Where did the hysteria over the Liverpool Care Pathway originate?

We need to talk openly about dying.

As a staunch and outspoken supporter and defender of the Liverpool Care Pathway I have recently been contemplating a great deal why the whole furore started. We have been using the pathway for years so why now? I seem to recollect that a few years ago the approach was criticised by some eminent doctors in the national press but after a couple of articles and a little disquiet the debate simmered down and we as practising clinicians continued to use what is considered the framework for best practice when delivering end of life care. The issue certainly was not debated in every mainstream current affairs media outlet and politicised with numerous relatives stepping out into the arena to tell their own horror stories.

So what has happened in those few years? The LCP itself has not really changed. Perhaps the document has been developed a little but the fundamental principles of care remain the same. Maybe it is society’s expectations that have changed. There remains a huge taboo surrounding discussing death and dying openly despite the work of fantastic organisations such as Dying Matters and Good Life Good Death Good Grief. Because of this taboo, acceptance that all illness cannot be cured is sometimes limited and this can lead to huge friction between health professionals and devastated relatives when we reach the end of the line in terms of active treatment of a condition.

Perhaps it is because the press love to indulge in a little of what I glibly call "doctor bashing" and feel that we as doctors must have some sinister, ulterior motives underlying our work in end of life care. By sowing these seeds of doubt that we as a profession should not be trusted and preying on society’s deep seated fears about dying news stories that sell papers are created. There is also perhaps a perception more and more that everything done in the NHS is underpinned by monetary factors, bed pressures and lack of resources and that these issues motivate us as doctors rather than our patient’s best interests, is which something I find very sad as I go to work primarily to look after people.

Perhaps the pressure on the NHS in recent years has led to such a time-deprived environment in some hospitals that communication has suffered as a result and that is why families have not perhaps felt as cared for and as informed as they should have. This may have led to misunderstandings about the intentions of using an LCP approach as communicating in this area especially about the uncertainties surrounding dying is complex and takes time.

So for whatever reason the sparks of the story did ignite and the irresponsible handling by some of the media has left us as clinicians in a hugely difficult and worrying place. As a doctor I would hope that the relationship I have with my patients and their families is based on a solid foundation of trust; a trust that I am there solely to act in their best interests and to care for them. As a patient myself I trust my own GP and oncologist implicitly. But when the press and sometimes the politicians start to undermine this trust then we are left in an extremely worrying and dark situation.

How do we fix it? I do not believe the problem itself has anything to do with the actual LCP. I think the solution is really very simple and yet difficult to achieve. When someone is diagnosed with a condition that is going to limit their lifespan such as heart failure, dementia, metastatic cancer or MND for example I believe early, open and honest discussion about prognosis is a necessity. This allows the patient choice and some degree of control over what will happen in their life. Investment in Palliative Care services so that these highly skilled professionals can be involved early on in life limiting illnesses would undoubtedly help in these discussions. This would replace the current scenario which often arises and is best illustrated by using cancer care as an example. A patient is diagnosed with a metastatic cancer. The Oncologists treat them. Eventually the Oncologist’s treatments become futile and their care is then handed over to the Palliative Care team at this point, who are then only involved for relatively little time in that patient’s journey. In my model the Palliative Care practitioner would be in the clinic when the patient is first diagnosed and work in partnership all the way with that patient. I am reminded of a quote from Dame Cicely Saunders, the founder of the hospice movement, "you matter because you are you, and you matter until the last moment of your life. We will do all we can, not only to help you die peacefully, but also to live until you die."

Therefore when we reach the point where the LCP becomes appropriate we would have patients and families who are well informed and hopefully accepting of their situation enabling the partnership work to continue seamlessly into the final hours and days. Because of the openness agenda the wishes of the patient would be known and could have been planned for enabling us to achieve that Holy Grail "a good death".

So it is not fancy technologies or complicated research that is going to fix the problem. It is quite simply some good quality talking and a culture and environment that allows this to happen. One of the reasons I have been so open about my own dying both in public and in private with those I love is that I believe openness is inextricably linked to achieving "a good death" and perhaps more importantly "good grief" for those left behind.

Dr Kate Granger blogs at http://drkategranger.wordpress.com/

A porter at Lewisham hospital, London, in 1981. (Getty.)
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Chuka Umunna: Why tolerance is not enough

Against the Trumpification of politics.

It’s still spring, yet 2016 already stands out as one of the ugliest years in modern British political history. It was fantastic to see Londoners choosing hope over fear in May, electing Sadiq Khan as our first Muslim mayor. But David Cameron, having shamelessly endorsed Zac Goldsmith’s dog-whistle campaign tactics, owes those young Muslims who have been put off politics by the slurs hurled at Khan an explanation. How does racial profiling and sectarian scaremongering fit into his One Nation vision for Britain?

Meanwhile, Boris Johnson, one of the best bets to succeed Cameron as our next prime minister, embarrassed Britain on the world stage with a racially charged allusion to Barack Obama’s Kenyan heritage. And my own party has been grappling with a swath of deeply disturbing revelations regarding the attitudes held by some on the left towards Israel and Jewish people. Sowing discord by stigmatising or scapegoating a single faith group or community is profoundly at odds with the British tradition of “tolerance”, but we can’t ignore that this year’s events are part of a rising trend of friction and factionalism.

Last year’s general election should have been a wake-up call. The political and cultural divides between people living in the north and south and urban and rural areas – as well as between working-class and metropolitan sensibilities – appear starker than ever. In May’s devolved elections, Scottish, Welsh and Northern Irish politics became yet more distinct – giving the impression of a kingdom coming apart at the seams. All the while, more and more voices in our national politics seek to pin the blame for the challenges facing our country on a single section of society, whether immigrants, Muslims or another group.

This trend stretches beyond our borders. From Ukip, the French Front National and Austria’s Freedom Party to Podemos in Spain and Italy’s Five Star Movement, new populist parties of the right and left are on the rise across Europe. In the United States, Bernie Sanders is tapping into the energy of Occupy Wall Street, while Donald Trump has emerged as the heir to the Tea Party: a poster boy for division and recrimination.

Trump’s rise should be a warning for us Brits. The New York Times commentator David Brooks has described his success as less indicative of the emergence of a new school of thought, or movement, and more of dissatisfaction with the status quo. Trump’s campaign has tapped into a complex cocktail of grievances, from the loss of manufacturing jobs in a globalised economy to rising inequality and raw anger felt by many white working-class Americans at demographic and cultural changes.

In the run-up to last year’s general election, as I travelled around the country, I was confronted time and time again with the reality that in the UK – just like in the US – people are afraid and angry because the world is changing in ways they fear are beyond their control. Where once they had believed that, if they worked hard, they would get ahead, too many Britons now feel that the system is rigged in favour of those born into opportunity and that those in power have abandoned them to a broken future. What it means to be British seems to have shifted around them, triggering a crisis of solidarity.

We are at a crossroads and may face nothing less than the Trumpification of British politics. In an uncertain and changing world, it is all too easy to imagine that our problems are caused by those who are different from us.

If we wish to follow the fine example set by Londoners on 5 May and choose unity and empathy over division and blame, we must accept that simply “tolerating” one another will no longer do. There is an accusation built into the very word: what you are doing is “other” or “wrong”. As Britain has become more diverse, we have come to know each other less. This makes it harder to understand how people from different walks of life feel about the big issues.

I am a Labour member because I believe, as it says on our membership cards, that, by the strength of our common endeavour, we achieve more together than we do alone. In order to develop the bonds of trust required for this to become a reality, and for our communities to flourish and our democracy to deliver for everyone, we must build a society in which people from all backgrounds actually get to know one another and lead interconnected lives. In this sense, “One Nation” – the land over which all parties seek purchase – should become more than a platitude. It should become a way of life.

Chuka Umunna is Labour MP for Streatham.

This article first appeared in the 26 May 2016 issue of the New Statesman, The Brexit odd squad