Almost half of palliative care patients die at home, says report

Nearly half of people receiving palliative care died in their own home compared with just over 20 per cent of the general population, new figures show

The National Survey of Patient Activity Data for Specialist Palliative Care Services, Minimum Data Set for 2012-2013, published this morning, found just over  42 per cent of people receiving palliative care died  in their home.

The new data, collected by National Council for Palliative Care (NCPC) and Public Health England, said 45 per cent of people referred to a palliative care in-patient service are discharged and 85 per cent of those went home.

The NCPC said the figures showed that people do not necessarily go into a hospice to die.

The organisation said a large group of people would prefer to die at home, citing the PRISMA Survey of Preferences in 2010 which found about 45 per cent of over 75s would prefer to die at home.

The new figures showed the majority of palliative care patients have cancer even though cancer accounts for 29 per cent of deaths in England and Wales.

But the research found the proportion of people using palliative care who had conditions other than cancer had risen, although there remained “a long way to go” in increasing usage by this group. The increase was most noticeable amongst people receiving hospital support where the proportion of new patients with non-cancer diagnoses rose from about 5 per cent in 1999/00 to 27 per cent in 2012/13. The proportion non-cancer patients using outpatient and day care services was greater than those using inpatient services. In response, the report said: “It would be useful to explore whether it is appropriate that a higher proportion of people with diagnoses other than cancer is found in day care than in inpatient settings, or whether it is an indication of further work needed in community care and Inpatient settings.”

The survey also found a low level of young people – those between 16 and 24 – using palliative care services and that the figure had  fallen slightly since 2011/12.

The response rate to the survey varied widely around the country from 89 per cent of providers in Cheshire and Merseyside to 33 per cent in Northern England.

Simon Chapman, director of public and parliamentary engagement for the National Council for Palliative Care said: “It’s encouraging that specialist palliative care services in the community are enabling more people to die at home, which is where most of us say we would want to be. However, despite progress many people are still not able to access the services and support they need, when they need them. We only get one chance to get it right for people who are dying, why is why reducing variations in end of life care must be a priority for policymakers, commissioners and providers. It’s also why we are committed to making the case for greater investment in understanding people’s experience of end of life care, and why we will be working with our partners to review the minimum dataset to ensure it is fit for the future.”

Dr Bee Wee, national clinical director for end of life care at NHS England, said: “There are some pleasing trends in this report, in particular around increased numbers of people with conditions other than cancer being cared for across all specialist palliative care services. However, there are some issues highlighted, for example around variable response rates to data across the country, which need to be redressed as a priority.” She said the NCPC, Public Health England and Help the Hospices would be working with others to review the dataset and assist hospices to make greater use of it.

The 2012/13 MDS survey covered 451 hospice and specialist palliative care provider organisations located in England, Northern Ireland and Wales