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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Putin's vote-winning trick? He makes power personal

Representatives in the Russian parliament, the Duma, have long been unpopular. Yet President Putin is immune to voter's discontent.

A week before Russia’s parliamentary elections, the central square in Ekaterinburg – the fourth-largest city in Russia, a thousand miles east of Moscow – was packed with people, huddling close on a wet September night. They faced a stage decorated with a poster imploring the crowd to vote for “ours”, meaning United Russia, Vladimir Putin’s political party.

Yet it wasn’t politics for which thousands of people had braved the rain – it was music. During the perestroika and glasnost years of post-Soviet openness, Ekaterinburg was the cradle of the Russian rock scene. The home-grown bands Nautilus Pompilius, Chaif and Agata Kristi sang about freedom and change. Thus, this free concert to celebrate the 30th anniversary of the legendary Sverdlovsk Rock Club was bound to draw a crowd, and United Russia latched on to that.

A message from Dmitry Medvedev, the United Russia leader, praising local rock bands for their bravery “in those days when freedom was in deficit”, was read to the assembled fans. If freedom was a powerful word thirty years ago it has little impact on Russians today. Turnout in the election on 18 September was less than 50 per cent (and only 41.5 per cent in the Ekaterinburg region), a sign of the general political apathy. Before they went to the polls, it was hard to find anyone who was enthusiastic about voting.

“Why should I bother with voting? The result is clear: United Russia will, as always, win,” says Vyacheslav Bakhtin, who owns a small construction company in Ekaterinburg. He added: “Elections are the last thing on my mind. My business has been suffering for the last two years. We couldn’t even afford to go on a family vacation this summer.”

The Russian economy is struggling because of low oil prices, trade embargoes and geopolitical concerns. There have been public spending cuts, and the free float of the rouble led to currency devaluation and high inflation (7 per cent in August). Unemployment is rising and the base interest rate is 10.5 per cent.

There are many reasons for Russians to want a change in government, yet it appears that people do not see the link between their daily struggles and Putin’s policies.

Anna Mikhailova has recently returned from a tour of the Golden Ring of Russia (a circuit of medieval cities to the north-east of Moscow), where there is a stark contrast between the restored onion-domed churches and the crumbling villages.

“People live in poverty in crammed kummunalki [Soviet-style communal flats with several families sharing one kitchen and bathroom],” she tells me. “But they still talk about Putin the Saviour, standing up for Mother Russia.”

Apart from United Russia, 13 parties were judged eligible to stand, but the range of choice was an illusion. Olga, who requested anonymity for her own safety, explained. “We have one party – United Russia – a few pseudo-opposition parties, the Communists, the LDPR and Fair Russia who support Putin’s cause, and a bunch of nobodies that people don’t care about.”

Indeed, Gennady Zyuganov, who has led the Communist Party since 1993, campaigned under the slogan “Ten Stalinist punches against capitalism”. But although he criticised Medvedev, he didn’t touch Putin. The populist leader of the Liberal Democratic Party of Russia (LDPR), Vladimir Zhirinovsky, another political dinosaur, actively endorses Putin’s foreign policy.

If there is discontent among voters, Putin is immune to it. On the eve of the elections, United Russia’s popularity slid to just 30 per cent of total respondents in one poll, though it scored 50 per cent among those who said they were definitely going to vote. Medvedev’s own approval rating fell to 48 per cent. His message to the elderly that state pensions wouldn’t increase, and his advice to teachers to get jobs in the private sector if they weren’t happy with their state salaries, might have had something to do with it. Yet Putin’s popularity remained consistently high, at 82 per cent, according to independent pollsters the Levada Centre.

Alexey Volkov, a 40-year-old business manager, says he voted for the Communists. “I voted against United Russia, the apparatchiks stifling the president,” he explains. “Putin, on the other hand, is the best ruler since Alexander III [Russia’s emperor at the end of the 19th century].”

Representatives in the Russian parliament, the Duma, have long been unpopular and considered ineffective by the Russian people. Over the past 16 years, presidential power has expanded hugely. Since Russia adopted its new constitution in 1993, successive presidents have introduced legislation to stretch the office’s authority. In his first term as president, Putin acquired 219 new rights and duties, and as his successor Medvedev enjoyed an additional 114 responsibilities. These range from educational appointments to federal government decisions.

As predicted, United Russia topped the ballot with 54 per cent of the vote. Putin’s party claimed 343 of the 450 seats (up from 238 in 2011). The same four parties will form the Duma. The Yabloko and PARNAS parties, seen by voters as a token gesture of protest against the Kremlin, gained negligible support, with 2 per cent and 0.7 per cent, respectively.

It is ultimately Putin’s victory. In the eyes of the majority, he has restored Russia’s strength abroad, revived the defence industry and army, and reinvigorated the country with patriotism. The latter was accomplished via manipulation of the media, which has reinstated the West as the enemy and focused attention on foreign affairs at the expense of the social and economic agenda at home.

Still, with the low turnout, only 26 per cent of eligible Russians voted for Putin’s party. Though that was enough to tighten the president’s grip on the Duma, nationwide the elections paint a picture of a dejected Russia just beginning to feel discontent with the status quo. It is not yet enough to unseat Putin, but as the old Russian saying goes: a drop of water can cut through stone.

This article first appeared in the 22 September 2016 issue of the New Statesman, The New Times