A major review of palliative care services around the world has highlighted huge inconsistencies in provision, with patients in some countries receiving a fraction of the support provided elsewhere.
More than 11 million cases have been reviewed at the University of Leeds' Academic Unit of Palliative Care, which found length of care for people with life limiting and terminal conditions varies acutely across different countries - and within the countries themselves.
The researchers found:
- In the UK, cancer patients are referred to palliative care earlier than patients with other life limiting conditions, despite the need being the same among both groups
- In the United States, patients receive on average 10 days' fewer palliative care than in non-US countries
- The shortest average duration of care was six days in Australia, while the longest was 69 days in Canada
Palliative care is internationally defined as 'the active holistic care of individuals across all ages with serious health-related suffering due to severe illness and especially of those near the end of life. It aims to improve the quality of life of patients, their families and their caregivers'. Its function is to support patients and their families with needs that arise during a serious illness, months or potentially years before death.
It has been found to be most effective if introduced at least three to four months before a patient's death, when it can improve their quality of life and reduce financial costs.
But previous studies carried out into the duration of palliative care in countries around the world revealed a wide variation in length of care.
The multi-disciplinary research team led by Leeds conducted a systematic review and meta-analysis of 169 studies from 23 countries, involving 11,996,479 patients.
They found the global average length of care from initiation to the patient's death was 18.9 days. When US data was removed, the average length increased to 29 days.
Cancer patients received care for an average of 15 days, but non-cancer patients received only six days' care.
Duration of care also varied depending on the location, from 19 days in a specialist palliative care unit; 20 at home or in the community, and six days on a general hospital ward.
And countries with very high levels of development provided on average 18.91 days of care, compared with 43 days for countries at all other levels of development.
This study highlights a major challenge to human health worldwide. Our work highlights a stark shortfall in the duration of palliative care being provided internationally, with clear variation reported across countries. There is no data from low- and middle-income countries to understand at what point patients are accessing care before death - it is in these countries that provision of palliative care is most lacking.
Increased funding is essential to develop capacity, but so too is research - to determine when people are accessing palliative care and how existing services can be improved."
Dr. Matthew Allsop, University Academic Fellow, Leeds Institute of Health Sciences, co-author of the paper
The work included researchers from Hull York Medical School, and the Department of Public Health and Primary Care, Ghent University, Belgium. It was supported by National Institute for Health Research infrastructure at Leeds.
Nine UK studies were included in the analysis, covering 50,021 patients. Care lasts on average 48 days in the UK, but this varies depending on the setting. Specialist palliative care lasts nine days, whereas in the community or at home the duration is 41 days.
Some 85% of studies covering 97% of participants were from the USA, with three studies featuring more than one million participants each. Sub analysis of this data was performed, comparing it with non-US countries. The researchers found the average length of care in the US was 18.9 days - but 10 days fewer than outside it.
The report suggests this could be explained by USA models of care that restrict hospice care to patients with prognoses of fewer than six months, and have financial implications for patients.
Meanwhile, in middle income countries, the duration of palliative care was often much longer. In Brazil, the average duration was 190 days; Egypt was 66 days and Thailand 33 days. The data came from smaller samples and further research is needed to understand these findings.
Dr Allsop said: "Death affects us all. The global burden of serious health-related suffering requiring palliative care is projected to almost double by 2060 - most people either receive no palliative care, or not the amount necessary to achieve maximum benefit.
"There is a clear and significant gap between current and ideal practice, which impacts on the benefit of palliative care for patients and health care services.
"Globally palliative care needs to be highlighted as an essential component of healthcare with efforts needed to increase capacity and access to support for patients and their families."
Jordan, R.I., et al. (2020) Duration of palliative care before death in international routine practice: a systematic review and meta-analysis. BMC Medicine. doi.org/10.1186/s12916-020-01829-x.