Quality of palliative pain relief better with specialist nurses

They called on policymakers to consider how to “ensure improvements in pain management for patients at home through advice and support from community specialist palliative care services”.

“Palliative care is associated with significant benefits to people with every kind of progressive disease”

Yousuf Elmokhallalati

Overall, the researchers found that pain relief and end of life care was not being provided equally to people with advanced progressive diseases who were at home during their last three months of life.

Their study of 43,000 people who died across England was based on responses to the National Bereavement Survey (VOICES) between 2011 and 2015.

It asked families or close relatives to reflect on the quality of care provided to a person who has died during the last three months of their life.

This included whether the patient received hospice home care nurse or specialist, hospice at home service, Macmillan nurse or Marie Curie nurse?

The researchers found just 10% of patients who died of a non-cancerous disease received palliative care at home, compared to 66% of cancer patients.

The study, led by the University of Leeds, also found that those who did access palliative care at home were 2.7 times more likely to have experienced good pain relief than those who did not.

The association between good pain relief and palliative care at home occurred regardless of the type of disease that patients had, but access to palliative care was not provided equally, the study found.

Study author Dr Yousuf Elmokhallalati, from Leeds University, said: “This research shows that palliative care is associated with significant benefits to people with every kind of progressive disease, but this is not reflected in the spread of people that are being offered palliative care.

“We need to ensure that all people, whether they have cancer, heart or lung diseases, or any other life-limiting condition, are being offered appropriate support towards the end of their lives,” he said.

Published in the journal BMC Medicine and funded by the National Institute for Health Research, the study is the first to suggest significant reductions in pain for those receiving palliative care at home.

A British Medical Association report in 2016 showed that pain is the most important concern of both the public and of doctors when considering a patient who is facing a terminal illness.

The new study also suggests that patients who had planned where they wanted to die are nearly twice as likely to experience good pain relief compared to those who had not, showing the value of planning ahead and co-ordinating the support of healthcare professionals.

Only a quarter of patients were found to have recorded a preferred place of death, and cancer patients were nearly three times more likely to have a preference recorded compared to non-cancer patients – 36.6% of cancer patients versus 13.1% of non-cancer patients.

“It’s already been established that the home is the place where pain is least well controlled”

Mike Bennett

In addition, it found that the pain relief experienced by patients accessing palliative care in the home was approaching the levels of those receiving care in a hospice.

Within the full VOICES survey, 87% of patients who died in a hospice experienced good pain relief, compared with 66% of those who received palliative care support in their home, and 37.5% of those who did not receive support in their home.

Previous research by the same group in 2018 revealed inequalities in the duration of palliative care being provided to patients across England, with cancer patients referred for care around 53 days prior to death, compared with around 27 days prior for non-cancer patients.

Lead study author Professor Mike Bennett said: “It’s already been established that the home is the place where pain is least well controlled, so our findings clearly illustrate the importance of access to end of life care.

“These results, combined with our previous research, suggest that pain relief and access to palliative care is particularly poor for older patients, those with non-cancer diseases and those who live in the North of England,” he said. “These inequalities must be challenged.”