Hospice care access inequalities: a systematic review and narrative synthesis

Abstract

BackgroundInequalities in access to hospice care is a source of considerable concern; white, middle-class, middle-aged patients with cancer have traditionally been over-represented in hospice populations.ObjectiveTo identify from the literature the demographic characteristics of those who access hospice care more often, focusing on: diagnosis, age, gender, marital status, ethnicity, geography and socioeconomic status.DesignSystematic literature review and narrative synthesis.MethodSearches of Medline, PsycINFO, CINAHL, Web of Science, Assia and Embase databases from January 1987 to end September 2019 were conducted. Inclusion criteria were peer-reviewed studies of adult patients in the UK, Australia, New Zealand and Canada, receiving inpatient, day, outpatient and community hospice care. Of the 45 937 titles retrieved, 130 met the inclusion criteria. Narrative synthesis of extracted data was conducted.ResultsAn extensive literature search demonstrates persistent inequalities in hospice care provision: patients without cancer, the oldest old, ethnic minorities and those living in rural or deprived areas are under-represented in hospice populations. The effect of gender and marital status is inconsistent. There is a limited literature concerning hospice service access for the LGBTQ+ community, homeless people and those living with HIV/AIDS, diabetes and cystic fibrosis.ConclusionBarriers of prognostic uncertainty, institutional cultures, particular needs of certain groups and lack of public awareness of hospice services remain substantial challenges to the hospice movement in ensuring equitable access for all.

Exploring Socioeconomic Inequities in Access to Palliative and End-of-life Care in the Uk: A Mixed Methods Narrative Synthesis

“…While acknowledging a global pattern towards socioeconomic inequities in use of palliative care, others have also noted the considerable number of studies that nd no evidence of differences (12). Examining the relationship between study design and ndings, this review identi ed no strong trends in the UK evidence that point towards methodological reasons for differences in ndings relating to receipt of care.…”

“…Additionally, studies that only considered place of death were excluded. While other studies have included place of death as an indicator of access (12), and there is some evidence to suggest use of specialist palliative care may help mitigate the effect of socioeconomic position on place of death (29), place of death is a potentially misleading indicator of access. This is because of the diversity in individual patients' preferences for dying at home (30), challenging the assumption that all deaths in hospital indicate poor access to care.…”

“…Most research on socioeconomic inequities in accessing palliative and end-of-life care examines differences in receipt of care, often indicating an association between socioeconomic disadvantage and a lower likelihood of receiving specialist palliative care (10)(11)(12)(13). Conversely, use of hospital-based care in the last year of life tends to be higher for those in a more disadvantaged socioeconomic position, with poorer health likely accounting for some of this use (8,14,15).…”

Understanding the impact of the Covid-19 pandemic on delivery of rehabilitation in specialist palliative care services: An analysis of the CovPall-Rehab survey data

“…Digital models of care that extend reach and meet increased demand are promising ventures in reshaping and re-envisioning future rehabilitation towards more sustainable forms of palliative care. However, it is important that research and community engagement underpin these shifts to ensure that hybrid models are developed and delivered in equitable, culturally congruent, and person-centred ways that do not perpetuate already existing, or create new forms of, inequities in palliative care 39 . Studies should build on evidence for remote rehabilitation in cancer 46, 47 and chronic respiratory disease 48 , with robust and theoretically informed studies of digital health interventions in palliative care.…”

Access to palliative care: the primacy of public health partnerships and community participation

“…A review of hospice-patient care in the UK, Australia, New Zealand, and Canada found that older people (aged ≥85 years), ethnic minorities, people with non-cancer illnesses, and people living in rural locations or areas of social deprivation had unequal access to palliative care. 4 We declare no competing interests.…”