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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Find the EU renegotiation demands dull? Me too – but they are important

It's an old trick: smother anything in enough jargon and you can avoid being held accountable for it.

I don’t know about you, but I found the details of Britain’s European Union renegotiation demands quite hard to read. Literally. My eye kept gliding past them, in an endless quest for something more interesting in the paragraph ahead. It was as if the word “subsidiarity” had been smeared in grease. I haven’t felt tedium quite like this since I read The Lord of the Rings and found I slid straight past anything written in italics, reasoning that it was probably another interminable Elvish poem. (“The wind was in his flowing hair/The foam about him shone;/Afar they saw him strong and fair/Go riding like a swan.”)

Anyone who writes about politics encounters this; I call it Subclause Syndrome. Smother anything in enough jargon, whirr enough footnotes into the air, and you have a very effective shield for protecting yourself from accountability – better even than gutting the Freedom of Information laws, although the government seems quite keen on that, too. No wonder so much of our political conversation ends up being about personality: if we can’t hope to master all the technicalities, the next best thing is to trust the person to whom we have delegated that job.

Anyway, after 15 cups of coffee, three ice-bucket challenges and a bottle of poppers I borrowed from a Tory MP, I finally made it through. I didn’t feel much more enlightened, though, because there were notable omissions – no mention, thankfully, of rolling back employment protections – and elsewhere there was a touching faith in the power of adding “language” to official documents.

One thing did stand out, however. For months, we have been told that it is a terrible problem that migrants from Europe are sending child benefit to their families back home. In future, the amount that can be claimed will start at zero and it will reach full whack only after four years of working in Britain. Even better, to reduce the alleged “pull factor” of our generous in-work benefits regime, the child benefit rate will be paid on a ratio calculated according to average wages in the home country.

What a waste of time. At the moment, only £30m in child benefit is sent out of the country each year: quite a large sum if you’re doing a whip round for a retirement gift for a colleague, but basically a rounding error in the Department for Work and Pensions budget.

Only 20,000 workers, and 34,000 children, are involved. And yet, apparently, this makes it worth introducing 28 different rates of child benefit to be administered by the DWP. We are given to understand that Iain Duncan Smith thinks this is barmy – and this is a man optimistic enough about his department’s computer systems to predict in 2013 that 4.46 million people would be claiming Universal Credit by now*.

David Cameron’s renegotiation package was comprised exclusively of what Doctor Who fans call handwavium – a magic substance with no obvious physical attributes, which nonetheless helpfully advances the plot. In this case, the renegotiation covers up the fact that the Prime Minister always wanted to argue to stay in Europe, but needed a handy fig leaf to do so.

Brace yourself for a sentence you might not read again in the New Statesman, but this makes me feel sorry for Chris Grayling. He and other Outers in the cabinet have to wait at least two weeks for Cameron to get the demands signed off; all the while, Cameron can subtly make the case for staying in Europe, while they are bound to keep quiet because of collective responsibility.

When that stricture lifts, the high-ranking Eurosceptics will at last be free to make the case they have been sitting on for years. I have three strong beliefs about what will happen next. First, that everyone confidently predicting a paralysing civil war in the Tory ranks is doing so more in hope than expectation. Some on the left feel that if Labour is going to be divided over Trident, it is only fair that the Tories be split down the middle, too. They forget that power, and patronage, are strong solvents: there has already been much muttering about low-level blackmail from the high command, with MPs warned about the dire influence of disloyalty on their career prospects.

Second, the Europe campaign will feature large doses of both sides solemnly advising the other that they need to make “a positive case”. This will be roundly ignored. The Remain team will run a fear campaign based on job losses, access to the single market and “losing our seat at the table”; Leave will run a fear campaign based on the steady advance of whatever collective noun for migrants sounds just the right side of racist. (Current favourite: “hordes”.)

Third, the number of Britons making a decision based on a complete understanding of the renegotiation, and the future terms of our membership, will be vanishingly small. It is simply impossible to read about subsidiarity for more than an hour without lapsing into a coma.

Yet, funnily enough, this isn’t necessarily a bad thing. Just as the absurd complexity of policy frees us to talk instead about character, so the onset of Subclause Syndrome in the EU debate will allow us to ask ourselves a more profound, defining question: what kind of country do we want Britain to be? Polling suggests that very few of us see ourselves as “European” rather than Scottish, or British, but are we a country that feels open and looks outwards, or one that thinks this is the best it’s going to get, and we need to protect what we have? That’s more vital than any subclause. l

* For those of you keeping score at home, Universal Credit is now allegedly going to be implemented by 2021. Incidentally, George Osborne has recently discovered that it’s a great source of handwavium; tax credit cuts have been postponed because UC will render such huge savings that they aren’t needed.

Helen Lewis is deputy editor of the New Statesman. She has presented BBC Radio 4’s Week in Westminster and is a regular panellist on BBC1’s Sunday Politics.

This article first appeared in the 11 February 2016 issue of the New Statesman, The legacy of Europe's worst battle