What matters most to people – how to live as well as possible for as long as possible – is a challenge we all face. We do not need a terminal illness to ask this question. It is something that is worth considering at all stages of our lives. What are the things that make life joyful? What and who do we value the most? What makes life worth living for us? Consideration of what is really important to us means that we can be grateful that we have them in our lives and gives a sense of perspective on what really matters as opposed to things which are nice to have, but if they are not there, it does not matter that much.

Knowing what matters is particularly important for those people who have a life limiting illness. And it is something that is vital to know for health and social care professionals if the care they provide is going to be focussed on the things that help all, patient and caring network, to make the most of whatever time remains. Amazingly, the research literature about what matters most in the palliative setting of end of life care, is almost absent. The focus instead has been on reducing the burden of symptoms, whether these be physical, social, psychological or spiritual, as stated in the World Health Organisation’s definition of palliative care. But good symptom control does not necessarily mean that life will be good, particularly if we do not know what matters most. Care planning in the palliative context has been focussed around resuscitation decisions and place of death. These decisions are difficult questions without finding out how people want to live well first, rather than how they want to die. The difficulty of asking the questions of advance care planning (ACP), the process used for making end of life decisions, are reflected in poor completion rates, sometimes as low as 5% of all people who die. Health professionals are naturally reluctant to ask them, because many people do not want to talk about them and lose a sense of hope that life to be lived is still meaningful. The weakness of existing practice have been highlighted during the pandemic and the professionals involved have sought solutions to the decades long difficulties with advance care planning. The Royal College of General Practitioners End of Life Think Tank have come up with a possible answer.

One of the hard reflections, early on in the pandemic in March 2020, was that the potential loss of life with widespread infection was likely to be severe. Yearly influenza has a mortality rate of about 0.2%, with annual deaths in England and Wales is normally around 10,000 people. Covid 19 was thought to have a mortality rate of around 1%. This would mean that should 10 million people be infected, there would be excess deaths of around 100,000. The number of deaths per year in England is near 500,000. The pandemic would place an enormous burden on providing end of life care with a 20% increase the annual death rate. On top of this, the extra admissions to hospital from people with severe Covid-19 pandemic would place the NHS under huge stress.

The Royal College of General Practitioners (RCGP), in looking at the stark reality of these figures, asked Dr Catherine Millington Sanders, end of life lead for the RCGP and GP lead for Marie Curie, to form an end of life think tank. Jointly chaired by Dr Adrian Tookman, Medical Director of Marie Curie Hospice in Hampstead, the think tank brought together a wide range of organisations and people involved in providing end of life care. This included representation from the Royal College of Nursing, Association of Palliative Medicine,

Compassionate Communities UK, Marie Curie Cruse, Macmillan, Hospice UK and many others. The group was welcoming and inclusive and free to develop recommendations and ideas as they see fit.

This sounds a sensible, if not obvious, response to the pandemic. For those of us with a lifetime experience of end of life care, it was novel. We delighted in the coming together of different organisations that previously have not worked as harmoniously as they might. Differences between organisations were put aside and everyone worked trying to face the severe consequences of the pandemic on the provision of end of life care. Initially we worked on developing guidance for professionals on how to manage the end of life symptoms of people with Covid-19. This was significant challenge, not just because people with existing illness could die quickly, but people with no previous chronic illness were at risk of dying. In addition to symptom management, we considered practical solutions to problems such as the sufficient supply of medicine, how could people who are isolated be looked after and importantly, what to do about advance care planning.

The open nature of the group, and the free flowing conversation that went with this, provided an excellent opportunity to review historical practice of ACP. All good conversations are built on sound relationships. The Think Tank had been meeting weekly via Zoom when the problems of ACP came up in the conversation. This was prompted by the publication of an article written by Dr Julian Abel, Professor Allan Kellehear, Dr Mark Taubert and Dr Catherine Millington Sanders, titled Advance Care Planning Reimagined – a needed shift for Covid times and beyond. The essence of the paper examined the weaknesses of existing ACP practice and recommended that health and social care professionals find out what matters to people before asking any other questions about ACP. This gives the professionals the opportunity to provide care that fits into patient’s wishes.

The development of the conversations about ACP, and the transformation to what matters conversations, has led to the What Matters Most Charter. Alongside this, the group raised funds for 2 films. The first is about the charter and the second is a film for professionals, suggesting different ways of having the what matters conversation. Feedback on the charter and the films has been gathered from a wide range of groups, including people working with homelessness, the Ambitions Partnership for End of Life Care, primary care networks and others.

Our hope is that we can change the nature of advance care planning. Perhaps a better title would be Planning Ahead. At the heart of this is having what matters most conversations. If we know this, we can make sure that our care is focussed around supporting what makes life good for those we care for. This in turn will mean that when the right time comes, we can reasonably ask questions about how the last days and weeks of life can be spent that fits in the context of making the most of whatever time remains. We want to try and ensure that many more people have the chance to fully live fully up until the end, and we hope to see the figure of 5% of people currently having these conversations increase significantly.

We all need to talk about what matters most throughout our lives.

Julian Abel 1/12/2020