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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Sheepwrecked: how the Lake District shows up World Heritage's flaws

Here's hoping future statements about farming and the environment aren't quite so sheepish.

“Extremists like George Monbiot would destroy the Lake District,” tweeted Eric Robson, presenter of Radio 4’s Gardener’s Questions. But he’s “just standing up for nature”, others shot back in Monbiot’s defence. The cause of the clash? The park’s new World Heritage status and the continuing debate over the UK’s “sheep-wrecked” countryside.

Tension is such you can almost hear Cumbria’s Vikings chuckling in their hogback graves – for sheep farming still defines the Lakes as much as any poem. Hilltop farmers, like Lizzie Weir and Derek Scrimegeour, have sweated the landscape into shape over generations. And while Wordsworth may have wandered lonely as a cloud, a few hundred pairs of pricked ears were likely ruminating nearby.

UNESCO’s World Heritage committee now officially supports this pro-farm vision: “The most defining feature of the region, which has deeply shaped the cultural landscape, is a long-standing and continuing agro-pastoral tradition,” says the document which recommends the site for approval. 

And there’s much to like about the award: the region’s small, outdoor farms are often embedded in their local community and focused on improving the health and quality of their stock – a welcome reminder of what British farms can do at their best. Plus, with Brexit on the horizon and UK megafarms on the rise, farmers like these need all the spotlight they can get.

But buried in the details of the bid document is a table showing that three-quarters of the area's protected sites are in an “unfavourable condition”. So it is depressing that farming’s impact on biodiversity appears to have been almost entirely overlooked. Whether you agree with the extent of George Monbiot’s vision for Rewilding or not, there are clearly questions about nibbled forests and eroded gullies that need to be addressed – which are not mentioned in the report from UNESCO’s  lead advisory body, ICOMOS, nor the supplementary notes on nature conservation from IUCN.

How could so little scrutiny have been applied? The answer may point to wider problems with the way the World Heritage program presently works – not just in Cumbria but around the world.

In the Lake District’s case, the bid process is set-up to fail nature. When the convention was started back in the 1970s, sites could be nominated under two categories, either “cultural” or “natural”, with the International Council on Monuments and Sites (ICOMOS) advising on the first, and the International Union for the Conservation of Nature (IUCN) on the second.

Then in 1992 a new category of “cultural landscape” was introduced to recognise places where the “combined works of nature and man” are exceptional. This means such sites are always evaluated principally by ICOMOS, giving them more resources to research and shape the verdict – and limiting the input IUCN is able to make.

Another weakness is that the evaluation bodies can only follow a state’s choice of category. So if a state nominates a site as a Cultural Landscape, then considerations about issues like biodiversity can easily end up taking a back seat.

According to Tim Badman, director of IUCN’s World Heritage Programme, this situation is in need of redress. “The way in which this separation of nature and culture works is increasingly out of tune and counter-productive,” he says. “Every natural site has some kind of relationship with people, and every cultural site has some major conservation interest, even if it might not be globally significant. We should collaborate much more to make that a virtue of the system.”

The more you think about it, the madder the notion of a “Cultural Landscape” sounds. Landscapes are, after all, inherently scoped out by man, and there is little in the natural world that humanity has left untouched. Especially those in Western Europe and especially those, like Cumbria, that have been felled and farmed by a succession of historic invaders.

Relationships between advisory bodies are also not the only failing in UNESCO’s approach; relationships between nations and the convention can be problematic too. At this month’s meeting of the committee in Poland, it was decided that the Great Barrier Reef would, once again – and despite shocking evidence of its decline – not be on UNESCO’s “In Danger” list. It prompts the question, what on earth is the list for?

The reluctance of many nations to have their sites listed as In Danger is a mixed blessing, says Badman. In some cases, the prospect of being listed can motivate reform. But it is also a flawed tool – failing to include costed action plans – and causing some governments to fear attacks from their domestic opposition parties, or a decline in their tourism.

On top of this, there is the more generalised politicking and lobbying that goes on. Professor Lynn Meskell, an Anthropologist at Stanford University, is concerned that, over the years, the institution “has become more and more political”. At the most recent session of the World Heritage Committee earlier this month, she found nominations being used to inflame old conflicts, a continuing regional dominance by Europe, and a failure to open up many “at risk” sites for further discussion. “All Yemen’s sites are in danger, for instance” she says, “yet they couldn’t afford to even send one person."

Perhaps most challenging of all is the body’s response to climate change. At the recent committee gathering, Australia raised the subject by way of suggesting it cannot be held solely be responsible for the decline of the Great Barrier Reef. And Turkey attempted to water down a reference to the Paris Climate Agreement, claiming the language used was overly “technical” and that the delegates present were too inexpert to comment.

According to Tim Badman, climate change is certainly an area that needs further work, not least because World Heritage’s present policy on the subject is now a decade old. Even the most ambitious interpretation of the Paris Climate Agreement would still see very significant damage done to Heritage sites around the world, Badman says.

There is hope of change, however. For the most polite yet sturdy response to Turkey’s objections – or, as the chair ironically puts it “this very small ecological crisis” – I recommend watching these encouraging reactions from Portugal, Phillippines and Finland (2h30) -  a push-back on technical objections that Meskell says is rare to see. IUCN will also be producing the second edition of their World Heritage Outlook this November.

Positions on the Lake District’s farms will also hopefully be given further thought. Flaws within World Heritage’s approach may have helped pull wool over the committee’s eyes, but future debate should avoid being quite so sheepish.

India Bourke is an environment writer and editorial assistant at the New Statesman.