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 far right rises as the Nordic welfare model is tested to breaking point by immigration

Writing from Stockholm, the New Statesman’s editor observes how mass immigration has tested the old Scandinavian model of welfare capitalism.

In the summer of 1999 I was commissioned by a Scandinavian magazine to write about the completion of the longest road-and-rail link in Europe, connecting Denmark and Sweden across the Øresund strait at the gateway to the Baltic Sea. I was a guest at the ceremony, along with assorted Swedish and Danish royalty, at which the final girder of the concrete and steel-cable-stayed bridge was fitted into place.

It was a cold day but the mood was joyful. The Øresund Fixed Link symbolised the new Europe of open borders and free movement of people. There was much excitement about the creation of an economic zone centred on Copenhagen but incorporating Malmö and the university town of Lund in Sweden. The Øresund Bridge has since become an icon of Scandinavian culture, in part because of the success of the noirish television crime series The Bridge, starring the blank-eyed Sofia Helin as the Swedish police detective Saga Norén, which fetishises the structure in its brilliantly stylised opening credits.

Emergency measures

Last autumn, after Angela Merkel declared that Germany’s borders were open to Syrian refugees, it was across the Øresund that tens of thousands of desperate people began arriving in Sweden, straining the country’s habitual openness to incomers. They were arriving not just from Syria but from Afghanistan, Iraq, Pakistan, Eritrea and elsewhere in Africa – sometimes as many as 10,000 a week. In 2015, 163,000 people registered for asylum in Sweden, including 36,000 unaccompanied children. Many others are presumed to have entered the country illegally. (The comparative figure registering for asylum in Germany was 1.2 million and in Denmark 25,000. David Cameron has pledged to resettle 20,000 Syrian refugees in Britain by 2020.)

There was a sense last November that Stefan Löfven’s minority Social Democratic government was losing control of the situation. As a result, Sweden was forced to introduce emergency border controls, as well as security checks for those arriving across the bridge from Denmark. The rules of the Schengen passport-free area allow for such measures to be enacted in a crisis. Denmark responded by tightening border controls with Germany as fences and barriers were erected across Europe in an attempt to stem the flow of refugees heading north along the so-called western Balkan route.

Sweden’s Blair

To the outsider, Sweden no longer seems to be a country at ease with itself. Mass immigration has tested the old Scandinavian model of welfare capitalism to near breaking point and resentment is festering. “Immigration is now the number one issue facing our country,” Johan Forssell told me when we met at the Riksdag in Stockholm. He is a former chief of staff for Fredrik Reinfeldt, prime minister from 2006-14. As a former leader of the Moderate Party, Reinfeldt is a conservative, but, in his commitment to free markets and open borders, the politician he most resembles is Tony Blair. I was a guest at a lunch for Reinfeldt in London last autumn, and, as he defended his immigration policies, I was struck above all by his liberalism.

In August 2014, in a celebrated speech, he called on his fellow Swedes to “open their hearts” and “show tolerance” to immigrants and asylum-seekers. The speech was received with derision. It surely contributed to the defeat of the Moderate-led centre-right coalition in the general election in which the far-right Sweden Democrats, led by Jimmie Åkesson, recorded their best ever performance, winning 49 out of 349 parliamentary seats. “It was a brave speech, but Freddie didn’t prepare the people for it,” one senior Swedish politician said to me.

Editorial positions

One afternoon I visited Peter Wolodarski, the 38-year-old editor-in-chief of Sweden’s leading quality daily newspaper, Dagens Nyheter (“Today’s News”), at his office in Stockholm. The son of a Polish-Jewish architect who came to Sweden in the 1960s, Wolodarski is highly influential: editor, columnist and television commentator, and an unapologetic liberal internationalist. He likened his politics to David Miliband’s. In the past, Dagens Nyheter, which is privately owned by the Bonnier family, supported the then-hegemonic Social Democrats but, reflecting the fluidity and shifting alliances of Swedish politics, it now pursues what it describes as an “independently liberal” editorial position.

Wolodarski, who used to edit the comment pages, is slim and energetic and speaks perfect English. We discussed the EU referendum in Britain, which alarmed and mystified him, and Islamist terror as well as the rise of the anti-immigrant Sweden Democrats. Security at the Dagens Nyheter offices has been tightened considerably since the Charlie Hebdo massacre – Wolodarski’s paper as well as others in the group republished Charlie cartoons – and it has been reported that as many as 300 Swedish nationals are fighting for Isis in Syria. One Swede, Osama Krayem, is suspected of being part of the group that carried out the Brussels attacks in March. The Sweden Democrats have seized on this as further evidence of the failures of Nordic multiculturalism.

A refugee’s story

One morning I visited a refugee registration centre in Märsta in the northern suburbs. The people there were fleeing war or persecution. Each was waiting to discover where next they would be moved while their asylum application was processed.

One young, secular Muslim woman from Gambia told me she was escaping an arranged marriage (to her mother’s polygamous brother, who was in his sixties) and the horror of female genital mutilation. Articulate and frustrated, she wept as we talked. The next day, I received an email from her. She was now in a small town in the far north. “It is remote here and cold,” she wrote. And then she wished me a “safe return journey” to London.

Jason Cowley is editor of the New Statesman. He has been the editor of Granta, a senior editor at the Observer and a staff writer at the Times.

This article first appeared in the 05 May 2016 issue of the New Statesman, The longest hatred