Reflecting on the day of reflection
by Kathryn Mannix and Catherine Millington Sanders 23-03-21
‘If only…’ must be a collective sigh as we reflect on a year of distress and separation, sorrow and loss. ‘If only we had known what was ahead…’ ‘If only we had been given a chance to say goodbye…’ ‘If only we had reacted sooner, differently, with more information…’ Regret will inevitably be our companion as we reflect.
We can use our experience to think what we could learn from the pandemic and its impact on us all. What might we do differently in future, as people we may not only be sadder but also wiser than we were a year ago?
The recent report from the Care Quality Commission about advance care planning, and in particular decision-making about cardio-pulmonary resuscitation status, gives us pause for thought. Why was it important to ensure advance care planning was in place? For the usual reason: that each of us is mortal, and adequate advance care planning helps to ensure that we receive care in a place and at a level that is acceptable to us and appropriate for us, should we be so sick that we are dying.
Why, then, were some decisions made that could have been perceived as lacking personalisation and individual discussion? The nub of the problem: that those tender, important discussions about end-of-life care are too often postponed until a crisis arises; then the time for discussion and nuanced understanding has been lost.
The message is clear: it is time for us, as citizens and as members of families, friendship groups and communities, to talk to each other about the things that matter most to us now, and those things that will matter most when the end of our life is approaching. These discussions may be of our love of music, or nature, or pets, or dear people, and they could be life-affirming conversations that help us to distil our priorities.
Being aware of what matters most to us is also a vital first step in any medical discussions to help us understand our current and future priorities for care and treatment should our lives be under threat: how much information we would want, where we would prefer to be looked after, the balance between the quality of life we are prepared to tolerate and the length of our survival. By understanding what matters most to us, our medical advisers can help us prepare plans for our future care that are wrapped around our own, personal priorities.
This becomes even more important when a person is less able to express their priorities.
As we reflect, perhaps we might think ‘If only… If only we could engage in early, thoughtful conversations about what matters most to everyone as individuals. If only we could support people to have thoughtful and inspiring conversations with their key supporters and friends. If only we could see ourselves as mortals, and our mortality as a thing worth preparing for.’
That possibility still exists. As part of our Reflection, we can ask each other ‘What Matters Most to Me?’ We can do it at any age and stage of life, repeating the conversation
as life changes and priorities shift to help us focus on what matters most – living and enjoying our lives, as fully as possible.
It’s time to talk about What Matters Most.
What matters to you
by Sarah Onions 09-03-21
HW CCG Clinical End of Life Lead, Palliative Care doctor and Macmillan GP
The What Matters Charter and its entire philosophy really resonates with me personally and professionally. I love the simplicity! Any decision we may make in life, whether social, career or health related can be guided by this core individual premise.
Taking this approach with my patients has resulted in more honest and open conversations. I feel it helps remove some of the complexity of decisions, stripping them back, revealing patient’s core values. Thus creating a much stronger foundation on which to explore patient’s dilemmas, choices and to help navigate difficult decisions.
I see What Matters conversations, not confined to those at the end of life. Understanding a patient’s core values and what matters to them, helps guide patients, clinicians and policy makers in healthcare, throughout the life span. What matters to us may change as we go through life but understanding what makes you tick and what matters to you as an individual is the constant, which will help deliver the promise and vision of personalised healthcare.
I’ve been overwhelmed by the response to What Matters at health commissioning level. I’ve always felt this aspect of health care could be hard to influence from bottom up. And yet, Birmingham and Solihull CCG (BSOL CCG) and Herefordshire and Worcestershire CCG (HW CCG) have readily recognised the value of the What Matters philosophy and have been proactive in spreading its message.
BSOL CCG rapidly engaged their comms team to spread the word not just for professionals but for the public too! They have already incorporated What Matters Conversations into their existing advance care planning education across the region. HW CCG’s are discussing how What Matters can be incorporated into their new digital integrated care record. They also recognise that What Matters provides a foundation for opening up discussions on ReSPECT advance care planning.
So, the journey of What Matters is only just beginning and I’m so pleased to see healthcare organisations take on this philosophy. However, the most important part of this movement is you and me, as individuals. What matters to you? Simple as that.
First aid or last aid during the COVID- 19 pandemic? Helping carers with deciding right
by Peter Nightingale 17-02-21
Peter Nightingale is a COVID-19 returning doctor. He has been a GP and hospice doctor in and around Lancaster for over 30yrs, previously holding some UK national roles in End of Life Care for the RCGP/Marie Curie and Macmillan.
Most of us a familiar with First Aid, perhaps less so with Last Aid.
Historically, First Aid and Last Aid are both linked by the founder of the Red Cross, Henry Dunnant in 1859, at the battle of Solferino, he was shocked by the suffering of the soldiers. He worked to treat wounded men, delivering what we now call First Aid. However, it was also reported that – ‘He knelt beside severely wounded people who begged him to stay by their side until their last breath so that they would not die alone’. This approach to care may now be referred to as ‘Last Aid’ and has been promoted by Prof Georg Bollig in Europe. One of the most distressing aspects of this pandemic is that so many people have died in isolation
As a 61 year old former Lancaster GP who used to work both in A+E and the local hospice at the same time, I believe that some patients may have received the wrong type of ‘Aid’ when they became seriously unwell in the COVID-19 pandemic, usually due to the extraordinary pressure that our health system is under coping with the new virus.
This opinion was formed when I worked as a COVID-19 returning doctor full time in palliative care during the first wave, with a focus on care homes. I am now clinical lead for Primary Care for Lancashire and South Cumbria Palliative and End of Life Care Clinical Network and a Lancaster COVID-19 vaccinator. This is the second pandemic I have worked in, having spent two years in Zambia in 1988 during the HIV/AIDS pandemic where I developed an interest in End-of-Life Care. There is still no vaccine for HIV. What has been achieved with the COVID-19 vaccination programme is truly spectacular.
As well as the importance of vaccination, lessons about the importance of personalising care could be learned from the stories told by the patients and their carers during this pandemic that may help us all for years to come.
Modern definitions relating to these types of urgent ‘aid’ are:
First Aid: Measures to help with acute injury and illness with the primary goal of ensuring the survival of those affected.
Last Aid: Measures to help in the case of life-threatening diseases with the primary goal of alleviating suffering and maintaining quality of life.
In First Aid the primary survey is a quick way to structure care in any life-threatening collapse. DR ABC is the aid memoire commonly used to help us do this: Danger, Response, Airway, Breathing and Circulation.
During the COVID 19 pandemic, the danger of infection during close contact with patients and possible resuscitation has been very real, and an urgent response and call for professional assessment has usually been essential. An unintended consequence of ‘protecting the NHS’ may have been that COVID-19 patients and others (mostly frail elderly) with deteriorating health were not given the opportunity to be thoroughly assessed and perhaps they were not offered the breathing and circulatory support in hospital that could have saved their lives. This has given added impetus to the RESTORE 2 initiative in care homes.
With both First Aid and Last Aid, potentially correctable conditions, such as hypoxia, should always be given the chance of being corrected if possible, and if the person wants it. I doubt that this has always been achieved, especially early in the pandemic, due to the exceptional circumstances caused by dealing with a new disease. Lessons have been learned but finding capacity to cope with the large number of unwell patients needing assessment in both primary and secondary care has been challenging.
Last Aid knowledge is about encouraging and empowering carers to confidently support proactive rather than reactive palliative care. If there is ever any uncertainty about what carers should do when faced with a life-threatening situation, it is still best practice for them to opt for ‘First Aid’ and life sustaining treatment.
DR ABC can again be a useful acronym. This may be less familiar than in First Aid so I will give more detail.
D – Dying is a ‘normal’ part of life but until the recent COVID-19 pandemic it was an unfamiliar experience to many families. It is important not to ‘over medicalise’ a normal human experience but some professional involvement and support with important conversations during the last years of life is inevitably needed to help with ‘Deciding Right’ when health challenges arise.4 Avoiding unwanted futile medical intervention is good for all involved.
R – Record, and appropriately share electronically what matters most to a person ideally on an Electronic Palliative Care Coordination System (EPaCCS). Multiple unsolicited end-of-life care conversations are exhausting for all involved.
A – Advance Care Planning (ACP) is the complete voluntary process that allows a person not only to state preferences, but also to produce legally valid documents to refuse certain treatments and appoint an attorney to help if the person cannot speak for themselves.6 Adverse publicity about ACP and negative ‘blanket decisions’ early in the pandemic risked undermining public confidence in the benefits of ACP, that is why reframing ACP as ‘what matters’ conversations may help.
It is important to recognise that the presence of a Do Not Resuscitate Form (DNACPR) or RESPECT form does not mean all treatments have been refused or that, for example, oxygen treatment for COVID-19 induced hypoxia should not be considered if it is indicated.
B – Bereavement is a challenging time for all of us, often more complex during this pandemic. Knowledge about bereavement reactions can help us to help ourselves and others. Knowing what is important to a beloved person can help you to make last days as good as possible and this can help to reduce the severity of bereavement reactions. “The way we die lives on in the memory of those who survive” said Dame Cicely Saunders, the founder of the modern hospice movement.
C – Control of symptoms; most deaths are peaceful, but some predictable symptoms can occur, and they can often be managed by the anticipatory prescribing of ‘just in case’ medication. For example, noisy breathing is common, often just indicating that someone is so sleepy that they cannot be bothered to swallow saliva. If necessary, this, and other symptoms can be controlled if planning is in place. For most patients, well established standards of usual palliative care practice have worked very well during the pandemic.
I believe that some people living with life limiting conditions would have preferred a ‘Last Aid’ approach but have been transferred to hospital when their preference would have been to stay in their usual place of residence and ‘take their chance’. This unwanted transfer to acute care happened when what matters to a person in their remaining days of life and their care preferences were not known or effectively communicated.
Help is available to identify patients in general practice who may benefit from a what matters conversation, in the form of the EARLY toolkit. If a person’s wishes are known and shared effectively, community plans for care can be organised in a timely manner.
The Red Cross still provides excellent ‘First Aid’ training for carers, and ‘Last Aid’ training is available for community members in the UK at Highland Hospice and internationally. Community facing ‘Last Aid’ inspired courses are being developed in several areas often by hospices, sometimes as part of ‘compassionate communities’ initiatives. One course called ‘Last Days Matter’ is being developed in the North West of England
I was recently infected with COVID-19 and was delighted to accept excellent urgent expert help from GP services in Lancaster. If I had a long term progressive and incurable illness, I may have made different choices. What matters to me personally would include time being close to my wife and sons and dog, probably by a fire with a glass of red wine dreaming of walks in the Lake District. I would not want possible isolation in a hospital COVID-19 ward. I hope that, when my last days do come, I am listened to. These last days do matter.
Many healthcare staff are completely exhausted at present, but if in future we can help to deliver care shaped as much as possible around what matters most to our patients and their carers, it could be one significant positive outcome from this pandemic. Less reactive palliative care workload would be good for GPs as well as their patients.
When the pressure of dealing with the pandemic eases it could be the right time to support the campaigning work of groups such as the End-of-Life Care Thinktank ‘What matters conversations’ led by the RCGP and the Daffodil Standards for care homes.
Reflection and life planning after COVID-19
How North London Hospice and the London Borough of Barnet Patient Engagement Group (PEG) are approaching an event to stimulate community conversations about life planning and thinking, in the aftermath of covid-19.
What makes a good death? It’s either a conversation starter or a conversation killer. Starting a discussion about death and dying has never been easy but at some stage it’s usually one we all need to have. Whether it’s about your own wishes or someone important in your life – we need to talk about it.
And this is our challenge! As care providers, North London Hospice, Jewish Care and our partners within the London Borough of Barnet PEG, were tasked in the autumn with devising an event that would highlight the importance of advance care planning for Dying Matters week 2021 and beyond.
Such an event would aim to;
stimulate conversations about what matters most to people and those close to them;
highlight the importance of listening when someone wishes to speak about what matters to them;
appreciate that such engagement could lead to a better understanding about an individual’s preferences for the end of life and not just about medical treatment in an emergency.
At North London Hospice we serve a community of over one million people and care for 3000 patients a year so talking about death is our ‘natural home’ but planning an event that engages the public to feel at ease talking about what is often considered a taboo topic is never easy.
In our experience, the biggest hurdle is getting started, and this year, we aim to build on our experiences of 2020 and start conversations about what we can do as individuals, support each other and unite as a caring and kind community.
An event like this is a chance to enable people to become more comfortable talking about their life wishes and preferences. In turn this makes more resilient, healthier, caring communities who will have less demand on health services.
When we saw the newly developed What Matters to Me videos, developed by St Gilesmedical and the EOLC Think Tank, we knew we had a golden resource. It would allow us to create an easily accessible, not too lengthy event, focusing on living and not with dying, with the potential to run beyond Dying Matters week and, for North London Hospice, across the other London boroughs we serve. It could be part of a wider piece of Advance Care Planning communication.
However, after the recent unprecedented time we’ve been through, we knew that whatever resource we were using, planning for any event would be a challenge. We reflected upon the impact of an event that would open the door to discussing death, dying and loss in a public space. We thought about how individual and collective capacity was stretched in so many ways. We spoke about people having ‘death-fatigue’ and respect some people would not want to be involved in such an event.
Considering the population size of the boroughs we serve, we also knew how important and relevant it would be to lead such an event, to provide a safe place where these conversations about ‘what matters to you’ were happening.
Equally we recognised in the aftermath of this pandemic such an event, which got people to think about what matters to them, is now more relevant than it had been before. Lockdowns have also meant we’ve had more time to think about what we’re most grateful for and what matters most to us. Like people who are at the end of life, arguably we have been re-sensitised to the little things and moments that are important to us, such as a homely, sunny room, birdsong and enjoying time with the people that matter to us. Those basic things that give us value and purpose.
So in May 2021 we will be rolling out a public event using the What Matters to Me videos to encourage people to make time to think about life planning, wishes and preferences.
But what will this event look and feel like?
It is important to us to make this easy for people to want to attend. Something relaxed, which can fit easily and virtually into a day’s routine and their home. We want to create a relaxed sofa-style ambience, sitting soft and nothing too ‘expert’ or zoom heavy!
So, we’re inviting community groups to join us with their members for a ‘film screening’ of the What Matters to Me video, being organised with one of the local Healthwatch services. This will be followed by the opportunity for community groups to hold a bespoke event for their group members, offering a focus for specific groups of people such as dementia, faith or residents’ groups etc.
The What Matters to Me video will include a few words from a representative involved in the development of the film. There is also opportunity for other local clinicians and/or public figures to join us (on their sofas!).
There’ll be time afterwards for a short discussion about what thoughts the film has raised or simply time for personal reflection.
For attendees, a take-away guide signposting people to local support services should those be required afterwards, will be provided.
This public event is about reaching out broadly, deeply, and widely to North London, to connect and ignite the power of starting a meaningful conversation.
by Hannah Newton- 08-03-21
Community Development Ambassador at North London Hospice
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.
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.