Persistent inequalities in hospice care provision have been revealed in a study of the demography of hospice populations carried out at the University of Cambridge. The figures, drawn from a systematic review of literature on the characteristics of hospice populations in the UK and other countries with similar healthcare models, show that certain groups have unequal access to hospice care. Patients without cancer, the ‘oldest old’ people, patients from ethnic minorities and those living in rural or deprived areas are all under-represented in hospice services, which aim to provide excellence in palliative and end of life care.
Hospices were originally set up to care for patients with cancer. They now aim to serve people with non-cancer diagnoses as well, yet the vast majority of their patients remain those with cancer diagnoses. In 2019, 28% of deaths in England and Wales were from cancer, yet in hospices, cancer accounted for 85% of deaths.
While many more people receive hospice care than die there, the new research shows that patients with cancer remain disproportionately served by hospice care and explores the characteristics of patients in hospices.
The authors found that people with heart failure, respiratory disease, renal and liver failure, mental health, learning disability, dementia and neurodegenerative disease were all under-represented, although motor neuron disease was an exception.
It tends to be much easier for clinicians to assess when cancer patients are nearing the end of life and this means their needs suit time-limited hospice care. The needs of people with other conditions may be prolonged compared with cancer patients and the dying phase is more uncertain. However, in line with hospice efforts to broaden their intake beyond cancer patients, the team did find evidence that this cancer/non-cancer gap is reducing and people with non-cancer illnesses are starting to get better access to hospice places in Australia, Canada and the UK.
Meanwhile, in the UK, some ethnic minority groups, including Pakistani, Bangladeshi and Indian groups. Caribbean, Chinese and African ethnic minorities also appeared less likely to access hospice services. The researchers point out that this may sometimes reflect care preferences and choices and suggest that greater focus on the needs of minority groups and their involvement in service co-design is required.
Where people live also makes a difference: people living in rural areas, further from local hospices, were less well represented and there were indications that hospice access was less likely for those living in deprived areas.
Greater access to hospice care by people in more affluent groups may in part reflect their greater health literacy and the presence of articulate relatives who can advocate for hospice services they know to be available,”
– Professor Stephen Barclay, lead author
The new research, from the Primary Care Unit, was carried out by medical students Jake Tobin, Alice Rogers, Sebastian Tullie and Asanish Kalyanasundaram at the School of Clinical Medicine, working with research assistant Isaac Winterburn, information scientist Isla Kuhn and Professor Stephen Barclay. The research was funded by the NIHR Applied Research Collaboration East of England (ARC EoE).
J Tobin, A Rogers, I Winterburn, S Tullie, A Kalyanasundaram, I Kuhn, S Barclay, Hospice care access inequalities: a systematic review and
narrative synthesis, in BMJ Supportive & Pall Care, 19 Feb 2021, http://dx.doi.org/10.1136/bmjspcare-2020-002719