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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How the Saudis are making it almost impossible to report on their war in Yemen

The conflict is not getting anything like the media attention it deserves.

This article has been co-authored by Ahmed Baider, a fixer based in Yemen's capital Sana’a, and Lizzie Porter, a freelance journalist based in Beirut who is still waiting for a chance to report from Yemen.

Ten thousand people have died. The world’s largest cholera epidemic is raging, with more than 530,000 suspected cases and 2,000 related deaths. Millions more people are starving. Yet the lack of press attention on Yemen’s conflict has led it to be described as the “forgotten war”.

The scant media coverage is not without reason, or wholly because the general public is too cold-hearted to care. It is very hard to get into Yemen. The risks for the few foreign journalists who gain access are significant. And the Saudi-led coalition waging war in the country is doing its best to make it difficult, if not impossible, to report from the area.

Working in Sana’a as a fixer for journalists since the start of the uprisings of the so-called Arab Spring in 2011 has sometimes felt like the most difficult job in the world. When a Saudi-led coalition started bombing Yemen in support of its president, Abdrabbuh Mansour Hadi, in March 2015, it became even harder.

With control of the airspace, last summer they closed Sana’a airport. The capital had been the main route into Yemen. Whether deliberately or coincidentally, in doing so, the coalition prevented press access.

The media blackout came to the fore last month, when the Saudi-led coalition turned away an extraordinary, non-commercial UN flight with three BBC journalists on board. The team – including experienced correspondent Orla Guerin – had all the necessary paperwork. Aviation sources told Reuters that the journalists’ presence was the reason the flight was not allowed to land.

The refusal to allow the press to enter Yemen by air forced them to find an alternative route into the country – a 13-hour sea crossing.

After the airport closure in August 2016, an immensely complex set of procedures was created for journalists travelling on the UN flights operating from Djibouti on the Horn of Africa into Sana’a. The level of paperwork required offered only a glimmer of hope that the media would be allowed to highlight the suffering in Yemen. Each journalist’s application required visas, permits, return ticket fees of $1,100 per person (later reduced to $250) and a great deal of bureaucracy.

But there were other issues, too: equipment that all journalists take with them to war zones as standard – flak jackets, helmets and satellite phones – were not allowed on the UN flights, increasing fears about operating in the country.

The new arrangement significantly increased the cost and time involved – two things that most media organisations are short of. A team of two would have to budget for several thousand dollars for a week-long reporting trip. This was limiting for even large media organisations with big budgets.

Still, the system worked. A few journalists started to come and cover the situation from the ground. Yemenis were happy to share their stories. On one assignment to villages on the west coast, people ran to talk to us and show us their malnourished children as soon as we arrived. It was obvious from the look in their eyes that they wanted to tell people what had been happening.

That changed after last October, when three or four large international media teams had reported from Yemen, broadcasting images of starving children and bombed-out homes to TVs around the world. The Saudi-led coalition began refusing to let journalists fly in with the UN. They said that the flights were for humanitarian workers only, or that the safety of journalists could not be guaranteed. Members of the press who had been preparing trips suddenly had their plans quashed. Time assigned to reporting the conflict had to be given to more accessible stories.

Over the next few months, media access was again opened up, only to be followed by U-turns and further paralysis. And when the Saudi-led coalition did grant access, it was only under certain, excruciating conditions.

As well as a press visa granted by the opposition authorities in the capital, from February this year, journalists have required a second visa granted by the Saudi-backed government in Aden.

It felt impossible. Why would they give press visas for journalists to visit opposition territory? The doubts were proved correct when trying to convince Hadi government officials to issue press access. The consular envoy in Cairo refused. A call to their team in London resulted in another “no”. 

This meant applying to the authorities in Aden for secondary visas for the tenacious journalists who hadn’t already been put off by the cost and access hurdles. One example of the petty requirements imposed was that a journalist’s visa could not be on paper: it had to be stamped into his or her passport. Of course, that added a week to the whole affair.

After months of media blockade, journalists were finally able to access Yemen again between March and May this year. At present, members of the media are officially allowed to travel on the UN flights. But how many more times journalists will be refused entry remains unknown. Not all crews will have the resources to make alternative arrangements to enter Yemen.

The New Statesman interviewed one French documentary producer who has reported from Yemen twice but who has not been able to access the country since 2015, despite multiple attempts.

Upon each refusal, the Saudi-led coalition told the journalist, “to take commercial flights – which didn’t exist…” he explained, requesting anonymity. “Saudi Arabia and its coalition are doing everything they can to discourage journalists as well as organisations like Human Rights Watch and Amnesty International.”

He said that blocking media access was part of the Saudi-led coalition’s strategy to “bring [Yemen] to its knees in an atmosphere of silence and indifference.”

Access is not the only problem. Reporting in Yemen carries great risks. The British Foreign Office warns of a “very high threat of kidnap and unlawful detention from militia groups, armed tribes, criminals and terrorists”. It specifically mentions journalists as a group that could be targeted.

Editors are increasingly nervous about sending journalists into war zones where kidnap is a significant danger. The editorial green light for arranging assignments to Yemen is – understandably – ever harder to obtain.

Although they are willing to work with recognised press teams, the Houthis and Saleh loyalists have also been known to be suspicious of journalists.

“Even before the Saudis banned access to Yemen, it is important to remember that Yemen is one of the most difficult countries for journalists to access,” added the anonymous journalist.

The amount of press attention dedicated to Yemen simply does not reflect the extent of country’s suffering and political turmoil. Journalists’ rights groups, international organisations and governments need to step up pressure on Saudi Arabia to ease media access to the country.

The coalition last month proposed that the UN take control of Sana’a airport, which it refused. Whoever runs it, the hub must be opened, so that journalists can get in, and Yemenis desperately needing medical treatment abroad can get out.

Failing this, coupled with the extreme risks and costs of reporting, the world will never see the graves of 10,000 people. Yemenis will continue to die starving and invisible, in destroyed homes.