If not home, where? Implementing an innovative model of care as an alternative place of care & death for patients living in an area of high socio-economic deprivation. Short-report on opening a long-term palliative care unit

Background: Healthcare professionals and policy makers often view home as the most appropriate place of care and death for patients. However, this makes assumptions about what home is like and does not account for high levels of complexity experienced by patients from areas of high socioeconomic deprivation. Alternative models of care should be explored to provide equitable care for this patient group. Aims: To describe the development of a new innovative model of care, a long-term palliative care unit. Design: Description of the model, with secondary analysis of retrospective routinely gathered data. Setting: Hartlepool in North-East England, includes some of the most socio-economically deprived areas in England, with associated high-levels of multimorbidity. In 2014, the eight-bedded hospice, opened an additional 10-bedded long-term unit. Results: Within 7 years, 199 patients were admitted to the long-term unit. With 98% remained there until death. All patients were offered a full holistic assessment and advance care planning, with 24/7 access to specialist palliative care support. None were transferred to hospital. In general, patients from socio-economically deprived areas are less likely to access hospice care, however, 27% of all admissions to the long-term unit were from areas in the 10% most deprived in England (with 41% admitted from areas in the poorest quintile). Conclusion: We suggest that this model has been a valuable asset in providing an alternative place to home, enabling patients to receive high-quality care towards end of life. Further research is needed to hear directly from patients about their experiences.

[1]  N. Cherny,et al.  Burnout, compassion fatigue, and moral distress in palliative care , 2021, Oxford Textbook of Palliative Medicine.

[2]  S. Cohn,et al.  Placing death and dying: Making place at the end of life. , 2021, Social science & medicine.

[3]  S. Barclay,et al.  Hospice care access inequalities: a systematic review and narrative synthesis , 2021, BMJ Supportive & Palliative Care.

[4]  Kia-Chong Chua,et al.  Socioeconomic position and use of hospital-based care towards the end of life: a mediation analysis using the English Longitudinal Study of Ageing , 2021, The Lancet. Public health.

[5]  M. Gott,et al.  The impact of poverty and deprivation at the end of life: a critical review , 2021, Palliative care and social practice.

[6]  S. Murray,et al.  What makes palliative care needs “complex”? A multisite sequential explanatory mixed methods study of patients referred for specialist palliative care , 2020, BMC Palliative Care.

[7]  S. Barclay,et al.  Persistent inequalities in Hospice at Home provision , 2020, BMJ Supportive & Palliative Care.

[8]  I. Higginson,et al.  Socioeconomic position and use of healthcare in the last year of life: A systematic review and meta-analysis , 2019, PLoS medicine.

[9]  C. Gardiner,et al.  Predictors of patient-related benefit, burden and feeling safe in relation to hospital admissions in palliative care: A cross-sectional survey , 2018, Palliative medicine.

[10]  S. Payne,et al.  Palliative Care Development in European Care Homes and Nursing Homes: Application of a Typology of Implementation , 2017, Journal of the American Medical Directors Association.

[11]  C. Gardiner,et al.  The ‘problematisation’ of palliative care in hospital: an exploratory review of international palliative care policy in five countries , 2016, BMC Palliative Care.

[12]  S. Barclay,et al.  Do Patients Want to Die at Home? A Systematic Review of the UK Literature, Focused on Missing Preferences for Place of Death , 2015, PloS one.

[13]  K. Pollock Is home always the best and preferred place of death? , 2015, BMJ : British Medical Journal.

[14]  L. Deliens,et al.  Choosing care homes as the least preferred place to die: a cross-national survey of public preferences in seven European countries , 2014, BMC Palliative Care.

[15]  K. Chalkidou About the National Institute for Health and Care Excellence - NICE. , 2013, Acta medica portuguesa.

[16]  Nicholas A. Christakis,et al.  Oxford Textbook of Palliative Medicine , 2011 .

[17]  I. Higginson,et al.  Local preferences and place of death in regions within England , 2011 .

[18]  P. Davidson,et al.  Dying in the margins: understanding palliative care and socioeconomic deprivation in the developed world. , 2011, Journal of pain and symptom management.

[19]  C. Chew‐Graham,et al.  Patterns of access to community palliative care services: a literature review. , 2009, Journal of pain and symptom management.

[20]  P. Dimitrijevic End of Life Care Strategy , 2008 .

[21]  I. Higginson,et al.  Place of care in advanced cancer: a qualitative systematic literature review of patient preferences. , 2000, Journal of palliative medicine.

[22]  Carol L. Davis,et al.  Oxford Textbook of Palliative Medicine , 1994, British Journal of Cancer.