Church’s Compassion Creates Community-Care Model for AIDS Patients

Church’s Compassion Creates Community-Care Model for AIDS Patients

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Photo: Giuseppe Riga volunteers to comfort and prepare  for other people with HIV/AIDS. (Pamela MacLean/RedwoodAge.com)

Part 1. Read Part 2 here.

SAN FRANCISCO--Giuseppe Riga has an engaging smile he earned the hard way.After volunteering in 1993 to help the dying when AIDS ravaged the San Francisco gay community, he learned that he was HIV positive and his life came unraveled.

His journey has taken him from being one of many who provide palliative and hospice-style care to joining those who struggle with the diagnosis of a life-shortening illness and search for support as a means to a "good death."

Easing Pain, Managing Symptoms

Palliative care focuses on easing pain and managing symptoms in serious chronic or terminal illnesses. It is generally delivered by a team of professionals, including doctors, nurse practitioners, social workers and counselors, including spiritual care. Experts say palliative care should begin much earlier than hospice.

While hospice is a form of palliative case, it is designed for patients who are in the terminal stages of illness. It is most frequently provided in a patient's home by a team focused on comfort and quality of life for the patient and family.

Across the U.S. it was estimated that in 2011 nearly 1.7 million patients received hospice care. In 1982, Congress approved a Medicare hospice benefit that continues to be the dominant source of payment for care, according to the National Hospice and Palliative Care Organization. There are now over 3,600 certified hospice agencies nationwide, NHPCO reports.

Contrary to a popular perception, hospice is not necessarily a physical place, but a state of mind. It’s a holistic approach to care that gives people hope of dying a natural death at home, says V.J Periyakoil, MD, director of the Stanford Palliative Care Education & Training Program.  

Roughly 40 percent of hospice services are delivered in the home, 29 percent in nursing and long-term care facilities, 21 percent in free-standing hospice centers and 10 percent in acute-care facilities, according to a 2013 study in the Journal of Hospice and Palliative Nursing.

Circle of Care

"It is a team of people, a circle of care, with the family at the center," said Silvia Austerlic, Latino cultural liaison for the Hospice of Santa Cruz County about 70 miles south of San Francisco. "When a doctor says there is nothing else they can do, from our perspective there is a lot to do."

The growth in hospice services and the philosophy behind it was much needed. In the 1980s, before the hospice movement expanded to its present size, there was little help for young men caught in the AIDS epidemic, often abandoned by relatives or left alone when partners died. A rudimentary form of hospice arrived from an unusual place. Most Holy Redeemer Catholic Church, in San Francisco's largely gay Castro neighborhood, opened its doors to people with AIDS.

Despite a dwindling membership as its traditional parishioners moved out to the suburbs, while gays moved in, the church formed a support group to provide volunteer help with simple household chores, transportation and most importantly emotional support.

Riga volunteered in 1993, but a decade later found he too needed the group's support. When he discovered he was HIV positive, he became depressed, ending up homeless and addicted to methamphetamine. He turned to the place he knew could help, Most Holy Redeemer.

"When I was homeless and trying to reach out to someone, I felt like a loser. I wanted to crawl under a rock," said Riga, 51, who grew up in Pennsylvania. “Father Tom Hayes, he was the first person I called." Riga said he sat in the church with the priest and talked for an hour. Hayes, now retired, was the AIDS minister for the archdiocese until 2005.

"He asked the support group to get me what I needed," Riga said. That started Riga on the path to recovery and allowed him to return to contributing to MHR's special kind of hospice-style care while he also embraces its support for him. Now he sees two clients every week and spends one afternoon a week in the MHR kitchen helping prepare weekly dinners for the neighborhood's homeless.

Today, with drug cocktails, people diagnosed as HIV positive live much longer and generally healthier lives. But that has not lessened the need for the many kinds of support Riga and others originally brought to the neighborhood. MHR Support Group counts on 45 volunteers to provide services to 85 clients, according to Peter Toms, the MHR volunteer coordinator.

Walking the Grief Journey

Understanding the one-on-one support MHR provides to those facing end-of-life issues provides a window into the evolution of the larger hospice and palliative care movement in America.

Hospice care may include a nurse who checks in at the home, a social worker, chaplain or perhaps a personal care aid for bathing and dressing. It may include grief support for family after the death of a loved one. "It is help in walking the grief journey," said Austerlic.

Despite the growth of palliative and hospice care, use of Medicare benefits and expanded insurance coverage, hospice care remains underutilized. Despite a 41 percent increase in the number of hospices since 2000, more than 60 percent of Americans die without hospice care, the Journal of Palliative Care reported in 2010.

Compounding the problem, researchers have found that hospice services are far less utilized in the African-American and Hispanic communities than among whites. Part two explore issues confronting palliative and hospice care for minority communities.

Pamela MacLean wrote this article for RedwoodAge.com, as part of a California Healthcare Foundation Journalism Fellowship, a project of New America Media in collaboration with Stanford's Successful Aging through Education Program