This week the health secretary, Jeremy hunt, tweeted this: “Moderate doctors must defeat the militants”.
Here is a man I truly admire speaking some (slightly rude) truth to power. Sir Sam Everington knows a thing or two about the power of protest.
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This week the health secretary, Jeremy hunt, tweeted this: “Moderate doctors must defeat the militants”.
Here is a man I truly admire speaking some (slightly rude) truth to power. Sir Sam Everington knows a thing or two about the power of protest.
When it comes to the NHS, the reality is that our system of government allows new dictatorial edicts to be uttered from on high without any true sense of conversation or relationship with those who work in the system. There is still a belief that this is how change effectually happens. Unfortunately it causes schisms, distractions away from the work we need to do, worsening care, the constant disruption of culture and low morale. However, although protest is vital , and demonstration is key (and had I not been doing a clinic last Saturday morning, I would have been marching in London to support my junior colleagues), there are alternative ways to operate which have the potential to bring about change. One way is the pattern of subversion and submission.
When it comes to the idea of 8-8 7/7 working, the government have General Practice over a barrel and they know it. The prime minister himself has announced that this is what he wants to be remembered for (possibly too late after pig-gate!). The health secretary has declared his intentions in the House of Commons and the national media has thrown its support behind the initiative. The fact that we already have 24 hour cover, 7 days a week, provided by GPs throughout the country is irrelevant. The lack of evidence base, lack of GPs available to work these extra hours or indeed the lack of finance to fund it adequately is not allowed to be important here. The health secretary is able to twist clinical evidence and use statistics of his choice to mislead parliament. One could even be cynical enough to believe that the government are trying to demonstrate again and again just how ‘nonviable’ the NHS is, blaming the “greedy and lazy” doctors for its inevitable collapse. But as the graph shows us, the work of GPs has risen beyond any expectation in the last 20 years and there is plenty of evidence to show how significantly pay, both for GPs themselves and the resources needed to provide the increased level of community care, has fallen in the same time period. These facts are being shouted from every social media rooftop, but they will fall on deaf ears at Westminster. Whether we like it or not, this change is going to happen to us.
Those of us, who work in General Practice and took a 20% pay cut to not work weekends will absolutely have to do so, or we will be squeezed into a corner in which our practices fall over due to under-funding and staff shortages (which some believe is what the government want to happen). I understand the anger and the anger is not wrong. Feeling undervalued and misused is really horrible. But we are better than being vitriolic. We do not need to dehumanize those who we feel to be our oppressors, even when we ourselves feel dehumanized. GPs need to continue finding clever ways of subverting the dominant reality, demonstrating just how ridiculous it is and then get on and submit to it. This is true power. This is the way of love and this is the only thing in the end that ever changes the world.
Our business is in delivering continuously improving, high quality, compassionate healthcare to everybody in our community, while we can. And if we all fall over trying to do this from hearts of love, then the spectacle will not be us, it will be the powers who have crushed us and they will look ridiculous. It may not happen in this generation, but at some point, some people have got to be brave enough not to fight fire with fire, but to choose the better way, the path less travelled by, the way of life laying down love. This is the way that opens up a different kind of future. We need to strengthen each other to be resilient and creative enough to find this better way.
I had the very real privilege of listening to and interacting with Prof Mike West of the Kings Fund as part of a Cumbria Wide learning collaborative a few days ago. It was utterly engaging and inspiring. His basic strap line is this: “The vision of health and social care is to deliver continuously improving, high quality and compassionate health care to all in our community.” The problem is that we’re not doing this, and we’re not doing this because there is something deeply wrong in our culture. And so how do we change a system, especially when it feels that the odds are seriously against us? How do we recover compassion? How do we envision a floundering workforce and help them to believe? Why are there some beacons of light in each organisation and some really dark holes? Why are we not learning more readily from areas of good practice and challenging those that are way below par?
There are some seriously problematic things for us to face up to, and although I love to take a ‘solutions-focused’ approach, I do believe that sometimes you have to face up to your reality before you decide to move into a different kind of future. We could talk until the cows come home about the potential dismantling of the NHS, the low morale of staff and this ‘black hole’ of debt. But what I want to focus on in this post is the cultural deficit. Previous governments have tried to address this with targets, competition and inspections, but each of these, although I think introduced with good intentions, have backfired spectacularly and driven morale lower without improving the culture at all.
Stress is defined by Mike West as a poisonous concoction of high work demand, low control and poor support. Chronic high stress levels are significantly higher in the NHS (26.8%) compared to any other sector (17.8% on average). High stress is detrimental for people’s health and a well known cause of early death. And so in an organisation in which we have 1.4 million people spending on average 80000 hours of their lives caring for other people, we are literally killing them by not caring for them. This is a paradox in an organisation which is supposed to have compassion at its core. And yet we know through significant evidence that the lower the morale and health of your team, the worse the outcomes for patients will be. Stress in the NHS and the lack of compassion with which we treat our own staff is a more significant health risk to the population than many of the issues that we give far more attention to.
So, what can we do? Are we doomed to serve systems that de-humanise people and devour them like bread? Must a system be driven by what Foucault calls ‘biopower’, ie using human beings as the fodder to drive the machine? Can the systems be harnessed and redeemed and made to work for us rather than served by us? Yes! I can say that this is happening here in Morecambe Bay and I see evidence of it in many areas. Nationally, we can take comfort from 2 things, in particular. Firstly, although the truth about our current culture is uncomfortable, the truth is now available to all, so change really can happen. Secondly, the vast majority of people genuinely want the culture to change and the dominant minority in the centre of toxic cultures can no longer hold. Mike West says systems can change, and he has gathered some good evidence to back this up. But it takes time (5-6 years), it takes focus and it takes consistency. He breaks cultural change down into 6 key elements that are well worth exploring.
6 Key Elements of Cultural Change
1) Vision, values and strategy. It is absolutely vital in order for a culture to change that the direction of travel is obvious to all. Salford Royal Hospital in Manchester have for years had the same vision statement: “To be the safest hospital in England”, and they have done it! A vision has to be clear, it has to mark ambition for the future and be able to guide and inspire the whole organisation towards change. However, it takes 5-6 years to embed this through an organisation. So those who communicate a vision to staff and then wonder why they haven’t got it yet need to understand that a paradigm shift in thinking doesn’t happen overnight. A change in direction of the rudder doesn’t turn the ship in one go. The vision needs to be communicated multiple times in multiple ways to multiple audiences. It needs to be inspiring, owned by all and makes clear commitments to the direction of travel.
2) Clearly aligned goals at every level. If a vision is to be cast, there must be measurable goals along the way, so that a team knows they are heading in the right direction. These goals have 2 key elements. Firstly they must be clear and achievable (so not more than 5 or 6). Secondly, they must be aligned to vision, measurable and challenging. People must be challenged to reach an objective, so that the process is both stretching and fun, and there needs to be celebration of goals being reached along the way. Problems emerge here when leaders don’t want to hear about problems that are being encountered. The team needs to be responsive to barriers. For example, there is no point wasting time and energy on collecting data for the sake of it. We want to collect data that actually helps improve patient care or helps staff do their job more effectively. If we want our staff to treat people with care and dignity, then we must treat our staff with care and dignity and that means listening to them and responding to them as we head into uncharted waters.
3) Leaders need to manage and engage with their staff well to gain high quality care. The high level of chronic stress in NHS staff proves that this is not happening as well as it needs to. The Kings fund have discovered some key themes from their research in this area: a) patient satisfaction rates are far higher where staff have clear goals and are working together as a team to achieve them, b) staff views of their leaders is directly linked to patients’ views of care quality, c) staff satisfaction/commitment predicts patient satisfaction, d) if staff feel high work pressure, low control over this and low support then patients will also report low staffing numbers, insufficient support, privacy and respect, e) poor staff health and well-being is directly linked to high injury and mortality rates, and good HR practices lead to lower and decreasing levels of patient mortality. Another key factor is the reduction of hierarchy. The John Lewis Partnership has consistently had the highest level of staff morale for the last 180 years. one key factor is this: there are only 3 levels of hierarchy – CEO/board/partners. Staff/partners feel empowered to make changes and they are listened to.
We are not managing our staff well in the NHS. 24% of staff report regular bullying by ‘management. Discrimination is higher especially for those of Black-African and Black Afro-Caribbean descent. It is still high for those from Asia and 18 times higher for Muslims than for any other group and is also high for those who are not ‘heterosexual’. If you have white skin, you are three times more likely to be promoted into senior leadership positions, when account for numbers is made. And despite the suffragettes we continue to see discrimination against women in certain specialties, most notably, surgery. This is not an acceptable culture. We need to change the culture. Leaders need to learn to be present for their team. Mike West puts it so well: “Leaders need to learn to listen, with kind eyes, full of care and fascination (just as we would want our patients to be listened to). We need to learn empathy, to communicate well and take intelligent action.” Engagement with our teams is about really engaging at an emotional level and this takes trust. Our management styles must change towards being far more inclusive, empowering and under-girded with our values and integrity. For staff to feel happy, there needs to be a sense of a stable senior leadership team. There should be a real sense of anger about how badly staff in the NHS are currently treated but a clear positive attitude towards affecting change. Leaders must help process negative emotion in their teams and deal with quarrelsome, disruptive behaviour that spoils the hope for a different future. Poor performance and attitude has to be challenged if we are to create the kind of culture we need and want to see.
There are many situations and systems in which an entire culture can be toxic, with top down bullying as the order of the day. Creating resilience in our teams is not about toughening people up to go back into toxic situations until they finally break. No, we need something far more creative than this. It is impossible to change a culture as a lone shark. Mike West talked about gaining ‘minority influence’ – good examples of this are found in the Feminist movement and the Green Party. A small group of committed and determined people can accomplish an incredible amount. But if the culture will not change, then wipe the dust off your feet and go and give your energy elsewhere. Systems can change if there is desire enough to change them. There are hospital trusts in the UK that report significantly higher staff morale than anywhere else. We must learn from places like Salford Royal, Royal Wolverhampton Hospitals, St Helen’s and Knowsley, Bedford and Frimley Park. Here in Morecambe Bay, where the maternity service has been at rock bottom, we are part way through an incredible cultural shift and many other departments throughout the country are beginning to turn here and ask us what we’re learning in our journey of change.
4) Learning, Quality Improvement and Innovation. This is a very straight forward point, but one to which we do not pay enough attention. Learning organisations facilitate the learning of all staff and the system itself to continuously improve. If we’re not improving, we are going backwards. We must learn to learn from failures and create a culture where this is acceptable. Learning organisations are characterized by systems thinking with information systems that can measure performance. In such a system, staff are encouraged and motivated to focus on improving quality (why would we want to do a shoddy job?). Learning is done in teams and crosses the boundaries of role and specialization and there is always dialogue going on around this. Prof West says that a key question to continually ask is this: “What do we need to change around here to enable you to be able to do your job more effectively?” We must make a promise to learn and a commitment to act. Where staff have a focus on continually improving patient care and this is embedded in the culture, targets become obsolete. Reflective practice and learning becomes endemic. All staff are accountable and all staff are enabled and empowered to bring about change.
5) Team working. Teams need clear objectives, roles, communication and learning. In the NHS, 5% of people say they do not work in a team. 40% of people feel they work in an effective team. That leaves 55% of people who consider the team they work in to be dysfunctional. Stress, injury, bullying and errors are all higher in ‘pseudo-teams’ and the mortality rates are significantly lower for patients who are cared for by teams that function well. Interpersonal conflict is a disaster for effective team and inter-team working. The Kirkup report into Morecambe Bay and the Francis report into Stafford both highlight the appalling and detrimental effects of the breakdown of relationship between consultants and hospital departments. It is estimated that up to 30000 deaths per year could be prevented by more effective team working. This conversation really matters! We have to change our culture.
To develop good teams, we must encourage positive and supportive relationships, resolve and prevent conflicts, create a positive group attitude to diversity, be attentive and really listen to our teams, encourage inter-team cooperation and nurture team learning improvement and innovation. Our teams must develop reflexivity. Teams are more effective and innovative to the extent to which they take time out to reflect upon their objectives, strategies, processes and environments and make changes accordingly. The best response to pressure is not to work even harder, but to stop, take a step back and reflect. This is true even in emergency situations, as evidenced by the pilot who handed over the controls to his co-pilot whilst he took time to assimilate his options and decide on a strategy to land US Airways flight 1549 in the Hudson river in 2009.
6) Collective Leadership. Leadership is the responsibility of all. It is for anyone with any kind of expertise to take responsibility where and when appropriate. Leadership is shared in teams across the whole community. It is interdependent and collaborative, working together to ensure high quality health and social care. This is our experience through Better Care Together in Morecambe Bay. It needs to be both clinical and managerial. The more hierarchy there is, the less opportunity there is to innovate. There are lessons for us to learn from more collaborative leadership styles like ‘The Art of Hosting’. We would do well, to take heed and learn some vital lessons from teams daring to do things differently.
Mike West finished his lecture with a very beautiful summary: Health and Social Care is about the core value of compassion. We want to create compassionate communities that listen with fascination and are empathic. We have to begin with ourselves. We need to take intelligent actions around this so that we can create the kind of cultures we want to see.
Known for it’s fast moving tides, mud flats, quicksands, islands, rare birds, natural gas, submarine building and nuclear power; Morecambe Bay is a place whose motto is “where beauty surrounds and health abounds”. The first part is true – it is a place with some of the most spectacular views on offer in the entire UK and hidden treasures of wildlife and wonderful walks. A place where I live with my family and I now call home. But it has some of the worst health outcomes in the country, sitting bang in the middle of the North-West – the worst place for health per head of population for any of the regions in the UK. We are the worst for cancer rates, the worst for heart disease, the worst for respiratory problems and the worst for early deaths. And please avoid the rhetoric that would have you believe that it is because of low aspiration and poor choices made by the people here. The North-West is underfunded in terms of health training, according to Health Education England, to the tune of £19 million every year, when compared head to head for other regions. And given the fact that health outcomes are so poor here, it is fascinating that 94% of all health research monies are spent south of Cambridge.
Looking at the health system here, it would be easy to be disheartened. The recent Kirkup enquiry into drastic failures at the University Hospitals of Morecambe Bay Foundation Trust, to which the trust has responded with humility and learning, highlighted just how much change is needed here. We also face the vast complexities associated with local tariff modification. And as if the local challenges are not enough, we have the added recruitment crisis that is affecting the entire country (worse in rural areas), the undermining of our junior doctors and their pay, the berating of nursing colleagues from overseas who don’t get paid enough to remain here, severely low morale in the system as a whole, and a maltreatment of General Practice in the National Press at a time when the profession is on the ropes; then there is the huge debt of the hospital trusts – compounded by the PFI fiasco and the creeping privatisation of our services, which has led to the shambles that is out of hours care and staffing issues due to agency working. And all that is on the background of a hugely underfunded healthservice, with only 8.5% of GDP spent on health compared to the 11% most other OECD countries spend. The truth is, we simply do not spend enough of our GDP on health care for it to be sustainable in its current form, and the government knows this.
For the last three and a half years, I have been working here as a GP, having previously spent 14 years in Manchester. Three days a week, I work clinically in my practice, and the rest of my work time is given over to being part of the executive team for the Lancashire North CCG – I am the lead for Health and Wellbeing. Although the odds are stacked against us, something really wonderful is stirring here. I would go as far to say that believe it or not, Morecambe Bay is one of the most exciting places to be involved in health and social care anywhere in the UK. Let me tell you why I feel so hopeful (and why you should consider working here)!
Understanding the Purpose of Healthcare
A chap called, Phil Cass, who is an (unmet) hero of mine in the medical field, lives in the state of Ohio. He has been been doing some work with local communities to try and make healthcare affordable for everybody – a truly noble quest in a country where 50 million people cannot afford any. He took the conversation out to the community and they tried various questions, but found they weren’t really getting anywhere. He and team of people then realised that they needed to ask a better question. The question they needed to get to was “What is the PURPOSE of our healthcare system?” – Once the communities began engaging with this question, something remarkable happened – time and again, the same answer came through – the answer was this:- “to provide OPTIMAL healthcare to everybody.” The word optimal recognised that every person would achieve different “levels” of health depending on age, underlying health problems, genetics etc, but the vision of the community became that they wanted every individual and the community as a whole to live as well as they could. The community then realised that in order for this to be achievable, they had to fundamentally change their relationship with the healthcare system and this then made care much more affordable. Here in Morecambe Bay, we are taking a similar conversation to the 320000 citizens who live here.
Starting and Finishing with People
The NHS has become a horribly target driven culture and amidst the stress and strain, in which staff themselves often feel dehumanised, it is easy to forget what we are here for – human beings. Putting people (rather than patients) at the heart of how we think about health is a vital starting point.
So, we are learning to truly engage with and listen to the people here. With the help of an amazng team, I have been hosting conversations here in Carnforth, in the form of ‘World Cafe’ discussions (a fantastic way to ensure every voice is heard). Our hope is that from Millom to Morecambe, we will see conversations springing up as we talk about how Morecambe Bay can become the healthiest place in the UK. And by being healthy, we do not mean just physical health. We are talking about mental health, social health (there really is such a thing as society!) and systemic health (including issues like road safety – still the biggest cause of death for our children, the environment and pollution, the real effects of austerity on our communities, the power of advertising and the high cost of healthy food). And as we talk with our citizens, we are not coming in with ideas of how to fix things, as though we are some kind of experts. People are the experts in themselves the their communities, and we have some expertise in a variety of fields. So, we have a meeting of equals. We are waiting to see what rises within the communities themselves and looking to support initiatives where that is wanted. Communities are having some really exciting conversations and some people are standing up to become ‘health and well-being champions’ (the photo is taken from a recent event, supported by our Mayor in Carnforth, looking to do exactly that), who want to help steward the well-being of the community and the environment. It is incredible to see how many people want to get more involved with making this area more “healthy”. Volunteers are springing up with ideas like gorilla gardening, shopping for elderly neighbours, cooking meals for those coming out of hospital, setting up choirs, starting youth clubs, community transport services to help housebound people get to appointments, cleaning up our streets, creating safe parks and being hands on with support for those receiving palliative care. People are learning to ‘self-care’ and care for each other more effectively.
Atul Gawande, another hero, has written powerfully in his book ‘Being Mortal’ (a manifesto for change in how the medical profession deals with the whole topic of death). It challenges the ways in which we don’t face up to our mortality very well. We end up spending an inordinate amount of money in the last year of someone’s life on drugs which have a lottery-ticket chance of working, when all the time, we could help people live longer and more comfortably if we introduced hospice care earlier and treated people with compassion. We are looking to launch compassionate communities here, where we are not afraid to talk about the difficult issues of life. We want people to have the kind of care that allows them to make supported choices to live well, right to the end. Our BCT Matron, Alison Scott, is a true champion of this cause, along with Dr Pete Nightingale, the recent RCGP national lead of palliative care, Dr Nick Sayer, Palliative Care Consultant and Sue McGraw, CEO of St John’s Hospice.
From the moment of conception to the moment of death, we want people to have optimal health in Morecambe Bay. We want people to be able to live well in the context of sometimes very disabling and difficult circumstances and illness. We want to see care wrapped around a person, recognising that this cannot always be provided for by the current ‘system’.
Better Care Together
Before the government launched its five year forward view for the NHS, we were already in the process of learning to work very differently here, around the Bay. We have been blurring the boundaries between various care organisations (including the acute trust, the mental health trust, the GP practices – now forming into a more cohesive federation, community nursing in its various forms, the police, the fire-service, local schools, the voluntary sector, the county council and social services), building relationships between clinical leaders, sharing the burdens of financial choices and care conundrums, strengthening the pillars of the various players, redesigning care pathways across the clinical spectrum to ensure better care for patients and infusing everything we do with integrated IT.
The creation of integrated care communities (ICC) is at the heart of the vision to transfer more care out of the hospital setting and back into the community, whilst ensuring that the funding follows the patient. Our care co-ordinators become the new first port of call for our most vulnerable or ‘at-risk-of-admisison’ citizens. The idea is to wrap care around a person in the community, with the appropriate services being called in. Many times a care coordinator can bring in help from allied professions/volunteers and avoid unnecessary admissions or overlap of services. This means less pressure on the Emergency department and less pressure on General practice. We are also working to ensure our Urgent Care provision is fit for purpose with GPs, NWAS (our ambulance/paramedic service) and Out of Hours care offering much more of a buffer for our Emergency Departments.
Radical Leadership and the Challenges Ahead
There are many challenges ahead and both local and national threats remain. We are steering a huge ship through an iceberg field, and the so the waters are dangerous. We risk a lack of transfer of funding towards General Practice making it difficult for appropriate ‘buy-in’ for the changes we need to see. GPs ourselves have some brave leaps of faith to make. We will not be able to guarantee more money in our own pockets, but we must decide between protecting what we know or federating more fully for a more sustainable and excellent provision of care in the future (providing better education and career development in the process). We risk disengagement from senior clinicians in our hospital trust if the vision is not fully owned and shared by all. We have huge risks associated with the truly shocking cuts being forced upon our county council and a destabilisation of social care. We risk our nursing care home provision causing a halt to the entire program due to the vast complexities involved. Political whims, rules and pressures often seems to knock the wind out of our sails and could still utterly destabilise and destroy what is tenderly being built here.
However, one of the things which I have found most encouraging here is the quality and attitude of the leadership. Andrew Bennett as the SRO for BCT and Jackie Daniels, the CEO of UHMBT (the acute trust), have built stunning teams of people! I have the privilege of sitting on the executive board for the CCG and we have exec to exec meetings with the acute trust, in particular. The truth about Better Care Together is that for some it may mean doing themselves out of a job, letting go of power, and choosing facilitation and servanthood over domination and self-preservation. Leadership that is determined by the future and is able to lay itself down for the sake of what is really needed in our communities is exactly the kind of leadership we need. The leadership here across the spectrum is brave, it is altruistic, it is kenarchic, it is relational and it is rooted in the community.
And so we press on, knowing that we cannot remain as we are, knowing that in building together with our communities, we are finding that the future is not as bleak as it might otherwise be. Together we are wiser, braver and kinder. Morecambe Bay is no longer the butt of the jokes. It is becoming a place of hope, a place of potential, a light that is beginning to burn, dare I say it – a place shaped by love. It will be a place where health abounds in the beauty that surrounds.
I’ve recently returned from a fantastic holiday in one of my favourite places – La Belle France. It was a wonderful time of relaxation, restoration, reconnection and reflection. My summer reading was the quite simply stunning book, “Walk Out, Walk On”, by Meg Wheatley and Deborah Frieze, recommended to me by Prof Stuart Eglin. It resonated with me, provoked, challenged, encouraged and envisioned me and I heartily recommend it as a MUST read, if you haven’t done so already.
It flows in the same stream as ‘The Art of Hosting’ and is refreshing in its style – one of learning, rather than teaching, an invitation instead of an instruction manual.
The basic premise of the book is this: many of the current systems we have, “are failing to create solutions to the very problems they were created to solve.” They have become large, over-organised, lumbering bureaucracies that stifle creativity and use people to support and uphold the structures, rather than releasing the people and supporting them to live and work more resiliently.
When we recognise that a system is failing, we can spend an enormous amount of time and energy trying to put sticky plasters on it, attempting to fix and repair what is there. Perhaps this is because we are afraid to let go, perhaps because we develop a kind of idolatry or sentimentality towards what was or we simply cannot imagine a different way of being. But there are pioneers who look for new alternatives and they fall into two types.
1) Some will look to create new alternatives within the structures and help the old transition into the new.
2) Others will create new alternatives outside of the old system and invite others to slowly join as they discover new ways.
Both pioneering types are vital – and share the same core DNA – they are ‘Walk Outs’. What is vital is that they don’t just walk out, but that they walk on to reimagine a different future. Walk Outs are not motivated by greed or power, but by love and kindness, recognising the damage caused by the current system and looking for an altogether better way.
Walk Outs can often feel quite isolated and alone, but once they begin to find each other, connection and community become key ingredients to finding the way forward.
This challenges our management school and well rehearsed ideas in western thought about how growth and change occurs within organisations and systems. We do not need to continually look for maximising growth and profit. There are alternative motivations and more sustainable futures than the ones we are currently choosing.
My personal focus in the next few blog posts will be to apply this to the NHS and healthcare at large. I will take each chapter in turn and draw out some of my learnings from the amazing communities around the world brought to life in this book to help reimagine what healthcare is for.
Twice a week I do a ward round at our local nursing home. All of my patients there have profound dementia, and none of them recognise me from one visit to the next. Most of them are doubly incontinent and many of them are unable to communicate and are bed bound. And in that place I find the very best of human compassion and care; real, genuine dignity. I completely understand why families feel unable to care for their loved ones when they reach this stage of life and these kind of care facilities, although imperfect, are of huge value.
But, I believe we need to have an emotive conversation about advanced care planning, living wills and how to allow people to die in a compassionate way without needing to kill them. Most of my patients in this particular home have had at least one urinary tract infection and a chest infection in the last year. Our current default position as medics is to treat the infection and keep the person alive. And I want to ask some tough questions: – For what? For how long? Why? Isn’t there a difference between living and being kept alive?
Now, please hear me. I am not saying that people with dementia are worthless and we should just let them die. Indeed my lovely Nanna has vascular dementia, but she is truly happy and doing very well. I recently went to see her for a weekend. On the first night I took her out to dinner with my family. The very next day she had forgotten all about it, though she still knew who I was! I’m not suggesting that next time she gets a chest infection, we shouldn’t bother treating her. I am saying that every human life is precious, and each person should be honoured and loved. But there comes a point when we have to ask if our ability to sustain life becomes more inhumane than genuinely loving.
Although most of our patients in nursing homes have a ‘Do Not Attempt CPR’ order (because not one of them would survive such an attempt and it would be an horrific ordeal to put them, their family or staff through it), we actively keep them alive when they have an infection. It has caused me to personally reflect that I will make a living will that if I develop dementia one day, and become doubly incontinent, bed bound and unaware who my family are, I will not want to be treated with antibiotics. I would like to be kept comfortable and let the natural consequences of an infection overwhelm my immune system and allow me to die in peace.
I understand that this either takes a living will or should involve team decisions with doctors, nursing staff and where possible the family of the person or next of kin.
We are keeping literally thousands of people alive in this country every year who would be able to die peacefully, without the need for euthanasia if we took our ‘healing hands’ out of the way and allowed compassionate hands to nurse them into the grave. We have every drug we need to keep people comfortable. We have the most amazingly caring staff to treat them with dignity. Are we afraid of letting go? Are we scared of what is on the other side of death? Whatever our reasons, we have to ask if our current management of our elderly citizens with end-stage dementia is kind or compassionate or indeed sustainable.
I hope that our towns and cities can become compassionate communities in which people live and die well. We need to break through our fears, especially in the UK in talking more openly about death.
I hope that Lancaster, the city in which I live may become the first official compassionate city in the UK. I don’t mind if it isn’t, but I do hope that many cities choose to take on this mantle.
Here is a beautiful and moving animation of what becoming a compassionate community is about.
This guy, Nick Vujicic, is undoubtedly one of my heroes – watch him, and be inspired, challenged and healed.
If you have never read ‘The Secret Garden’ by Frances Hodgson Burnett, then read no further, go and read that book and then come back! Seriously – it is one of the most beautiful children’s stories ever told and I have just finished reading it to my eight year old daughter.
It is a story at many levels, but ahead of its time it reveals the power of our psyche in affecting our physical health and how changing the way we think can alter our wellbeing – both physical and mental. Colin, a rejected and yet thoroughly spoilt boy believes he is going to develop a hunch back and die young. His entire life is driven by anxiety of what might happen and a kind of hatred of himself and the world around him. That is until a girl, who was once very similar to him and a boy, who is as free and loving as any human could be, enter his life and awaken the possibility of transforming hope.
I have seen so many patients over the years who believe incredibly negative things about themselves and the world around them. Some of them have evidence to back this up and others most certainly do not. What amazes me time and again is that those who allow their minds and thought patterns to be transformed become much physically stronger and more whole. Those who refuse to change the way they think (because it is actually a choice and a retraining of our thoughts – no one else actually makes us do it) stay as they are and get worse, which always makes me sad. It is not simply about the power of positive thinking. It is choosing to align yourself with a wholly different story, with a different set of imaginings, with hope for the future in place of despair, with love in place of fear.
Colin finds the ‘magic’ that helps him to change. The same magic that causes the plants to grow and the seasons to change; that allows creatures to give birth and the birds to sing their songs. The magic that teaches a boy to walk, a girl to reach out, a hardened old man to cry and a father and son to restore a broken relationship. The magic that allows the place of our greatest pain to become a place of redemptive joy. The magic that allows a human heart to soften and learn to love. It’s what John Newton calls ‘amazing grace’. It’s what I call the Holy Spirit. The dancing One who breaths life through everything and invites us into this same dance. To throw off self-pity and shame and to find life in all its fullness instead. All it takes really is the deliberate choice that we can change and once we open up the possibility, well, truly anything can happen!