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Category: Alumni Profile, COVID-19 Resilience & Response

Title:A Call to Compassion

Author: Jane Varner Malhotra
Date Published: July 13, 2020

“There seemed to be a big change after that,” Pierce recalls. “Shortly after, doors opened up for us and suddenly the hospital administration asked us how they could better support us. That’s when they gave us a dedicated space in Kober-Cogan.”

Through the clinic, Father Sal Jordan and Peggy Magee set up one of the hospital’s first patient support groups. The Georgetown staff who volunteered there were an exceptional group, says Father Sal.

“A lot of it was on the quiet side without much publicity or anything. I always considered it my most essential work as a Jesuit. I was very fortunate to work with the nurses, doctors, and social workers through the HIV clinic—how loving they were, and nonjudgmental.”

Societal judgment around being a heroin user or being gay had an outsized negative impact on research and care for people with the sexually transmitted disease, says Curry.

“We lost a decade due to stigma. In the 90s we were dealing with the fallout from the 80s,” she explains. “There was this false sense of security in the early years because people heard and read that only certain groups were at risk. People would see those categories, and when they did not see themselves on the lists, they would believe themselves not to be at risk and also that it was not their concern.”

She pauses.

“And we live with the legacy of that still.”

Curry recalls the many times patients begged them to not document anything that would reveal they had HIV, including one high-ranking government official who planned to tell everyone that he had TB. “He thought that was more acceptable. Don’t put HIV on my death certificate, he said.”

As if the disease itself weren’t devastating enough, the stigma around how it was acquired made it far worse, says Curry. “Living with that level of fear of discovery evokes a lot of negative entropy, in terms of someone ever achieving a sense of wellbeing.”

Helping Families in Turmoil

Many families struggled as their sons quickly declined in health and often at the same time revealed their previously private sexual identity.

“I remember one whose father was a top lawyer in his hometown, mother a nurse, an aunt a nun,” says Father Sal. “Their son’s illness created lots of turmoil for them. He didn’t even want to go home for Thanksgiving.”

Father Sal convinced him to go and reconcile with his conservative Catholic family, and agreed to accompany him and help bridge the divide.

“He had just a few months left to live and had lost a lot of weight. We drove home to his family an hour away and spent Thanksgiving there with them. My presence was a big help to him and to his family, just by offering understanding and support. A month later he died in a Washington hospice care facility about 3 in the morning, and his family called me to be with them at his bedside. I was glad they were reconciled.”

“Far too many people had been banned from families once their diagnoses were known,” says Curry. “They wanted to be with nieces and nephews again but were forbidden to touch them.” For some, they were invited to family occasions but were seated at a separate table alone, with disposable plates and cups.

Curry remembers a sentinel event that greatly impacted the Infectious Disease team. A young man with advanced AIDS who had insisted on keeping his diagnosis from family, came in to the hospital critically ill and was placed on a respirator in the ICU. He had been living his dream of working for the government in the nation’s capital, and when his parents and brother arrived from the Midwest they were completely stunned by their son’s sudden illness.

Some members of his care team believed the family should be told of his underlying condition, and frequent ethics consults took place for staff. How can the family make decisions about his care when they don’t know his diagnosis? But Mary Young, his physician, honored her promise to him of nondisclosure.

“After he died, Mary had a meeting with family and explained everything,” Curry says. “She explained why we withheld the information. They were enormously relieved to know that there was something to explain his critical illness, and that he was being cared for by a team like Mary’s, who honored their commitment to the patient. But the family grieved that he never trusted them with that information. His mom said they could’ve helped him carry that burden. She was heartbroken that his decision had deprived him of their prayers and their love and support.”

From that point forward, Curry says, their practice changed. They shared parts of the story with new patients in similar circumstances, and had them identify at least one person they could trust who would know their situation fully, and who could make decisions for them when they were no longer able.

Magee and Father Sal organized a yearly Mass of remembrance in the hospital chapel, where the names of all the patients lost to HIV were read— 80 to 90 per year during the peak.

“We lost a lot of patients,” says Young. “Protease inhibitors combined with older nucleoside drugs turned the tide, people stabilized, people reversed course. Some are still alive today. But 1987 to 1995— those were really rough years.”

A Generation of Medicine Shaped by HIV

Watching their teaching clinicians stumble into the AIDS epidemic, not knowing exactly what to do as they lost patient after patient, left a lifelong impact on medical students at the time. But they shared in the privilege of caring for an especially vulnerable group of individuals, accompanying those in great need, even in high-risk scenarios.

Mary Young remembers the pregnant woman who came in with pneumonia, received an HIV diagnosis, and was transferred to her team for care. It was a second marriage for her husband, who had done a lot of international travel and who also presented with HIV. By then they were treating patients with AZT, which she took and gave birth to healthy twins.

“Both parents had significant infections,” says Young. “She died in 1994. But he got on new inhibitors and responded, and lived long enough to raise their children. People who could make it to 1995 had a good shot of surviving.”

Kumar recalls the leadership shown by Mother Teresa, who came to Washington, D.C. in 1988 to set up the Gift of Peace Center to house and provide care through end-of-life for people with AIDS. Mother Teresa told Pierce that she saw the population as analogous to the people on the streets in Kolkata, India: homeless, frail, and abandoned by their families.

Located in Northeast D.C., the Center was staffed by Mother Teresa’s order of religious sisters, the Missionaries of Charity, and supported by the Archdiocese which provided a former orphanage for the site. Per Mother Teresa’s request, Georgetown University agreed to provide linens, remove waste, and provide a case manager as well as physicians to volunteer there—contributions that are now equally shared by MedStar Georgetown University Hospital and continue today under Kumar’s leadership as the medical director of the Gift of Peace.

Despite the overwhelming medical and societal challenges of the time, Georgetown’s Catholic and Jesuit values gave hospital caregivers the language and grounding to do their work, caring for the marginalized despite widespread fear and stigma, says Young.

“It was an honor to work with that team. They humanized the illness, and recognized the person behind the disease, someone with hopes and dreams and family issues—with much more going on that just the illness you see. They were treating the person above all, not just the disease,” she says.

“The people who showed up for this work exemplified cura personalis, that deep compassion. They were ready to risk their life to care for others.”

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