Bereaved families’ experiences of end-of-life decision making for general medicine patients

Abstract

BackgroundFamily involvement in decision making for hospitalised patients is associated with improved end-of-life care. Yet, these discussions can be challenging for physicians and families and associated with distress, confusion and conflict. There is a need to understand how best to support families involved in decisions regarding the transition from active to palliative treatment in hospital settings.AimTo explore bereaved families’ experiences of end-of-life decision making for general medicine patients.DesignA qualitative exploratory study framed by social constructionism using semistructured interviews and thematic analysis.Setting and participantsThe general medicine units of one large public hospital in Melbourne, Australia. We recruited 28 bereaved family members of patients who had received end-of-life care.FindingsPatients and families depended on physicians to explain clinical complexity and treatment beneficence; however, trust in medical judgement was mediated by participant’s own interpretations of clinical progress. Families sought to be respected as advocates and experienced distress if physicians disregarded their perspectives and insight concerning patient preferences. Ideally, families supported patients to express their preferences to physicians. Otherwise, families contextualised treatment decisions through their knowledge of patient’s values and quality of life. Families often felt burdened by or excluded from medical decision making and experienced distress and confusion regarding their rights to request or refuse treatment.ConclusionOur study highlights how families contribute to decision making to ensure end-of-life care treatments reflect patient preferences. Physicians can ease families’ distress around treatment withdrawal by providing a meaningful explanation of complex clinical issues, clarifying decision-making roles and acknowledge families’ desire to protect and advocate for their loved one.