Every Moment Counts: A new vision for coordinated care for people near the end of life calls for brave conversations

Every Moment Counts has been produced by National Voices and the National Council for Palliative Care in partnership with the national clinical director for end of life care at NHS England, Dr Bee Wee. It draws on surveys, the testimonies of bereaved carers, the experience of end of life care charities and the reflections of professionals that highlighted failures in coordinating and personalising the different elements of end of life care. 

One of the challenges highlighted is that individuals working to support and care for the person are often generalists who may not have the confidence – or the training and preparation – to open up conversations about choices and preferences. Yet Every Moment Counts shows these are vital to the people and carers in question. 

Every Moment Counts outlines five themes that people say are key to coordinated care near the end of life. These are summarised in the defining statement: 

“I can make the last stage of my life as good as possible because everyone works together confidently, honestly and consistently to help me and the people who are important to me, including my carer(s).”

Further ‘I statements’ set out in more detail the things people have said they want their care and support to look like, such as: 

“I have timely and honest conversations with those engaged in my care, support and treatment.”

“I can remain in control as much as possible. This is recognised as a key goal in my care. ”

“I am confident that the people who are important to me will have the opportunity to get support with bereavement before and after my death.”

“Things that need to happen, do so quickly.”

Every Moment Counts takes account of the NICE Quality Standard* that focuses on the last 12 months of life and declares that that: “People approaching the end of life receive consistent care that is coordinated effectively across all relevant settings and services at any time of day or night”. Organisations who have helped develop Every Moment Counts include  Carers Trust, Compassion in Dying, Hospice UK,  Motor Neurone Disease Association, Sue Ryder, Together for Short Lives and Macmillan Cancer Support. Every Moment Counts is also supported by the Association of Directors of Adult Social Services. 

Dr Bee Wee, National Clinical Director for End of Life Care, NHS England, says: “NHS England set out in the Actions for End Of Life Care framework how much importance we place on informing and engaging with individuals and their loved ones to plan for end of life. This narrative tells us what person centred care means to someone approaching the end of life, and will help realise the ambitions we share with National Voices and all of our partners across health and social care to improve services for them.”

Simon Chapman, Director of Policy, Intelligence & Public Affairs, National Council for Palliative Care says: "Every minute someone dies, but too many people still aren't getting the end of life care and support that is right for them. That's why it's so important to talk more openly with people who are approaching the end of their life about their wishes, and why it's so essential to ensure that the commissioning and provision of end of life care is centred around people's individual needs. We hope that everybody involved in planning, designing or providing services to people approaching the end of life will embrace this vision and use it to make sure that everybody gets the person centred care they want and need."

Don Redding, Director of Policy, National Voices, says: “The last months and weeks of life are when health and care services spend most time and money on us. Yet we know there are many gaps in coordinating the multiple inputs that people are receiving. We hope this new vision will inspire professionals to take a more person centred approach.”

Preth Rao, Head of Policy and Campaigns, Sue Ryder, says: “Ensuring co-ordinated care at the end of life is more challenging than perhaps at any other time. Every Moment Counts will ensure that people have a tool to know what good care looks like and what they should expect. This vision document, particularly the section on ‘I have responsive, timely support day and night’ aligns closely with our Dying doesn’t work 9 to 5 – So why do support services? campaign to improve end of life coordination and support for people dying, their families and carers, around the clock. We hope this narrative will act as a catalyst for ensuring better care coordination at the end of life as at the moment it is something that does not work well enough for enough people.”

Professor Sir Mike Richards, Chief Inspector of Hospitals, Care Quality Commission (CQC), said: "CQC fully supports the narrative for person centred End of Life Care, which clearly articulates the quality of care which everyone should be able to expect at the end of their life. We are using the narrative in our thematic review of inequalities and variation in End of Life Care to describe what good care looks like, so that we can understand why people's experience of End of Life Care often falls short of this."

Every Moment Counts is based on a literature review; bespoke research on the experience of bereaved carers; coproduction with people with experience, including carers and professionals and a workshop with national organisations.  It is one of four new branches of the Narrative for person centred coordinated care launched in 2013, and which has been adopted by many health and care organisations including NHS England as well as individual care providers.

Every Moment Counts can be downloaded here

*NICE (August 2011), Quality Standard 13, Statement 8  

Further information:

• National Voices (NV) contacts:  Jules Acton or Veronica Beserve at National Voices on 020 3176 0737 / 1208
• National Council for Palliative Care (NCPC) contact Joe Levenson on 07795 158003
• National Voices is the national coalition of health and social care charities in England. We work together to strengthen the voice of patients, service users, carers, their families and the voluntary organisations that work for them. We have more than 160 members with 140 charity members and 20 professional and associate members. Our broad membership covers a diverse range of conditions and communities and connects with the experiences of millions of people. @NVTweeting
• The National Council for Palliative Care (NCPC) is the umbrella charity for all those involved in palliative, end of life and hospice care in England, Wales and Northern Ireland. It also leads the Dying Matters Coalition (www.dyingmatters.org) which aims to raise public awareness of the importance of talking more openly about dying, death and bereavement in England and Wales. @NCPC_tweets