Background Research has consistently shown that patients at the end-of-life and their families value honest communication about prognosis. In the final hours and days of life, communication with families is particularly important, as at this point patients are often unable to communicate. This study aims to understand experiences of end-of-life prognostic communication from the perspective of hospice clinicians and relatives of patients.
Methods Semi-structured interviews and a focus group were carried out with five senior hospice clinicians and twelve relatives of patients who died in the same hospice in the previous 3–6 months. Thematic analysis was used to identify relatives’ and clinicians’ perspectives on what is important to them during end-of-life prognostic communication.
Results Clinicians suggested that as long as the family was aware that the patient was dying, it was not always necessary to raise prognosis. They felt repeatedly talking about timelines could cause families to become fixated on prognosis. When they did raise prognosis, this was often for practical reasons, such as ensuring relatives could stay overnight to be present if the person died. They described using relatives’ own descriptions of the patient‘s deterioration to help them understand the prognosis, and emphasised the importance of being honest about the uncertainty. Relatives appreciated this honesty and were aware that it would not be possible to be given an exact timeline. Some described information on what to expect during the dying process as helpful, but others felt this information was lacking.
Conclusions Relative and clinician accounts of prognostic communication were generally aligned, with a focus on providing an awareness that the patient was dying whilst highlighting prognostic uncertainty. Clinicians should be aware that some relatives want further information about what changes to expect in order to be reassured that the patient‘s symptoms are a part of the natural dying process.
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