National survey of palliative care in end-stage renal disease in the UK

Background. Palliative care for patients with end-stage renal disease (ESRD) is a neglected aspect of nephrology. We carried out this survey to establish the current pattern of provision of palliative care for ESRD in the UK. Methods. An anonymous but numbered questionnaire concerning local palliative care provision was sent to clinical directors of all 69 UK renal units. Results. All the questionnaires were returned. Only 27 (39%) units employ nursing or Professions Allied to Medicine (PAM) staff with palliative care for ESRD patients as a specified part of their role. In 19 of these units, staff spend <4h per week concerned with palliative care and only five units have staff working for >12h a week in this role. Fifty-five (80%) units do not have a written protocol for palliative care. Anaermic ESRD patients with an expected survival of >3 months receive blood transfusion in 59 (86%) units, intravenous iron in 61 (88%) units and erythropoletin in 63 (91%) units. Only 37 (54%) units kept a record of patients seen by the unit staff but deemed not suitable for dialysis. Conclusion. There is a significant variation in provision of palliative care services across the UK. In some areas, access to palliative care is restricted to patients with malignant disease, and ESRD patients are excluded.