Covid-19 Experience Reveals Poor Public Planning For End Of Life

UK experts say there’s an urgent need to de-medicalise end of life conversations

New Charter to support better life-long conversations about ‘What Matters Most’

A UK wide group of experts from leading charities and health bodies has launched a new Charter to support better conversations between people and their loved ones over their lifetime, that will also help guide care for people at the end of life.

The new What Matters Most Charter aims to change the nature of care planning.  It forms part of a national movement to make sure that care is better focussed around supporting what makes life good for the individual rather than what helps meet targets, system priorities, or overly focuses on medical treatment options or where someone wants to die.

The Charter alongside two new powerful films argues for a better approach to planning ahead and What Matters Conversations.  Both have been developed at a time of heightened concern around urgent care planning during the pandemic and a commitment to improve learning.

Kathryn Mannix, a member of the UK wide expert group, author and former consultant in palliative medicine, said: “There is an urgent need to de-medicalise end of life conversations.  We need to move beyond the idea of advance care planning discussions, recording of preferences or knowing what treatment people don’t want towards the end of life.  This approach doesn’t help us to wrap care around an individual in a way that matches what they do want.  It is time to change the conversation.”

Leading figures, charities and health bodies are calling on all governments and organisations across the UK to adopt the ‘What Matters Most Charter’.  At the same time, the group are encouraging professionals and the public to watch the supporting films, which show inspirational stories to spark conversations, as well as share “what matters most to you”.

Julie Pearce, Marie Curie Chief Nurse and Executive Director of Quality and Caring Services, and member of the expert group, said: “What matters most to people and how to live as well as possible for as long as possible is a challenge we all face.  Planning ahead isn’t just about care preferences, it’s about making the most of life.  It’s also not just a hurried conversation in a moment of crisis, but a series of life-affirming discussions.

“By being clear about the things that matter most, we give ourselves a better chance of ensuring that our wishes are respected and grieving loved ones aren’t left feeling unsure about what the person would have wanted.  It’s often the simplest things that are most important, like having a pet to cuddle, listening to favourite music, holding hands, or watching the world outside the window. That’s why we’re encouraging everybody, young and old, healthy or not, to start their ‘What Matters to Me’ conversations. We want this to become a habit that everyone does throughout life, a social movement that we all join in and support.

“As professionals we can also encourage people to have or share their life-affirming, life-long conversations, so that we can better support them throughout their life.

“Ultimately, we want to ensure that many more people have the chance to make the most of whatever time remains, while families are better prepared for a future without their loved one.”

The UK expert group is urging the public to have life-long conversations about what is important for life to feel enjoyable and worthwhile.

Lucy Watts MBE, from Essex, has a rare progressive, life-shortening illness.  She is a disability activist, patient advocate and contributed to the new film.  Lucy said: “Advance planning has enabled me to talk and think about my future, my wishes, my goals and what’s important to me. Medical and personal care keep me alive, but it is advance planning that has kept me living well. Through one professional asking me what I wanted to do, I’ve been able to live a fulfilling life. Advance planning is about conversations and about making preparations for our future – for all parts of life. It allows us to take control and ensure our lives are as we wish for them to be”.

The What Matters Most Charter includes key principles for health and social care professionals and organisations to consider, as well as key questions for the public to help plan ahead while they are well and develop further as they age or if living with a life-limiting illness.

The UK wide expert group is chaired by Dr Catherine Millington-Sanders, Royal College of General Practitioners / Marie Curie National Clinical End of Life Care Champion and Dr Adrian Tookman, Medical Director, Marie Curie Hospice Hampstead.

The group continues to grow and includes representatives from ADASS, Age UK, the Association for Palliative Medicine of Great Britain and Ireland, Compassionate Communities UK, Cruse Bereavement, Hospice UK, Macmillan Cancer Support, Marie Curie, Pride in Pennine, Sudden, The Royal College of Nursing, The Royal College of GPs, National Bereavement Alliance, Together for Short Lives, and The University of Manchester.

For further information about the Charter and to watch the films visit

Compassionate Communities UK, Marie Curie and funding from the Coronavirus Community Support Fund, distributed by The National Lottery Community Fund, have helped to create the films and wider project.