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.)
Calvert 22/Courtesy of the artist, Danila Tkachenko
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Ruin porn: the art world’s awkward obsession with abandoned Soviet architecture

Deserted fairgrounds, disused factories and forgotten military bases may look cool, but are we fetishising the remnants of such a cruel history?

Armenia, where one side of my family is from, was one of the first members of the USSR, annexed by Russia in 1922. A few years ago, when I visited this little country that perches precariously in the south of the Caucasus, I was struck most by its Soviet architecture.

Although its landscape is a hotchpotch of medieval Orthodox churches, a smattering of Persian-era domes, and brutalist concrete, it was the latter that particularly stuck out. From unfelled statues of Stalin to giant tower blocks spelling out the letters “CCCP” from a bird’s-eye view (well, half spelt-out – construction stopped partway through, with the fall of the Soviet Union), I’ve never forgotten it.

Perhaps it was so compelling because such stark physical symbols make recent history all the more tangible. A history still profoundly affecting the country of my ancestors (and all post-Soviet and communist states). But also, it just looked really cool.


Mixed air corps, Mongolia. Photo: Calvert 22/Courtesy of the artist, Eric Losito

It’s a bit passé now to mock the hipster obsession with reclaimed industrial detritus, exposed pipes and bare concrete. An aesthetic – that of a post-industrial wasteland, but a chic one – which has gripped western cities for years, and crept worldwide.

But it could be this tendency to find disused stuff visually intriguing, and a morbid fascination with cruel regimes, which has led to the art world’s obsession with abandoned Soviet architecture. A whole wave of artists and photographers have been poking around the eastern bloc’s architectural graveyard in recent years.

Late last year, we saw the hugely popular disused Soviet bus stop series by photographer Christopher Herwig, echoing photographer Sergey Novikov’s equally absorbing collection of abandoned Soviet cinemas from 2013.

Following Russian filmmaker and photographer Maria Morina’s “Atomic Cities” project four years ago, London-based artist Nadav Kander explored the “aesthetics of destruction” in his exhibition, Dust, in 2014, snapping “radioactive ruins” of secret cities on the border between Kazakhstan and Russia. The same year, Moscow photographers Sasha Mademuaselle and Sergey Kostromin travelled to the disputed region of Abkhazia, capturing fragments of its deserted infrastructure.


Fighter aviation regiment, Mongolia. Photo: Eric Losito
 

And photojournalist Anton Petrus’ now iconic pictures of Chernobyl’s abandoned amusement park have long been an internet favourite, as have numerous haunting images of Pripyet – the city famous for lying deserted following the nuclear disaster.

Jamie Rann, a lecturer in Russian at Oxford University, has written that the quality and technical accomplishment of most of this photography make the style more “ruin erotica” than “ruin porn” (the tag being used by some critics), but argues: “The enormous online popularity of this genre . . . combined with their voyeuristic, almost exploitative feel, certainly has something porny about it.”

The latest exploration of Soviet society’s skeletons can be found at the Power & Architecture season at London’s Calvert 22 Foundation. In an exhibition called Dead Space and Ruins, we see abandoned military bases and formerly mighty monuments, forgotten space ports freezing in the tundra, the ghost of an entire unused, unfinished city in Armenia lying derelict.



The unfinished "ghost city" built in Armenia to house earthquake survivors (water added by artist). Photo: Calvert 22/Courtesy of the artist, Vahram Aghasyan

The works are beautiful, but do they feed in to this zeitgeisty lust for Soviet ruins?

One of its curators, Will Strong, laments this trend. “I was keen that this didn’t become like a kind of ‘ruin lust’, ‘ruin porn’ thing; this slightly buzzwordy term that there is at the moment, this kind of fetishisation of dead space,” he tells me.

“This history is incredibly loaded, and it did not end in 1991. To sort of fetishise it in the very bourgeois western way of, ‘oh yeah, look at all this wonderful Soviet architecture, isn’t it fantastic?’ Obviously a lot of people who lived in that time hated it . . . a lot of people were very miserable under these regimes, so it’s important not to forget that.”


Gym at the Independent Radar Centre of Early Detection, Latvia. Photo: Eric Losito

He adds: “It’s more a point of reflection on how buildings were designed, what their legacy is, what their narrative is, and who the people are who live with that story. This show looks at the aftermaths of when utopia hasn’t been delivered.”

This view is echoed by the Moscow artist, Danila Tkachenko, whose work is featured in the exhibition. “It is rather a metaphor for the future, not the past,” he says. “It represents an image of a possible future. When there is a visualisation of this issue [utopia], it evokes a response in people; they see this utopia in their lives . . . There is disappointment in all utopias.”


The world's largest diesel submarine, in Russia's Samara region. Photo: Calvert 22/Courtesy of the artist, Danila Tkachenko

His Restricted Areas series explores great behemoths of European communism left to lie forgotten in the tundra of remote regions in and around Russia and Kazakhstan: the world’s largest diesel submarine, like a beached whale in the snow; a giant satellite, thatched with antennae, built to communicate with Soviet bases on other planets some day; the deserted flying saucer-like communist headquarters in a region of Bulgaria. The structures hover in blank, white space, making the photos appear black-and-white.


Deserted observatory, Kazakhstan's Almaty region. Photo: Danila Tkachenko
 

Anton Ginzburg is an artist who grew up in St Petersburg in the Eighties as the Soviet Union was disintegrating. He believes studies like his film, Turo, of disused modernist constructions in the post-Soviet bloc, appeal to people’s connection to history. After all, picking through the architectural carcasses of former societies isn’t exactly a new thing:

“Russian culture is still haunted by its Communist past, and constructivist architecture is a decaying shell for its ghosts. It is an active reminder of the recent history,” he reflects. “Perhaps [its appeal] is a mixture of memento mori, with its thrill of beauty and destruction, along with a Romantic tradition of contemplation of Greek and Roman ruins.”

(Anton Ginzburg Turo teaser from Visionaireworld on Vimeo.)

The Power & Architecture season is on at the Calvert 22 Foundation, London, from 10 June-9 October 2016. Entry is free.

Anoosh Chakelian is deputy web editor at the New Statesman.