It was near the end of my first rotation in the intensive care unit. A ray of sunlight shone into the ward through a window; outside, the day was beautiful and cloudness - quite a contrast to where I stood. Twenty patients lay in the unit, some with fractured limbs and vertebrae, others with overwhelming infection, some comatose with cerebral edema, several rubbing shoulders with death.
Among them was a young woman who had come to emergency in acute respiratory distress. The cause had been identified: Pneumocystis carinii pneumonia. Apart from having had several boyfriends over the past few years, she had no risk factors for HIV.
Her condition deteriorated quickly, but before intubation was needed she had given consent for HIV testing. After intubation, her agitation prevented adequate oxygenation and required both muscle paralysis and sedation. The test result arrived: she was HIV positive. By now, she was comatose. Figure 1
Not only was her condition precarious, but the issue of confidentiality was problematic. Although she lived with her mother, she had not listed her as next of kin at admission and had named two friends instead. Their whereabouts were unknown. Would she want her mother to know her HIV status before she did? What if she died before she learned her diagnosis? Figure 2
These questions were hotly debated by the ICU team. We resolved that the house staff on call would not tell the patient's mother the underlying diagnosis that weekend. We would hold a family meeting on Monday and disclose the seriousness of her condition then.
As it happened, the patient's mother came in early on the Saturday and asked to speak to the doctor on call. I was the only on duty that day. All I could hope was that she would not ask for the diagnosis. If she did, I would have to withhold the truth.
As I approached the room I could see her sitting, quietly resolute, at her daughter's bedside. She wore a colourful dress and a simple sun hat. She looked as if she could have been sitting in the shade of an oak tree on a warm Sunday afternoon, sipping lemonade and chatting about the weather. But she was there to discuss her daughter's condition. I was there to protect my patient's right to confidentiality. I was there to draw a line in the shifting sands of disclosure.
She looked at me slyly. It became a game of cat and mouse: pleasant chitchat about her somewhat rebellious daughter was interspersed with probing questions.
"Doctor, please, if I may, what is the reason for my daughter's bad pneumonia?"
"This type of pneumonia is usually due to a weakened immune system," I replied. My tongue was dry.
"But just what kind of pneumonia is it?" she inquired.
I told her the name
Her eyes narrowing only slightly, she formulated her next move. "Could all of this sickness be because of some sort of - what do you call them - virus?
"Yes, that's one possibility," I manoeuvred, begging all the forces in the world not to let her ask outright if her daughter had AIDS. There was that line I was not to cross over.
We paused, her inquisitive eyes resting on my guilty face. I hated this. It was evident how much she loved her daughter. She was suffering unfairly and her anguish was made more acute by my limited disclosure. In a way, she was being made the fool. The entire ICU staff - all strangers to her daughter - knew the diagnosis. Yet here she was, each day, watching her daughter die without knowing why. It became clear to me that she had the right to know, to make the proper preparations, and to grieve. Perhaps she suspected all along the word I dared not utter and was testing my moral fibre. Maybe I was being made the fool.
My pager suddenly rang, and we both jumped. I had never been so happy to assess x-rays for proper nasogastric tube placement. Before leaving, I asked her if there was anything else. But the momentum was lost. She looked almost resigned. I tried to reassure her by mentioning the family conference in two days. She smiled and thanked me graciously. I walked away, trying to justify to myself what had happened. I had done what I was instructed to do. I had managed to keep patient confidentiality intact. I had done right, hadn't I?
So why did it feel so wrong?
Rosaleen Chun, MD
Dr. Chun is a fourth-year resident in the Department of Anaesthesia, University of Toronto.
Special thank to Dr. P.C. Hebert for his guidance and editorial input.