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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This is no time for civility towards Republicans – even John McCain

Appeals for compassion towards the cancer-stricken senator downplay the damage he and his party are doing on healthcare.

If it passes, the Republican health care bill currently being debated in the Senate will kill people. Over the past few months, the party has made several attempts to repeal and replace the Affordable Care Act passed under Obama, all of which share one key feature: they leave millions more people without healthcare.

Data indicates that every year, one in every 830 Americans who lack healthcare insurance will die unnecessarily. A report by the Congressional Budget Office suggests that the newest “skinny repeal” plan will leave an extra 16 million individuals uninsured. That’s an estimated annual body count of 19,277. Many more will be forced to live with treatable painful, chronic and debilitating conditions. Some will develop preventable but permanent disabilities and disfigurements - losing their sight, hearing or use of limbs.

This is upsetting to think about as an observer - thousands of miles across the Atlantic, in a country that has had universal, free at the point of delivery healthcare for almost seven decades. It is monstrously, unfathomably traumatic if you’re one of the millions of Americans who stand to be affected. If you’ve got loved ones who stand to be affected. If you’ve got an ongoing health condition and have no idea how you’ll afford treatment if this bill passes.

I’ve got friends who’re in this situation. They’re petrified, furious and increasingly exhausted. This process has been going on for months. Repeatedly, people have been forced to phone their elected representatives and beg for their lives. There is absolutely no ambiguity about consequences of the legislation. Every senator who supports the health care bill does so in the knowledge it will cost tens of thousands of lives - and having taken calls from its terrified potential victims.

They consider this justifiable because it will enable them to cut taxes for the rich. This might sound like an over simplistic or hyperbolic assertion, but it’s factually true. Past versions of the bill have included tax cuts for healthcare corporations and for individuals with incomes over $200,000 per year, or married couples making over $250,000. The current “skinny repeal” plan has dropped some of these changes, but does remove the employer mandate - which requires medium and large businesses to provide affordable health insurance for 95 per cent full-time employees.

On Tuesday, Senator John McCain took time out from state-funded brain cancer treatment to vote to aid a bill that will deny that same medical care to millions of poorer citizens. In response, ordinary US citizens cursed and insulted him and in some cases wished him dead. This backlash provoked a backlash of its own, with commentators in both the UK and US bemoaning the lack of civility in contemporary discourse. The conflict revealed a fundamental divide in the way we understand politics, cause and effect, and moral culpability.

Over 170 years ago, Engels coined the term “social murder” to describe the process by which societies place poor people in conditions which ensure “they inevitably meet a too early… death”. Morally, it’s hard to see what distinguishes voting to pass a healthcare bill you know will kill tens of thousands from shooting someone and stealing their wallet. The only difference seems to be scale and the number of steps involved. It’s not necessary to wield the weapon yourself to have blood on your hands.

In normal murder cases, few people would even begin to argue that killers deserve to be treated with respect. Most us would avoid lecturing victims’ on politeness and calm, rational debate, and would recognise any anger and hate they feel towards the perpetrator as legitimate emotion. We’d accept the existence of moral rights and wrongs. Even if we feel that two wrongs don’t make a right, we’d understand that when one wrong is vastly more abhorrent and consequential than the other, it should be the focus of our condemnation. Certainly, we wouldn’t pompously insist that a person who willingly took another’s life is “wrong, not evil”.

Knowing the sheer, frantic terror many of my friends in the US are currently experiencing, I’ve found it sickening to watch them be scolded about politeness by individuals with no skin in the game. If it’s not you our your family at risk, it’s far easier to remain cool and detached. Approaching policy debates as an intellectual exercise isn’t evidence of moral superiority - it’s a function of privilege.

Increasingly, I’m coming round to the idea that incivility isn’t merely justifiable, but actively necessary. Senators voted 51-50 in favour of debating a bill that will strip healthcare from millions of people. It’s unpleasant to wish that John McCain was dead—but is it illegitimate to note that, had he been unable to vote, legislation that will kill tens of thousands of others might have been blocked? Crude, visceral language can be a way to force people to acknowledge that this isn’t simply an abstract debate—it’s a matter of life and death.

As Democratic congressman Keith Ellison has argued, merely resisting efforts to cut healthcare isn’t enough. Millions of Americans already lack health insurance and tens of thousands die every year as a result. The Affordable Care Act was a step in the right direction, but the coalition of resistance that has been built to defend it must also push further, for universal coverage. Righteous anger is necessary fuel for that fight.