Opinion

Families were physician’s teachers in early years of AIDS epidemic

Charles van der Horst, M.D., is an emeritus professor of medicine at UNC and a global health consultant.
Charles van der Horst, M.D., is an emeritus professor of medicine at UNC and a global health consultant.

“I just can’t watch him lie there, breathing like that, struggling.”

My patient’s mom sat opposite me in the hospital conference room. Painted fluorescent orange with a bright emerald-green carpet, the room was a misguided attempt to be cheerful on the AIDS ward. Her face reflected the guilt over her inability to keep her son at home. I reached across the table to hold her hand.

A week before we had sat in the same room and talked about taking her son home to die. She listened as I said: “We have to stop treating him. It isn’t fair to him. Medicine can work wonderful miracles but wreak a terrible price as well, desecrating the body in ways God surely did not mean.” His mother had nodded in agreement and I arranged for an ambulance to bring him to his parents’ rural North Carolina home.

For my patient’s mother the pain of watching her son slowly die was crushing her after all these weeks. He had been unconscious for days now, pale and gaunt with a bed sore on his buttocks, his breathing coming in gasps. I had not met this family prior to his illness and did not know their relationship. I just knew that at this moment, she no longer had the emotional strength to have him at home.

As a parent, accepting that there is nothing more that can be done to save your child is impossible.

From 1980 until 1996, there was no or imperfect therapy for the AIDS virus. A great many of my patients died within months. I quickly realized that I needed to help them die with dignity and comfort, if possible with their families beside them.

As a young physician, I had little experience with hospice and no training in medical school or residency. There was no specialty of palliative care. Most important, I did not have anyone to advise or guide me. In 1972, the author Elizabeth Kubler-Ross testified at the first national hearings on the subject of death with dignity.

“We live in a very particular death-denying society,” she said. “We isolate both the dying and the old, and it serves a purpose. They are reminders of our own mortality. We should not institutionalize people. We can give families more help with home care and visiting nurses, giving the families and the patients the spiritual, emotional, and financial help in order to facilitate the final care at home.”

By 1990 when I wanted to help my patient, the hospice movement was only 8 years old, and the amount of help for dying patients was limited. In my experience, when given the opportunity, most patients will have an honest and frank discussion with their physicians and their families about their desires concerning death. Death can come at any time and caregivers must facilitate these discussions.

In the early days of the AIDS epidemic, I learned from the families. Even before we knew what the cause of AIDS was or how it was transmitted, the love of mothers and fathers transcended fears of contagion. The father of a local businessman rented an apartment so he could care for his son dying of encephalitis. While everyone was wearing protective gowns and gloves, a mother, wearing neither, quietly wiped her son’s bottom and gently bathed him.

Fortunately, most hospitals and communities now support a growing field of palliative care that eases pain and discomfort, provides support, and helps with care decisions for very sick patients and their families.

Upon returning to the hospital, my patient’s mother asked me, “Will he be in pain? What are you giving him? How long will this go on?” Holding her hands, I patiently answered each question, as best I could, reassuring her that I would make sure he was comfortable.

As we sat quietly in the harsh light, I watched her husband. With all the visits to the clinic and the hospital, he had never uttered one word.

I had little sense of his feelings toward his son, how he felt about having a gay son, a son with AIDS, or his wishes for his care. With hands folded prayerfully on his lap he sat straight in the chair, quietly silent, off to the side, away from the luminous intensity of his wife. His feet, clad in dull brown and scratched boots, were parallel and anchored on the ground. His overalls were pale and worn with time, the seams now white lines. The wrists of his red plaid shirt were frayed, revealing faint tufts of gray. His leathery face was still, inscrutable to me; blue eyes fixed on a distant point.

As they agreed to the plan I presented, a searing pain seemed to seize his father, reflected in his face and defeated shoulders. And tears broke, streaming down the lines of his brown cheeks as he sat, his arms stretched across his chest, hugging himself.

Charles van der Horst, M.D., is an emeritus professor of medicine at UNC and a global health consultant. Follow him on Twitter @chasvanderhorst.

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