Background The Dutch Framework for Palliative Care advises physicians to timely start advance care planning (ACP) in patients with life limiting diseases. Such communication requires disclosure and discussion of patients’ limited life expectancy. We explored patients’ experiences with such discussions.
Methods Medical specialists from three different hospitals included patients with incurable cancer or late-stage chronic obstructive pulmonary disease (COPD), with whom they had spoken about their limited life expectancy. All 14 patients (7 cancer and 7 COPD) had a semi-structured interview with one researcher about their experiences on those conversations. The interviews were audiotaped, transcribed, coded, and analysed by two researchers.
Results All patients were aware of their limited life expectancy. They were often shocked when their physician had indicated prognosis rather concrete. However, such indications also enabled them to reflect certain treatments and led to conversations about ACP sometimes. Most patients agreed that the physician should initiate conversations about life expectancy, but that the patient should have control of the continuation of that topic. Some patients with COPD who disagreed with this also believed that the pulmonologist lacked the ability to indicate their life expectancy. Factors that facilitated agreeable conversations for the patients were: clear explanations and messages about the disease, prognosis and treatment options, feeling of being heard, sufficient time, and adequate preparation by the physician, an open attitude, and sensitive non-verbal communication.
Conclusion Overall, patients appreciate honest, personalized and attentive communication on a limited life expectancy enabling reflections and communications about ACP.
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