Terminally-ill patients experience significantly better quality of life before they die if they receive earlier access to palliative care, according to new research.
The study, led by the University of Leeds, set out to determine if there is an optimal point before death when a patient should start getting palliative care, when the focus switches from trying to treat disease to managing symptoms.
Research in the US suggests that should happen about six months before death. But in the UK, most advanced cancer patients only start palliative care seven weeks before they die.
The research team set out to analyse for the first time what that meant in terms of the quality of life experienced by people in their final weeks and months.
“The longer someone is exposed to palliative care, the greater the likelihood they will experience greater quality of life in the final stages of their illness.”
The study, published today in BMJ Open, was funded by Yorkshire Cancer Research and conducted by a team of researchers and clinicians led by Dr Lucy Ziegler from the Academic Unit of Palliative Care at Leeds.
They analysed the records of 2,479 adult cancer patients in Leeds who died over a two year period up to February 2012 to determine the best time for patients to start receiving palliative care services.
Key measures of quality of life
The researchers assessed whether the patients were referred to specialist cancer services and if so, how close to their death that happened. They looked for statistical associations between the duration of palliative care and key indicators of quality of life for terminally ill patients.
Those indicators were: avoiding a hospital death – dying instead at home, in a hospice or residential care home; avoiding emergency admission to hospital; getting access to powerful painkilling medication; and avoiding aggressive anti-cancer treatments in the final weeks and months of life.
The researchers found that patients who experienced even short periods of palliative care saw some benefits.
People who experienced just two weeks of palliative care before their death were more likely to avoid dying in hospital. Although some patients need hospital-level care before they die, many do not.
If palliative care started four weeks before death, patients were also more likely to avoid being admitted to hospital in an emergency. Emergency admissions often happen because of a breakdown in care. Those patients were also more likely to have greater access to powerful pain killers.
Those patients whose palliative care started eight months before they died were more likely to avoid aggressive anti-cancer treatments such as chemotherapy in the final stages of their life.
One of the surprising issues to emerge from the study was that one in three patients was not referred to specialist palliative care services.
Dr Ziegler said it was possible some of those patients may have received palliative care from their GP or oncology team, but there would be others who could have benefited from specialist palliative care but did not receive it.
Difficult conversations
The research raises wider questions about why some patients are failing to get timely palliative care.
One of the problems, Dr Ziegler believes, is that it is often very difficult for doctors to start a conversation with patients about palliative care.
She said: “Having access to palliative care even relatively late in a patient’s life can be beneficial, but the earlier the care starts, the better. The longer someone is exposed to palliative care, the greater the likelihood they will experience greater quality of life in the final stages of their illness.
“When to make that referral depends on an accurate prognosis of a patient’s condition – predicting how long a patient has got left to live is very difficult, and not all patients want to be provided with an estimation of their life expectancy.”
Dr Kathryn Scott, Chief Executive at Yorkshire Cancer Research, said: “This research clearly demonstrates the importance of early access to palliative care and the huge effect this can have in ensuring cancer patients are comfortable and have the best possible experience at the end of their lives.
“This type of research has been massively underfunded in the past and we are very proud to be helping to close this gap in Yorkshire thanks to the generosity of our supporters.”
Dr Ziegler is building on this latest research with the help of a £249,000 grant from the National Institute of Health Research (NIHR) with a project called STEP which will look at ways of training doctors so they feel able to raise the issue of palliative care with their patients earlier in their treatment.
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