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.
The objectives of this study were to establish the extent to which UK primary care has adopted recommended practices on supportive and palliative care of adults with cancer, and to relate this to participation in national initiatives. We conducted a cross-sectional postal questionnaire survey of a random sample of UK general practices. In total, 60.0% of practices (2096 of 3495) responded to the survey: 61.5% reported involvement with the Gold Standards Framework (GSF); 24.4% with the Liverpool or other End of Life Care Pathway; 12.3%, with the Preferred Place of Care (PPC) initiative; and 8.4% with Advance Care Planning (ACP). Participation in GSF contributed most to the variance in practice organization scores; and practice organization scores contributed most to the variance in clinical care scores. Participation in ACP or PPC, and higher clinical care scores were associated with an increased likelihood of reported high rates of death at home for cancer patients. Our findings appear to support the role of national initiatives in improving the quality of end-of-life care delivery in general practice. A population-based study would be required to assess the effect of end of life care on clinical outcomes and patient or carer experience.
The most sensitive questions were highlighted, and this enabled the researchers to consider how these should be asked and responded to in subsequent versions of the measure. The measure was re-drafted in light of these comments.
The aim of this study was to explore the reasons why patients and families are referred to specialist palliative care. Semi-structured interviews were undertaken with patients and professionals from primary care and specialist palliative care services in the north of England. A content analysis of the transcripts was undertaken, key issues were identified and common themes grouped. Twelve professionals working in specialist palliative care, three GPs, six community nurses and thirteen patients were interviewed (n = 34). Five key themes are reported: reasons why patients are referred to specialist palliative care; reasons why patients are not referred to specialist palliative care; timeliness of referrals; continuity of care; and use of referral criteria. It was found that the professionals in primary care would like more training and education about how to refer patients to specialist palliative care and how to deal with issues of death and dying. The patients were generally satisfied with the service but wanted to be able to be supported at home in their final days. Further training and education may improve the knowledge of professionals who refer patients to specialist palliative care. There are currently no standardized criteria in the UK to determine when a referral should be triggered. The development of a set of standardized referral criteria may be useful in aiding a referral decision.
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