Project

Who is (not) referred for hospice care? A systematic literature review and narrative synthesis – PEOLC01

Inequalities in access to hospice care is a source of considerable concern. This study seeks to 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 socio-economic status.

 

Summary

Inequalities in access to hospice care is a source of considerable concern; white, middle-class, middle-aged, cancer patients have traditionally been over-represented in hospice populations.

Project aims

This study has undertaken a systematic review and narrative synthesis of the literature concerning the demographic characteristics of those who access hospice care more often, focusing on; diagnosis, age, gender, marital status, ethnicity, geography and socio-economic status.

Project activity

An extensive literature search demonstrates persistent inequalities in hospice care provision: non-cancer patients, 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.

Barriers 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. 

Potential or actual impact

This study is now completed, with the paper published in February 2021.

The key findings have been presented at several national conferences.

Papers/resources associated with this study 

Tobin J, Rogers A, Winterburn I, Tullie S, Kalyanasundaram A, Kuhn I, Barclay S.  (Feb 2021)

“Hospice care access inequalities: a systematic review and narrative synthesis”.

BMJ Supportive and Palliative Care: 0 ; 1–10. doi.org/10.1136/bmjspcare-2020-002719

Next step 

A new study, further investigating inequalities in access to hospice care, is currently under development.

Researchers and Institutions

Professor Stephen Barclay, Isaac Winterburn, Dr Jake Tobin, Dr Alice Rogers, Dr Sebastian Tullie, Dr Asanish Kalyanasundaram A, Isla Kuhn, University of Cambridge

Contact

Professor Stephen Barclay

Sigb2@medschl.cam.ac.uk