The modern hospice movement has its roots in end-of-life care for patients with cancer. While hospices have traditionally mainly cared for white, middle-class clients with cancer, efforts have been made to be more inclusive of those with non-cancer diagnoses and other underserved groups.
Tobin and colleagues (2022) conducted a literature review to better understand the demographic characteristics of those who access hospice care. They systematically reviewed the peer-reviewed literature concerning referral to or receipt of hospice care with regards to eight characteristics: diagnosis and comorbid conditions; age; gender and sexuality; marital status; ethnicity and religion; geographical factors including rurality and distance to hospice; and socioeconomic factors and other characteristics.
The literature review included 130 papers from UK, Australia, New Zealand and Canada, describing clients receiving inpatient, day, outpatient and community hospice care. Included papers were published between 1987 and 2019 and included empirical data. Papers describing hospice care for those under 18 years old were excluded.
The review confirmed that inequalities in access to hospice persist, with patients without cancer, the oldest old, ethnic minorities and those living in rural or deprived areas are under-represented in hospice populations. Further, Indigenous populations are less likely to receive hospice care while no papers were identified concerning LGBTQ+ populations, transgender patients or sexuality of couples.
Tobin and colleagues explored some potential factors influencing the findings. The authors suggest that the more predictable trajectory of death for cancer patients allows for timelier referral to inpatient hospice. It was suggested that greater prognostic uncertainty for patients with chronic heart disease, dementia or frailty may contribute to late or no hospice referral, perpetuating inequalities in access for these populations.
The authors also suggest that the unique end-of-life care needs of some groups might be better met in other settings. For example, the care needs of the oldest-old with frailty and dementia might be better addressed in non-hospice settings. Some Indigenous communities value connection to the land and community at end-of-life, suggesting that hospice outside of the community might not be appropriate. While the inequities in use of hospice might reflect a preference of some groups, the authors suggest that social prejudice concerns of LGBTQ+ groups might affect access to hospice care. In general, the authors call for a greater focus on understanding and addressing the needs of groups that aren’t accessing hospice and involving these groups in co-design of service.
Tobin, J., Rogers, A., Winterburn, I., Tullie, S., Kalyanasundaram, A., Kuhn, I., & Barclay, S. (2022). Hospice care access inequalities: a systematic review and narrative synthesis. BMJ Supportive & Palliative Care, 12(2), 142-151.