How did the Royal College of General Practitioners End of Life Think Tank come about?

Great things happen when organisations work together

 

by Julian Abel- 09-12-20

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.

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).

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.

Advance care planning re-imagined: 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 professionals the opportunity to provide care that fits with patient’s wishes.

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.

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.

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.

Rediscovery of treatment option for COVID-19

 

Recognising the importance of kindness

 

by Max Watson- 09-12-20

With the number of people infected with COVID-19 rising across the country and alarm growing that the NHS will struggle to cope, the urgency in the quest for a safe vaccine and effective new medications has never been higher.

 

One old measure has largely been forgotten in the growing weariness, anger and distrust that the UK is experiencing as it prepares to face the COVID/ Brexit uncertainties of the coming winter months.

 

Back in the spring, despite the fear and the unprecedented distress that so many people endured there was also some sense of unity. The Thursday night clapping for the NHS exemplified that spirit of togetherness in the midst of dark times, as did the million volunteers seeking ways to help and support those who were most at risk.

 

A few months later society has moved on, the clapping has stilled, and the blame has intensified. It is the lack of leadership. It is those students. It is those irresponsible party goers. It is the scientists. It is those hospital staff who let Daddy get COVID. It is the politicians who are decimating the economy. It is, - ‘them’.

 

The length of time that lives have been disrupted by the pandemic has been just too long. It has worn us down, used up our resilience and patience and is fast fracturing our communities as we project our unease, anger and frustration from a virus we cannot see onto others that we can point out as being in our eyes some how responsible.

 

We have learned that COVID causes multidimensional damage, not just to the many different organs in the body, but to the whole NHS’s ability to look after all in need, including those who do not have COVID, to the growing number of unemployed affected by an economy which has suffered devastation, to the pupils and students at schools and colleges who have seen their education radically disrupted, and to those struggling to cope with the mental impact of this time of uncertainty and loss.

 

One of the most devastating impacts of COVID has been less critically observed. The pandemic is also destroying much of the cohesiveness, compassion and trust on which a society depends if it is to be the sort of place where all generations can thrive and grow and feel connected and valued.

 

A stark realisation is that we could end up getting through this pandemic only to have, in the process, created a country which has learned to be fearful, selfish, angry, distrustful and embittered. A society of high walls and higher segregation. A society of them and us, of burgeoning court cases suing whoever we think is responsible for our losses. A small individualistic society in which there is little time or space for the caring, support and community living that is crucial to allow us as social beings to thrive and grow.

 

And the vital treatment option that we would all benefit from imbibing? Kindness. Kindness in COVID for those hard pressed health care staff who do not always get it right but who are truly trying so hard in the face of impossible demands and grinding weariness. Kindness in

COVID for that person who is just more rude and abrupt than normal. Kindness in COVID for those having to make impossible decisions based on conflicting evidence. Kindness in COVID when anger and quick judgements would produce more immediate satisfaction. Kindness in COVID for that small business owner distraught as a lifetime’s investment dissolves in lockdowns. Kindness in COVID for ourselves as we take account of how our own physical, mental and social health has been affected by COVID.

 

Kindness is widely available, does not require licensing and has been shown to have immediate impacts and good supplies were in evidence in the spring.

As a treatment kindness, even in small aliquots could allow us as a society to retain those vital human links and connections so central to making life beyond COVID something worth looking forward to.

Planes, Trains, and automobiles: Making the ‘What Matters to You’ films

 

Interviewing patients, relatives and healthcare professions from across the four nations -  a journey of discovery

 

by Anna Lodge- 30-11-20

Stgilesmedical has made two films to encourage ‘what matters to you?’ conversations. In the UK, we’re not good at sharing our hopes, fears, or goals. This sharing can be particularly important towards the end of life, and, as the current pandemic has shown, opportunities are often missed.

The films have been commissioned by multiple stakeholders, including the Royal College of General Practitioners, Royal College of Nursing, Marie Curie, Macmillan Cancer Support, Compassionate Communities, and various other UK organisations. Our aim was to hear 20 diverse stories or opinions that, together, would change the debate. These voices were to come from all four countries of the UK. With nine days booked in the diary for filming, and local COVID-19 restrictions looming, this was going to be a challenge — even with the help of Zoom.

After reaching out to potential interviewees, we planned our route. We were initially concerned that we wouldn’t have enough material, but, as the days went on, more people showed interest. To our delight, the list of interviewees grew to over 50. The logistical task of fitting them all into such a short period proved taxing!

Filming involved journeys by ‘Plain, train and automobile’ to Sheffield, Bradford, Manchester, Cardiff, Bristol, Dorset, London, Newcastle, and Scotland. We visited hospitals, hospices, a mosque, universities, a remote farmhouse with a stream at the end of the garden, the beautiful countryside north of Edinburgh, and a few pubs. The team was exhausted afterwards! Other pieces of film were provided by Professor Max Watson from Northern Ireland as travel restrictions were impossed. 

Along the way, we spoke to dying patients, bereaved relatives, palliative care consultants, specialist nurses, GPs, faith leaders, academics, a commissioner, a well-known politician, and a famous actor — all with inspiring stories to tell. As diverse as the voices were, however, they shared a clear message: it’s important to talk more and often with friends, family, and healthcare professionals about what matters to you now and in the future.

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