Choice in end of life: Comment from Claire Henry, the Chair of the Choice in End of Life Care Review Board

26 February 2015
A new report, offering a blueprint for how greater choice in end of life can be achieved has today been published by a review board set up by Health Minister, Rt Hon Norman Lamb MP.

The report, What’s important to me: A review of Choice in End of Life Care, calls for a new ‘national choice offer in end of life care’ to be established, backed up by an additional £130 million from the next spending review. It also calls for a new right in the NHS Constitution for everyone to be offered choice in their end of life care, and for these choices and preferences to be recorded in their own personal plan of care.

Other key recommendations include:

  • 24/7 end of life care for people being cared for outside hospital should be in place across England by 2019
  • Everyone in need of end of life care should have a named senior clinician responsible for their care and preferences and their own care coordinator.
  • The Government should implement a clear policy to make access to social care for people at the end of life fast and free
  • There needs to be more honest and open communication about end of life issues, with better support for health and care professionals and increased awareness raising amongst the public.

Chaired by Claire Henry, the Chief Executive of the National Council for Palliative Care and the Dying Matters Coalition, the review group consisted of people with personal experience of end of life care services and experts from across health and care organisations. It held a two-month public engagement exercise and also analysed a wide range of evidence into end of life care.

Speaking today, Claire Henry, Chair of the Choice in End of Life Care Review Board, said: “Despite end of life care having made some great strides forward in recent years, far too many people who are dying continue to receive inadequate care that is ill-suited to their needs and wishes. Yet, as we heard time and time again during the course of the review, end of life care can be transformed by listening and acting upon what people want, in contrast to the enormous sadness, pain and regret that barriers to choice are currently causing.

"There is a real opportunity to transform end of life care, so that people get control back over their lives and can exercise choice on the things that are important to them, including where they are cared for. That’s why we have recommended that a ‘national choice offer’ is established, setting out what should be offered to each individual who needs end of life care. This needs to be supported by investment in social care and NHS services in the next spending review, alongside a new right in the NHS Constitution for everyone to be offered choice in end of life care and have these preferences recorded and held in their individual care plan.  

"Ensuring people get the care and support that is right for them when they are dying is too important to be left to chance, which is why choice is so important. People have told us what they want. Now is the time for action.”

Welcoming the report in a Written Ministerial Statement, Rt Hon Norman Lamb MP said: “I welcome the Review’s advice, which proposes that a ‘national choice offer’ for everyone in need of end of life care should be in place by 2020 and sets out the actions needed to deliver this. As the Review rightly notes, many people in England already receive good end of life care, focused on their choices, and I want to pay tribute to everyone involved in this care, both staff and carers.

He added: “The Government will work with organisations in the health and care system to consider this advice and enable a full response later this year. In the meantime, I can say that we fully support the Review’s vision that every person should receive care in line with their choices and preferences, and we urge local health and care organisations to work together to ensure that this is achieved for as many people as possible.

"In particular, we recognise that interoperable electronic health records play a central role in ensuring that people’s preferences and choices are recorded and shared with all involved in their care. Examples from across the country have shown that where these systems exist they can deliver real benefits to people at the end of life and form an important part of the culture change needed to deliver choice and person-centred care. To help this happen, the Government accepts the Review’s advice that each person approaching the end of life should have a fully interoperable electronic health record, and should be able to access and add to their own records. This is in line with the ambition set out for all patients the NHS Five Year Forward View.

"I would like to thank the Chair and the Review’s Programme Board for their hard work and commitment. Finally, I would also like to thank all the contributors to the review, and in particular the people who responded to the Review’s public engagement exercise.”


Read the full Ministerial Statement.

Follow the links below to read the report in full:

What's important to me - Executive Summary

What's important to me - A Review of Choice in End of Life Care

What's important to me - Annex A - Summary of findings from public engagement on the National Review of Choice in End of Life Care

What's important to me - Annex B - Modelling Choice in End of Life Care


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