National standards for palliative and end-of-life care are needed after a report revealed stark discrepancies in services across England.
It found that some health trusts only budgeted for as little as 14p a day for each patient needing palliative care.
The study, led by House of Lords crossbencher Baroness Finlay of Llandaff, a Welsh doctor and professor of palliative medicine, says people face a postcode lottery when it comes to care during their final days.
The study, in the journal BMJ Supportive and Palliative Care, found that clinical commissioning groups (CCGs) are using different measures when they decide on what services to offer. It also points to confusion about who is responsible for providing end-of-life care.
As a result, out-of-hours services rely heavily on hospices rather than the NHS, it says.
"Overall there has been great dependence on palliative care charity sector providers, which may have allowed some largely to leave it up to the voluntary sector," Baroness Finlay tells us.
The 2012 Health and Social Care Act charged CCGs with providing palliative and end-of-life services.
'Let Down by the System'
But some investigations have identified failings in the system.
In 2015, a report by the Parliamentary and Health Service Ombudsman found that too many people approaching the end of their life, and their loved ones, were being let down by the system.
The report, 'Dying without Dignity' found deficiencies in the system were:
• Not recognising that people are dying, and not responding to their needs
• Poor symptom control
• Poor communication
• Inadequate out-of-hours services
• Poor care planning
• Delays in diagnosis and referrals for treatment
The latest study set out to assess end-of-life care by using freedom of information requests to ask all 209 CCGs in England to explain their commissioning system.
The researchers say that:
• Only 29 CCGs provided information about the number of patients with palliative care needs in their population
• CCGs had budgets ranging from £51.83 to £2,329.19 per patient per year for palliative care services
• Of 204 CCG respondents, 83% commission 7-day specialist palliative care services in patients' own homes, but out-of-hours services rely heavily on hospice-led services
• 31% commission pain control teams, but the majority of these only operate in regular working hours
The study concludes that "the provision of specialist palliative care is in need of a national framework to ensure that patients achieve good end-of-life care everywhere".
It recommends the Welsh Palliative Care Strategy as a best practice model in which specialist staffing levels have been determined within available funding, and a dedicated number of palliative care beds ensure there is fair access to palliative care 7 days a week.
Baroness Finlay says: "A national standard of provision across 7 days in hospitals and in the community would ensure that people know they can access care when and where they need it, which would be very reassuring to those who are terminally ill."
In an emailed response, Professor Bee Wee, NHS England’s national clinical director for end of life care, says: "International comparisons rate the UK as the best country in the world for end of life care, and a recent survey again found that three quarters of bereaved people rated the overall quality of care for their relative as good or better."
Commissioning of specialist palliative care services in England, H Lancaster et al, BMJ Supportive and Palliative Care
Baroness Finlay of Llandaff
Failings in end of life care continue, says report, WebMD UK Health News, 20th May 2015