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 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 would place the NHS under huge stress.

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In response the stark reality of these figures, Dr Catherine Millington Sanders, RCGP & Marie Curie National Clinical End of Life Care Champion, set up the RCGP EOLC multi-professional 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 is welcoming and inclusive and initially they focused on crisis planning through the pandemic and then turned their attention to 'Horizon Scanning and Planning'. 

 

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 had not worked as harmoniously as they might. Differences were put aside and everyone contributed.  Initially we worked on developing guidance for professionals on how to manage end of life symptoms associated with Covid-19. This was a significant challenge, not just because people with existing illness could die quickly, but also those without chronic disease were at risk. In addition to symptom management, we considered practical solutions to problems such as supply of medicines, supporting the care of people in isolation and importantly, what to do about advance care planning (ACP).

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The open nature of the group, and the free flowing conversations, 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 associated with ACP were first raised. 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.

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Advance care planning re-imagined: a needed shift for COVID times and beyond

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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 professionals the opportunity to provide care that fits with patient’s wishes.

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Following debate regarding the limitations of ACP as currently practiced , and the need to expand conversations to address what is important in a person's life, led to development of the 'What Matters'  Charter. Alongside this, the group raised funds for 2 films. The first supports the Charter and the second is a film for professionals offering advice on how to have 'What Matters' conversations. 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.

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Our hope is that we can change the nature of ACP. Perhaps a better title would be 'Planning Ahead?'. At the heart of this is having 'What Matters' conversations. If we know what is important to people, what really matters to them, we can make sure that our care is focussed around supporting a good life until the end. A positive outcome would be to see a significant increase in the current 5% of people having such conversation.

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The members of the group have found the time spent discussing broad issues about end of life care extremely valuable. We hope we are over the worst of the pandemic, particularly as a vaccine become more widely available. Going forward, we have decided to continue meeting. Having a open forum helps to coordinate and join up the efforts of many organisations. We feel, in spite of the busyness of our lives, that our conversations are  worth continuing.