National Association of Social Workers

Palliative Care Social Workers Give Hope, Relief

‘I Kept Thinking There’s Got to Be a Better Way, There’s Got to Be More Support’

Hospice and palliative care organizations want to reorient the medical field to focus on quality and comfort for the chronically ill, rather than prolonging life indefinitely.

By Matthew Malamud, News Staff

Illustration: John Michael Yanson

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.

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From September 2010 NASW News. © 2010 National Association of Social Workers. All Rights Reserved. NASW News articles may be copied for personal use, but proper notice of copyright and credit to the NASW News must appear on all copies made. This permission does not apply to reproduction for advertising, promotion, resale, or other commercial purposes.