“It’s still important to me”

Sue Ryder end of life care

“It’s still important to me”: end of life care one year on from the choice review

Ensuring that the last days and hours of a person’s life meet their needs and wishes can have a huge impact on them and those around them. That is why the Coalition Government commissioned the Choice in End of Life Care Programme board, which published its final report, What’s important to me. A Review of Choice in End of Life Care in February 2015.

The Choice Review called for every person to be offered choices in their end of life care, focusing on what’s important to them. The offer should be made as soon as is practicable, be based on honest conversations between the patient and health and care staff and be consistently continuously reviewed.

It also called for systematic recording of care preferences, support for carers, involvement of those important to the individual in discussions about care, 24/7 support for people dying outside hospitals, and named lead clinicians and care co-ordinators to allow people’s wishes to be met as fully as possible.

In a statement following the Choice Review’s publication (1), Norman Lamb (then Care Services Minister), welcomed the advice, saying that the government “fully support(ed) the Review’s vision that every person should receive care in line with their choices and preferences”. He called on local health and care organisations to realise the vision, and promised that the Government would provide a full response later in the year.

Well, a year has passed, and nothing has changed.

Nationally, the Government has not made any strategic announcements on policy or investment for end of life care. While we as a sector wait to see such an approach, care remains hugely variable. Many people experience excellent end of life care, but every person who is not enabled to die as they would wish is a person failed. Most obviously, we know that most people would like to die at home, but all too often this is not possible due to a lack of support.

That is why, today, the End of Life Coalition is publishing On the brink: The future of end of life care. This new report, compiled by Cicely Saunders International, Hospice UK, Macmillan Cancer Support, Marie Curie, The Motor Neurone Disease Association, The National Council for Palliative Care and Sue Ryder, hopes to build on the work of the Choice Review, encouraging action by Government nationally and also urging real improvement in end of life care at a local level.

Focusing on just one part of end of life care – where people want to die – the report shows that the current system is failing to meet people’s wishes, often by not giving them a real choice. Over 220,000 of the 470,000 people who died in 2014 died in hospital, yet death in hospital only accounted for only 3% of stated preferences. This can be deeply upsetting for patients, but it can also be damaging to the NHS. If more people were properly supported to die at home, there would be fewer hospital admissions, and fewer beds occupied by people who would rather be spending their last days somewhere they felt comfortable. Moving care out of hospitals could also save money and resources in a healthcare system under increasing pressure; estimates based on research by the Nuffield Trust show that providing community nursing support to half of those who died in 2014 could save over £100m.

Supporting dying people to have real choice about how they are cared for as they leave this world makes sense. We just need the political will to make this a reality. We hope this report helps to keep this important issue on the agenda.

1. House of Commons: Written Statement (HCWS301), Department of Health Written Statement made by: The Minister of State, Department of Health (Norman Lamb) on 26 February 2015.