Just Being There: The AIDS Crisis and the Shanti Project’s Hospital Counselor Program
When Ward 5B premiered at the 2019 Cannes Film Festival, the nurses of the first AIDS inpatient unit in the United States walked down the red carpet with movie stars Julianne Moore and Halle Berry. Garnering critical and popular praise as well as Oscar buzz, Ward 5B explores the famed AIDS unit from the time it opened at San Francisco General Hospital in 1983, its expansion to the larger Ward 5A in 1986, and its closure in 2006. Codirectors Dan Krause and Paul Haggis drew upon the voices of the nurses, family members, patients, community figures, hospital volunteers, and long-term HIV survivors and integrated archival footage of life on the ward to center the men and women who cultivated this space and place of holistic care and healing. Despite the many voices in this documentary, the directors excluded a powerful supporter of all those on Wards 5B/5A: The Shanti Project. A community based organization that provided free counseling support services to people living with chronic or terminal illnesses and their loved ones, Shanti provided its services on the AIDS ward via staff counselors between 1983 to 1995. Known as the Shanti Hospital counselor program, Shanti counselors helped people with AIDS (PWAs) and their loved ones process the tumultuous nature of the AIDS epidemic through bedside visits, support groups, and help with discharge planning. It was the first time an outside community organization was formally hired on staff at SF General and also retained its own work identity and intimate style of nonmedical care in a medical environment.
Linda Maxey, the first Shanti hospital counselor manager, described the program as striving to make the ward an unconditional safe space where “the boundaries of nurse/patient, counselor/patient get real nebulous.”1 This feeling of safety was made possible through an interdisciplinary team led by nurses, including nursing clinical director and creator of the ward Clifford Morrison, and supported by social workers and counselors from Shanti Project. Examining Shanti’s work is necessary to the history of the ward, as well as the AIDS epidemic as a whole. Focusing on Shanti’s hospital counselor program underscores the need to center the living, breathing, feeling person in patient care.
Shanti Project began offering peer support services to people with life-threatening illnesses in 1974. Founded by psychiatrist Dr. Charles Garfield, Shanti’s mission of training lay volunteers to provide dying and chronically-ill patients with emotional support emerged from his own work with patients at the Cancer Institute at UCSF in the early 1970s.2 In 1983, as the AIDS epidemic began to inundate Shanti’s emotional support services, the organization decided to solely focus its work on PWAs. Shanti then expanded their programs beyond emotional support, including: the provision of practical support in which volunteers performed everyday chores for debilitated PWAs; the creation of the first residence program in the U.S. for PWAs; an activities program; and the Shanti hospital counselors at SF General’s Ward 5B/5A.
As Shanti transitioned its services to meet the needs of PWAs in 1983, Clifford Morrison took part in Shanti’s volunteer training. He felt that Shanti’s emotional care would greatly benefit PWAs and the organization should have a place on the AIDS ward. After some negotiating with city hall, Morrison and Jim Geary, Shanti’s then executive director, secured contracts for Shanti to provide ward counselors.3 Nurse Alison Moed, who was featured in Ward 5B, stated that Shanti made the ward a place of healing: “We wanted to spend time with our patients but sometimes maybe we couldn’t. … Because we had to get on to the next patient who was like, maybe, pooping all over themselves. … Or had high fevers. … Thank goodness we had people … who could sit there and spend time, who could put their arms around someone who needed to be held. That was so important.” Moed noted, “Otherwise, how could you go to the next room knowing that someone else was really suffering and needed their emotional needs met?”4 Counselors were on the ward seven days a week, including holidays, and were assigned about ten patients per shift. They also met the emotional needs of patients’ lovers, family members, and friends on the ward by serving as liaisons helping them to navigate the medical system. Shanti counselor Nitsa Mercatandou recalled, “We had our fingers in everything.”5
In a video documenting the “San Francisco General Approach” to AIDS, Shanti counselor Mark Higgins explained that counselors were there to “actively listen and let the person decide what the issues actually [were], to discover their own coping mechanisms and then support them” in that process.6 Higgins stated counselors served as “the ear no one else has.”7 Jacqueline Peoples described Shanti’s method of peer support and active listening as a tool for patient advocacy through presence; “Listening, eye contact, and … really being there – are crucial.”8 Even when patients were comatose or unable to verbally communicate, Shanti counselors were present and engaged with them.
Roberto Garcia’s first patient on the ward had been admitted with pneumocystis pneumonia and used a respirator to assist him with breathing. While the patient was unable to talk, Garcia tried to strengthen and exercise his patient’s fingers so he could write and point. Even then, “There were days when he felt strong and felt like living, and then days when he just felt like dying. … It was really difficult not being able to make him better. … All I could do was tell him, ‘I’m here for you.’”9 Ed Wolf counseled a man named Marvin, who was diagnosed with HIV-induced dementia. Wolf spent time with him shortly after his diagnosis and had trouble connecting with the non-reactive Marvin. As Wolf began to leave his room, Marvin stopped and asked him, “You’re not leaving yet, are you?” Wolf was touched by his question and stayed a little longer, holding Marvin’s hand while he watched TV. Wolf concluded, “I had assumed my presence had not been felt and … had almost missed a connection we were so clearly sharing.”10
There were also moments of levity on the ward. Mesha Irizarry, the first Spanish-speaking Shanti counselor, told a story of being with an older transgender Latina woman. The woman, a major figure in the Queer Latinx community, was comatose. Irizarry was talking with her and jokingly said, “Who knows, maybe you will reincarnate as a lesbian in the next life?” According to Irizarry, “She opened one eye and looked at me and said, ‘Bitch, that would be the day.’ And then she closed her eyes and passed on.”11 Approaching dark situations with humor and expressing joy around life were a key component of life on the ward. Moed told me, “There was almost a feeling of festivity at times on the unit. That was something that developed as things got darker, we got lighter.”12
As the epidemic continued and more treatments became available to patients on the AIDS ward, it was no longer a space of quickly dying patients. Shanti counselor Andrea Canaan explained in 1990 that, “Not everyone here is dying. There are people who have been here, been discharged, who have gone on with their lives.”13 Social worker Anita Kline described her work on the AIDS ward as being a “learning curve” and that Shanti counselors “modeled for me … to really trust that it wasn’t always about doing something. … Just being present often is what people needed the most. I don’t think I learned that in social work school.”14 Elissa Chandler, one of the first nurses on the ward, bonded with the Shanti counselors, because of their “more emotional involvement” with patients.15 This bond amongst the staff was not restricted to the ward, either; Shanti counselors also marched with ward staff at the San Francisco gay pride parades instead of the Shanti contingent.16
The city ended funding for the counselor program in 1995 citing budgetary needs, sparking some outcry. One patient told the Bay Area Reporter, “Now that the Shanti counselors’ program is gone, who will hold my hand during my first bout of [pneumocystis pneumonia]?” Another local activist called the elimination of the Shanti counselors “detrimental” to patients with HIV/AIDS.17 The legacy of Shanti’s hospital counselors is that of a unique community partnership, a “residency in life.”18 This history emphasizes the importance of having specified emotional support services that go beyond the realm of discharge planning and holding hands at the bedside. In 1990, Shanti counselor Bharat Lindemood articulated his experience on the AIDS ward: “Working here now, I feel that I’m still definitely part of the medical system, but I’m in it, not of it. It’s really clear that people need us here.”19 Shanti’s emotional work in medical settings reflects the importance of learning to advocate for another person in pain by actively listening without any personal agenda. Active listening, witnessing, and holding space requires that we not intellectualize other’s and our own emotions but rather be, share, and feel together.
Notes
- Lon G. Nungesser, Epidemic of Courage: Facing AIDS in America (New York: St. Martin’s Press, 1986), 226. Return to text.
- Charles Garfield, interview with author, 10/25/2018. Return to text.
- Clifford L. Morrison interview by Sally L. Hughes, “The AIDS Epidemic in San Francisco: The Response of the Nursing Profession, 1981–1984,” Vol. III. Return to text.
- Alison Moed Paolercio, interview with author, 10/23/2018. Return to text.
- Nitsa Mercatandou, phone interview with author, 07/14/2018. Return to text.
- AIDS: The SF General Approach, 1987, Carton 2/8, AIDS History Project Audio/Visual Collection, MSS 2000-32, UCSF Library and Center for Knowledge Management, Archives and Special Collections, University of California, San Francisco. Return to text.
- Ibid. Return to text.
- Shanti Project Case Statement, Folder 1/27, Shanti Project records, MSS 98-48, Archives & Special Collections, UCSF Library & CKM. Return to text.
- “Hospital Counselors Keep Open to the Challenges of AIDS,” Eclipse: Shanti Project Newsletter, (October/November 1990): 4. Return to text.
- Ed Wolf, “A Week on Ward 5A,” Bay Area Reporter, March 25, 1989, 12. Return to text.
- Mesha Irizarry, interview with author, 07/09/2016. Return to text.
- Moed, interview with author. Return to text.
- “Hospital Counselors Keep Open to Challenges of AIDS,” Eclipse, n.d., 5. Return to text.
- Anita Kline, phone interview with author, 11/1/2018. Return to text.
- Elissa Chandler, phone interview with author, 07/12/2018. Return to text.
- Robin Rose, interview with author, 05/26/2018. Return to text.
- Dennis Conkin, “Shanti to End Program at SFGH,” BAR, February 5, 1995, 3; and Joel Reyna Jr., “Shanti Elimination,” BAR, March 9, 1995, 8. Return to text.
- “Hospital Counselors Keep Open to Challenges of AIDS,” 5. Return to text.
- “Hospital Counselors Keep Open to Challenges of AIDS,” 6. Return to text.
Brendan McHugh is a graduate student in the Department of American studies at the University of Minnesota, Twin Cities. He is an oral historian and his research focuses on the history of AIDS caregiving in the U.S. Currently he is developing a online exhibit website focusing on the history of the Shanti Project.