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Systematic review of the problems and issues of accessing specialist palliative care by patients, carers and health and social care professionals
N Ahmed
J E Bestall
S H Ahmedzai
Academic Palliative Medicine Unit, Division of Clinical Sciences (South), University of Sheffield, Sheffield, UK
S A Payne
Palliative and End-of-life Care Research Group, University of Sheffield, Sheffield, UK
D Clark
Institute for Health Research, Lancaster University, Lancaster, UK
B Noble
Academic Palliative Medicine Unit, University of Sheffield, Sheffield, UK
Objectives: To determine the problems and issues of accessing specialist palliative care by patients, informal carers and health and social care professionals involved in their care in primary and secondary care settings. Data sources: Eleven electronic databases (medical, health-related and social science) were searched from the beginning of 1997 to October 2003. Palliative Medicine (January 1997–October 2003) was also hand-searched. Study selection: Systematic search for studies, reports and policy papers written in English. Data extraction: Included papers were data-extracted and the quality of each included study was assessed using 10 questions on a 40-point scale. Results: The search resulted in 9921 hits. Two hundred and seven papers were directly concerned with symptoms or issues of access, referral or barriers and obstacles to receiving palliative care. Only 40 (19%) papers met the inclusion criteria. Several barriers to access and referral to palliative care were identified including lack of knowledge and education amongst health and social care professionals, and a lack of standardized referral criteria. Some groups of people failed to receive timely referrals e.g., those from minority ethnic communities, older people and patients with nonmalignant conditions as well as people that are socially excluded e.g., homeless people. Conclusions: There is a need to improve education and knowledge about specialist palliative care and hospice care amongst health and social care professionals, patients and carers. Standardized referral criteria need to be developed. Further work is also needed to assess the needs of those not currently accessing palliative care services.
Key Words: access • barriers • obstacles • referral • specialist palliative care
Palliative Medicine, Vol. 18, No. 6,
525-542 (2004)
DOI: 10.1191/0269216304pm921oa
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