abstract
- BACKGROUND: Communication about prognosis is fundamental to discussions and planning for end-of-life (EOL) care for patients with advanced heart failure (HF). Little is known about the preferences of patients that could guide communication about prognosis. OBJECTIVES: To identify the preferences of patients with advanced HF regarding communication about their prognosis and its implications. METHODS: A qualitative study using a grounded theory methodology, based on one-to-one interviews with 20 patients recruited from Heart Function Clinic at the McMaster University Medical Centre in Hamilton, Ontario. RESULTS: The following four main themes about patient preferences were identified: level of wellness--patients wanted to learn about their prognosis and its implications at a time of optimal cognitive function, and not when their capacity for EOL decision making was diminished; opportunity to be informed--patients preferred physicians to initiate discussions about prognosis at the time of diagnosis; tell the truth--there was a strong preference for physicians to disclose prognostic possibilities, treatments and outcomes associated with HF, including the possibilities of deterioration and death; and maintain hope--there was a need for truth to be balanced with hope. Hope for quality of life, symptom control and control over EOL decisions were important to participants. CONCLUSIONS: The findings suggested that communication about prognosis between patients and physicians may be difficult and deferred. Preferences identified by patients offer guidance to physicians in planning and initiating dialogue about prognosis.