Terminally ill patients are being denied consistent standards of care despite attempts to improve treatment, new research has found.
People who die of frailty or organ failure are less likely to be given care planning before death than those dying of cancer, and there are major variations between GP practices, according to a study led by Edinburgh University. Around 60 per cent of patients are getting some form of care planning before death, but poor communication, fear and lack of training for healthcare professionals continue to be a problem.
Lead author Professor Scott Murray, of Edinburgh University’s Primary Palliative Care Research Group said: “People need to talk more about the end of life and it seems there is a branding problem around palliative care. It is not cure or care. The idea is we should be doing both. We need to be talking to people much earlier about what they want.”
Using GP records from more than 600 deceased Lothian patients, the team measured how many patients had a vital electronic record, known as a Key Information Summary (KIS), where GPs can record people’s preferences and share them with hospital staff or ambulance workers.
While three-quarters of patients who died with cancer and 66 per cent of those with dementia and frailty had this record, only 40 per cent of patients who died with organ failure had their preferences recorded. Patients with this record were more likely to die outside of hospital, which is seen as a marker of good end-of-life care.
The figures varied widely between practices, with 92 per cent of patients in one to just 36 per cent in another, said the study, published in BMJ Supportive & Palliative Care journal.
Prof Murray, who works as a GP in Newington, Edinburgh, called for greater consistency across all healthcare settings.
Previous analysis found that nearly 11,000 people who need palliative care in Scotland each year were not accessing it. Ministers have since pledged £3.5 million to ensure everyone can have the death they want.
Dr Anne Finucane, co-author and Marie Curie Hospice Edinburgh Research Lead, said: “We know that many healthcare professionals feel awkward having conversations about the future with people who have a serious chronic condition or terminal illness. However, these discussions are important in ensuring that preferences and wishes are known and shared.”
Peter McLoughlin, Strategic Planning Manager at NHS Lothian, said: “This study shows we’re moving in the right direction, with more people supported earlier in their pathway of care.”