Earlier this year, a 33-year-old obstetrician in New York was fed up with one of her patients. She vented to her 470 friends on her Facebook page: "So I have a patient who has chosen to either no-show or be late (sometimes hours) for all of her prenatal visits, ultrasounds and NSTs. She is now 3 hours late for her induction. May I show up late to her delivery?"
She copped it sweet. There were calls for her to be fired, even though she did not reveal the patient’s name.
This is just one anecdote about a growing problem for medicos who can’t live without Facebook.
Should doctors discuss patients on Facebook and Twitter? Or should they spy on them to make decisions about their treatment? In our lead story today, bioethicist Art Caplan recalls another incident in which doctors decided to pass over a candidate for a liver transplant after they trawled through his Twitter feed and found a photo of him downing a can of beer. This raises some ethical dilemmas, doesn’t it?
Just so that we aren’t left out of ethical dilemmas, BioEdge is trying to ramp up our Facebook page. We have spruced it up a bit and over the past week we have nearly doubled the page likes. Why don’t you pay a visit and “like” us? Help us to reach 5,000 ASAP!
I wrote a story below in which I originally mentioned the vomitorium, a well-known feature of Roman imperial banquets, er, well-known to me, because I have discovered that it never existed. There was gluttony, of course, gobs of it, and it is described in emetic detail by some of the classical authors. But there were no vomitoria where satiated guests could disgorge their flamingoes’ tongues and return for a serving of peacock brains (a menu mentioned in the Life of Vitellius, by Suetonius).
However, what the Romans failed to have invented, the Americans have developed – a portable stomach pump attached to a stomach peg so that morbidly obese people can eat but still lose weight. If you respond to this device, called AspireAssist, by saying Yuk, your feelings are shared by some obesity experts. "People often wish they could just eat and make the calories go away," one commented. "It was only a matter of time before someone came up with this.”
What are the bioethics of such a device – and a whole range of remedies which are being developed to treat obesity? It is a complex area, but in many cases, technology is being substituted for human agency. It’s easier to have a stomach pump than to strength one’s will-power to change eating habits. Obesity has been described as one of the most serious public health challenges of the 21st century. My hunch is that it will be a growing area of bioethical debate.
The Google of genetics, a California company called 23andme (after our 23 chromosomes) has denied that it is in the business of providing toolkits for creating designer babies. (See story below.) Instead, it just wants to provide consumers with better ways to manage their health and their children’s health.
Could be. But it’s more likely that it is simply unsure of what the market wants. The company has been re-inventing itself over the past year. It slashed the price of its spit kit, hired a CEO whose expertise is selling luxury goods online and launched a slick TV advertisement. And it is moving heaven and earth to get 1 million people on its database. “With a million people, we become disruptive," says co-founder Anne Wojcicki.
Designing babies may not be a major product, but it will surely be one of them, along with ancestry research and detection of genetic diseases. 23andme is lean, mean and hungry – it will supply whatever the market wants. And if the market wants designer babies, why not?
We are accustomed to think of eugenics as a dark government-run totalitarian program to eliminate people who are regarded as unfit, disabled and racially inferior. But those days are over. Twenty-first Century eugenics will be a pastel-coloured, smiley, do-it-yourself, consumer-driven project. And if it ever happens, I think that it will look a lot like 23andme.
Because autonomy is the central issue of contemporary bioethics, I suppose that it is only natural that euthanasia is a constant theme in BioEdge. Unfortunately there are some weeks – like this one – when it seems to dominate!
I wonder what “lifers” must think about debates over euthanasia. Where assisted suicide and euthanasia are legal, they normally don’t qualify as they are not terminally ill. However, in Belgium, where psychological suffering is a qualification for euthanasia, a prisoner was euthanased last year and five subsequently requested the Minister of Justice for permission to be put down. So there is definitely a market.
As you can read below, a British bioethicist has floated a trial balloon about prisoner euthanasia on Oxford’s blog for utilitarian bioethics. Not only would it reduce the amount of suffering in the world, he argues, but it would also help the government’s bottom line.
This is a cause which Australian euthanasia activist Philip Nitschke has backed for years. He writes in his recent autobiography, Damned If I Do, “if the state is going to engage in this form of torture, it should at least be prepared to offer those incarcerated a peaceful death. Anything less is barbaric.”
Stephen Hawking is in the news this week (see article below). A documentary has just been released on the life of the 71-year-old cosmologist timed to coincide with the release of his autobiography, My Brief History. And the BBC has done a probing interview with him. In it a journalist sought his opinion on assisted suicide. He endorsed it, saying, "We don't let animals suffer, so why humans?"
Before I take issue with Professor Hawking, I must say how much I admire him. The promo for the documentary is intensely moving. When you see this silent, wheelchair-bound figure being ushered through applauding crowds, the flashes on their cameras lighting up the room like flares, you see how much people treasure his bravery, his humour, and his indomitable sense of adventure. In 2007 a space entrepreneur took him on a parabolic flight in a Boeing 727 so that he could experience Zero-G. His smile as he floated in mid-air was as innocent and beautiful as a child’s.
It might seem grotesque, but he has also appeared as a character on The Simpsons and in a hilarious instalment of Epic Rap Battles of History with Albert Einstein. Instead of silencing him, his disability has made him one of the iconic figures of our age.
But back to his views on bioethics. Hawking is happy to endorse assisted suicide for others. Why not himself? Who knows, really? Beneath his public persona he is a complex and private person, and, like most of us, no saint. But he has a rich network of family, friends and colleagues for whom his life is a precious treasure. These are often missing in the lives of people who do ask for assisted suicide. Instead of legislating to allow people to end their miserable lives, what Hawking’s example suggests is that we should seek to end their misery. More family, more friendship, more care, more admiration: that is what they need, not a needle.
If you search in Google News for “eugenics”, the principal story comes from North Carolina. Its legislature recently voted to distribute US$10 million to victims of its former eugenics law. Of the 7,600 people who were involuntarily sterilized in North Carolina, only about 200 are still alive. But compensation is a gesture worth making.
As a state task force said, “The compensation package we recommend sends a clear message that we in North Carolina are a people who pay for our mistakes and that we do not tolerate bureaucracies that trample on basic human rights.” It was a resounding repudiation of one of the vilest aspects of the 20th century.
So it’s a bit odd to read that British academics are promoting eugenics all over again. In a discussion paper sponsored by the Wellcome Trust, the world’s second-largest private funder of medical research, they argue (see article below) that there is nothing wrong with improving the human gene pool, as long as it is done voluntarily and ethically. They don’t support any the nasty stuff which went on in North Carolina and Nazi Germany – only do-it-yourself eugenics with IVF and embryo selection.
The authors spend much of their energy in deconstructing the word “eugenics”. It is such an emotionally-charged term that it is almost impossible to use it in public debate. But even if you overlook its link to the Nazis and state bureaucracies, do-it-yourself eugenics is morally corrupt. First of all, it necessarily involves discarding large numbers of human embryos. Second, it involves one person treating another person as a thing to be manipulated and reshaped according to his own ideas.
Anyhow, this is a large and complex issue which requires a good deal of thought. DIY eugenics is certainly going to become more common as the technology for selecting genes (and sex) become cheaper. We should be prepared.
Belgian surgeons have quietly announced that they have a new source for lung transplants – euthanased patients. Of course Belgium is a small country, but between 2007 and 2012, one in eight lung transplants came from patients who had donated them after voluntary euthanasia.
From a pragmatic point of view, it makes good sense. It must be easier to plan out the operation and the lungs will be healthy. Of the six patients who were killed by their doctors, 3 suffered from severe neuromuscular disease (presumably ALS or motor neurone disease) and 3 from a “neuropsychiatric disorder”, presumably depression or schizophrenia.
However, pragmatic considerations are not necessarily the only ones to be considered when lives are at stake. Is it really ethical to kill a patient for his organs? However rosy a picture the doctors paint of this procedure, this is what it amounts to. Another article below points out that it is possible to implant false memories in people’s minds. Surely it is possible to implant a desire to make an altruistic donation in a sick patient.
This is a significant development. It shows that if euthanasia is legalised, there will – almost inevitably – be abuses, sanctioned, of course, by ethics committees and the government. The human body is a valuable commodity; doctors are bound to think that it would be a crime to let it go to waste.
American psychologists have discovered that just thinking about science helps people to act more ethically. Researchers at the University of California Santa Barbara have described the results of their social priming experiments in PLoS as the first study “to systematically and empirically test the relationship between science and morality”. (See BioEdge article below.) They conclude that “Thinking about science leads individuals to endorse more stringent moral norms and exhibit more morally normative behavior.” Better, in fact, than science’s main competitor, religion.
This is an issue of great interest, of course, in bioethics. How can we be sure that doctors will not defraud the government, abuse patients, traffic in babies (see below), or euthanase patients without their consent? Perhaps medical associations should buy all their members copies of the Feynman Lectures on Physics or some other classic of the scientific method.
But before going to all that expense, why don’t we apply a bit of common sense to this research? The researchers don’t seem to have a finely developed sense of irony. Wasn’t it only recently that one of the world’s experts in social priming – who did many experiments similar to this one -- Dutch psychologist Diederik Stapel, was exposed as a massive fraud who had simply made up a substantial portion of his research results? “I see a train wreck looming,” wrote Nobel laureate Daniel Kahneman in an open email to psychologists who work in social priming: “your field is now the poster child for doubts about the integrity of psychological research”.
Exposure to the scientific method didn’t make Mr (he was stripped of his doctorate) Stapel more ethical. Curiously, Mr Stapel is not mentioned in the PLoS article. Perhaps something more than scientific method is required to nudge people into acting morally.
Australia goes to the polls in two weeks time. Election night is always one of the highlights of the year for me, but this time I’ll be following closely the fortunes of a new party which is fielding candidates in New South Wales, South Australia, the Northern Territory and the nation’s capital. This is the Voluntary Euthanasia Party, headed by activist Dr Philip Nitschke.
The VEP is clearly a single issue party and has no chance of winning, but Dr Nitschke’s vision extends beyond medical ethics to economics and finance. Writing in the Canberra Times recently, he argued that voluntary euthanasia would be useful little good cost-cutter at a time when governments everywhere are tightening their belts.
This is a policy which he has been advocating since 2005. “While no one in the Voluntary Euthanasia Party is an economist, and no one is saying we should put people down against their will,” he writes, “we are suggesting it is a worthwhile debate to have - especially if hundreds of thousands, if not millions, of dollars in the health budget could be saved or redirected.”
I cannot honestly say that I am one of Dr Nitschke’s fans. But I do admire his candour. You always know what he thinks. I wonder how many others support dying with dignity for the reason he has so forthrightly proposed.
In a time of increasingly stretched finances, how much should attention should a doctor pay to his patients’ financial resources? Health care is the leading cause of bankruptcies in the US, more than credit-card bills or unpaid mortgages. So a “viewpoint” in the latest JAMA argues that doctors should make an investigation of “financial harm” a standard feature of consults. For example, they might tell a patient:
“Even though your insurance will cover it, I don’t think that back imaging will help us. Most back pain like yours gets better on its own within 4 to 6 weeks. The risks of radiation and the high cost outweigh any possible benefits. What were you hoping to find out with a scan?”
I am just a layman but that sounds reasonable. Patients ought to be aware of the financial consequences of their decisions, if only to avoid nasty surprises.
However, I was taken aback by the authors’ analogy with medical harm. Doctors should not resign themselves to the financial ruin that their patients may face as a result of expensive care, they contend. “Providing true patient-centered care should not replace physical ailments with distressing fiscal harms.”
But if the adage, “First, do no harm”, is redefined to include financial harm, doesn’t that mark a major change in the patient-doctor relationship? Advising patients of the psychological or social harms of some procedures is often deemed to be patronising or patriarchal. Medicalising “financial harm” seems to be a very dangerous way of framing high medical bills. What do you think?