What great doctors do with dying patients and when they make a mistake

I read this morning in Sherwin B Nuland’s magnificent book “How We Die” about how doctors abandon their patients once they reaiise that they are dying and that bioengineers, as Nuland, a surgeon, calls doctors, are no longer needed. It brought back memories of a doctor who did the opposite, and after a long search I found the blog in which I told her story. https://blogs.bmj.com/bmj/2014/06/26/richard-smith-the-best-doctors-and-their-errors/ (I couldn’t be more specific about the mistake, to avoid breaking confidentiality.)

I’m listening to Sandy Ruddles (not her real name), an ordinary general physician who does some rheumatology, present a case, and I’m feeling some regret at having given up the sacred calling of being a clinician. Oddly, the case Sandy is presenting was disastrous, a catalogue of errors.

What impressed me was not Sandy’s knowledge and technical skills, which are no doubt considerable, but her humanity. When it finally became apparent that her patient was going to die, Sandy went and told the patient and her family, and faced the anger and bitterness they felt. She described to them how the doctors, herself, but also the pathologists, dermatologists, and radiologists, had missed the diagnosis a year previously despite it being obvious in retrospect.

Sandy spent an hour every day talking to the patient and her family, and slowly they accepted what had happened and that the patient was going to die. When the patient transferred to a hospice, Sandy went to see her once a week until she died.

That fatal conversation with the patient and her family cannot have been easy, and many doctors would, I fear, have avoided it. Indeed, the pathologist, dermatologist, and radiologist did avoid it, even though complicit in the errors. And very few doctors would have spent an hour a day talking to a dying patient. One of Sandy’s main messages to the young doctors at the meeting was talk to the dying, care for them, don’t think that you are wasting your time on somebody who cannot be cured.

After the presentation I chatted to Sandy, and told her how impressed I’d been by her presenting such a disastrous case to the young doctors. Most doctors present cases that show how clever they are, rather than how stupid, but all doctors make mistakes—and learning from them, rather than denying them, is central to becoming a good doctor.

I told Sandy that I’d seen a professor of general practice tell a conference how he’d been operated on by a friend who had nearly killed him by making a mistake. Indeed, the professor had had a cardiac arrest before the error was finally recognised. The surgeon did not acknowledge the error at all until the professor said: “You nearly killed me. We can’t avoid it. We have to talk about it.” How awful, those in the audience thought, that the patient rather than the doctor should have to start the conversations that had to be had. Worse, the patient had to console the doctor.

Sandy immediately countered with a similar story. A colleague had been treating another colleague’s wife, and mistakes had been made. The patient asked to be transferred to Sandy. She tried to persuade the doctor who had made the mistake to talk to the patient, but he refused. There was no way to force him.

Famously, good surgeons know how to operate, better surgeons know when to operate, and the best surgeons know when not to operate. I suggest that poor doctors run away from their errors, good doctors acknowledge and learn from them, and the best doctors not only acknowledge and learn from their errors, but journey with the patient through the pain they’ve created, no matter how uncomfortable the journey.

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Bertrand Russell’s advice to Catherine Marshall on how to counter low spirits

Sydney Smith’s excellent advice to Lady Georgina Cavendish is something I return to again and again. https://richardswsmith.wordpress.com/2016/09/20/advice-from-rev-sydney-smith-to-lady-georgiana-cavendish-on-how-to-respond-to-low-spirits/ Now I have encountered a new version from the philosopher Bertrand Russell, which also seems excellent to me. There is overlap between the two.

Russell gave his prescription for low spirits to Catherine Marshall, a pacifist and a suffragette who was the honorary secretary of the No Coalition Fellowship (NCF) during the First World War. She did great and effective work with the government to reduce the ill treatment of men who refused to be conscripted, but she was strongly criticised for her work by members of the NCF who believed that any truck with the government was support for the war they strongly opposed. This criticism was the cause of her low spirits, and Russell took her away to the country and gave her this prescription on how to counter low spirits:

Sunlight

Moonlight

Wood fires

Walks

Talks

Reading aloud

Poetry

Philosophy

Fun

Good doctors learn more from their patients than from textbooks or medical journals

Mary Gunn, looking very well and wearing her 65 years lightly, stands in front of the audience in an Edinburgh bookshop describing how eight years ago she was diagnosed with recurrent breast cancer and given two years to live. She is launching her book Well: A Doctor’s Journey Through Fear to Freedom.

The book tells the story of Mary’s illness and also something of her life, but the main point of the book is to share what she learnt in learning to live with her illness, her fear, and her possibly imminent death. It’s not a self-help book in the typical mould, but it will surely be helpful to anybody with a serious illness or, indeed, anybody affected by chronic fear. Mary roamed widely, way beyond conventional healthcare, in her search for acceptance. I was greatly impressed too by how much Mary, who as a young doctor worked in rural Malawi and then later as a general practitioner in the Scottish Borders, learnt from her patients. She learnt more from them than from her textbooks or medical journals, which is probably true of all good doctors.

Three foreigners provide key moments in Mary’s book. The first is an unnamed Malawian woman with HIV/AIDS who said to her doctor: “When you get AIDS there are two illnesses. The first illness is the problems and pains you suffer with HIV. You have to deal with that. The second illness is the fear of what HIV will do to you in the future. It is very important not to catch the second illness.”

The story of Mary’s first illness can be told briefly, although it seems remarkable to someone like me who was a junior doctor in the 70s that somebody could be not only alive but also so well eight years after a diagnosis of recurrent breast cancer. (Mary, I should make clear, was the first medical student I met on my first day at Edinburgh Medical School in 1970, and we are friends today.)

Mary first had breast cancer diagnosed in 1997 when she was 44, and she knew from the moment she felt a hard lump in her breast that it was “cancer until proved otherwise.” It proved to be grade three cancer and if, like Mary when told the news, you can’t remember how many grades there are—there are three. She had hoped there were 10. She had a mastectomy, which showed that two of five lymph nodes in her left axilla contained cancer cells. The cancer was also very close to her chest wall. Postoperatively, Mary had radiotherapy, but at that time there was not strong evidence of further benefit from chemotherapy. Mary initially decided against chemotherapy, wanting to get back to work as soon as possible, but then looked at the slim evidence available and decided to have chemo as well.

Telling her young children was the most difficult part of her illness, and she wrote them a moving letter, which she reproduces in part in the book, in case she should die. She found it years later in her underwear drawer.

She remained well until January 2010 when she noticed a small swelling on her left chest. Rapid investigations showed a recurrent cancer the size of a grapefruit immediately behind her sternum. The options for treatment were surgery, radiotherapy, or hormonal treatment. The surgery with the cancer so close to vital organs would be “heroic but non-curative” and would mean replacing her sternum with a titanium plate. Radiotherapy was also unattractive because a large dose would be needed and would leave Mary exhausted. She opted for anti-oestrogen treatment, but she also contacted by Skype a famous homeopathic doctor in Mumbai whom she knew and respected.

Rajan Sankaran is the second foreigner who is central to Mary’s book. He gave her an appointment within three days and spent two hours covering “how I was feeling, what the scan had shown, past illnesses, my childhood, my likes, my dislikes, my hopes, my fears, the things that most concerned me and what I was sensitive to. Nothing about me as a person was left out.” He also prescribed homeopathic remedies. Mary started her medical career with the usual scepticism of doctors towards homeopathy, but her experiences with patients treated with homeopathy changed her view. The chapter in which she discusses the usefulness of homeopathy is entirely rational.

Most of Mary’s book is about dealing with “the second illness,” the fear that can overwhelm and paralyse. “Fight or flight” are the usual responses. The flight may be internal rather than external using “Netflix, retail therapy, sunny holidays, drugs, alcohol.” “I’ve tried them all,” writes Mary. The alternative is to “go to war with something or someone.” Neither is effective, and Mary advocates “a third option, one that is counterintuitive: to drop the avoidance and simply turn in and face our own inner fear.”

Mary was helped to do this by the third foreigner in her story, Lama Yeshe, abbot of Samye Ling Buddhist monastery in Eskdalemuir in the Borders of Scotland. Mary went to see him when she was first diagnosed with cancer. He reacted differently from everybody else, being unmoved, and emphasising the normality of being ill. “I think that when you are ill, you in the West suffer more than we do. In Tibet, as soon as we are born we know that suffering, illness, and death are part of life. To some they come early . . . to some late.”

Lama Yeshe was most helpful to Mary when her cancer returned. She went to see him in a state of terror, thinking that she was likely to die soon. “Lama Yeshe, I feel as if I have a hand grenade inside my chest . . . it’s terrifying.” To her surprise he responded by describing the major problems he too had in his own ageing body and then “Gesturing to our two, definitely no-longer perfect, bodies, he burst out laughing—his shoulders shook with it—and said, ‘Very bad time now to identify with body: body falling apart.’”

It’s impossible to imagine a doctor responding in this way (he or she might be struck off for such a response), but it was a liberating moment and a turning point for Mary. She understood that she had been identifying too much with her body, failing to recognise that she is much more than her body.

Part two of Mary’s book discusses the many “openings, teachings, and practices” that can help transform fear, teachings she practises herself. The final part of the book invites anybody severely affected by fear of whatever cause to experiment with the options. There is no one route, and Mary does not offer a prescription.

Looking at Mary at her book launch, I wondered how much her orthodox treatment, her homeopathy, her learning from Lama Yeshe and others, her experimentation, her family, chance, and her own internal resources allowed her to look and be so well eight years after being diagnosed with recurrent breast cancer. Learning to overcome “the second illness” has surely been central.

 

Antony Trollope on why it’s important to take to the streets and protest

In Trollope’ novel “Phineas Finn,” the hero, Finn, is trying to persuade Mr Bunce, a clerk, against joining a march insisting on the introduction of a secret ballot for voting. Trollope puts into the mouth of Bunce a few words that provide an unanswerable argument as why it’s important to take to the streets and protest when you feel strongly. It’s why I will join the next March against Brexit.

“Look here, Mr. Finn; I don’t believe the sea will become any fuller because the Piddle runs into it out of the Dorsetshire fields; but I do believe that the waters from all the countries is what makes the ocean. I shall help; and it’s my duty to help.”

If every man with a wife and family was to show hisself in the streets to-night, we should have the ballot before Parliament breaks up, and if none of ’em don’t do it, we shall never have the ballot. Ain’t that so?”

 

 

Transformation in the world of 4-year-olds

“I drink this and become an aeroplane.”

Alexander, who is now four, does and flies, well runs, round a tree some 20 metres away.

“Now you drink and become a frog.”

I do, and it works.

Alexander, Chicken, and I are sat at a table outside the Bandstand Café on Clapham Common drinking and waiting for our pasta. The Calabrians who run the café produce the best pasta I’ve tasted in London.

“I drink it, and I will become a monkey,” I boast. Again it works.

“Now I become Alexander.” I do, and then he drinks and becomes me. I become Chicken, and she becomes me.

The pasta arrives.

Later I reflect that transformation is an everyday event in the life of four year olds. He regularly transforms into Batman and other super heroes. We watch Paw Patrol, “No job too big, no pup too small,” where puppies transform into heroes who fly around the world solving problems. We also watched yesterday, me for the first time, Super Why, where fairy tale characters transform into creatures able to visit books of fairy stories to solve problems. (I wonder why the stories themselves, which are of course full of transformation, are not enough in themselves.)

Then this morning when we were making porridge and Alexander was stirring it he complained that it was watery, not like porridge. “It will become porridge,” I promised, and I was right. He loved the bubbling when it boiled and thickened.

And when we went to his room to get him dressed he was much taken by how the nightlight disappeared when I opened the shutters and then reappeared when I shut them again. He insisted on them being kept shut.

He is transforming, and very rapidly: from baby to toddler, from toddler to schoolboy, from gurgling to speaking, from illiteracy to literacy.

And I reflect on Ovid’s Metamorphoses, which I love in the translation by Ted Hughes and which have continued to inspire writers, painters, and artists for two millennia. The Ancient Greek Gods were constantly transforming, and we have all transformed from being nowhere to being born–and will all transform again when we die.

 

Is Peter Gøtzsche the boy who sees that the emperor has no clothes and says so?

Peter  Gøtzsche has just been expelled from the Cochrane Collaboration, which has caused some to fear that the Collaboration may be a sinking ship. https://blogs.bmj.com/bmjebmspotlight/2018/09/16/cochrane-a-sinking-ship/  I’ve known Peter for many years, and despite his capacity for speaking out in extravagant terms he’s a gentle lovable man. The furore prompted me to find the introduction I wrote to his book that calls the pharmaceutical industry organised crime. The thrust of my piece was to urge people not to be put off by the comparison but to concentrate on what Peter had to say. Some how the piece seems relevant to the current row.

Is the pharmaceutical industry like the mafia?

The piece that follows is my foreword to a new and fascinating book by Peter  Gøtzsche, the head of the Nordic Cochrane Centre, entitled  Deadly Medicines and Organised Crime: How Big Pharma Has Corrupted Healthcare. I hope that this piece might prompt you to read the book. I was not paid for my foreword and will not receive any payment from the book.

There must be plenty of people who shudder when they hear that Peter  Gøtzsche will be speaking at a meeting or see his name  on the contents list of a journal. He is like the young boy who not only could see that the emperor had no clothes but also said so. Most of us either cannot see that the emperor is naked or will not announce it when we see his nakedness, which is why we badly need people like Peter. He is not a compromiser or a dissembler, and he has a taste for strong, blunt language and colourful metaphors.  Some, perhaps many, people might be put off reading this book by Peter’s insistence on comparing the pharmaceutical industry to the mob, but those who turn away from the book will miss an important opportunity to understand something important about the world—and to be shocked.

An emotional debate at the Danish Society for Rheumatology

Peter ends his book with a story of how the Danish Society for Rheumatology asked him to speak to the theme Collaboration with the drug industry. Is it THAT harmful?  The original title was Collaboration with the drug industry. Is it harmful? but the society thought that too strong. Peter started his talk by enumerating the “crimes” of the meeting’s sponsors. Roche had grown by selling heroin illegally. Abbot blocked the access of drug regulators to unpublished trials that eventually showed that a slimming pill was dangerous.  UCB too concealed trial data, while Pfizer had lied to the Food and Drug Administration and been fined $2.3 billion in the United States for promoting off label use of four drugs. Merck, the last sponsor, had, said Peter, caused the deaths of thousands of patients with its deceptive behaviour around a drug for arthritis. After this beginning to his talk he launched into his condemnation of the industry.

You can imagine being at the meeting, with the sponsors spluttering with rage and the organisers acutely embarrassed. Peter quotes a colleague as saying that he felt “my direct approach might have pushed some people away who were undetermined.” But most of the audience were engaged and saw legitimacy in Peter’s points. In the following year all but one of the companies declined to sponsor the meeting.

 

Right about mammography

The many people who have enthusiastically supported routine mammography to prevent breast cancer might empathise with the sponsors—because Peter has been critical of them and published a book on his experiences around mammography. The important point for me is that Peter was one of few people criticising routine mammography when he began his investigations but—despite intense attacks on him—has been proved largely right.

He did not have any particular view on mammography when he was asked by the Danish authorities to look at the evidence, but he quickly concluded that much of the evidence was of poor quality. His general conclusion was that routine mammography might save some lives, although far fewer than enthusiasts said was the case, but at the cost of many false positives, women undergoing invasive and anxiety-creating procedures for no benefit. The subsequent arguments around routine mammography have been bitter and hostile, but Peter’s view might now be called the orthodox view. His book on the subject shows in a detailed way how scientists have distorted evidence in order to support their beliefs.

I have long recognised that science is carried out by human beings not objective robots and will therefore be prone to the many human failings, but I was shocked by the stories in Peter’s book on mammography. Much of this book is also shocking and in a similar way: it shows how science can be corrupted in order to advance particular arguments and how money, profits, jobs, and reputations  are the most potent corrupters.

 

Some benefits from drugs, but this book is not about benefits

Peter does acknowledge that some drugs have brought great benefits. He does so in one sentence: “My book is not about the well-known benefits of drugs such as our great successes with treating infections, heart diseases, some cancers, and hormone deficiencies like type 1 diabetes.” Some readers may think this insufficient, but Peter is very clear that this is a book about the failures of the whole system of discovering, producing, marketing, and regulating drugs. It is not a book about their benefits.

Many of those who read this book will ask if Peter has over-reached himself in suggesting that the activities of the drug industry amount to organised crime. The characteristics of organised crime, racketeering, is defined in US law as the act of engaging repeatedly in certain type of offence, including extortion, fraud, federal drug offenses, bribery, embezzlement, obstruction of justice, obstruction of law enforcement, tampering with witnesses, and political corruption. Peter produces evidence, most of it detailed, to support his case that pharmaceutical companies are guilty of most of these offences.

And he is not the first to compare the industry with the Mafia or mob. He quotes a former vice-president of Pfizer, who has said:

“It is scary how many similarities there are between this industry and the mob. The mob makes obscene amounts of money, as does this industry. The side effects of organized crime are killings and deaths, and the side effects are the same in this industry. The mob bribes politicians and others, and so does the drug industry …”

 

Falling foul of the US Department oj Justice

The industry has certainly fallen foul of the US Department of Justice many times in cases where companies have been fined billions. Peter describes the top 10 cases in detail, but there are many more. It’s also true that they have offended repeatedly, calculating perhaps that there are large profits to be made by flouting the law and paying the fines. The fines can be thought of as “the cost of doing business” like having to pay for heat, light, and rent.

Many people are killed by the industry, many more than are killed by the mob. Indeed, hundreds of thousands are killed every year by prescription drugs. Many will see this as almost inevitable because the drugs are being used to treat diseases that themselves kill. But a counter-argument is that the benefits of drugs are exaggerated, often because of serious distortions of the evidence behind the drugs, a “crime” that can be attributed confidently to the industry.

The great doctor William Osler famously said that it would be good for humankind and bad for the fishes if all the drugs were thrown into the sea. He was speaking before the therapeutic revolution in the middle of the 20^th century that led to penicillin, other antibiotics, and many other effective drugs, but Peter comes close to agreeing with him and does speculate that we would be better off without most psychoactive drugs, where the benefits small, the harms considerable, and the level of prescribing massive.

 

Systematic corruption

Most of Peter’s book is devoted to building up the case that the drug industry has systematically corrupted science to play up the benefits and play down the harms of their drugs. As an epidemiologist with very high numerical literacy and a passion for detail, so that he is a world leader in critiquing clinical studies, Peter is here on very solid ground. He joins many others, including former editors of the New England Journal of Medicine, in showing this corruption. He shows too how the industry has bought doctors, academics, journals, professional and patient organisations, university departments, journalists, regulators, and politicians. These are the methods of the mob.

The book doesn’t let doctors and academics avoid blame. Indeed, it might be argued that drug companies are doing what is expected of them in maximising financial returns for shareholders, but doctors and academics are supposed to have a higher calling. Laws that are requiring companies to declare payments to doctors are showing that very high proportions of doctors are beholden to the drug industry and that many are being paid six figures sums for advising companies or giving talks on their behalf. It’s hard to escape the conclusion that these “key opinion leaders” are being bought. They are the “hired guns” of the industry.

And, as with the mob, woe be to anybody who whistleblows or gives evidence against the industry. Peter tells several stories of whistleblowers being hounded, and John Le Carré’s novel describing drug company ruthlessness became a bestseller and a successful Hollywood film

So it’s not entirely fanciful to compare the drug industry to the mob, and the public, despite its enthusiasm for taking drugs, is sceptical about the drug industry. In a poll in Denmark the public ranked the drug industry second bottom of those in which they had confidence, and a US poll ranked the industry bottom with tobacco and oil companies. The doctor and author, Ben Goldacre, in his book Bad Pharma raises the interesting thought that doctors have come to see as “normal” a relationship with the drug industry that the public will see as wholly unacceptable when they fully understand it. In Britain doctors might follow journalists, members of Parliament, and bankers into disgrace for failing to see how corrupt their ways have become. At the moment the public tends to trust doctors and distrust drug companies, but the trust could be rapidly loss.

 

Some solutions

Peter’s book  is not all about problems. He proposes solutions, some of which are more likely than others to happen. It seems most unlikely that drug companies will be nationalised, but it is likely that all the data used to license drugs will be made available. The independence of regulators should be enhanced. Some countries might be tempted to encourage more evaluation of drugs by public sector organisations, and enthusiasm is spreading for exposing the financial links between drug companies and doctors, professional and patient bodies, and journals. Certainly the management of conflicts of interest needs to be improved. Marketing may be further constrained, and resistance to direct to consumer advertising is stiffening.

Critics of the drug industry have been increasing in number, respectability, and vehemence, and Peter has surpassed them all in comparing the industry with organised crime. I hope that nobody will be put off reading this book by the boldness of his comparison, and perhaps the bluntness of the message will lead to valuable reform.

 

 

I discover that I’m a marmalade bigot, fundamentalist, and snob and repent

Reading The Land Where the Lemon Grows, a book that is a history of citrus fruits in Italy that powerfully evokes that beautiful country, I read: “Marmalade attracts bigots.” Oh dear, I think. I am a marmalade bigot. I read on in the chapter about marmalade and discover that I’m also a marmalade fundamentalist and snob.

Below are passages in which Helena Attlee, the author, makes and supports her accusations, which are followed by an account of how I repented and perhaps redeemed myself.

“Marmalade attracts bigots. They believe in one true product made from the sour oranges the British call Sevilles, and coming most probably from a steamy Scottish kitchen in Dundee. But marmalade doesn’t have to be made from oranges. The word derives from marmelo, the Portuguese for ‘quince’, and when it first appeared in fifteenth-century Britain it was a thick paste rather like Spanish membrillo, made from quinces flavoured with rose water, ambergris or musk and eaten at the end of a meal to aid digestion. The first marmalades came to England from Portugal, and later marmalade was also imported from Spain, North Africa and Italy. It was packed in circular wooden boxes and often imprinted with a design taken from the mould. Indeed, most European countries use ‘marmalade’, or marmellata in Italian, as a generic word for jams of all kinds, adding the name of the fruit to distinguish it from jams of other kinds. In Italy, jam made from oranges is marmellata di arancia. It is only in Britain that orange marmalade has a special status.

In Britain we think we have the monopoly on proper marmalade. I’d like to teach our marmalade fundamentalists a lesson by taking them to San Giuliano, an organic citrus estate on the eastern side of Sicily, outside Villasmundo and south of Catania, where they have been making excellent marmalade for years.

‘Grapefruit?’ they might think. ‘I hope they aren’t silly enough to make marmalade from anything but Seville oranges. Heresy!’ And yet that’s exactly what they do at San Giuliano.”

British marmalade snobs might refuse to be impressed by the news that San Giuliano marmalade is exported to America, but when they hear that it is now for sale in London’s Sloane Square, perhaps even they might decide to try a jar.”

And I did. Living less than three miles from Sloane Square, I cycled to Ortigia and bought two pots of the San Giuliano marmalade, one made from mandarins and one from bitter oranges. Even though the mandarin marmalade is sweeter than a marmalade fundamentalist expects, both pots are magnificent, far better than any other shop-bought marmalade I’ve encountered. So they should be at £8.50 a pot, but I will try the others makes: lemon, grapefruit, and clementine. And I’m inspired to return to Sicily, perhaps in the Spring, and to read The Leopard for the third time and perhaps Midnight in Sicily for the second time.