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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A father’s murderous rage, the first victims of mass killers and Trump’s phantom campaign

From the family courts to the US election campaigns.

On 21 June, Ben Butler was found guilty of murdering his six-year-old daughter, Ellie. She had head injuries that looked like she’d been in a car crash, according to the pathologist, possibly the result of being thrown against a wall. Her mother, Jennie Gray, 36, was found guilty of perverting the course of justice, placing a fake 999 call after the girl was already dead.

When the trial first started, I clicked on a link and saw a picture of Ben and Ellie. My heart started pounding. I recognised them: as a baby, Ellie had been taken away from Butler and Gray (who were separated) after social services suggested he had been shaking her. He had been convicted of abuse but the conviction was overturned on appeal. So then he wanted his daughter back.

That’s when I spoke to him. He had approached the Daily Mail, where I then worked, to tell his story: a father unjustly separated from his beloved child by uncaring bureaucracy. I sent a writer to interview him and he gave her the full works, painting himself as a father victimised by a court system that despises men and casually breaks up families on the say-so of faceless council apparatchiks.

The Mail didn’t run the story; I suspect that Butler and Gray, being separated, didn’t seem sufficiently sympathetic. I had to tell him. He raged down the phone at me with a vigour I can remember half a decade later. Yet here’s the rub. I went away thinking: “Well, I’d be pretty angry if I was falsely ­accused and my child was taken away from me.” How can you distinguish the legitimate anger of a man who suffered a miscarriage of justice from the hair-trigger rage of a violent, controlling abuser?

In 2012, a family court judge believed in the first version of Ben Butler. Eleven months after her father regained custody of her, Ellie Butler was dead.

 

Red flags

Social workers and judges will never get it right 100 per cent of the time, but there does seem to be one “red flag” that was downplayed in Ben Butler’s history. In 2005, he pleaded guilty to assaulting his ex-girlfriend Hannah Hillman after throttling her outside a nightclub. He also accepted a caution for beating her up outside a pub in Croydon. (He had other convictions for violence.) The family judge knew this.

Butler also battered Jennie Gray. As an accessory to his crime, she will attract little sympathy – her parents disowned her after Ellie’s death – and it is hard to see how any mother could choose a violent brute over her own child. However, even if we cannot excuse her behaviour, we need to understand why she didn’t leave: what “coercive control” means in practice. We also need to fight the perception that domestic violence is somehow different from “real” violence. It’s not; it’s just easier to get away with.

 

Shooter stats

On the same theme, it was no surprise to learn that the Orlando gunman who killed 49 people at a gay club had beaten up his ex-wife. Everytown for Gun Safety, a gun control group, looked at FBI data on mass killings and found that 16 per cent of attackers had previously been charged with domestic violence, and 57 per cent of the killings included a family member. The Sandy Hook gunman’s first victim was his mother.

 

Paper candidate

Does Donald Trump’s presidential campaign exist if he is not on television saying something appalling about minorities? On 20 June, his campaign manager Corey Lew­andowski quit (or was pushed out). The news was broken to the media by Trump’s 27-year-old chief press officer, Hope Hicks. She was talent-spotted by The Donald after working for his daughter Ivanka, and had never even volunteered on a campaign before, never mind orchestrated national media coverage for a presidential candidate.

At least there aren’t that many staffers for her to keep in line. The online magazine Slate’s Jamelle Bouie reported that Trump currently has 30 staffers nationwide. Three-zero. By contrast, Bouie writes, “Team Clinton has hired 50 people in Ohio alone.” Trump has also spent a big fat zero on advertising in swing states – though he would argue his appearances on 24-hour news channels and Twitter are all the advertising he needs. And he has only $1.3m in his campaign war chest (Clinton has $42.5m).

It feels as though Trump’s big orange visage is the facial equivalent of a Potemkin village: there’s nothing behind the façade.

 

Divided Johnsons

Oh, to be a fly on the wall at the Johnson family Christmas celebrations. As Boris made much of his late conversion to Leave, the rest of the clan – his sister Rachel, father Stanley and brothers, Leo and Jo – all declared for Remain. Truly, another great British institution torn apart by the referendum.

 

Grrr-eat revelations

The highlight of my week has been a friend’s Facebook thread where she asked everyone to share a surprising true fact about themselves. They were universally amazing, from suffering a cardiac arrest during a job interview to being bitten by a tiger. I highly recommend repeating the experience with your own friends. Who knows what you’ll find out? (PS: If it’s juicy, let me know.)

Peter Wilby is away

Helen Lewis is deputy editor of the New Statesman. She has presented BBC Radio 4’s Week in Westminster and is a regular panellist on BBC1’s Sunday Politics.

This article first appeared in the 23 June 2016 issue of the New Statesman, Divided Britain