Notes from a meeting on Ambiguities and Paradoxes in Clinical Medicine

This was an inspiring and deeply thoughtful meeting. My notes are a pale shadow of the meeting but may have some value.

The plural of anecdote is not data because important information is lost when anecdotes are gathered into data

And the singular of data is not anecdote because anecdotes are much richer and complex, more human.

Date and anecdotes have in common that they are always incomplete.

Case reports have almost disappeared from “top journals,” but there are now 200 case report journals. (How many are predatory?)

The “invisible glue” that keeps health care going: teamwork, doctors and nurses working together, mutual respect, continuity

Just as nobody can define “a good life” so there is no “good death”

Treating the symptoms of the dying simply unmasks their suffering

Life is messy, you can’t tidy it all up in the last few hours

Death comes unknown to us all

The concept of a “good death” actually increases fear

What looks like a “bad death” from the inevitably remote land of the living may be “good” for the person dying–perhaps somebody who insists on being unreconciled to dying

The concept of a “good death” gives us an illusion of control

The concept of a good death pushes death away from our lives

The concept of a “good death” attempts to sterilise death and “that distinguished thing” cannot be sterilised

Hospices are an odd space full of “wonderful people” doing “wonderful things” to “wonderful dying people” in a “wonderful place”

Doctors offer treatment, a good thing, but do they care? They certainly don’t care for patients as they care for kin.

You are not a carer because you want to be but because you have to be, says Alan Bennett. He didn’t care for the woman the van. She’d have hated to think that Bennett was her carer.

Those in nursing homes are not dying but are “incapable of living.” Alan Bennett

Medical language baffles and alienates us. It’s a harsh, unforgiving vocabulary that often seems to bear no relationship to our own emotional predicament.

How to interact with the seriously ill, their carers, and the berwaved: 1. Don’t ignore them; 2. Turn up; 3. Ask directly “How is the cancer?”; 4. Say “I don’t know what to say” if you don’t know what to say; 5. Avoid storytelling, particularly of “remarkable cures”; 6. Don’t try to be funny unless you’re sure you can carry it off

The isolation of the seriously ill and their relatives is the great unrecognised scandal of our age

There is an unbridgeable gulf between knowing about a serious illness and having (“knowing the presence of”) the illness

Serious illness is a proxy for death: we stay away

When we are seriously ill kin come closer but people in the middle ground fade away

The able bodied make the suffering of the seriously ill much worse

Most health care happens outside the health care system

Darwinism may explain how we behave around the seriously ill: we are trying to perpetuate or genes so kin selection (mating) and kin selection (children) matter most’ but “reciprocal altruism” is also important for protecting our genes and helps explain why we reach out to some of the seriously ill who are not kin

People who have young mates are most likely to desert them if they become seriously ill, taking the chance to find a new mate

But is this Darwinism too reductionist: might it be “the existential dread of death we all have” that keeps us away from the seriously ill

These days 20% of deaths are sudden; 20% swift (from cancer), and 60% slow–a big change to which we haven’t adapted

People with motor neurone disease write the best illness memoirs (they have the time)

Doctors who are seriously ill find their colleagues the most difficult people to deal with

seriously ill

 

Advertisements

Learning leadership from Henry V

This is a blog I wrote for the BMJ in 2009. http://blogs.bmj.com/bmj/2009/11/23/richard-smith-on-learning-leadership-from-henry-v/ You might be interested and even find it useful

Last week I was privileged to hear a brilliant talk—by Nicholas Janni—on what Henry V or rather Shakespeare has to teach us about leadership.

Prince Harry was, as most people know, a dissolute youth, hanging out with drunks, pimps, whores, and undesirables with the great Falstaff chief among them. But when his father, Henry IV, dies he turns away from those scoundrels. “I know thee not, old man,” he tells Falstaff: “Presume not that I’m the thing that I was.”

Once he is king Henry needs a mission, a great cause—and that mission is to conquer France not for wealth or for aggrandisement (although we may be skeptical) but for “honour,” something very important in the 15th century and not well understood in the 21st (except perhaps by the Mafia).

Janni, a coach to chief executives around the world, is keen to promote what the Greeks called “mythos” as opposed to “logos.” We live in a world where logos—business plans, strategies, and accountants—are dominant, and we must rediscover mythos, the world of myth and imagination. “Imagination,” said Einstein, “is more important than knowledge”: it shows us what can be not simply what is.” Studying Henry V allows us to enter the world of imagination and inspiration—“Oh for a Muse of fire, that would ascend the brightest heaven of invention.”

To be an effective leader you must look into your soul to understand your values and what is most important for you. You need “space to be with yourself,” perhaps through reading, walking, or listening to music. “Unto thine own self be true,” says Shakespeare in Hamlet, and very crucially leaders must examine the overlap between their values and their work. The more overlap the better, and it’s almost impossible for leaders to be effective if there is little overlap. You will be seen to be a fake. (I’ve experienced doing jobs where there was little overlap, and I couldn’t keep going.)

The test of Henry V’s leadership came at Agincourt—in Act IV. His invasion of France had been a failure. Having got bogged down at Harfleur, lost 2000 of 6000 men, and run into winter, Henry and his army are retreating to Calais when they meet the French army, which has 10 times as many men. The French offer Henry a choice: a substantial fine and a safe passage to England or a battle and certain death.

Henry choses a battle, and at 3 in the morning he walks among his troops as they can hear the French already celebrating the next day’s slaughter. He is fearful, but he cannot show it. He must show a brave, fearless face to his troops, whom he calls not colleagues but “brothers, friend, and countrymen.” This, says Janni, shows the importance of “visible leadership,” being there when times are tough and giving your troops what they need.

Next Henry meets privately with Gloucester. To him he can express his fears. Every leader needs a Gloucester, somebody to whom everything can be said—not to advise them but to be there, to listen, and to provide support.

Then Henry is called to a meeting, but first he must prepare himself. He must be alone. “I and my bosom must debate a while.” He must listen to his head and his heart in this “dark night of the soul.”

Another lesson in leadership is the importance of listening to the troops. Henry goes in disguise and joins four ordinary soldiers sat around a fire. They think that they are going to die, that it’s Henry’s fault, and that he will get away while they die. In other words, he can’t be trusted. These are hard things for a leader to hear, but leaders need to know the truth of what their troops are thinking. But they also need to be resilient, recognising that they cannot always be liked.

(At this stage I thought of Gordon Brown, somebody of whom many had such hopes but who has disappointed most. The coming election looks like his Agincourt in that he is facing near certain defeat and a massacre of his troops. Does he know what his troops are thinking? Is his “resilience” to be admired or deplored? Will he manage a St Crispin’s Day speech?)

Next Henry lets it all hang out. In one of the longest soliloquies Shakespeare wrote he expresses all the miseries of being a leader: “We must bear all. O hard condition.” This release is important for leadership.

Finally, Henry launches into his great St Crispian’s Day speech, connecting himself and his troops to his and their core values. He has overheard Westmoreland wishing they had more troops, and this gives him the theme of his speech. He connects troops with their core values not by listing them but by appealing to their imagination, asking them to imagine themselves years from now in a pub revelling in the glory of having been at Agincourt, showing their scars to those who are jealous that they were not there.

“If we are marked to die, we are enow

To do our country loss; and if to live

The fewer the men, the greater share of honour….

He that outlives this day, and comes safe home,

Will stand a tip-toe when the day is named,

And rouse him at the name of Crispian…

From this day to the ending of the world,

But we in it shall be remembered;

We few, we very happy few, we band of brothers.”

 

What leader would not love a Shakespeare to write his speech and an Olivier to deliver it for him.

Henry V

 

A novel about Brexit and time

Ali Smith’s Autumn is described  by the New York Times as the “first great Brexit novel,” https://www.nytimes.com/2017/02/17/books/review/autumn-ali-smith.html  but Smith says it’s a book about “What time is, how we experience it.” It’s the first of what will be a quartet named after the seasons. The word Brexit does not appear, although referendum does, but there are plenty of passages that are clearly about Brexit. https://richardswsmith.wordpress.com/2017/09/23/ali-smith-on-brexit/ Smith depicts well the chilly, uncertain, scared atmosphere that Brexit has created in Britain. I didn’t grasp until I read Smith’s quote afterwards that the book was about time, but it clearly is. At one point “time flies” when one of the main characters throws his watch into a canal.

There are really only four characters in the book, and they hurtle backwards and forwards in time. Elizabeth is a university lecturer about to lose her job, and Daniel is her much older neighbour whom she loves. She meets him when she’s a child, and years later reads to him as he is dying in a care home at age 101. His first question to her is always “What are you reading?” Elizabeth’s mother is wayward but towards the end of the book forms a long relationship with an actress she saw on children’s television when she was a child.

The book has both funny and poetic scenes, but it barely hangs together. You are not longing to know what happens next but you come to enjoy that it’s likely to be something strange.

Something I enjoyed about the book was learning about Pauline Boty, the only female pop art painter who died aged 26 of cancer in 1963. She was beautiful and an actress and dancer as well as a painter. She appeared briefly in Alfie, a film that symbolised the 60s, and in a Ken Russell documentary. I’d never heard of her, but Lin had.  A “free spirit,” she is a quintessentially 60s character but also keeps being lost and rediscovered. You can see the connections with time.

A lost painting of Boty’s features Christine Keeler, who symbolises the time when Britain’s relation to sexuality changed. Both Boty and Keeler are sexually charged women, but Smith tells stories not of when Keeler was an adult but of when she was a child.

I read the book in three days, not always at a time when I could concentrate fully, and I’m almost tempted to just read it again immediately–but only almost.

I took only three quotes from the book apart from those in the Brexit blog:

Nothing comic isn’t serious.

We have to hope, Daniel was saying, that the people who love us and who know us a little bit will in the end have seen us truly. In the end, not much else matters.

We have to forget. Or we’d never sleep ever again.

 

 

Why do I (or does anybody) read Karl Ove Knausgaard?

Jeffrey Eugenides said that Karl Ove Knausgård “broke the sound barrier of the autobiographical novel” in his six-volume account of his life that is 3500 pages long, called Min Kamp, (Mein Kampf , My Struggle), and finished before he was 50. Eugenides’s comment is perhaps deliberately ambivalent: the series is either a tremendous achievement or over-the-top. Or perhaps it’s both.

I’ve just finished the second volume A Man in Love, and it did seem interminable at times. He made thousands of cups of coffee and changed hundreds of nappies, and each time described himself doing so. (Actually coffee is mentioned 100 times and nappies 23 times.) Why, I wonder, did I carry on reading it? I don’t have a wholly convincing explanation, and at least one writer has compared reading Knausgaard to taking a drug.

The Economist reviewed the first volume, which I’ve also read, and picked out for features that make the book special. Firstly, the energy of his writing. Secondly, his willingness to put everything in the book. Thirdly, the book has a sense of transcendence. Fourthly, it’s his father who provides the narrative drive and “a sense of menace.”

His “willingness to put everything in” is certainly a reason, but it’s also the cause of much of the tedium. But he writes about his every move and his every thought, including deeply negative ones about himself and others. Assuming that everything he writes about happened, then there must be a fair few people offended by what he has written about them. His disregard for them fascinates.  He writes in the book about a conversation with a friend: “You went so far, put so much of yourself into it. That requires courage.’ ‘Not for me,’ I said. ‘I don’t give a shit about myself.’ He constantly disparages himself and seems to have low self-esteem, making it even more extraordinary that he should write so much about himself.

He also writes at one point about having a poor memory. You then wonder how he could remember making a cup of coffee 15 years ago. Then you begin to think that perhaps much of the book-and obviously the dialogue, of which there is a lot–is invented. And if it’s invented does that make the book a novel?

He writes as well in the book: “Everyday life, with its duties and routines, was something I endured, not a thing I enjoyed, nor something that was meaningful or made me happy.” Why then would he write so much about it and in so much detail? He answers this question later in the book:

Fictional writing has no value, documentary narrative has no value. The only genres I saw value in, which still conferred meaning, were diaries and essays, the types of literature that did not deal with narrative, that were not about anything, but just consisted of a voice, the voice of your own personality, a life, a face, a gaze you could meet. What is a work of art if not the gaze of another person?

I like that definition of a work of art “the gaze of another person.” You undoubtedly see through Knausgaard’s eyes.

And anyway Knausgaard contradicts himself, as he does often, when he writes: “Everyday life, which could bear down on us like a foot treading on a head, could also transport us with delight.” In his book we feel the foot treading on our heads, but we are also at times transported with delight. After pages of nappy changing we come to passages that fascinate, which is why I’ve found that I’ve taken a great many quotes from the book (see separate blog:)  His description in the first book of Rembrandt’s self-portrait in the National Gallery was an example and inspired me to go and look again at the picture: https://richardswsmith.wordpress.com/2016/08/23/face-to-face-with-rembrandt/

I wouldn’t describe his writing as energetic, but it does move along quickly. He’s often called “the Norwegian Proust,” and there are clear similarities: a very long account written in the first person of a man’s every move. But Proust is much more artificial and artistic, less direct; and Knausgaard doesn’t have the exquisite style of Proust. Indeed, the volume I’ve just read seemed filled with clichés and awkward phrases, which I thought (and a letter in the London Review of Books from someone who reads both Norwegian and English made the same point) might be due to a poor translation.

I don’t agree that his writing is transcendent, but I would describe it as hypnotic, which is not wholly a good thing.

His father, who dominates the first volume, which dealt with death, hardly features in the second volume, but there are these four sentences:  “A life is simple to understand, the elements that determine it are few. In mine there were two. My father and the fact that I had never belonged anywhere. It was no more difficult than that.”  It seems hugely ironic this his life can be explained with two elements but he writes 3500 words about the first 40 years of his life. But he might respond that he’s no trying to explain his life.

Although the book is about love there’s little of the transporting romantic love that usually dominates books that are about love. His love is a much more domestic love of his wife, children, and mother with all the everyday irritations that are part of such love.

What comes through most clearly in this book is that writing is everything for Knausgaard, the most important thing in his life. I, for my part, never looked forward to anything except the moment the office door closed behind me and I was alone and able to write.” And: “ ‘But you must write, Karl Ove!’ And when push came to shove, when a knife was at my throat, this was what mattered most.” But again he contradicts himself: “Children were life, and who would turn their back on life? And writing, what else was it but death? Letters, what else were they but bones in a cemetery?” And: “Everything that can be said with words can be contradicted with words, so what’s the point of dissertations, novels, literature?” But his obsession with writing explains better than anything else why he would write 3500 words about his own life. “One thing I had learned over the last six months was that all writing was about writing.”

So will I read the other four volumes? I doubt that I will.

Knausgaard

Ali Smith on Brexit

Ali Smith’s novel Autumn has been described by the New York Times as the “First Great  Brexit Novel.” https://www.nytimes.com/2017/02/17/books/review/autumn-ali-smith.html The book isn’t just about Brexit, nor is it a direct onslaught on Brexit. Indeed, you couldn’t write a credible novel set in Britain after the referendum that didn’t in some way, no matter how slightly ot tangentially, deal with Brexit. It dominates out lives. Smith’s novel begins after the referendum but goes backwards and forwards in time. The whole book captures the feel of Brexit, but here are two passages that are very much about Brexit.

“I’m tired of the news. I’m tired of the way it makes things spectacular that aren’t, and deals so simplistically with what’s truly appalling. I’m tired of the vitriol. I’m tired of the anger. I’m tired of the meanness. I’m tired of the selfishness. I’m tired of how we’re doing nothing to stop it. I’m tired of how we’re encouraging it. I’m tired of the violence there is and I’m tired of the violence that’s on its way, that’s coming, that hasn’t happened yet. I’m tired of liars. I’m tired of sanctified liars. I’m tired of how those liars have let this happen. I’m tired of having to wonder whether they did it out of stupidity or did it on purpose. I’m tired of lying governments. I’m tired of people not caring whether they’re being lied to any more. I’m tired of being made to feel this fearful. I’m tired of animosity. I’m tired of pusillanimosity.”

“All across the country, there was misery and rejoicing. All across the country, what had happened whipped about by itself as if a live electric wire had snapped off a pylon in a storm and was whipping about in the air above the trees, the roofs, the traffic.

All across the country, people felt it was the wrong thing. All across the country, people felt it was the right thing. All across the country, people felt they’d really lost. All across the country, people felt they’d really won. All across the country, people felt they’d done the right thing and other people had done the wrong thing. All across the country, people looked up Google: what is EU? All across the country, people looked up Google: move to Scotland. All across the country, people looked up Google: Irish passport applications.

All across the country, people called each other cunts. All across the country, people felt unsafe. All across the country, people were laughing their heads off. All across the country, people felt legitimized. All across the country, people felt bereaved and shocked. All across the country, people felt righteous. All across the country, people felt sick. All across the country, people felt history at their shoulder. All across the country, people felt history meant nothing. All across the country, people felt like they counted for nothing. All across the country, people had pinned their hopes on it. All across the country, people waved flags in the rain. All across the country, people drew swastika graffiti. All across the country, people threatened otherpeople. All across the country, people told people to leave. All across the country, the media was insane. All across the country, politicians lied. All across the country, politicians fell apart. All across the country, politicians vanished. All across the country, promises vanished. All across the country, money vanished. All across the country, social media did the job. All across the country, things got nasty. All across the country, nobody spoke about it. All across the country, nobody spoke about anything else. All across the country, racist bile was general. All across the country, people said it wasn’t that they didn’t like immigrants. All across the country, people said it was about control. All across the country, everything changed overnight. All across the country, the haves and the have nots stayed the same. All across the country, the usual tiny per cent of the people made their money out of the usual huge per cent of the people. All across the country, money money money money. All across the country, no money no money no money no money.

All across the country, the country split in pieces. All across the country, the countries cut adrift.

All across the country, the country was divided, a fence here, a wall there, a line drawn here, a line crossed there, a line you don’t cross here,

a line you better not cross there,

a line of beauty here,

a line dance there,

a line you don’t even know exists here,

a line you can’t afford there,

a whole new line of fire,

line of battle,

end of the line,

here/ there.”

 

My ridiculous encounter with Enoch Powell

This morning I listened to a discussion on the radio about a play based on Enoch Powell’s infamous “rivers of blood speech.” http://www.telegraph.co.uk/comment/3643823/Enoch-Powells-Rivers-of-Blood-speech.html The play is not about Powell or even racism directly but about the speech. I was prompted both to read the speech for the first time and to remember my ridiculous protest against it.

The speech was delivered to a Tory party meeting in Birmingham on 20 April 1968. It was prompted by a forthcoming bill on racial discrimination. That year saw “the summer of love,” the end of the criminalisation of male homosexuality, the legalisation of abortion, and me being 16. I was a member of the Greenwich Young Communist League and was outraged by the speech even though I have never read it until today.

Reading the speech I’m struck first by the complexity and even beauty of the language and the classical references. I didn’t know then but I know now that Enoch Powell was one of the best educated and literary of politicians who had had a first class classical education. His book on the politics of the NHS, which I read 40 years after his infamous speech, is, I have argued, the best book on the subject. https://richardswsmith.wordpress.com/2017/07/11/the-best-book-ever-written-about-the-politics-of-the-nhs/

Early in the speech Powell presents himself as the messenger who must say important but shocking things, and he asks his audience not to confuse the messenger and the message; in doing so he refers to an ancient belief:

“Above all, people are disposed to mistake predicting troubles for causing troubles and even for desiring troubles: “If only,” they love to think, “if only people wouldn’t talk about it, it probably wouldn’t happen.”

Perhaps this habit goes back to the primitive belief that the word and the thing, the name and the object, are identical.”

Another classical reference comes soon after:

“Those whom the gods wish to destroy, they first make mad. We must be mad, literally mad, as a nation to be permitting the annual inflow of some 50,000 dependants, who are for the most part the material of the future growth of the immigrant-descended population. It is like watching a nation busily engaged in heaping up its own funeral pyre.”

Then he refers to the Nazis, knowing that most of his audience would have fought in the war, and makes a colourful reference to appeasers:

“The same newspapers which year after year in the 1930s tried to blind this country to the rising peril which confronted it, or archbishops who live in palaces, faring delicately with the bedclothes pulled right up over their heads.”

The centrepiece of his speech is the story of the “white widow,” the last white woman in a street filled with Negroes, as he calls them. She’s frightened to go out:

“She finds excreta pushed through her letter box. When she goes to the shops, she is followed by children, charming, wide-grinning piccaninnies.”

His reference to “wide-grinning piccaninnies” was the second most awful and widely remembered phrase from the speech.

He attacked the whole idea of integration. He didn’t refer to Apartheid, but it’s as if he approved of it. It was not his “solution” for Britain: rather he wanted immigrants to be encouraged to “go home.”

“The other dangerous delusion from which those who are wilfully or otherwise blind to realities suffer, is summed up in the word “integration.” To be integrated into a population means to become for all practical purposes indistinguishable from its other members.”

His speech didn’t actually contain the phrase “rivers of blood,” but journalists shortened his quote from Virgil’s Aeneid:

As I look ahead, I am filled with foreboding; like the Roman, I seem to see “the River Tiber foaming with much blood.”

Outraged, I set out from Kidbrooke, a suburb in South London where I lived, with a communist friend to join a protest against the speech. Unfortunately we neglected to find out where the protest was being held. So when we got into Central London we found a phone box (no mobile phones then) rang Challenger, the Young Communist League newspaper, and somebody told us that the protest was outside Powell’s house in Eaton Square. But where was Eaton Square and how did we get there? And which number did he live at? This was all decades before Google and Google Maps, so it took us a long time to find our way.

When we eventually arrived in Eaton Square it was empty but for two policemen and lots of bits of paper. [ The policeman were, of course, unarmed: now there would be 30 policeman with machine guns and the whole square cordoned off.] Shamefacedly we approached the policemen: “Excuse us, but have you seen a demonstration?”

“It’s over, mate. You’ve missed it. They’re in the pub round the corner.”

We went to the pub and continued our protest over pints of bitter.

Powell

 

Schopenhauer, the Economist, and cancer

This morning I’ve read a disappointingly shallow account in the Economist of the attempt to cure cancer and a quote from Schopenhauer that could be sent as a letter to the Economist in response to its articles on cancer.

I’m an admirer of the Economist, but it’s in thrall to technology. I find the science section the weakest in the magazine, and I rarely read it. The articles on cancer argue that it’s only a matter of time before cancer will be cured. It’s true that much has been achieved in the past 60 years in stopping people dying of cancer, but it may be overoptimistic to think that this progress will continue to the point of nobody dying of cancer.

The article makes the almost universal mistake of concentrating on health care, failing to recognise that health care accounts for only around 10% of the factors that determine how long we live and how much we suffer. But the Economist’s two biggest failings are, firstly and ironically, to hardly consider the economics of it all and, secondly, to think what would happen when cancer was cured.

The point is made that most new treatments for cancer are extremely expensive, but the “opportunity costs” are not considered at all. By spending so much money on expensive treatments we divert resources from activities and investments (education, the environment, housing, community development, social care, the arts, social care, primary care, mental health) that could do much more to lengthen life and reduce suffering–and provide more “meaning.” Plus if we wanted maximum value from our investments we would concentrate on getting the treatments that do work to those who have no access to them rather than searching for new treatments, particularly as the astronomical costs of those individually-tailored treatments will increase inequality, which itself is highly harmful both to those who have and those who have not.

But let us suppose that cancer is cured? What then? We all die of something else, probably dementia or frailty. The length of life may increase, but the period of unhealthy and often dependent life will increase more. The costs of that, both emotional and financial, will be huge.

This is how Schopenhauer puts it–I have added just one phrase in square brackets.

“For whence did Dante take the materials of his hell but from our actual world? And yet he made a very proper hell out of it. But when, on the other hand, he came to describe heaven and its delights, he had an insurmountable difficulty before him, for our world affords no materials at all for this . . . . Every epic and dramatic poem [and programme to cure cancer] can only represent a struggle, an effort, a fight for happiness; never enduring and complete happiness itself. It conducts its heroes through a thousand dangers and difficulties to the goal; as soon as this is reached it hastens to let the curtain fall; for now there would remain nothing for it to do but to show that the glittering goal in which the hero expected to find happiness had only disappointed him, and that after its attainment he was no better off than before.”