There is a dimension of bioethics that I have completely overlooked, I’m sorry to report. It’s medical humour. One of the articles below reports that 72% of palliative care physicians had been called “Dr Death” or something similar in the past year by colleagues, patients or family – partly, it seems, as a result of their own gallows humour.
Intrigued, I did a bit of digging and found that several articles have been published in recent years on hospital humour. This can be quite coarse, even savage, as you might expect from people with a strong esprit de corps who work under intense pressure doing yucky things. The ethical side is the balancing act between respect for your patients and maintaining your sanity.
For better or worse the cynical wisecracking is disappearing, it seems. Sensitivity to vilification and denigration has become greatly heightened in recent years. This is indisputably a good thing, but as the literature on the subject points out, medicos do need to let off steam. Humour is one way of coping with stress instead of internalising it.
The racier bits stem from a 2003 article in the journal Ethics and Behaviour about slang in British hospitals. It was widely reported at the time. The author told the BBC that one doctor had scribbled “TTFO”, a common acronym for "Told To” um, “Go Away, Please" - on a patient's notes. These notes ended up in court, to the doctor’s dismay. Fortunately he had the presence of mind to interpret them as “To Take Fluids Orally".
Other slang included “Walletectomy”, a public hospital term for an expensive procedure in private practice. “UBI” meant “unexplained beer injury”. “Blamestorming”, the practice of blaming other staff for errors, especially if they are not there, might be useful in other professions. “Ash cash” was money paid for signing cremation forms.
Moving into denigration mode, we have “Adult Onset Anencephaly”, a medical term for “the lights are on but nobody’s home”. Similarly, “Pumpkin Positive” meant that when you shine a penlight into the patient’s mouth, his brain is so small that his whole head lights up.
In an even more cynical mode, there is “AMF YoYo”, or “Adios My Friend, You’re On Your Own”. And if the desperate patient grasps at the straw of alternative medicine, there is the term “TEETH” or “Tried Everything Else, Try Homeopathy”.
This selection is British. Any anecdotes from the US or elsewhere?
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The London Paralympic Games have brought to light their own bioethics conundrum. Some able-bodied athletes take painkillers to boost their performance; some disabled athletes inflict pain to boost theirs.
In a shady practice called boosting, quadriplegic and paraplegic sportsmen do things as bizarre as sitting on sharp objects, sticking pins in testicles, filling their bladders to the bursting point or even breaking toes with a hammer. Apparently this raises their blood pressure and gives them a competitive edge. It is terribly dangerous but very hard to detect.
Self-harm puts a new twist on the debate over drug use in sports. Supporters of unrestricted drug use argue that this would level the playing field; if everyone is using them, no one is unfairly disadvantaged. As for the dangers, they say that sportsmen and women understand the risks and have medical supervision.
But does it make sense to talk about unfair disadvantage in a sport for disadvantaged people? Is it ethical to inflict pain and endure mutilation even if you cannot feel it? Doesn’t the very existence of the practice show that some athletes, at least, have more competitive spirit than common sense? Are they really capable of giving informed consent to “boosting”? Lots of questions. I don’t pretend to have all the answers. Comments, anyone?
Even in bioethics news, there seems to be an ebb and flow of major stories. As the northern summer draws to a close, there is an ebb tide. There are several stories below, but my main message in this newsletter is to ask you to participate in our reader survey.
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There can be no more difficult case for dispassionate discussion than the fate of Tony Nicklinson, the totally paralysed British man who wants to end his life. This week the UK High Court denied his request for euthanasia. He is completely dependent and describes his life in the bleakest words imaginable: “dull, miserable, demeaning, undignified and intolerable. …it is misery created by the accumulation of lots of things which are minor in themselves but, taken together, ruin what’s left of my life.”
Each of the three justices took pains to express their sympathy for his plight (and the similar case of a man named Martin) as they reluctantly agreed that that they had to affirm the existing law on murder. Hard cases make bad law.
But is death really the only solution to the dependence and limited possibilities of Mr Nicklinson’s existence? Perhaps it takes an extraordinary person, but it is possible to feel a lust for life even with locked-in syndrome. (Here are some links to articles about locked-in syndrome in BioEdge.)
A couple of years ago, a French woman with locked-in syndrome, Maryannick Pavageau, was awarded the Légion d'honneur precisely for leading the charge against euthanasia:
“In response to our deep discouragement – and who is free from that? – we are only offered this final right, hypocritically baptised as a sign of love. A recent study on the quality of life of locked-in syndrome patients found, to the astonishment of the medical profession, that when asked ‘if you had a heart attack, would you want to be resuscitated?’, the great majority of us answered: Yes.”
And last year, the largest-ever survey of chronic LIS patients found that only 28% were unhappy. Very few of them were interested in euthanasia – only 7% -- or had suicidal thoughts. Mme Pavageau, who is clearly an extraordinary woman, flatly denied that her life was miserable:
"All life is worth living. It can be beautiful, regardless of the state we are in. And change is always possible. That is the message of hope that I wish to convey. I am firmly against euthanasia because it is not physical suffering that guides the desire to die but a moment of discouragement, feeling like a burden... All those who ask to die are mostly looking for love."
Perhaps the money used to promote Mr Nicklinson’s case and to pay for his legal fees should have been spent on cheering him up and getting him some fresh air. It is possible. As a New Zealand rugby player with locked-in syndrome wrote in the BMJ a few years ago: "It is definitely a crazy, mixed-up world. I'm just glad to still be alive -- most of the time anyway. I accepted the fact that the accident happened, long ago. Shit definitely happens; I just have to make the most of each day in my journey towards recovery."
Bioethicist Alice Dreger and colleagues have uncovered extensive off-label use of Dexamethasone, a synthetic steroid, to intentionally engineer the development of fetuses for sex normalization purposes. Her allegations have been widely (for a bioethics story, that is) reported in the media. There is a sensational angle to her study: some doctors may be using the drug to allay parents' fears that their daughters will become lesbians.
However, Dreger's ultimate point seems to be that the use of this powerful drug is "a canary in the modern medical mine": "this case appears to be representative of problems endemic in modern medicine, problems that threaten the health, lives, and rights of patients who continue to become unwitting subjects of (problematic) medical experimentation".
One indication that her misgivings may be all too true is other allegations (reported in last week's BioEdge) that IVF doctors routinely ignore safety and efficacy concerns when developing new techniques for overcoming infertility. “Some of the techniques offered to some patients offer little or no benefit, and in the worse cases [are] not confirmed to be safe," wrote two British scientists in an IVF journal.
But while the troubling use of drugs for sex normalisation appears to involve only a few thousand children, 5 million IVF babies have been born since 1978. A major IVF technique, ICSI, has never been tested in trials. Enthusiasm for it is growing, even though it has been associated with an increase in the incidence of birth defects.
What explains this indifference to normal standards of medical research? Here's my theory: modern medicine has become a consumer transaction in which success is measured not by health, but by customer satisfaction. When this happens, an unborn child is in danger of becoming a commodity whose rights and interests have little weight. A comment by a leading American paediatrician (cited in Dreger's article) sums it up: “It seems to me that the main point of prenatal therapy is to allay parental anxiety. In that construct, one must question the ethics of using the fetus as a reagent to treat the parent, especially when the risks are non-trivial”.
I feel twinges of conscience when writing about bioethical skulduggery. How well do I stack up? There is such a thing as journalistic ethics -- believe it or not. It can be hard to walk the line between rewriting and plagiarism or between an informed precis and biased misrepresentation. Although I hope we at BioEdge behave honourably, such misgivings make me reluctant to cast stones.
However, this week’s scandal in journalism does invite comment and speculation. Jonah Lehrer, once a Rhodes Scholar and now a 31-year-old writer, has had a stellar career as the author of three best-sellers, all related to neuroscience: Proust Was a Neuroscientist (2007), How We Decide (2009), and Imagine: How Creativity Works (2012). Earlier this year he joined the prestigious magazine The New Yorker as a staff writer.
Unfortunately, especially for a writer with an interest in the neuroscience of creativity, Mr Lehrer appears to have suffered from a creativity deficit as well as self-destructive carelessness. Instances of minor plagiarism at various publications were forgiven as the errors of tyro. But finally a Bob Dylan fan discovered that a number of quotes about the singer in the book Imagine had been fabricated, conflated or could not be sourced.
Compared to the outright lies spouted in politics and finance, you might say that this is no big deal. But there are conventions in journalism and Mr Lehrer broke them. Applause and fame are glittering temptations for young writers. What is interesting about Mr Lehrer’s disgrace is his specialty. The brain fascinates all of us. There seems to be no end of stories in the media about the neuroscience of politics, crime, art, child behaviour, romance, chocolate and so on. A savage critic, the British writer Raymond Tallis, has damned this pop science as “neurotrash”.
That seems a bit harsh, but the Lehrer story does suggest that we the public are very gullible when offered explanation based on brain scans. Why is that? Any suggestions?
The Olympics have begun. Sports are supposed to bring out the best of human character – generosity, self-sacrifice, teamwork, courage and so on -- but most people are more interested in world records. However, ethical controversies are part and parcel of what makes the Olympics so addictive. Here’s what to look out for.
Drug doping. The World Anti-Doping Agency has promised that the London Games will be the most dope-tested in history. Half of all athletes and all the winners will be tested. Expect rumours of drugs which cannot be detected by WADA’s technology.
Sex-testing. The International Olympic Committee has adopted new standards for determining whether someone can be allowed to compete in women’s events. These involve a test to see whether a woman’s natural testosterone levels fall within the normal range of a man. There has been a lot of controversy over this because some women have naturally high testosterone levels.
The standard is controversial. What level exactly? Shouldn’t it be a genetic test? Are there really a clear dividing line between male and female? Should male athletes be able to self-identify as females?
Oscar Pistorius. The South African double amputee – “the fastest man on no legs” -- sprints with the help of carbon fibre lower limbs. Does this enhancement give him an unfair advantage?
I was just about to send out this week's newsletter when news trickled in that a 24-year-old dressed in combat gear had opened fire in a crowded movie theatre in Colorado and killed at least 12 people and wounded about 60 others. It was the midnight premiere of the latest Batman sequel, The Dark Knight.
This is a depressingly familiar story. The killer had no police record, was a well-educated white male and seemed like a harmless loner. He was equipped with protective armour and an arsenal of lethal weapons.
If I were living in the US, I would be an enthusiastic supporter of tougher restrictions on guns, especially on automatic weapons. But gun control is only one answer; it is not the solution. Guns are much harder to obtain here in Australia than in the US, but I have lived in two cities where madmen opened fire and killed people (Strathfield 8; Port Arthur 35).
Over the coming weeks, the media will trawl through the life of James Holmes for clues. They will dissect the dark message of the movie, his family background, his computer games, his inability to get a job in California, a national crisis in masculinity, his political views, his religious views, and even his engagement with neuroscience (he had just dropped out of a PhD program). No doubt each of these will shed a chink of light into the dark pit of his soul.
But in the end, we will never know why. A massacre like this places us before a blank wall, the age-old problem of the existence of evil.
Can contemporary bioethics help us to cope? After all, its bread and butter is life, death and suffering. However, I am sure that its leading lights will fall silent before this tragedy. The Ethikos in bio-ethics -- all the protocols, statistics and problem-solving logic -- has become hypertrophied at the expense of the Bios -- what life is and what it means. Most bioethicists focus on how to avoid suffering rather than on how to find meaning in it. But shouldn't bioethics be able to direct us toward some existential relief? What do you think?
I thought that the shocking American documentary Eggsploitation had the last word on the exploitation of young women for their eggs. It showed that all over the world they are being promised lucrative sums "to make someone's dream come true". Some were racked by regret, some worried about cancer, some had suffered potentially fatal ovarian hyper-stimulation syndrome (OHSS).
But when I heard the words "young woman", I never, ever, thought of a 15-year-old. That's how old a slum girl in Mumbai, Sushma Pandey, was when she first donated eggs for US$450. She did it three times. A year and a half later she was dead, presumably of OHSS. No one knows where the money went.
The clinic which retrieved her eggs boasts that it is a world leader and a specialist in gay surrogacy. It appears to have been targeted by a criminal gang which somehow dragooned young Sushma into donating. But the shocking thing about this case is that although it happened in 2010, the news has only emerged now. How many other 15-year-old girls in India (and other countries) are being ruthlessly exploited in this way? There could be thousands of them. Are some of them 14? 13? No one knows. No one cares. The important thing is to make sure that dreams come true: the dreams of IVF clinics for money and of Westerners for children.
Our lead story this week comes from Argentina. A court there has sentenced former president Jorge Rafael Videla to an additional 50 years in prison for a particularly distressing human rights abuse – removing newborn babies from their mothers and giving them to military couples. This may have happened up to 500 times, although only about 100 of the children have been reunited to their parents.
Baby-snatching is not in the index of most bioethics textbooks. But I think that this story and other like it – irregular adoptions in Spain and the United States, for instance – show the incredible strength of genetic ties. In Argentina, denying children their genetic heritage became a hot political issue. The anguish of not being able to connect with lost parents is an ancient theme in literature, too, from Oedipus to Luke Skywalker.
Practices like anonymous gamete donation and surrogacy have created thousands of children who have lost contact with their natural parents. Will their frustration with those broken genetic links someday turn to anger and political agitation, as in Argentina?
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