You don't need to be signed in to read BMJ Blogs, but you can register here to receive updates about other BMJ products and services via our Group site.

Philosophy

Charlie Gard: An Ethical Analysis of a Legal non-Problem

11 Aug, 17 | by Iain Brassington

(Cross-posted from EJIL: Talk!)

For those with an internet connection and an interest in current affairs, the story of Charlie Gard been hard to avoid recently.  A decent précis is available here; but it’s worth rehearsing.

Shortly after his birth, Charlie’s health began to deteriorate, and he was diagnosed with a terminal and incurable mitochondrial DNA depletion syndrome.  By March 2017, Charlie needed artificial ventilation, and doctors at Great Ormond Street Children’s Hospital (GOSH) applied to the High Court for confirmation that removing that ventilation would be lawful, having judged that it was not in his best interests.  This was contested by his parents, Chris Gard and Connie Yates; the High Court ruled in favour of GOSH.  This was confirmed by the Supreme Court and the European Court of Human Rights.  During all this time, Charlie remained ventilated.

In the High Court, Mr Justice Francis said that his decision was subject to revision should new evidence emerge favouring continued treatment; in July, Charlie’s parents returned to the High Court, claiming that Charlie might benefit from an experimental treatment being offered by Professor Michio Hirano of Columbia University.  However, as proceedings advanced, it became clear that Hirano’s proposed treatment had never been used on patients like Charlie, that he had neither seen Charlie nor read his notes when he offered the treatment, and that he had a financial interest in that treatment.  The position statement issued by GOSH on the 24th July barely hides the hospital’s legal team’s exasperation.  On the 24th July, Charlie’s parents dropped their request for continued treatment.  The details of Charlie’s palliative care were still disputed; his parents wanted it to be provided at home, with ventilation maintained for a few days.  The High Court ruled against this on the 27th July.  Charlie was moved to a hospice; his ventilator was removed, and he died on the 28th July, a few days before his first birthday.

The way this case has played out has not been pretty.  Elements of the American media (this piece, which I’ve mentioned before, is one among many) and the political right wing used it to launch attacks on single-payer healthcare systems:

Nigel Farage weighed in, complaining about the state taking away parental rights:

From the left, Giles Fraser wrote that the case was being dealt with too rationally.  None of these claims is justified, and many left-leaning people have been surprised to find themselves in agreement with Melanie Phillips on this matter.

Legally, the case was very straightforward. more…

Pain After Cancer: A New Model for Pain Psychology?

27 Jul, 17 | by bearp

Guest Post by Lauren Heathcote

What if every headache, every slight twinge in your back, was potentially life threatening? What if you couldn’t tell a brain tumour from coffee-withdrawal? These can be constant, niggling worries for many people who have survived cancer, and we think their experiences can tell us something important about pain.

If you have read a Body in Mind blog post over the last few years you will likely have come across the idea that pain is all about meaning. Pain is about perceiving threat and danger to the body. The general idea is that the brain uses different types of information – including from the external and internal world through our senses, and from within brain centres that encode things like emotion and memory – to decide how much danger the body is in. The brain then produces an output based on all this information, the feeling of pain, to reflect that danger. Importantly, how we interpret painful sensations is an integral part of assigning meaning and making sense of those experiences.

So if pain is about threat – if it’s about meaning – an ideal model to study pain would be one where there is little tissue damage but a high level of perceived danger. Scientists have played around with this idea in the lab for a few decades now (like this cool study in adults and this ace study in kids). The trouble is; thanks to our cushty[1] modern ethics system, making lab participants feel like they are in extreme, life-threatening danger is understandably a bit of a no-go.

So what about outside the lab? A little while ago I became interested in the experience of pain following cancer treatment. Pain is not only a common experience during and after cancer treatment, but it is also one of the most common symptoms that leads to an initial cancer diagnosis. Many individuals live with pain for months before receiving a cancer diagnosis, making pain an experience that was ignored for so long but indicative of such grave danger.  It’s hardly surprising, then, that the experience of pain after cancer can be an anxiety-inducing event. Imagine you are given the ‘all clear’ and you are told to go out and live your life despite the near-constant fear that the cancer may return. How do you live within your body from that moment on? How do you judge a true from a false alarm?

more…

Can We Trust Research in Science and Medicine?

26 Jul, 17 | by bearp

By Brian D. Earp  (@briandavidearp)

Readers of the JME Blog might be interested in this series of short videos in which I discuss some of the major ongoing problems with research ethics and publication integrity in science and medicine. How much of the published literature is trustworthy? Why is peer review such a poor quality control mechanism? How can we judge whether someone is really an expert in a scientific area? What happens when empirical research gets polarized? Most of these are short – just a few minutes. Links below:

Why most published research probably is false

The politicization of science and the problem of expertise

Science’s publication bias problem – why negative results are important

Getting beyond accusations of being either “pro-science” or “anti-science”

Are we all scientific experts now? When to be skeptical about scientific claims, and when to defer to experts

Predatory open access publishers and why peer review is broken

The future of scientific peer review

Sloppy science going on at the CDC and WHO

Dogmas in science – how do they form?

Please note: this post will be cross-published with the Practical Ethics blog. 

Is Hope a Virtue?

13 Jul, 17 | by Iain Brassington

It’s perfectly understandable that hope should have featured so prominently in the coverage of the Charlie Gard case; each proposal is presented as offering fresh hope, each reversal presented as dashing hopes.  In either case, hope is something presented as desirable.  A bit more deeply, hope is one of the Theological Virtues, and so anyone who has grown up in the West, irrespective of their doctrinal commitments, will come from a culture in which there’s an overwhelming sense of hope being something good.  For some, it may even be an unalloyed good – I’ll return to that in a moment.

Indeed, it’s hard to imagine a culture in which hope is not fairly straightforwardly desirable: in which, that is, hope’s desirability is the exception rather than the rule.

Hard, but not impossible.

Here’s Hesiod, telling the story of Pandora in Works and Days (from Dorothea Wender’s translation for Penguin):

Before this time men lived upon the earth
Apart from sorrow and painful work,
Free from disease, which lets the Death-gods in.
But now the woman opened up the cask,
And scattered pains and evils among men.
Inside the cask’s hard walls remained one thing,
Hope, only, which did not fly through the door.
The lid stopped her, but all the others flew,
Thousands of troubles, wandering the earth.
The earth is full of evils, and the sea.
Diseases come to visit men by day
And, uninvited, come again at night
Bringing their pains in silence, for they were
Deprived of speech by Zeus the Wise.  And so
There is no way to flee the mind of Zeus.

Hesiod is ambiguous about hope here.  Was it placed in the cask by Zeus as a sort of remedy for all the other evils?  That’s the interpretation of the story to which I was exposed as a 10-year-old.  It’s plausibly quite a Christianised reading, with Hope as the consolation for the cares of the world, and a shield against despair.  That might have been how some contemporary Greeks took the story, too.  But there’s nothing in the text to indicate that it’s the correct interpretation; it does seem to be something we’d have to infer based on an assumption that Hope is good, and Hesiod offers no grounds for that assumption.  And there’d be puzzles left to solve for this interpretation to work.  Why would Zeus, intent on making humanity suffer, provide an antidote to suffering?  Well, maybe he had a change of heart.  But that seems implausible, since hope was sent with all the evils of the world.  A change of heart would be better expressed by not sending the evils – or not quite so many of them – in the first place.

Might Hope itself have been one of the evils sent by Zeus, then?  That’s be perplexing to a modern audience, but that counts for little; Hesiod was alive at roughly the same time as Homer, in the seventh or eighth century BC, so there’s plenty of time for all kinds of cultural contortions.  Maybe Hesiod’s audience was one in which hope had undesirable connotations.

But why should hope be seen as evil?  Well, Nietzsche has an answer to that in §71 of Human, all too Human: more…

No Pain, All Gain: The Case for Farming Organs in Brainless Humans

10 Jun, 17 | by Iain Brassington

Guest post by Ruth Stirton, University of Sussex (@RuthStirton) and David Lawrence, Newcastle University (@Biojammer)

It is widely acknowledged that there is a nationwide shortage of organs for transplantation purposes.  In 2016, 400 people died whilst on the organ waiting list.  Asking for donors is not working fast enough.  We should explore all avenues to alleviate this problem, which must include considering options that appear distasteful.  As the world gets safer, and fewer young people die in circumstances conducive to the donation of their organs, there is only so much that increased efficiency in collection (through improved procedures and storage) can do to increase the number of human organs available for transplantation. Xenotransplantation – the transplantation of animal organs into humans – gives us the possibility of saving lives that we would certainly lose otherwise.

There are major scientific hurdles in the way of transplanting whole animal organs into humans, including significant potential problems with incompatibility and consequent rejection.  There is, however, useful similarity between human and pig cells, which means that using pigs as the source of organs is the most likely to be viable.  Assuming, for the moment, that we can solve the scientific challenges with doing so, the bigger issue is the question of whether we should engage in xenotransplantation.

A significant challenge to this practice is that it is probably unethical to use an animal in this way for the benefit of humans. more…

Donald Trump’s Mental Health (again)

14 Apr, 17 | by Iain Brassington

The speculation about Donald Trump’s mental health that was doing the rounds earlier in the year seems to have died down a bit.  That’s to be expected; like it or not, his Presidency is now part of normal life.  But I’ve been lagging in my blogging here, and so it’s only now that I’ve got a moment to mention in passing an op-ed article about Trump in the New Scientist that appeared just after I posted last on the topic.  (February.  I know, I know.)

It’s by Allen Frances, and it takes issue with what he calls “armchair diagnosis” of the president.  He’s right to say that there’s something disquieting about armchair diagnosis: “psychiatric diagnosis is already done far too casually and inaccurately in medical and mental health practice.  Armchair diagnosis further cheapens its currency.”  However, I do wonder whether we ought to pay some attention to whose armchair it is.  Often, it’s an armchair occupied by the genuinely ignorant, or the spiteful.  That’s the internet for you.  Accusing someone of being mentally ill or having a personality disorder on this account may be simply mistaken; or it may be intended as a jibe, the subtext of which is that there’s something shameful about having a mental health problem.  But not every armchair is the same: as Frances’ article admits, a letter with 35 signatories who work within the mental health field appeared in the New York Times.  That letter may be misguided, or ill-motivated.  But it is by people who, presumably, know a thing or two about the topic.  Their armchair is not my armchair.

But there’s something else about the piece that’s just nagging away at me.  I don’t know a heck of a lot about mental health, but (and maybe that’s why) there’s a passage in the article that strikes me as being just strange:

But the main [reason for opposing armchair psychiatry] is the inaccuracy of the narcissistic personality disorder (NPD) diagnosis: Trump may be a world-class narcissist, but this doesn’t make him mentally ill.

I wrote the criteria for NPD for the Diagnostic and Statistical Manual of Mental Disorders, which guides mental health diagnosis in the US and beyond. These require not only that the personality features be present, but also that they cause clinically significant distress and impairment. Trump appears to cause severe distress in others (rather than experiencing it himself) and has been richly rewarded (rather than punished) for his self-promoting and self-absorbed behaviours.

[…] We must avoid the frequent mistake of confusing mental illness with bad behaviour. Most people who lie, cheat and exploit others are not mentally ill, and most mentally ill people do not commit dishonourable acts.

There’s a few things that are a bit odd about this. more…

Law Changes and Slippery Slopes

13 Apr, 17 | by Iain Brassington

Apparently, there was a TV programme in Australia the other day in which a there was a discussion of assisted dying.  It got reported in The Guardian, largely on the basis that an 81-year-old audience member kept calling Margaret Somerville “darling” and then got mildly sweary.  I’ve only seen those clips from the programme that are linked in the Graun‘s report, so I’m not going to comment on the tone of the debate in particular.  Rather, I’m interested in one of the responses to the programme, from Xavier Symons, writing in The Conversation.

Symons takes the opportunity to unpick the idea of a slippery slope argument – in this case, the claim that allowing some forms of assisted dying will commit us to allowing… well, that’s open-ended, but it’s sufficient to say that it’d be terrible.  We’d want to avoid terrible things; therefore, the argument goes, we shouldn’t allow any of it.  This is well-worn stuff in the seminar room, but it’s a mode of argument that refuses to die.  Quite correctly, Symons points out that

there is a need for empirical evidence or sound inferential reasoning to support the claim that event B will necessarily (or probably) follow on from event A.  Without this evidence, the argument is invalid. I can’t just claim, for example, that the legalisation of medicinal marijuana leads to the legalisation of ice – I need to show some empirical or logical connection between the two.

So far, so standard.  (I’d say “unsound” rather than “invalid”, because the validity of an argument doesn’t depend on its evidence – or, at least, not in the same way; but that’s a small matter.)  He then makes another move, which is a bit more interesting:

But (and it’s a big but) there is such a thing as a good and valid slippery slope argument.  A good slippery slope argument demonstrates a causal or probable relationship between event A and B, such that event B can legitimately be expected to occur if event A is allowed to occur. […] There are, nevertheless, compelling empirical and logical slippery slope arguments available to defend more modest claims about the “normalisation” of assisted dying.

Is this correct? more…

Professional Codes and Diagnosis at a Distance

6 Feb, 17 | by Iain Brassington

This is the second part of my response to Trish Greenhalgh’s post on the propriety of medics, psychiatrists in particular, offering diagnoses of Donald Trump’s mental health.  In the last post, I concentrated on some of the problems associated with making such a diagnosis (or, on reflection, what might be better called a “quasi-diagnosis”).  In this, I’m going to concentrate on the professional regulation aspect.

Greenhalgh notes that, as a UK medic, she is bound by the GMC’s Duties of a Doctor guidance,

which – to my surprise – does not explicitly cover the question of a doctor’s duty towards a public figure who is not his or her patient.

[…]

My reading of the GMC guidance is that in extreme circumstances, even acknowledging the expectation of how doctors should normally behave, it may occasionally be justified to raise concerns about a public figure (for example, when the individual is relentlessly pursuing a course of action that places many lives at risk). Expressing clinical concern in such circumstances seems to involve a comparable ethical trade-off to the public interest disclosure advice (Duties of a Doctor paragraphs 53-56) that breach of patient confidentiality may be justified in order “to prevent a serious risk of harm to others.”

Well, to be honest, it’s not that much of a surprise to me that the GMC guidelines doesn’t stretch to public figures – but that’s a minor point.

The more interesting thing for me is what the relationship is between the practitioner and the GMC.  Greenhalgh ends her post by saying that she “wrote this blog to promote further debate on the topic and invite the GMC to clarify its position on it”.  But why should the GMC’s position be all that important?

OK: I’m going to go off on a bit of a tangent here.  Stick with me. more…

Diagnosing Trump

5 Feb, 17 | by Iain Brassington

It doesn’t take too much time on the internet to find people talking with some measure of incredulity about Donald Trump.  Some of this talk takes the tone of horrified fascination; some of it is mocking (and is accompanied by correspondingly mocking images); and some people are wondering aloud about his mental health.  In this last category, there’s a couple of sub-categories: sometimes, people are not really talking in earnest; sometimes, though, they are.  What if the forty-fifth President of the United States of America has some kind of mental illness, or some kind of personality disorder?  What if this affects his ability to make decisions, or increases the chance that he’ll make irrational, impulsive, and potentially dangerous decisions?

This does raise questions about the proper conduct of the medical profession – particularly, the psychiatric profession.  Would it be permissible for a professional to speak publicly about the putative mental health of the current holder of the most important political office in the world?  Or would such action simply be speculation, and unhelpful, and generally infra dig?  More particularly, while the plebs might say all kinds of things about Trump, is there something special about speaking, if not exactly ex cathedra, then at least with the authority of someone who has working knowledge of cathedrae and what it’s like to sit on one?

As far as the American Psychiatric Association is concerned, the answer is fairly clear.  §7.3 of its Code of Ethics, which you can get here, says that

[o]n occasion psychiatrists are asked for an opinion about an individual who is in the light of public attention or who has disclosed information about himself/herself through public media. In such circumstances, a psychiatrist may share with the public his or her expertise about psychiatric issues in general. However, it is unethical for a psychiatrist to offer a professional opinion unless he or she has conducted an examination and has been granted proper authorization for such a statement.

This rule is nicknamed the “Goldwater Rule”, after Barry Goldwater, the Senator who sued successfully for damages after a magazine polled psychiatrists on the question of whether or not he was fit to be President.  Following the rule would appear to rule out making any statement about whether a President has a mental illness, a personality disorder, or anything else that might appear within the pages of the DSM.

Over on the BMJ‘s blog, Trish Greenhalgh has been wondering about what a doctor may or may not do in cases like this:

I have retweeted cartoons that mock Trump, because I view satire and parody as legitimate weapons in the effort to call our leaders to account.

But as a doctor, should I go further? Should I point out the formal diagnostic criteria for a particular mental illness, cognitive condition, or particular personality disorder and select relevant examples from material available in the public domain to assess whether he appears to meet those criteria?

Her post is long, but it does generate an answer:

I believe that on rare occasions it may be ethically justified to offer clinically-informed speculation, so long as any such statement is clearly flagged as such. […] I believe that there is no absolute bar to a doctor suggesting that in his or her clinical opinion, it would be in the public interest for a particular public figure to undergo “occupational health” checks to assess their fitness to hold a particular office.

Her phrasing is such as to leave no bet unhedged – she’s careful not to say that she’s talking about anyone in particular; but, beneath that, the message is clear: it might be justifiable to depart from the Goldwater Rule to some extent in certain hypothetical circumstances.

My post in response will also be long – in fact, it’s going to spread out over two posts.  I think she’s plausibly correct; but the way she gets there is not persuasive.

more…

Chappell on Midwives and Regulation

2 Feb, 17 | by Iain Brassington

Richard Yetter Chappell has drawn my attention to this – a blog post in which he bemoans the Nursing and Midwifery Council’s rules about indemnity insurance, and the effects that they’ll have on independent midwives.  (I’d never heard of independent midwives – but an IM – according to Independent Midwives UK – is “a fully qualified midwife who has chosen to work outside the NHS in a self-employed capacity”.)  In essence, what’s happened is that the NMC has ruled that the indemnity cover used by some IMs – around 80, nationwide, according to some reports – is inadequate; these 80 IMs (out of 41000!) are therefore barred from working.

I’ve got to admit that this seems like a bit of a storm in a teacup to me.  For sure, there may have been infelicities about the way that the NMC handled its decision.  That may well be unfortunate, but it may not be all that much to get excited about.  However, Chappell makes two particularly striking points.  The first is his opening claim, in which he refers to this as “a new low for harmful government over-regulation”.  Well, it’s not really government overregulation, is it?  It’s the NMC.  Governing bodies are not government.  And whether it’s overregulation at all is a moot point: we need more information about what the standard is by which we should assess any regulation.  That leads us to the second striking thing that Chappell says, to which I’ll return in a moment.  Whether it’s harmful is also a moot point.  I mean, it may be true – as he points out – that the decision will have an undesirable impact on the relationship between some women and their chosen midwife.  But that won’t tell us anything about whether the policy is desirable all told.  It’s certainly not enough to warrant calling it “unethical” – and to dub something unethical is not a moral argument.

The second striking thing is this: more…

JME blog homepage

Journal of Medical Ethics

Analysis and discussion of developments in the medical ethics field. Visit site



Creative Comms logo

Latest from JME

Latest from JME

Blogs linking here

Blogs linking here