Adults with some incurable diseases are not receiving palliative care from hospices early enough during their illness because of the timing of referrals from other services according to researchers.
Those with conditions like dementia, liver failure and stroke tended to be referred significantly later than cancer patients, according to findings from the first national survey of its kind. In addition, it found older patients and those in the North of England were more likely to be referred later to hospices.
“Palliative care is for any person diagnosed with a terminal illness, not just those with cancer”
Looking at the numbers of days from when patients were referred to hospice services to when they died, researchers found notable differences depending on their type of disease, age and location.
The University of Leeds study looked at referrals to hospice care based on data from 64 hospices providing inpatient beds and community services, representing around a third of those in the UK.
It examined the records of over 42,000 people who died in 2015 with a progressive, advanced disease, after receiving community or inpatient palliative care from one of the hospices involved.
The study found that cancer patients were referred for hospice care around 53 days prior to death, while for “non-cancer” patients referral happened around 27 days prior.
It also found that older patients tended to receive less hospice care, with patients aged under 50 years receiving 78 days, compared to 59 days for 50-75-year-olds and 39 days for patients over 75.
“The research is a significant step in helping to understand why people are not being referred for hospice care early enough”
Conducted in collaboration with the charity Hospice UK, the study also found significant regional variations in terms of referrals for hospice care, with a clear North-South divide in England.
In general, patients in the North were referred to hospice care around 35 days before death, compared with 55 days for the South and 55 days for the Midlands and East.
Based on previous trials, the researchers noted that patients with progressive diseases should be referred for palliative care between three and six months before they died to benefit fully.
However, they noted that hospices had limited control over the referrals they received from other health services, which could lead to patients being referred late or not at all.
The UK is recognised as an international leader for the quality of its palliative care services but their research showed that many people were not accessing palliative care early enough, they said.
Dr Matthew Allsop
Lead study author Dr Matthew Allsop said: “There are misconceptions held by the public and healthcare professionals about what palliative care is, who it is for, and when people can benefit from access to it.
“Palliative care is for any person diagnosed with a terminal illness, not just those with cancer,” said Dr Allsop, who is a fellow at the St Gemma’s Academic Unit of Palliative Care at Leeds University.
“We know that people have a better quality of life if they are referred for palliative care early, but our findings suggest that this is not happening in a majority of cases,” he said. “A large number of patients are accessing palliative care in the last weeks of life.
“Where access is happening, we found that younger patients and those with cancer are receiving the longest duration of care. This is in contrast to an ageing population and the rising number of people with conditions such as dementia who could benefit from palliative care,” he said.
Dr Allsop said the new study findings revealed the need for “more effective mechanisms to make palliative care accessible for all”.
Study co-author Dr Sarah Russell, head of research at Hospice UK, said: “Our research shows that many people who could benefit from inpatient and community hospice care are not being referred early in their illness.”
She said: “The research from 64 hospices is a significant step in helping us to understand the reasons why people are not being referred for hospice care early enough and how we can address these.
Sarah Russell from Hospice UK
“Tackling the issues about the timing of referrals is crucial, to ensure that people with life-limiting conditions get the vital support they need,” she added.
To enable the hospices in the study to further examine their referral patterns, they are being given tailored confidential feedback on the data they submitted, as well as comparisons against the national and regional averages, noted the researchers.
The study was funded by the National Institute for Health Research (NIHR) and published today in the journal Palliative Medicine.