Anne M Finucane1,2, Connie Swenson3, John I MacArtney4,5, Rachel Perry5, Hazel Lamberton6, Lucy Hetherington7, Lisa Graham-Wisener8, Scott A Murray9, Emma Carduff7. 1. Marie Curie Hospice Edinburgh, 45 Frogston Road West, Edinburgh, EH10 7DR, UK. anne.finucane@mariecurie.org.uk. 2. Primary Palliative Care Research Group, Usher Institute, University of Edinburgh, Teviot Place, Edinburgh, EH8 9AG, UK. anne.finucane@mariecurie.org.uk. 3. Marie Curie Hospice Edinburgh, 45 Frogston Road West, Edinburgh, EH10 7DR, UK. 4. Unit of Academic Primary Care, University of Warwick, Gibbert Hill, Coventry, CV4 7AL, UK. 5. Marie Curie Hospice West Midlands, Marsh Lane, Solihull, B91 2PQ, UK. 6. Marie Curie Hospice Belfast, 1A Kensington Road, Belfast, BT5 6NF, UK. 7. Marie Curie Hospice Glasgow, 133 Balornock Rd, Glasgow, G21 3US, UK. 8. Centre for Improving Health-Related Quality of Life, School of Psychology, Queen's University Belfast, Belfast, BT7 1NN, UK. 9. Primary Palliative Care Research Group, Usher Institute, University of Edinburgh, Teviot Place, Edinburgh, EH8 9AG, UK.
Abstract
BACKGROUND: Specialist palliative care (SPC) providers tend to use the term 'complex' to refer to the needs of patients who require SPC. However, little is known about complex needs on first referral to a SPC service. We examined which needs are present and sought the perspectives of healthcare professionals on the complexity of need on referral to a hospice service. METHODS: Multi-site sequential explanatory mixed method study consisting of a case-note review and focus groups with healthcare professionals in four UK hospices. RESULTS: Documentation relating to 239 new patient referrals to hospice was reviewed; and focus groups involving 22 healthcare professionals conducted. Most patients had two or more needs documented on referral (96%); and needs were recorded across two or more domains for 62%. Physical needs were recorded for 91% of patients; psychological needs were recorded for 59%. Spiritual needs were rarely documented. Referral forms were considered limited for capturing complex needs. Referrals were perceived to be influenced by the experience and confidence of the referrer and the local resource available to meet palliative care needs directly. CONCLUSIONS: Complexity was hard to detail or to objectively define on referral documentation alone. It appeared to be a term used to describe patients whom primary or secondary care providers felt needed SPC knowledge or support to meet their needs. Hospices need to provide greater clarity regarding who should be referred, when and for what purpose. Education and training in palliative care for primary care nurses and doctors and hospital clinicians could reduce the need for referral and help ensure that hospices are available to those most in need of SPC input.
BACKGROUND: Specialist palliative care (SPC) providers tend to use the term 'complex' to refer to the needs of patients who require SPC. However, little is known about complex needs on first referral to a SPC service. We examined which needs are present and sought the perspectives of healthcare professionals on the complexity of need on referral to a hospice service. METHODS: Multi-site sequential explanatory mixed method study consisting of a case-note review and focus groups with healthcare professionals in four UK hospices. RESULTS: Documentation relating to 239 new patient referrals to hospice was reviewed; and focus groups involving 22 healthcare professionals conducted. Most patients had two or more needs documented on referral (96%); and needs were recorded across two or more domains for 62%. Physical needs were recorded for 91% of patients; psychological needs were recorded for 59%. Spiritual needs were rarely documented. Referral forms were considered limited for capturing complex needs. Referrals were perceived to be influenced by the experience and confidence of the referrer and the local resource available to meet palliative care needs directly. CONCLUSIONS: Complexity was hard to detail or to objectively define on referral documentation alone. It appeared to be a term used to describe patients whom primary or secondary care providers felt needed SPC knowledge or support to meet their needs. Hospices need to provide greater clarity regarding who should be referred, when and for what purpose. Education and training in palliative care for primary care nurses and doctors and hospital clinicians could reduce the need for referral and help ensure that hospices are available to those most in need of SPC input.
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