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Debate: The Fiction of an Interest in Death? Justice for Charlie Gard

26 Apr, 17 | by miriamwood

 

Julian Savulescu

Dominic Wilkinson’s Response

A judge ruled last week that baby Charlie Gard will have his treatment withdrawn, against the wishes of his parents. His doctors argued that the rare mitochondrial disease (MDDS) he was born with was causing him unbearable suffering.

His parents had raised funds to take him to the US for experimental treatment and they wanted the chance to try the treatment. His doctors argued that such treatment could only prolong his suffering. It was their belief that it was in his best interests for treatment to be withdrawn, and for his life to end, a belief which the trial judge endorsed.

“It is with the heaviest of hearts, but with complete conviction for Charlie’s best interests, that I find it is in Charlie’s best interests that I accede to these applications and rule that GOSH may lawfully withdraw all treatment save for palliative care to permit Charlie to die with dignity.”

This is a profoundly difficult decision, and one in which all parties are acting out of care and compassion for the child. My comments are of course limited as I do not have access to all the relevant facts. However, it does raise an important question about the current basis of such decisions.

Ethics of Limitation of Life Prolonging Medical Treatment

In general, medicine has a presumption in favour of saving life, or prolonging life. There are three justifications for departing from this default. That is, there are 3 justifications for withholding or withdrawing life prolonging medical treatment:

  1. the patient autonomously refuses it. (autonomy)
  2. continued life is no longer in the patient’s interests (best interests)
  3. the probability of the treatment prolonging life, or the quality of life, or the length of time the patient can surVive are too low to justify the cost of the attempt (distributive justice)

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…

Politicians, Delusional Managers and the Future of the NHS: Have NHS Leaders Failed to “Speak Truth unto Power”?

11 Jan, 17 | by Iain Brassington

Guest Post by David Lock QC

[NB: This is a slightly longer version of a post that appeared on the BMJ blog earlier today.]

Politicians, delusional managers and the future of the NHS:  have NHS leaders failed to “speak truth unto power”?

This blog is not a rant – well not too much of a rant.  It is an expression of serious frustration about the way the NHS is run and about the willingness of senior NHS managers to become complicit in dishonesty.  It also needs to acknowledge the brave role of some in the NHS – particularly in NHS Providers – who keep telling it as it is and being decried for doing so.

Everyone at the frontline knows the NHS is running on empty.  The more perceptive know that more money for the NHS alone will not improve services for patients.  But – and this is perhaps the unpopular “but” – NHS senior managers ought to accept their share of the responsibility for the present crisis.  The problem is the failure of NHS managers to “speak truth unto power” to those above them and to our political masters for too many years.  Long before Sir Ivan Rogers used the phrase, a 2015 FCO blog explained the centrality of this concept as part of public service as follows:

The UK Civil Service doesn’t have an official motto – but if it did, it would almost certainly be: “speak truth unto power”. It’s a maxim that’s in the blood of good civil servants, even if they know that it won’t make their lives any easier. The best politicians learn to cherish civil service advice which points out the flaws in their arguments. The worst surround themselves with sycophants who create a micro-climate which wraps a warm embrace around their worst tendencies.

But, this principle appears respected in the breach in the NHS.   The £22bn efficiency challenge came out of nowhere and yet became an article of faith.  Of course, it has not been delivered and was never going to be delivered, but the planning process has continued in a parallel universe where no one has the courage to say “Actually this is nonsense – a public service has never delivered these efficiency savings and the NHS will not do so”.  So the fiction is maintained that this is what the NHS has to do by 2020.  But, of course, we are now in 2017 and so there is precious little time to deliver the undeliverable.

Secondly, the fiction is that the present government is putting an extra £10bn into the NHS, as well as promising an extra £350m per week as a Brexit dividend.  The £10bn claim was never accurate.   No set of “true and fair” NHS accounts could ever include the £10bn claim.  The £350m a week claim was made for votes, not for spending.  And yet who in the NHS has held the government to account for either promise? more…

Trump’s Anti-Regulator

12 Dec, 16 | by Iain Brassington

In the latest edition of “Dude, really?” news to come from the post-election US…

Wait: let me start that again.  In the latest edition-that-I’ve-had-time-to-digest-because-I-really-can’t-keep-up-with-this-stuff edition of “Dude, really?” news to come from the post-election US, it would appear that a strong candidate to head the Food and Drug Administration under Donald Trump is one Jim O’Neill.  According to the Scientific American,

O’Neill would be an unusual choice. He is not a physician, and lacks the strong science background that nearly all former commissioners have had in recent years.

A graduate of Yale University, with a master’s degree from the University of Chicago, O’Neill went to work at the Department of Health and Human Services in 2002, after a stint as speechwriter at the Department of Education. He worked his way up to principal associate deputy secretary, where he advised the HHS Secretary on all areas of policy, according to his LinkedIn page.

Now, so far, that is probably not too big a deal.  Since the head of the FDA is not actually involved in doing any bench science, the fact that he lacks a strong science or medical background needn’t matter too much.  What does matter is that the person in charge of the agency should be able to to consult the right kind of person and so on: in other words, to be broadly scientifically literate, and to have access to specialists.  That sets a much lower bar.  Medical or pharmacological expertise, after all, is much more likely to mean expertise in one comparatively narrow area within each subject than it is to mean a thoroughgoing expertise in the whole field; therefore even someone with a strong science background would have to rely on advice from others when it comes to things outside the postholder’s particular area of study.  Indeed, by the time you’ve worked up the administrative experience to lead an agency, it’s probably a while since you cleaned your last test-tube – so even your notional expertise may not be quite as cutting edge as you’d like to think.  And, working the other way, being a whizz-bang scientist is perfectly compatible with being terrible at what is essentially a senior civil-service gig.

So… not a medic, not a scientist?  Not necessarily a problem.  You just have to know which people to ask what questions – and that’s what you’d be doing anyway.*

But, of course, there’s a “but”.  Actually, there’s several “but”s.

Like, for example, it’s one thing not to have a strong scientific background; but it’s quite another to reveal that more…

Are Single Men in the UK Entitled to have a Baby using Fertility Treatment?

22 Nov, 16 | by Iain Brassington

Guest post by Atina Krajewska, Rachel Cahill-O’Callaghan, and Melanie Fellowes

The World Health Organisation is currently considering a change in the definition of infertility according to which, it has been reported, “single men and women without medical issues [would] be classed as ‘infertile’, if they do not have children but want to become a parent.”  Although the WHO has not to date officially confirmed these reports, the possible changes have been considered controversial and provoked heated responses in other UK media.  One of the main points of contention was the possibility of opening fertility treatment to single men.  Before we engage in discussions about the new WHO standards concerning fertility treatment, which – it should be stressed – have not yet been officially announced or adopted, it is important to shed some light on the legal situation of single men in the UK, who wish to become single fathers using fertility treatment.   This entry is aiming to exactly that.  (In respect of single women, see this.)

A single man wishing to have a child will have to use a surrogate and will either use the surrogate’s ovum and his sperm, or she will carry an embryo created by his sperm and a donated egg.  The HFE Act 1990 (as amended by the HFEA 2008) and the Surrogacy Arrangements Act 1985 will therefore be the two most relevant pieces of legislation governing the area.  Neither of these Acts expressly mentions single men as a separate class of patients.

The Human Fertilisation and Embryology Act 1990 has never prevented single persons from accessing ARTs.  The Act and the Human Fertilisation and Embryology Authority’s 8th Code of Practice refers to a “woman”, a “couple”, and an “individual”, and the latter opens up the possibility for single men to access treatment.  Consequently, should they be adopted, the new WHO guidelines would not affect the fundamental principles of the HFE Act 1990 (2008), which does not engage with questions of rationing and access to publicly funded treatment.  It is also unlikely that it could affect the interpretation of these provisions of the Act that may be seen as creating invisible obstacles for single persons.  (More here and here.)

A look at the 2008 HFE Act suggests that the legal position of single men is arguably weaker than that of single women (excluding women using surrogacy, who seem to constitute the most vulnerable and least protected group of patients).  The amended version of s 13 (5) of the HFE Act 2008, which replaced “the need for a father” with the “need for supporting parenting” in the welfare of the child assessment, refers only to a woman and is now silent about the man.  This change was rightly welcomed as enhancing equality and promoting alternative family structures in the context of ARTs.  However, it has paradoxically weakened the position of single men.  A surrogate woman who gives birth to a child would be recognised as a legal mother under the HFE Act and would only need to show evidence of a supportive network of family and friends.  At the same time, the wording of s 13(5) weakens the claims of single men wishing to become parents by accessing fertility treatment.

The biggest challenge single men face in this context is the establishment of legal parenthood.  Interestingly, the only situation in which a single man could be regarded as the legal father of the child would occur when he is the biological father, the surrogate mother is unmarried and not in a civil partnership, and no one chooses otherwise.  (This rule is inferred from s 42, 43, and 44 HFE Act 2008, although none of these provisions mentions single men.)  The realities of surrogacy will rarely allow for such a set of circumstances to occur.  On top of this, the single male might also struggle to satisfy the requirement under s. 54(8) HFEA 2008 that no money or other benefit has been given or received for surrogacy, as the majority of arrangements will involve third parties who are not family members, and will usually involve a financial component.  This is one of the reasons why most surrogacy arrangements involving single men will take place abroad.  In these cases, the single man whose child was born as a result of a surrogacy arrangement through IVF/IUI will have to apply for a parental order or adoption. more…

A Hot Take on a Cold Body

21 Nov, 16 | by Iain Brassington

It’s good to see Nils’ post about the recent UK cryonics ruling getting shared around quite a bit – so it should.  I thought I’d throw in my own voice, too.

About 18 months ago, Imogen Jones and I wrote a paper musing on some of the ethical and legal dimensions of Christopher Priest’s The Prestige.  One dimension of this was a look at the legal status of the bodies produced as a result of the “magic” trick – in particular, the haziness of whether they were alive or dead; the law doesn’t have any space for a third state.  The paper was something of a jeu d’esprit, written to serve a particular function in a Festschrift for Margot Brazier.  If I say so myself, I think it’s a pretty good paper – but it’s also meant to be fun, and is clearly rather less serious than most ethico-legal scholarship (or anything else in the book, for that matter).

coldlazarus5

Not quite “Cold Lazarus”, but close enough…

So it’s a bit of a surprise to see relevantly similar themes popping up in the news.  If we’re freezing people in the hope of curing terminal illness in the future, what’s the status of the bodies in the meantime (especially if the death certificate has been signed)?  There’s a load of questions that we might want to ask before we get too carried away with embracing cryonics.

Right from the start, there’s a question about plausibility.  For the sake of what follows, I’m going to treat “freezing” as including the process of defrosting people successfully as well, unless the context makes it clear that I mean something else.  Now, that said, the (moral) reasons to freeze people rely on the plausibility of the technology.  If the technology is not plausible, we have no reason to make use of it.  It wouldn’t follow from that that using it’d be wrong – but since the default is not to act in that way, it’s positive reasons that we need, rather than negative ones.  Neither could we really rely on the thought that we could cryopreserve someone in the hope that the freezing-and-thawing process becomes more plausible in future, because we’d have no reason to think that we’d chosen the right version of the technology.  We can only cryopreserve a person once: what if we’ve chosen the wrong technique?  How would we choose the best from an indefinitely large number of what we can at best treat as currently-implausible ones?

So how plausible is it to put a body on ice, then revive it many years later?  It’s been pointed out by some that we currently do preserve embryos without apparent ill-effect, with the implication that there’s no reason in principle why more developed humans couldn’t be frozen successfully.  However, whole humans are a wee bit more complex than embryos; it’s not at all clear that we can extrapolate from balls of a few cells to entire humans.  Even the admittedly limited experimental evidence that it’s possible to freeze whole organs won’t show us that, since we’re systems of organs.  One can accept that an organ is a system, too; but all that means is that we’re systems of systems – so we’ve squared the complexity.  And, of course, the timescales being considered here are tiny compared with the kind of timescales envisaged in cryonic fantasies. more…

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