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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Whatever Arlene Foster did, at least no one died

After all, Northern Irish voters forgave Martin McGuiness his spell in the IRA. Plus: why did Boris Johnson get a pass on Brexit bungling?

What was Sir Ivan Rogers trying to tell us when he referred to “ill-founded arguments and muddled thinking” in his letter of resignation from the EU ambassadorship? According to “friends” quoted in the Times – which almost certainly means Rogers himself – he thinks that Liam Fox, the International Trade Secretary, and David Davis, the Brexit Secretary, were guilty of a “failure to understand briefings”. Put more crudely, he thinks the two Brexiteers are a bit thick.

I do not like the political positions of either Fox or Davis. But I note that both have science-based first degrees from universities other than Oxbridge (Fox studied medicine at Glasgow; Davis took molecular and computer sciences at Warwick). Both were also brought up in council houses. The third leading cabinet Brexiteer, the Foreign Secretary, Boris Johnson, an Old Etonian raised on a large family farm on Exmoor, is, like Rogers, a Balliol arts graduate. He is apparently excluded from complaints about brain capacity. I wonder why.

 

The Cummings man

Rogers is not the first to question Fox’s grasp of the issues. Vince Cable said in September: “He doesn’t understand what a customs union is.” If so, he is not alone, according to Dominic Cummings, the director of the Vote Leave campaign. In a 20,000-word blog that purports to explain the referendum result, Cummings states: “I am not aware of a single MP or political journalist who understands the single market – its history, its nature, its dynamics, its legal system . . . Cameron, Osborne and Clegg certainly don’t. Neither does Bill Cash [the veteran Tory Eurosceptic]. Neither does any head of the CBI. Neither do Jon Snow, Robert Peston, Evan Davis or John Humphreys [sic] so they do a rubbish job of exposing politicians’ ignorance.”

Cummings, a former special adviser to Michael Gove, offers no evidence of his own grasp of the subject. But since his rambling screed cites, among others, the 19th-century German chancellor Bismarck, the American-Israeli psychologist Daniel Kahneman and the 18th-century English statistician Thomas Bayes, I suppose we must take his erudition on all matters for granted.

 

Cash for ash

After the First World War, Winston Churchill observed, “The whole map of Europe has been changed . . . but as the deluge subsides and the waters fall short, we see the dreary steeples of Fermanagh and Tyrone emerging once again.” Now, as we grapple with Brexit, Northern Ireland’s troubles return in the contemporary form of renewable heating subsidies overpaid to businesses and farms, some of them no doubt in Fermanagh and Tyrone, and nearly all (one guesses) to members of the Loyalist community. The subsidies, overseen in an earlier ministerial position by Arlene Foster, the Unionist first minister, have led Sinn Fein’s Martin McGuinness, Foster’s deputy in the power-sharing executive, to resign, threatening the survival of the province’s eternally uneasy peace.

McGuinness argues that Foster should stand down pending an inquiry. Perhaps he is right. But whatever Foster did or didn’t do, nobody died. Which is more than can be said of McGuinness’s spell as an IRA commander, into which no inquiry was held.

 

Firm smack of regulation

The trouble with trying to create a sensible system of press regulation, which ministers are still struggling to do, is that somebody must finance it. In my view, neither government nor newspapers can be trusted as paymasters likely to respect the regulator’s independence.

Perhaps some charitable foundation or private individual with no axes to grind could be persuaded to step into the breach. But, no, the only available source of finance is Max Mosley, the ex-head of Formula One motor racing. Through family charities, he bankrolls Impress, the sole regulator recognised under legislation passed after the hacking scandal.

It is hard to imagine a less suitable paymaster. He is the younger son of Sir Oswald Mosley, the British fascist leader in whose Union Movement he was once actively involved. More recently, he sued the now-defunct News of the World for breach of privacy in reporting his involvement in a sadomasochistic sex orgy. Whether he was right or wrong to do so is beside the point. By no stretch of the imagination can he be described as a disinterested party. Following the News of the World case, Mosley tried to persuade the European Court of Human Rights that the law should require newspapers to give advance notification of their intention to expose private matters. The “victims” could then, if so minded, seek pre-publication injunctions.

This form of censorship was denounced by Milton in the 17th century. Mosley has no grasp of the most fundamental principles of press freedom and fair regulation.

 

A poor prognosis

A bad Christmas and New Year for the Wilby family, with all of us suffering colds/chest infections/flu/bronchitis/pneumonia (delete according to dramatic preference). But at least we didn’t have to risk treatment in an NHS hospital, encountering what the British Red Cross rather fancifully calls “a humanitarian crisis”. Of our two nearest hospitals, one is in special measures, while the other didn’t have a single spare bed from Boxing Day to New Year’s Eve.

The Labour Party came to office in 1997 determined that the NHS should provide standards of choice and personal attention as good as in the private sector. Only thus, its leaders reckoned, could middle-class support for the service and willingness to pay the necessary taxes be maintained. The Conservatives’ goal is the opposite: to reduce the NHS to a condition in which the middle classes abandon it, leaving a rump service for the poor. Taxes can then be cut, with the affluent needing the money for private insurance. The Tories are well on the way to success.

 

Peter Wilby was editor of the Independent on Sunday from 1995 to 1996 and of the New Statesman from 1998 to 2005. He writes the weekly First Thoughts column for the NS.

This article first appeared in the 12 January 2017 issue of the New Statesman, Putin's revenge