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.)
Getty
Show Hide image

The most terrifying thing about Donald Trump's speech? What he didn't say

No politician uses official speeches to put across their most controversial ideas. But Donald Trump's are not hard to find. 

As Donald Trump took the podium on a cold Washington day to deliver his inauguration speech, the world held its breath. Viewers hunched over televisions or internet streaming services watched Trump mouth “thank you” to the camera, no doubt wondering how he could possibly live up to his deranged late-night Twitter persona. In newsrooms across America, reporters unsure when they might next get access to a president who seems to delight in denying them the right to ask questions got ready to parse his words for any clue as to what was to come. Some, deciding they couldn’t bear to watch, studiously busied themselves with other things.

But when the moment came, Trump’s speech was uncharacteristically professional – at least compared to his previous performances. The fractured, repetitive grammar that marks many of his off-the-cuff statements was missing, and so, too, were most of his most controversial policy ideas.

Trump told the crowd that his presidency would “determine the course of America, and the world, for many, many years to come” before expressing his gratefulness to President Barack Obama and Michelle Obama for their “gracious aid” during the transition. “They have been magnificent," Trump said, before leading applause of thanks from the crowd.

If this opening was innocent enough, however, it all changed in the next breath. The new president moved quickly to the “historic movement”, “the likes of which the world has never seen before”, that elected him President. Following the small-state rhetoric of his campaign, Trump promised to take power from the “establishment” and restore it to the American people. “This moment," he told them, “Is your moment. It belongs to you.”

A good deal of the speech was given over to re-iterating his nationalist positions while also making repeated references to the key issues – “Islamic terrorism” and families – that remain points of commonality within the fractured Republican GOP.

The loss of business to overseas producers was blamed for “destroying our jobs”. “Protection," Trump said, “Will lead to great strength." He promised to end what he called the “American carnage” caused by drugs and crime.

“From this day forward," Trump said, “It’s going to be only America first."

There was plenty in the speech, then, that should worry viewers, particularly if you read Trump’s promises to make America “unstoppable” so it can “win” again in light of his recent tweets about China

But it was the things Trump didn't mention that should worry us most. Trump, we know, doesn’t use official channels to communicate his most troubling ideas. From bizarre television interviews to his upsetting and offensive rallies and, of course, the infamous tweets, the new President is inclined to fling his thoughts into the world as and when he sees fit, not on the occasions when he’s required to address the nation (see, also, his anodyne acceptance speech).

It’s important to remember that Trump’s administration wins when it makes itself seem as innocent as possible. During the speech, I was reminded of my colleague Helen Lewis’ recent thoughts on the “gaslighter-in-chief”, reflecting on Trump’s lying claim that he never mocked a disabled reporter. “Now we can see," she wrote, “A false narrative being built in real time, tweet by tweet."

Saying things that are untrue isn’t the only way of lying – it is also possible to lie by omission.

There has been much discussion as to whether Trump will soften after he becomes president. All the things this speech did not mention were designed to keep us guessing about many of the President’s most controversial promises.

Trump did not mention his proposed ban on Muslims entering the US, nor the wall he insists he will erect between America and Mexico (which he maintains the latter will pay for). He maintained a polite coolness towards the former President and avoiding any discussion of alleged cuts to anti-domestic violence programs and abortion regulations. Why? Trump wanted to leave viewers unsure as to whether he actually intends to carry through on his election rhetoric.

To understand what Trump is capable of, therefore, it is best not to look to his speeches on a global stage, but to the promises he makes to his allies. So when the President’s personal website still insists he will build a wall, end catch-and-release, suspend immigration from “terror-prone regions” “where adequate screening cannot occur”; when, despite saying he understands only 3 per cent of Planned Parenthood services relate to abortion and that “millions” of women are helped by their cancer screening, he plans to defund Planned Parenthood; when the president says he will remove gun-free zones around schools “on his first day” - believe him.  

Stephanie Boland is digital assistant at the New Statesman. She tweets at @stephanieboland