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The NHS

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…

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. 

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…

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…

Natal Nativism

12 Oct, 16 | by Iain Brassington

Scene: the boardroom of a large NHS Trust, somewhere in England.

“And so that brings us neatly to the last item on the agenda: passport checks for pregnant women who want a checkup.  The thing is, you see, that it turns out that we’ve been providing obstetric care to some women who aren’t actually UK citizens.  And, clearly, that has to stop.”
“To stop?”
“Well, maybe not stop.  But you know what I mean.  We can’t go providing treatment to anyone who comes knocking at the door!  Why, we’d have a queue from here to Timbuktu, not to mention the cost!”
“Oh, quite.  No, I quite agree that we can’t be the world’s supplier of healthcare.”
“No.  So that’s settled, then.  No more obstetric services to women who can’t demonstrate their eligibility.”
“Hmmmm.”
“You don’t look convinced.  What’s the problem?  These women aren’t eligible.”
“Well, no.  But… well, look.  Remember when Dr Smith retired, and when Dr Jones got that transfer to work in the Inner Hebrides?”
“All too well.  Two great losses to the Trust.  What’s your point?”
“Well, I seem to remember that we pooled together to buy them nice leaving presents.”
“We did.  It was the least we could do.”
“I agree.  But, you see, the thing is, they weren’t actually entitled to them.  If you see what I mean.”
“I’m not sure I follow.”
“No.  Well, you see, the thing is, we bought them those presents, and gave them to them, because it’s the decent thing to do.  There’s no rule that says that we have to buy them.  They wouldn’t have been wronged if we hadn’t.”
“Yeeeeeeessssss…  I mean, no.  But yes.”
“But we gave them the presents anyway.  Because the rules set out what’s minimially decent.  Not an upper limit.”
“Yeeeeeesssss…”
“Well, you see, I was just wondering: might the same apply in other contexts?  Allowing for the obvious differences, of course.”
“You’re losing me again.”
“I thought I might be.  Well, you see, it’s like this.  We’ve been providing treatment to pregnant women without paying attention to whether they’re entitled by the strict letter of the law.  And that law specifies who is entitled to treatment.  But that doesn’t necessarily impose any exclusions.  You see, I wonder if by getting bogged down in the rules, we might… um…”
“Might what?”
“Well, you see, the thing is…”
“Go on…”
“Look: we might end up looking like utter shits.”

Wholly fictional, this, of course.  No such conversation took place.  On the other hand, as reported by the Beeb, here’s a document from St George’s University NHS Trust.  Skip to p80: more…

Should Junior Doctors Still Strike?

20 Sep, 16 | by bearp

Guest Post by Adam James Roberts

In early July, the British Medical Association’s junior members voted by a 16-point margin to reject a new employment contract negotiated between the BMA’s leadership and the Government. The chair of the BMA’s junior doctors committee, Johann Malawana, stood down following the result, noting the “considerable anger and mistrust” doctors felt towards the Government and their concerns about what the contract would mean “for their working lives, their patients and the future delivery of care” in the National Health Service (the NHS).

The BMA pressed the Government to reopen negotiations and to reverse its decision to impose the contract unilaterally. Those appeals having been rebuffed, the BMA announced two months later a new programme of strikes, citing concerns about the impacts on part-time workers, “a majority of whom are women”; on those doctors who already work the greatest number of weekends, “typically in specialties where there is already a shortage” of staff; the contract’s implications for the ability of the NHS to “attract and keep enough doctors” into the future; and the lack of an answer as to how the Government would manage to staff and fund the extra weekend care which was so often drawn on to justify pushing that new contract through.

Earlier this year, Mark Toynbee and colleagues argued in the JME that the earlier rounds of strikes by British juniors were probably ethically permissible, noting that emergency care would continue to be available, that the maintenance of patient well-being was apparently a goal, and that the strikers felt they were treating industrial action as a last resort. In a later paper, I attempted to outline and apply an ethical framework drawing on Thomist ‘just war’ theories, reaching the same conclusion about the strikes as Toynbee did.

In this guest post, I attempt to update or supplement that literature, considering some of the more recent and popular arguments against the current rounds of strikes and whether any of them might be morally compelling. In particular, I look at the fact that the BMA’s junior leadership had described the rejected offer as “a good deal”; the argument that strikes are a disproportionate response to the remaining issues; the concerns voiced about the strikes by Britain’s General Medical Council; and the allegation that striking doctors are “playing politics”.

more…

Individualised and Personalised QALYs in Exceptional Treatment Decisions

28 Jul, 16 | by BMJ

Guest Post by Warwick Heale

When NICE decides whether to make a treatment available on the NHS it considers both clinical effectiveness and cost effectiveness.  Cost effectiveness is based on population-level QALY data, as is appropriate for a population-level policy.  However, this can cause problems for exceptional individual patients.

When a doctor wants to offer an individual patient a treatment that has been deemed by NICE not to be cost-effective, the doctor can make an Individual Funding Request (IFR) to NHS England or a Clinical Commissioning Group.  The doctor must convince the IFR Panel that the patient is exceptional and that it is worth spending the money on this patient, leaving less to be spent on others.  The Panel’s presumption, based on the population-level data, is that the treatment will not be cost effective, and this stacks the cards against the individual patient, however extreme the patient or their condition may be compared to the population average.

One solution to this might be to consider individualised cost or response (individualised QALYs) or personalised valuations of health states (personalised QALYs).  Applying these concepts might protect the patient from a treatment being refused even if he or she is markedly different from the population average.  In doing this, we would actually promote utility and effective use of resources which is one aim of the IFR process, but one which I think it fails to achieve as effectively as it might.

Consideration of personalised QALYs also offers a justification for offering a Jehovah’s Witness a more costly alternative to blood transfusion, on the basis that this would actually maximise the utility we gain from our limited resources – in contradiction to the more obvious view that this would compromise utility.  Furthermore, in doing this we don’t need to give any special status to religious considerations – the Jehovah’s Witness, the patient of a different faith and the atheist should all be subject to the same principles of personalised QALYs.  Personalised QALYs also allow us to think about patient choice alongside utility rather than as independent principles.

Read the full paper here.

Event: Courting Controversy?

3 Jul, 16 | by Iain Brassington

This might be of interest to some readers:

Courting Controversy?  Recent Developments in Health Care Law

21 July 2016

Chancellors Hotel, Chancellors Way, Moseley Road, Fallowfield, Manchester M14 6NN

This afternoon seminar examines some controversial recent developments in health care law and introduces two new books on law and medicine:

  • Margaret Brazier and Emma Cave Medicine, Patients and the Law (6th Edn) (Manchester UP, 2016)
  • Catherine Stanton and Hannah Quirk (eds), Criminalising Contagion: Legal and Ethical Challenges of Disease Transmission and the Criminal Law (Cambridge UP, 2016)

Participants will have the opportunity to discuss developments in the law and meet the authors and researchers from the Centre for Social Ethics and Policy (CSEP) informally.

Programme

13:30 – 14:00  Registration

14:00 – 14:30  Overview of recent developments (Margot Brazier and Emma Cave)

14:30 – 15:00  Protecting Vulnerable Patients (Emma Cave)

15:00 – 15:30  Criminalising Disease Transmission: Demands, Difficulties and Dangers (Hannah Quirk)

15:30  Tea

16:00 – 16:30  Patient Autonomy: Clinical Compulsion?  An Analysis of Montgomery and Doogan – Margot Brazier

16:30 – 17:00  Law Commission Recommendations on Deprivation of Liberty Safeguards – Neil Allen

17:00  Open Discussion

17:30  Reception

This event is free and offered by the CSEP and the School of Law, University of Manchester.  Registration, however, is required.  Please reserve your place here.  For more information, email maureen.barlow[at]manchester.ac.uk

Should Junior Doctors Strike?

25 Jan, 16 | by Iain Brassington

Guest Post by Mark Toynbee, Adam Al-Diwani, Joe Clacey and Matthew Broome

[Editor’s note: Events in the real world have moved more quickly than David or I have; the facts of the junior doctors’ strike have moved on since the paper was published and this post submitted.  Still, the matters of principle remain. – IB]

A strike by junior doctors is planned for January 2016 following failure of the last-ditch ACAS (Advisory, Conciliation and Arbitration Service) mediated talks between the BMA and the Department of Health (via NHS Employers) – see media reports here, here, and here.  Industrial Action had previously been planned for December last year but was suspended at the last minute when both sides agreed to the now failed mediation.  The current regrettable position has resulted from over two years of formal negotiations between the BMA and NHS Employers regarding a new junior doctor contract.  The BMA went to its junior doctor members for a mandate for industrial action last autumn as the talks stalled and received an almost unprecedented mandate with 98% indicating they would be prepared to strike.

Subsequently, many well-known figures voiced their concerns about the ethical and practical implications of industrial action (here and here).  Strikes by doctors are not common, with only one example in the UK in the last generation, but far from unprecedented.  The overwhelming recent ballot result raises many interesting issues, foremost among them the ethical legitimacy of industrial action by doctors, specifically junior doctors.

The term ‘junior doctor’ is often misunderstood.  It applies to all doctors from graduation until completion of specialist training – over 50,000 individuals.  Their roles and responsibilities have evolved significantly over many years; their pay and hours have reduced whilst their debts, costs and responsibilities have increased.  The patient-doctor relationship has also changed with increased emphasis on patient involvement and the promotion of autonomy.

We have looked at arguments proposed during previous instances of doctor industrial action, often from this journal (see this, this, and this) and considered them in the current context.  Absolute ethical objections to doctor industrial action appear old-fashioned, especially when applied to junior doctors.  Concerns about harms caused by doctors withdrawing their labour also seem less sustainable in the light of recent evidence than perhaps would be expected.  Indeed, the ethical responsibilities of doctors may require them to take action if they believe patient care, or the well-being of their colleagues’, is being compromised.

So far there has been strong support for the junior doctors from the Consultant bodies of many Trusts, and the Royal Colleges.  The modern NHS asks more of its junior doctors than ever before, placing ever increasing responsibilities on their shoulders, with ever more challenging working conditions.  With industrial action by junior doctors now likely to go ahead, claims that it would be unethical appear to us to be increasingly hard to justify.

Read the paper here.

R-E-S-P-E-C-T

24 Dec, 15 | by Iain Brassington

Here’s an intriguing letter from one John Doherty, published in the BMJ yesterday:

Medical titles may well reinforce a clinical hierarchy and inculcate deference in Florida, as Kennedy writes, but such constructs are culture bound.

When I worked in outback Australia the patients called me “Mate,” which is what I called them.

They still wanted me to be in charge.

Intriguing enough for me to go and have a look at what this Kennedy person had written.  It’s available here, and the headline goes like this:

The Title “Doctor” in an Anachronism that Disrespects Patients

Oooooo-kay.  A strong claim, and my hackles are immediately raised by the use of “disrespect” as a verb – or as a word at all.  (Don’t ask me why I detest that so; I don’t know.  It’s just one of those things that I will never be able to tolerate, a bit like quiche.)  But let’s see…  It’s not a long piece, but even so, I’ll settle for the edited highlights: more…

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