Integration of primary care and palliative care services to improve equality and equity at the end-of-life: Findings from realist stakeholder workshops

Sarah Mitchell; Nicola Turner; Kate Fryer; Justin Aunger; Jude Beng; Emilie Couchman; Isabel Leach; Joanne Bayly; Clare Gardiner; Katherine E Sleeman; Catherine J Evans

doi:10.1177/02692163241248962

Integration of primary care and palliative care services to improve equality and equity at the end-of-life: Findings from realist stakeholder workshops

Palliat Med. 2024 May 11:2692163241248962. doi: 10.1177/02692163241248962. Online ahead of print.

Authors

Sarah Mitchell¹, Nicola Turner², Kate Fryer³, Justin Aunger⁴, Jude Beng³, Emilie Couchman⁵, Isabel Leach³, Joanne Bayly^{6

7}, Clare Gardiner⁵, Katherine E Sleeman⁷, Catherine J Evans^{7

8}

Affiliations

¹ Division of Primary Care, Palliative Care and Public Health, Leeds Institute of Health Sciences, University of Leeds, Leeds, UK.
² University of Nottingham School of Health Sciences, University of Nottingham, Queen's Medical Centre, Nottingham, UK.
³ Academic Unit of Primary Medical Care, University of Sheffield, Sheffield, UK.
⁴ NIHR Midlands Patient Safety Research Collaboration, Murray Learning Centre, University of Birmingham, Birmingham, UK.
⁵ Health Sciences School, University of Sheffield, Sheffield, UK.
⁶ St Barnabas Hospices, Worthing, UK.
⁷ Cicely Saunders Institute of Palliative Care, Policy & Rehabilitation, Florence Nightingale Faculty of Nursing, Midwifery and Palliative Care, Kings College London, London, UK.
⁸ Sussex Community NHS Foundation Trust, Crawley, UK.

PMID: 38733139
DOI: 10.1177/02692163241248962

Abstract

Background: Inequalities in access to palliative and end of life care are longstanding. Integration of primary and palliative care has the potential to improve equity in the community. Evidence to inform integration is scarce as research that considers integration of primary care and palliative care services is rare.

Aim: To address the questions: 'how can inequalities in access to community palliative and end of life care be improved through the integration of primary and palliative care, and what are the benefits?'

Design: A theory-driven realist inquiry with two stakeholder workshops to explore how, when and why inequalities can be improved through integration. Realist analysis leading to explanatory context(c)-mechanism(m)-outcome(o) configurations(c) (CMOCs).

Findings: A total of 27 participants attended online workshops (July and September 2022): patient and public members (n = 6), commissioners (n = 2), primary care (n = 5) and specialist palliative care professionals (n = 14). Most were White British (n = 22), other ethnicities were Asian (n = 3), Black African (n = 1) and British mixed race (n = 1). Power imbalances and racism hinder people from ethnic minority backgrounds accessing current services. Shared commitment to addressing these across palliative care and primary care is required in integrated partnerships. Partnership functioning depends on trusted relationships and effective communication, enabled by co-location and record sharing. Positive patient experiences provide affirmation for the multi-disciplinary team, grow confidence and drive improvements.

Conclusions: Integration to address inequalities needs recognition of current barriers. Integration grounded in trust, faith and confidence can lead to a cycle of positive patient, carer and professional experience. Prioritising inequalities as whole system concern is required for future service delivery and research.

Keywords: Palliative care; general practice; health care facilities; manpower; primary care; realist research; services; terminal care.