Many patients nearing the end of their lives are not receiving the care and support they need because of a lack of training for health professionals, including nurses, a new report has warned.
In particular, the report by the charity Marie Curie highlights the need to end what experts have described as “a diagnosis lottery”, where people with conditions such as heart failure, dementia and multiple sclerosis are less likely to receive good end of life care than those with cancer.
Each year about 110,000 people in the UK don’t get the palliative care they need, said the Triggers for Palliative Care report, which concluded that many miss out because healthcare professionals were failing to identify care needs early enough if at all.
“Healthcare professionals simply don’t receive enough training to be able to recognise when someone needs palliative care or when someone is dying”
Dr Jane Collins
“Palliative care can benefit people with many different illnesses and at different times in those illnesses,” said Marie Cure chief executive Dr Jane Collins.
“Yet healthcare professionals simply don’t receive enough training to be able to recognise when someone needs palliative care or when someone is dying,” she said.
Claire Henry, chief executive of the National Council for Palliative Care, said it was “unacceptable” so many terminally ill people were being denied care and support that could make all the difference in their final months, weeks and days.
“People need to have meaningful choices about their end of life care but this will only happen with a greater awareness of how palliative care can help across a range of conditions,” she said.
“It is wrong and unfair that we have a diagnosis lottery where the quality of care you receive depends on which illnesses you have,” she added.
“It is wrong and unfair that we have a diagnosis lottery where the quality of care you receive depends on which illnesses you have”
A Marie Curie-commissioned survey of 500 clinical professionals, including specialist nurses working in cancer and hospice care, found nearly 40% said lack of relevant experience among staff was hampering efforts to provide the best care to terminally ill people.
More than half – 55% – said better identification of illnesses as terminal was a very important factor in improving care.
The report stressed that all nurses have a role to play in palliative care with district nurses and ward nurses routinely providing care for people nearing the end of their lives.
It also highlighted the vital role of specialist nurses in providing and co-ordinating care. However, specialist nurses can face challenges including a lack of understanding from other healthcare professionals about the role of palliative care, said the report.
For example, an investigation by the British Heart Foundation and Marie Curie into the innovative role of heart failure palliative care nurse specialist found “the attitudes of other professionals constituted a significant obstacle to arranging care”.
To co-incide with its report, Marie Curie has written to all NHS nursing and medical directors across the UK to urge them to improve access to palliative care for everyone in their hospitals – both people with cancer and other conditions.
This includes ensuring all staff know how to refer to palliative care teams. The charity is also pushing for mandatory undergraduate and ongoing training for all health and social care professionals working with those who are dying.
The important role of specialist nurses must also be recognised and supported, stresses the report.
“Health bodies should ensure their palliative care strategies and service delivery plans recognise the important role that can be played by disease specific nurse specialists,” said the report.
“These should include what steps will be taken to ensure nurse specialists receive training and support to enable them to deliver palliative care,” it stated.
“Far too many people are still dying in hospital when they want to die at home”
The Royal College of Nursing said it supported the report’s call for better training for staff but also highlighted the need to ensure services were in place so people’s dying wishes could be met.
“Far too many people are still dying in hospital when they want to die at home and investment in district nursing services is urgently needed,” said RCN general secretary and chief executive Peter Carter.
“Nurses need time to listen to what the dying person wants, experience to recognise their fears and anxieties and training to help loved ones to understand what is happening,” he said.
“These new guidance documents are the result of some determined work by the RCN’s members who are absolutely committed to improving are for the dying,” said Mr Carter.
“Nursing staff know there is a huge amount that can be done and these resources will help staff deliver the best quality care whether they treat dying patients every day or only infrequently,” he said.