A patient may want to keep certain aspects of their lives secret from relatives, and health professionals need to respect their wish. This requires good communication between staff. An anonymous testimony reveals this does not always happen
Sharing your HIV status ought to be a personal choice. When my husband and I were diagnosed nine years ago, we decided not to disclose our status to our two grown-up sons as they could find out how it happened, which could have upset them and affected family relations. Our decision survived for nine years until my admission to hospital following a heart attack.
When I arrived in hospital, I did not hide my HIV status but informed the nurse practitioner who assessed me that my status must not be disclosed to my two sons. He wrote this on my record.
When my sons arrived, I felt on tenterhooks every time a nurse came to ask me anything in case they mentioned my HIV status. On several occasions, I was asked about my medication at home, including on arrival to the acute assessment ward when the cardiologist sought clarity on my antiretroviral treatment. I had to be evasive in front of my family and reminded the cardiologist of the need for confidentiality.
After transfer to the ward, the issue was taken out of my hands when a junior doctor asked about my medication at home. This time, I stated that I was not on anything and tried to give him a look that said, “Go away and come back later”.
It did not work and he blurted out loudly, “Well you are HIV positive, aren’t you and I know you must be on medication at home”.
I remember seeing the back of my son as he vanished through the curtain and my heart went cold. In shock, I whispered “Oh my god, do you know what you have just done?” I had just had a heart attack and now my son had to deal with hearing about my HIV status. The junior doctor looked aghast at me, saying that nobody had told him my status was confidential.
The consultant came to apologise and I asked why the junior doctor had not been told that our status was not to be disclosed to our sons. He apologised, stating that it was in my patient record, but that you really had to search for it. He sat with us for about 30 minutes telling us how the doctor had learnt from this situation. But for us there was no way back – the damage had been done.
The issue festered in my husband’s head in the days that followed. And once discharged from hospital, I wrote to the cardiology consultant to highlight how the incident affected our family. I requested a meeting with the junior doctor, the consultant, my husband and myself.
The junior doctor apologised profusely and we reminded him that every patient he sees is a person and that this can happen to anyone who wants to keep their medical history secret from family members. Medical staff should not assume that families are aware of their relative’s condition.
Furthermore, it highlighted inadequacies in the compilation of my patient record. Several times I reminded the nurses and doctors of the need for keeping my HIV status confidential, and despite highlighting my allergy to aspirin and penicillin, three nurses and the junior doctor seemed ill-informed, stating it was not written in their copy of my records.
It also revealed a certain apathy where staff speak openly and loudly about patients’ history without considering the impact of a breach of confidentiality.
As for our sons, this non-consensual and inappropriate disclosure of our HIV status has really disrupted our family relations. There is no way back, we cannot change what happened and only time will heal the pain they are now experiencing. But time is a great healer and we are at least starting to talk to each other, so I’m optimistic for the future.
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