Background Good communication stipulates that we avoid using jargon. However patients’ understanding of terms such as ‘specialist palliative care nurse’ and ‘Macmillan nurse’ seems variable. We are often asked by patients who are already known to a palliative care specialist nurse, whether they could also see a Macmillan nurse.
In addition, as palliative care evolves and the role of hospices has changed to include complex symptom control, the subsequent name change to ‘Specialist Palliative Care Unit’ seems logical. However patients’ understanding of this seems variable.
Aim To establish the understanding patients have of the terms commonly used in palliative care and ascertain whether the terms we take for granted cause any confusion.
Methods Qualitative semi structured interviews with 20 participants attending palliative care outpatient clinics. Participants had a range of life-limiting conditions and prognoses. Patients new to the service and those already known were sampled to identify any difference in their understanding. Interviews were recorded and transcripts were analysed using the principles of thematic analysis.
Results Only four patients were able to identify that the roles of specialist palliative care nurses (SPCN) and Macmillan Nurses were similar. Four patients felt that the SPCN was the same as the cancer specialist nurse. Five patients specifically mentioned the Macmillan nurse being available to provide hands on basic nursing and overnight care.
All participants identified end-of-life care with the term hospice. More than half did not know what a Specialist Palliative Care Unit entailed. Almost a third thought it was the same as the acute oncology ward or chemo/radiotherapy unit. Only three patients expressed their understanding of the two providing a similar role.
Conclusion There seems to be a real discrepancy between what is meant by these terms used commonly in practice and what is actually understood by patients. This raises serious issues which would benefit from further study
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