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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Blow-dried and supplicant, Ivanka shows the limits of the power women are allowed in Trumpworld

A new book by the US President’s daughter has surpisingly strong echoes of medieval royalty.

Exactly 500 years ago this month, the apprentices of London rose up, ­angry with Flemish immigrants and the bankers of Lombard Street. The race riot was quelled only when a couple of dukes sent in their private armies. Hundreds of looters were arrested and some were hanged, drawn and quartered. But some rioters were as young as 13 and the city’s residents felt sorry for them.

Henry VIII wanted to look magnanimous, but not weak. And so, at the trial in Westminster Hall on 7 May, ­Cardinal Wolsey first asked for mercy on the youngsters’ behalf. He was refused.

And then three women came forward: Henry’s queen, Catherine of Aragon, and his sisters Mary and Margaret, the widowed queens of France and Scotland. Faced with three women on their knees, the king relented. “It was a scene straight from the pages of chivalry,” writes Sarah Gristwood in her history of Renaissance women and power, Game of Queens. “An intercessory function, of course, had been traditional for queens, from the biblical Esther and Bathsheba to the Virgin Mary.”

Whenever contemporary politics gets too depressing, I take refuge in history. I always hope I will gain some perspective from people whose problems are very different from my own. Yes, climate change is terrifying; but at least I don’t have scrofula! Yet modern life has a way of creeping back. Late-medieval Europe was full of resentment for “aliens”, for example, who were felt to be prospering at the expense of native populations, even if those tensions were often expressed in religious rather than nationalist terms. It was Catherine of Aragon’s parents, Isabella and Ferdinand, who expelled all Jews from Spain in 1492.

Nonetheless, I was surprised to find such strong echoes of medieval royalty in Ivanka Trump’s new book, Women Who Work. I won’t waste your time by attempting to review this seminal tome, especially as it’s largely constructed out of bits of other self-help books. The advice boils down to: be “multi-dimensional”; don’t be afraid to use “architect” as a verb; feel free to turn down Anna Wintour, when she offers you a job at Vogue straight out of university, because your true passion is real estate. If it’s a busy time at work, as it was for Ivanka on the campaign trail, go into “survival mode”. (“Honestly,” she writes, “I wasn’t treating myself to a massage or making much time for self-care.”) Something for everyone.

Still, Women Who Work gave me the chance to contemplate the point of Ivanka Trump. I’ve seen her far more than I have heard her, which is no surprise, as her role in the administration is largely symbolic. What is Ivanka if not a Renaissance queen, tearfully pleading with her lord to show mercy? She is, we are told, his conscience. When his daughter’s clothing line was dropped by the US retailer Nordstrom in February, Trump tweeted: “My daughter Ivanka has been treated so unfairly by @Nordstrom. She is a great person – always pushing me to do the right thing! Terrible!”

Two months later, her name was invoked again. The First Daughter was distraught – “heartbroken and outraged”, she tweeted – at the sight of Syrian children gassed by the Assad regime. This prompted her father to bomb an airbase to atone for the slaughter of what his statement referred to as “beautiful babies”. “Ivanka is a mother of three kids and she has influence,” her brother Eric told the Telegraph. “I’m sure she said: ‘Listen, this is horrible stuff.’”

This is the power that women are granted in Trumpworld: softening, humanising, empathetic. Their tears moisten the oak-like carapace of great leaders, showing them that sometimes it’s OK to be kind – but obviously not too kind, because that’s a bit soppy and girly and gay. Women are naturally prone to emotion, of course, unlike sturdy, ­rational men, who get so cross about the way TV news is reporting their firing of the FBI director that they start sending unhinged tweets implying they have incriminating “tapes” of White House conversations.

In this structure, however, the limits of women’s power are sharply circumscribed. The tears of both Ivanka and Catherine of Aragon only provided cover for something that their lord and master wanted to do anyway. (As New York magazine urged acidly on 13 April, “Someone Please Show Ivanka Pictures of Starving Yemeni Children”.) Ivanka’s whole book is designed to render female power unthreatening by making it “feminine”; merely a complement to male power instead of a challenge to it.

To reassure us that she isn’t some frumpy bluestocking, Ivanka has crafted an image of expensive, time-consuming perfection: perfect white teeth, perfect blow-dried hair, perfectly toned body. Her make-up, clothes and home are all styled in unobtrusive neutrals. Together it says: let me in the room and I promise not to be a nuisance or take up too much space, even on the colour wheel. It’s noticeable that no woman in Trump’s orbit has “let herself go”, even though his chief strategist, Steve Bannon, has the complexion of a body that’s been found after two weeks in the water. I somehow doubt he ever makes “time for self-care”.

And don’t come at me with all that garbage about a nice frock and a manicure being “empowering”. Look at Donald Trump, the one with his own military: he has a fat arse and uses Sellotape to hold his ties in place. A president is allowed to have appetites – for women, for food, for power. His supplicant daughter gets to peddle platitudes about how you should “bond with your boss”. (Being a blood relative helps, although, sadly, Women Who Work is silent on what to do if he also fancies you.)

Is this how far we’ve come in 500 years? Ivanka Trump might try to sell herself as a modern woman, but her brand of female power is positively medieval.

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 18 May 2017 issue of the New Statesman, Age of Lies

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