The UK's palliative care system needs a major overhaul, according to an LSE report released Wednesday 8 April which reveals widespread inequities and a lack of services for non-cancer patients.
Terminally ill patients with illnesses other than cancer; people aged over 85 years; black, Asian and minority ethnic (BAME) groups; and people living in socially deprived areas are all missing out on important palliative care services, the report from the London School of Economics and Political Science shows.
Thousands of palliative care patients often fail to receive sufficient pain relief and respite from other distressing symptoms, exposing gaps in services, poor communication and unclear roles and responsibilities.
The Marie Curie-commissioned report reveals that, compared to people with cancer, those with non-cancer conditions not only receive less care from specially trained palliative care staff but also less end-of-life care from GPs and district nurses.
Lead author Josie Dixon from LSE's Personal Social Services Research Unit (PSSRU) says the findings should raise concerns, since the need for palliative care is fast increasing as the population ages, with the numbers of people aged 85 and over expected to more than double over the next 20 years.
People from BAME groups and those who live in more deprived areas are less likely to think they receive high quality palliative care and people in more deprived areas feel they are treated with less dignity by health professionals.
Based on calculations in the 2011 Palliative Care Funding Review, an estimated 92,000 people in England who would benefit from palliative care are not getting it, with around 6,200 people in Wales, 3000 in Northern Ireland and nearly 11,000 people in Scotland also missing out.
Only just over 20% of UK hospitals offer 7-day a week specialist palliative care and the quality of hospital care is rated lower than a care home or a hospice.
Despite over 70% of deaths being due to causes other than cancer - including respiratory illness, circulatory conditions and dementia - people with non-cancer diagnoses still account for only 20% of all new referrals to specialist palliative care services.
"Part of the problem is that palliative care has traditionally been for people with cancer and there is currently a lack of suitable models of palliative care for people with non-cancer and increasingly complex conditions," Ms Dixon says.
People aged 85 and over also appear to be disadvantaged. Few receive appropriate palliative care, either because they are under-reporting their symptoms or because healthcare professionals are not giving them the attention they deserve.
Ms Dixon says that providing palliative care to those that need it could potentially generate net savings of more than £30 million in England, at least £2 million in Wales, more than £1 million in Northern Ireland and more than £4 million in Scotland.
"Palliative care can reduce symptoms and pain and help people die where they want to. It can also save money by preventing unwanted and distressing hospitalisations" she adds.
More than 56% of people now die in a care home within a year of being admitted, up from 28% in 1997.
"These statistics show that care homes have a growing role in caring for people who are dying, but they need more support from GPs and specialists than currently exists," Ms Dixon says.
Dr Jane Collins, Chief Executive of Marie Curie said:
"Everyone affected by terminal illness should have access to all the care and support they need, regardless of their personal circumstances. This report shows that this is not the case and some groups are getting a worse deal than others. We don't think this is good enough.
"We hope that this compelling evidence is a catalyst for change and used by policy makers and care providers to improve how all people with a terminal illness are cared for in the UK. It has the potential to improve the lives of millions of people, as dying is the one issue that affects us all."
The report can be viewed here.