National survey of the current provision of specialist palliative care services for patients with end-stage renal disease

Abstract

Patients with end-stage renal disease (ESRD) experience a significant symptom burden and have complex needs. However, involvement of specialist palliative care (SPC) services with these patients has previously been shown to be limited. This study assesses the current provision of and access to SPC services for ESRD patients in the UK and considers how the provision has evolved over recent years. A questionnaire was sent to the lead clinician for all UK adult hospital, hospice and community SPC services, identified from the Hospice and Palliative Care Directory 2008. Non-responders were mailed again after 5 weeks. Descriptive statistics and qualitative thematic analysis were performed. Three hundred and eighteen of 611 (52%) questionnaires were returned. Ninety-six per cent stated that SPC services have a role in caring for patients with ESRD. Two hundred and eighty-one of 318 (88%) accepted referrals, and 185 of 281 (66%) reported that 'none or few were referred'. Only 7% and 17% of respondents used specific ESRD referral and treatment guidelines, respectively; whereas 79% used the Liverpool Care Pathway for the Dying Patient. Seven per cent undertook joint renal and SPC multi-disciplinary team (MDT) meetings, and 3% held joint out-patient clinics. Forty percent of respondents proposed initiatives to improve palliative care for ESRD patients, with mutual education and collaborative working being key themes for improvement. The majority of SPC services accept ESRD patients, but limited numbers are referred. Respondents indicated that this barrier could be addressed by closer collaboration and better communication and education between renal and SPC services. Other initiatives to enable delivery of SPC to increased numbers of ESRD patients include the use of specific referral and clinical care guidelines and expansion of joint MDT meetings and out-patient clinics.