In my third year of residency training in Family Practice, the county health clinic doctors had a disagreement with the Internal Medicine Service; overnight they switched their patients to us. Not only did our number of inpatients double, but the county health doctors took care of 2/3 of the HIV and AIDS patients in the city. This was before the current cocktail of drugs. It was slowly lethal and in our area it was mostly young men that were dying.
The county health doctors took care of their patients on a shoestring budget and with a very limited formulary of inexpensive drugs. They were incredibly good at keeping their people out of the hospital.
When one of their patients came in, they were sick as snot. Really, really sick. We felt like we were running to keep up with the county doctors' comprehensive knowledge of AIDS.
One man was in his 30s, with AIDS and a falling CD4 count, almost to nothing. He had fevers and facial pain. The dentists thought it was his sinuses. The Ear, Nose and Throat specialists thought it was his teeth. They were both right. He had an abscessed tooth that was tracking up into his sinuses and had to be drained, with both diciplines involved. He needed intravenous antibiotics. Our team never saw any visitors, including the partner he lived with. At last he was ready to go home.
Four days later he "bounced" back. A "bounce" was when a patient got rehospitalized. We were on call one out of four nights, when we got new patients for 24 hours. We stayed for another 12 after that to clean up. One of the four days was a "short" day, where we only got new patients until 4 pm. A 3:30 admission could keep us there until 7 or 8 pm. When a patient returned within 10 days, they would go back to the same team if it was within 10 days. This was wearing, especially if it was during the postcall 12 hours.
He did not bounce because he was sicker. The story unfolded that he bounced because his partner wasn't home much. He needed a lot of help. He was not getting the antibiotics, or even enough food and care.
We wanted him to go to the AIDs Hospice.
"No," he said. "I'm not going. I'm not going there to die. I'm going home."
The team was frustrated, the social worker was frustrated, everyone threw up their hands. He was stubborn and he wasn't listening and WHY wouldn't he let anyone help him?
"I'm not going to the hospice," he said, when I went to do my exam the next day.
I did my exam, thinking. Finally I sat down by the bed. "Tell me. What is it you need at home right now in your life?"
He was silent for a few moments. "A tv." Slowly. "Someone to bring me food and my medicine. Help to get dressed and get clean. Help to the bathroom."
"Do you have that at home?"
He started to weep. "No."
"No. We don't think so either. We think your partner is burned out as a caregiver and can't handle it right now. We are sorry. We are not sending you to the AIDs hospice to die. We want to send you there because they will do the things that you need. They can handle it."
It was terrible to watch him cry. I think I did too. Our team was managing young men in their 20s and 30s who were dying. We weren't their friends or lovers or families and we could hardly handle it emotionally. We were not angry at the caregiver: usually we were amazed that anyone was handling it at all and that there was anyone who was not burned out.
He agreed to go to the hospice. Not another word of argument. We said farewell. I hope that his partner started to get the rest he needed and returned to be with him. He did die, within a month.
The patient is not the only patient. I watch the family and friends and try to support them as well. And sometimes they burn out, or for a little while they are crazy. It isn't lack of love. It's just fatigue; doctors and nurses can burn out too.
And now years later I second guess myself. Would it have been better to let him go home and continue to bounce back? He was not getting the basic care he needed. He would have realized on his own eventually. I don't know. We could all see that his caregiver and friends were burned out; but was it right to point it out? I do not do not do not know.