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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Millennial Man: How Emmanuel Macron is charming France's globalised youth

At the French presidential candidate's London rally, supporters cheered for a reformist. 

If it weren’t for the flags – the blue, white and red of France, but also the European Union’s starred circle – the audience’s colourful signs and loud cheers could have been confused with those of a rock star’s concert. There even were VIP bracelets and queues outside Westminster Central Hall, of fans who waited hours but didn’t make it in. This wasn't a Beyonce concert, but a rally for France’s shiny political maverick, the centrist presidential candidate Emmanuel Macron. He arrived on stage under a thunder of applause, which lasted the full minute he took to salute the first rank.

Since he resigned from his position as François Hollande’s economy minister last August, the 39-year-old relative political newbie – he used to be a banker and only joined the French government in 2014 – has created his own movement, En Marche, and has been sailing in the polls. In this he has been helped by the fall from grace of Conservative candidate François Fillon. Macron, who can count on the support of several Socialists, the centrist François Bayrou and the unofficial backing of the Elysee palace, is seen as the favourite to face hard-right Marine Le Pen in the election’s run-off in May.

A screen displayed photos of supporters from around the world (Singapore, Morocco, United States, “We’re everywhere”) as well as the hashtags and Snapchat account for the event. Rihanna’s “Diamonds” played as a team of young “helpers”, en anglais dans le texte, were guiding the 3,000 French expatriates to their seats. “We’re about 90 helpers tonight,” said Pierre-Elie De Rohan, 23. A History student at University College London, he joined the youth branch of En Marche via a school group.

The movement has been very active among students: “We’re in all London universities, King’s, Imperial, UCL”, he said. “It’s exciting”, echoed fellow helped Arcady Dmitrieff, 18, from UCL too. “We feel like we’re taking part in something bigger than us.”

Hopeful millennials are flowing to En Marche en masse. Macron is young, attractive, and though, like most French politicians, he is a graduate of the elite École Nationale d'Administration school, voters still see in him a breath of fresh air. “He’s neither left-wing nor right-wing," praised helper 18-year-old Victoria Tran. Her friend Adele Francey, 18, agreed. “He transcends the political divides that have confined us for the past thirty years," she said. “And he looks sincere," added Lena Katz, 18. “He really believes he can make a change.” The Macron brand, a mix of smart marketing, cult figure (the first letters of En Marche are Macron’s initials) and genuine enthusiasm previously unseen on the French campaign trail, has given him momentum in a political system highly based on the leader’s personality.

For Katz, Tran and many of their friends, France’s 2017 presidential race is their first election. “I want to be invested and to vote for someone I like," Tran said. “More than the others, Macron represents our generation.” Their close elders are hoping for a political renaissance, too – perhaps the one that was supposed to come with François Hollande in 2012. “I really believe he can make it," said Aurelie Diedhou, 29, a wholesale manager who has lived in London for two years. “On many topics, he’s more advanced than his rivals, a bit like Barack Obama in 2008. In France, when a politician has the pretention not to be corrupt, or to have held a job before entering politics, they’re accused of marketing themselves. But it’s just true.”

Macron occupied the stage for a good hour and a half – during which his supporters never failed to cheer, even for boring declarations such as “I want more management autonomy”. He passionately defended the European Union, and pleaded for its reform: “I am European, and I want to change Europe with you.”

Such words were welcomed by French expatriates, many of whom have feared that their life in the UK may be turned upside down by the consequences of the Brexit vote. “Britain has made a choice, which I think is a bad choice, because the middle classes have lacked perspectives, and have had doubts," Macron said. He promised to stand for the rights of the French people who “have made their life choice to settle in Britain”.

As far as Macron's UK co-ordinator, Ygal El-Harra, 40, was concerned, that the candidate would make a trip across the Channel was self evident: “We’ve got people in Bristol, Cambridge, Edinburgh, in Cornwall. And they’re not just bankers and traders: some work in delivery, restaurants, many are students... They perfectly represent French society, and we want to keep in touch with them.”

In 2012, London’s French community opted for Nicolas Sarkozy over Hollande, but the vote was very close (48 per cent to 52 per cent). Just as within France, where he appeals to both left and right-wingers, Macron’s internationally-minded liberalism, coupled with his fluent, fairly well-accented English, could win big among the expat. And they matter - there are about 100,000 votes to grab. “For us who are in London, it’s important to have an open-minded, international candidate," the teenager Tran said.

Rosa Mancer, a 45-year-old strategist who has lived in London for 20 years, agreed. “I loved what he said about Europe. We must reform it from the inside," she said. But she admitted her support for Macron was “a choice by elimination”, due to the threat of the far-right Front National and the corruption case surrounding Fillon. “He’s got no scandal behind him," she said. Unlike their younger peers, voters with more experience in French politics tended to choose the dynamic Macron because he was the least compromised of the lot. “It’s certainly not Marine Le Pen, nor Benoît Hamon, the sectarist Fillon or the Stalinist Jean-Luc Mélenchon, who will rebuild our fossilised France”, said Roland Stern, a Frenchman in his sixties. “In 1974, Giscard D’Estaing didn’t have a party, either. But once he had won, the others followed him.”

British politicians had come to see the French phenomenon, too. Labour’s Denis MacShane and former Deputy Prime Minister Nick Clegg sat among the VIPs. For the latter, the enthusiasm around a promising and brilliant politician rang a bell. Looking back on the 2010 general election, the former Liberal Democrat leader reflected: “Although my platform was very different at the time, the basis was that the status quo was letting people down and that we needed something different.” Clegg’s advice to Macron? “Make sure you seek to set and manage people’s expectations.”

As Clegg knows too well, there is a danger in bringing everyone together, and that is keeping everyone together without disappointing them all. If his name comes first on the evening of May 7, Macron’s real challenge will begin: forming a government with his supports for a broad political spectrum, and dropping vague pledges and marketing slogans to map out a clear way ahead.

In Westminster, hundreds of supporters were literally behind him, seated in tiers on stage. A massive screen showed a live close-up of Macron's youthful face. Something in his picture-perfect smile seemed to wonder what would happen if the crowd stopped cheering.