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

Problem

Good palliative care is a human right. People from ethnic minorities and low socio-economic backgrounds are less likely to receive palliative care. New ways of working through effective integration are urgently required to address inequalities and meet need. This study aimed to generate theory to guide integration of primary and palliative care and reduce inequalities.

Approach

A realist approach underpinned by existing theory of healthcare integration at interpersonal, organisational and systems level. Data collection was through two online stakeholder workshops. A topic guide explored how, when, and why inequalities can be improved through effective integration between primary and palliative care. Realist analysis led to the formulation of explanatory context(c)-mechanism(m)-outcome(o) configurations(c) (CMOCs).

Findings

Workshops were attended by 27 participants in July and September 2022: patient and public members (n=6), commissioners (n=2), clinicians and researchers from primary care (n=5) and specialist palliative care (n=14). Most were White British (n=22), other ethnicities were Asian (n=3), Black African (n=1) and British mixed race (n=1).Participants described power imbalances that hinder people from different cultures accessing current services (c). As organisations enter integrated partnerships (c), an open, shared commitment to challenging these cultural norms (m) is required at every level, including amongst organisation and system leaders. At an organisational level (c), openly addressing bias and racism (m), supporting professionals to learn about cultures beyond their own (m) and respond in the delivery of care (o), is necessary. In this environment (c), White British professionals in palliative care (the majority), can develop more self-awareness (m) and adopt allyship as an anti-racist, continual learning process (o). At a multi-disciplinary team level, co-location of professional teams from different organisations (c) and reliable record sharing (c), help to build trust (m), leading to improved communication and co-ordination of care for patients (o). Trusted relationships (c) enable patients to gain mutual understanding (m) of their uncertain situation with professionals (o). Positive experiences (c) are important to enable ongoing partnership effectiveness, providing affirmation, building confidence (m) and establishing a satisfying way of working (o). At organisational and system levels (c), leaders must understand (m) the need for investment in time with patients and promote the delivery of more culturally competent quality palliative care (o). Positive patient experiences (c) provide affirmation, grow confidence, and drive commitment (m) to more equitable palliative care (o).

Consequences

Integrated Care Boards have a statutory duty to commission palliative care services for the population. Integration of palliative care services with primary care is vital to achieve this. Integration requires a continual process of allyship, trust building, challenging cultural norms and acknowledging uncertainty at interpersonal, organisational and systems levels. Working in this way has the potential to achieve positive outcomes of more culturally competent, equitable, palliative care