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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The failed French presidential candidates who refuse to endorse Emmanuel Macron

While the candidates of the main left and right parties have endorsed the centrist from nowhere, others have held back. 

And breathe.

At 8pm on Sunday night France, Europe, and much of the West let out a huge sigh of relief. After over a month of uncertainty, scandals, rebounds, debates and late surges, the results of the first round of the French Presidential Election was as predicted: Emmanuel Macron (24 per cent) will face off against Marine Le Pen (21 per cent) in the second round of the election on the 7 May.

While polls have been predicting this face-off for a while, the shocks of Brexit and the election of Donald Trump had thrown polling predictions into doubt. But France has a good track record when it comes to polling, and their surveys are considered some of the most reliable in the world. The irony is that this uncertainty has meant that the polls have never been so central to a campaign, and the role of polling in democracies has been a hot topic of debate during the election.

The biggest surprise in many ways was that there were no surprises. If there was a surprise, it was a good one: participation was higher than expected: close to 80 per cent – on par with the Presidential Elections of 2012 – whereas there were concerns it would be as low as 70 per cent. Higher participation is normally a bad sign for the extremes, who have highly motivated voters but a limited base, and who often do better in elections when participation is low. Instead, it boosts the traditional parties, but here instead of the traditional right-wing Republican (Fillon is at 20 per cent) or Socialist parties (Hamon at 6 per cent), it was in fact the centre, with Emmanuel Macron, who benefited.

So France has so far not succumbed to the populist wave that has been engulfing the West. The contagion seemed to be spreading when the Italian Prime Minister Matteo Renzi lost a referendum on reforming the constitution, but the fightback started in Austria which rejected the far-right candidate Norbert Hofer in its Presidential election and voted for the pro-European, former-Green independent candidate Alexander Van der Bellen. Those hopes now rest on the shoulders of Macron. After having dubbed Angela Merkel the leader of the free world during his farewell tour of Europe, Barack Obama gave his personal blessing to Macron last week.

Many wondered what impact Thursday night’s shooting on the Champs-Elysées would have. Would it be a boon for Marine Le Pen’s anti-immigration platform? Or even right-wing François Fillon’s more traditional law and order approach? In the end the effect seems to have been minimal.

In the second round, Macron is currently predicted to beat Marine Le Pen by more than 60 per cent of the vote. But how does Le Pen almost double her vote in the second round, from around 20 per cent to close to 40 per cent? The "Republican Front" that saw her father off back in 2002, when he received only 18 per cent of the vote, has so far held at the level of the two traditional political parties. Both Hamon and Fillon have called to vote for Macron in the second round to stop the Front National - Hamon put it nicely when he said he could tell the difference between political opponents, and opponents of the Republic.

But not everyone is toing the line. Sens Commun, the anti-gay marriage group that has supported Fillon through thick and thin, said that it will not call to vote for either party – a thinly veiled invitation to vote for Le Pen. And Nicolas Dupont-Aignan, a conservative, Catholic and anti-EU right wing candidate, whose 5 per cent is the reason Fillon didn’t make it to the second round, has also abstained from calling to vote for either. It is within this electorate that Le Pen will look to increase her vote.

The other candidate who didn’t call to vote for anyone was Jean-Luc Mélenchon, who fell back on a demagogic position of saying he would follow the wishes of his supporters after having consulted them. But as a spokesperson for the FN pointed out, there are remarkable congruities between their respective platforms, which can be categorised as a populism of the left and a populism of the right.

They in particular converge over the question of Europe. Aping Brexit, both want to go to Brussels to argue for reform, and if none is forthcoming put membership of the Eurozone to the electorate. While Le Pen’s anti-Europeanism is patent, Mélenchon’s position is both disingenuous and dangerous. His Plan A, as he puts it, is to attempt reform at the European level. But he knows fine well that his demands, which include revoking the independence of the European Central Bank and putting an end to austerity (the ECB, through its massive programme of quantitative easing, has already been trying to stimulate growth) will not be met. So he reverts to his Plan B, which is to leave the European Treatises and refound Europe on a new basis with like-minded members.

Who those members might be he hasn’t specified, nor has he explained how he would leave the EU - at least Le Pen had the decency to say she would put it to a referendum. Leaving the European Treatise has been in his programme from the beginning, and seems to be the real object of his desires. Nonetheless, having set himself up as the anti-Le Pen candidate, most of his supporters will vote for Macron. Others will abstain, and abstention will only help Le Pen. We’ve been here before, and the last thing we need now is complacency.

 

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