’s indescribable. I can’t even articulate it.”
Get more information about the Circle of Life Awards.