A national review of choices in end of life care – Consultation paper
Why the review of choice in end of life care has been launched
Almost half a million people die in England each year. However, significant numbers of people do not currently have proper opportunities for their choices about how, when and where they receive end of life care to be identified, discussed or met.
That is why the Government has set up a review of choices in end of life care – to help shape its national choice offer. The review is being undertaken by an independent programme board, chaired by Claire Henry, the Chief Executive of the National Council for Palliative Care. The information gathered will outline the kinds of choices that people would like to be able to make at the end of life and information about the funding, systems and processes that would be needed to enable choices to be acted upon.
The review focuses on end of life care for adults aged 18 and over, and within the current legal framework. Therefore, it does not focus on assisted dying or anything that would involve changes to mental capacity legislation.
The programme board is due to present its findings and advice to Government in February 2015.
The diagram below shares examples of what surveys and research show can be important to people at the end of life and therefore indicates the types of choices you may wish to consider; however, please do not feel restricted by these.
We want to hear from you
To ensure the review is as comprehensive as possible, it is vitally important that we hear from a really wide range of people about the choices that are important to them at the end of life, what they would mean in practice and whether and how they could be made a reality.
Whether you’re a member of the public or someone who has a professional interest, perhaps through your work within health, social care or housing, we want to hear from you. We’re interested in any aspect of choice in end of life care and support which falls within the scope of this work – so it needs to be related to care of people aged 18 and over and within the current legal framework. This work is not about assisted dying or anything that would involve changes to mental capacity legislation.
We want you to tell us:
a) What a ‘national choice offer’ for end of life care should consist of
We are therefore inviting views on what a ‘national choice offer’ could and should include in order to meet people’s needs and wishes. We want to hear from you about the kinds of choices people should be able to make at the end of their life given that resources, such as funding, are finite and there is inevitably the need to prioritise.
b) How a ‘national choice offer’ for end of life care could be achieved
For any ‘choice offer’ to be meaningful it also needs to be realistic, effective and consistent. We are therefore inviting views on the things that would need to happen to ensure that any ‘national choice offer’ is achievable. To help us understand this we want to hear from you about:
• The extent to which people currently have choices at the end of life and examples of good practice, where people have been able to make choices at the end of life and how these choices have made a difference to their experience and quality of care and support.
• What would need to be in place for people to be able to make informed choices about their care and support at the end of life and be confident they will be acted upon? Some examples may include:
For people who are nearing the end of their life and those close to them:
o An understanding of the current situation and what the future may hold
o A meaningful and helpful assessment of the care and support needed now and that may be needed in the future
o An understanding of sources of support and care available and how to access them
o An opportunity to express and record wishes for care and support and who they would like to be involved in decisions
o Confidence that this information can be easily updated and will be available to the right people at the right time
o For support and care to be available when it is needed, including at night and over weekends
o For the people who provide support and care to be trained, skilled and supported
For professionals who provide care and support:
o Adequate funding and staffing levels
o Access to training and support
o Effective systems for accessing accurate and up to date information about people’s wishes and preferences
• How we would know if a ‘national choice offer’ improved people’s experience of care at the end of life. For example, how we might be able to measure and evaluate the impact on the quality of care and support received.
How can you take part in this consultation?
We would like to hear from you by 30th September 2014.
You can share your views in the following ways:
Online: click here to complete our online survey
c/o The National Council for Palliative Care
The Fitzpatrick Building
188-194 York Way
London, N7 9AS
Download the consultation response template (coming soon), complete, save and email it to us at firstname.lastname@example.org
Telephone: Please ring 01235 512384 to arrange for someone to call you back. Please note that we are a small team, so if we’re not able to speak to you there and then, please leave a short message and we will call you back.
All responses will be treated in the strictest confidence and will be anonymised. Personally identifiable information, such as your contact details will only be kept if you would like to be informed about the outcomes of the review or be involved in future opportunities to help improve palliative and end of life care. Such information will be stored securely and we will never pass on your personal details to another organisation.
There are other ways to get involved
This is just one way that we are working to listen to people’s views and experiences. We’ll also be working with organisations to reach people whose voices aren’t usually heard and speaking specifically to people who have a life limiting condition/are nearing the end of their life and to people who are or who have been carers.
To find out about these other consultation activities that we’re carrying out or to discuss any aspect of this review, please contact us using the postal or email addresses provided.
Claire Henry, MBE
Chair of the Choice Review Board