Negotiating trust during times of uncertainty: haemophilia and AIDS

Abstract: Trust forms the core of healing relationships. Mistrust can co-exist and complement trust by enabling patients’ to challenge medical decisions without fear of repercussion, thereby negotiating a more patient-centric approach. While trust can safeguard the therapeutic relation-ship during periods of medical uncertainty, a reappraisal of trust at such times can lead to its loss, adversely affecting this relationship. This occurred during the 1980s when haemophilia patients contracted AIDS from their treatment, a situation of iatrogenic harm at a time of evolving uncertainty. Published literature on how this impacted on doctors’ response is absent. Using legal and narrative material from the UK and elsewhere, this paper will address profoundly distressing dilemmas in the stance of haemophilia physicians towards their patients during the 1980s and how this impacted on trust. The paper argues that trust and mistrust are fluid during times of uncertainty. This trust is subject to social forces that are ethically challenging and beyond individual control. Its recovery requires fresh societal debate. This understanding is of fundamental importance in the training of medical students and doctors to become better physicians.

Keywords: haemophilia, AIDS, Infected Blood Inquiry, iatrogenic, ethical, uncertainty, trust, mistrust, therapeutic relationship.

Article posted to the Journal of the British Academy, volume 11, supplementary issue 6 (Exploring Medical Mistrust: From Clinic to Community)