HIV and Disclosure: A Doctor’s Moral Dilemma
July 10, 2012, 8:37 pm ET
Dr. Lisa Fitzpatrick is a CDC-trained epidemiologist and practicing infectious diseases physician in Washington D.C. At the CDC, she led teams that produced landmark studies on HIV transmission among black college students, black women and in the Georgia prison system. From 2005 to 2007, she served as a U.S. diplomat, and was director of the CDC’s Global AIDS Program in the Caribbean, responsible for implementing the President’s Emergency Plan for AIDS Relief (PEPFAR). Fitzpatrick is an associate professor of medicine at Howard University and the director of infectious diseases services at United Medical Center.
Recently I had an unusually distressing day at my clinic. I work in an impoverished neighborhood with some of the city’s most indigent patients. Each one faces a social challenge — unemployment, chronic hunger with no access to food, lack of transportation, homelessness. But the challenge I faced with my new patient made these issues seem like a walk in the park.
The patient was a newly diagnosed woman with a single-digit CD4 count, which means her immune system had been destroyed by HIV. In the previous months she had been evaluated by four internists, none of whom thought to test her for HIV. This information bothered me, but wasn’t the source of my distress. Experiencing no physical relief from these providers, she had decided to “lay down and die.”
However, upon what she describes as “fierce” insistence by her partner of 10 years, she agreed to go to a hospital ER, and after a rapid test, learned she was HIV positive.
As she sat in front of me and told me her story, her partner, who had accompanied her — the one she credits with saving her life — sat quietly in the corner. This partner was the source of my distress. She told me he was also HIV positive. I turned my attention to him and asked if he was in care. He said no and indicated he wanted to establish care with us. Then I asked if he had previously been on medication. Angst and frustration grew inside me as I listened to his answer.
He gazed at the medication chart and pointed out his previous regimen. The cocktail contained indinavir. Based on this information I knew immediately that he had been withholding his secret from her for over a decade. I couldn’t remember the last time I prescribed indinavir. An awkward moment passed as I reflected on their scenario.
The silence is perpetuating disease.
His secret led to her infection. I then wondered if this was the reason he “fiercely” insisted she seek help despite her resolve to lay down and die.
For the remainder of the visit I maintained objectivity externally, but inside I was wrestling with endless questions and my own moral dilemma. As a physician, I am not allowed to reveal any medical information about my patients or their circumstances without their written permission. The confidentiality between a patient and provider is sacred. Therefore, it is not my duty or my right to disclose or report such blatant injustice. But now this constraint feels inappropriate and morally irresponsible.
Unfortunately this is not an isolated case. A personal urgency is building for me to seek answers, incite a conversation or influence our murky policies that provide no guidance about or latitude for wandering outside the lines of confidentiality even if for the health benefit of another. The urgency is building because I have witnessed countless scenarios many of which are variations on this theme.
A few months ago, a patient arrived at her visit urgently wanting to know her viral load — which would tell her the amount of HIV floating in her bloodstream. She had a new boyfriend and had decided if the amount of virus in her blood remained low enough and was controlled by her HIV medication she would not have to disclose her HIV status. She has since decided to wait until they are married to disclose her status to him.
I encouraged her to tell him by asking how she would feel if she were in his place. She then asked if she could bring him for a visit; they could both be tested and she could feign shock, awe and distress when I revealed her diagnosis. It is a clever response that painfully demonstrates why support must accompany disclosure. She did not feel strong enough to divulge her secret on her own and thought she could draw strength from my presence as I diffused what might become a tense and awkward situation However, as I played the scenario out with her, she realized this would create additional ethical dilemmas and a series of untruths and dishonesty from which neither of us could recover.
These issues around disclosure, personal responsibility and the need for clarity around my role as a health care provider give me heartburn. Am I complicit in these behaviors? Why doesn’t the law speak clearly and guide me about how to address these issues? Whose responsibility is it to inform unknowing, uninfected partners when their infected partner refuses to disclose? What should be the ramifications for failure to disclose? What should our response be? What should the community expectations be? How do we balance personal responsibility while minimizing HIV-associated stigma and shame?
As a public health practitioner whose goals in life include fostering community wellness and halting the spread of disease, these questions around the failure to disclose HIV status and our response to it have become the moral dilemma of my career. Most of my patients are so comfortable with me they know they can tell me anything without shame, embarrassment or fear of judgment. The trust between us is sacred and this deepens my conflict all the more.
But the secrecy is not OK. The silence is perpetuating disease. If we expect to end the epidemic, we cannot continue to ignore these questions, which are blatantly staring us in the face. They are pervasive and until we develop the moral courage to craft a balanced response and discuss these issues aloud and in the open, any notions of ending the epidemic is merely lip service and a pipe dream.