Who is the key worker in palliative home care?

Objective. Palliative home care involves coordination of care between the professionals involved. The NICE guideline on supportive and palliative care (UK) recommends that teams, regardless of their base, should promote continuity for patients. This may involve nomination of a coordinating "key worker". This study aimed to explore who acts as key worker and who ought to take on this role in the views of patients, relatives, and primary care professionals. Furthermore, it aimed to explore the level of agreement on this issue between study participants. Design. Interview and questionnaire study. Setting. Former County of Aarhus, Denmark (2008-2009). Subjects. Ninety-six terminally ill cancer patients, their relatives, general practitioners (GPs), and community nurses (CNs). Main outcome measures. Actual key worker as valued by patients, relatives, and primary care professionals; ideal key worker as valued by patients and relatives. Results. Patients, relatives, GPs, and CNs most often saw themselves as having been the key worker. When asked about the ideal key worker, most patients (29%; 95% CI: 18; 42) and relatives (32%; 95% CI: 22; 45) pointed to the GP. Using patients' views as reference, we found very limited agreement with relatives (47.7%; k = 0.05), with GPs (30.4%; k = 0.01) and with CNs (25.0%; k = 0.04). Agreement between patients and relatives on the identity of the ideal key worker was of a similar dimension (29.6%; k = 0.11). Conclusion. Poor agreement between patients, relatives, and professionals on actual and ideal key worker emphasizes the need for matching expectations and clear communication about task distribution in palliative home care.