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Dominic Wilkinson

Puberty-Blocking Drugs: The Difficulties of Conducting Ethical Research

The ethics of research trials for young people with gender dysphoria are complicated.
Billion Photos/Shutterstock

Dominic Wilkinson, University of Oxford and Julian Savulescu, University of Oxford

A recent Newsnight programme reported that a major UK puberty-blocking trial is under investigation. Doctors at a London clinic provided drugs to block the development of puberty in young adolescents with gender dysphoria, a condition where the person experiences discomfort or distress because of a mismatch between their biological sex and gender identity.

The trial began in 2011. A year after starting the drugs, the young people were apparently more likely to report thoughts of wanting to harm themselves. The worry is that perhaps the treatment they received was causing them to have these thoughts of self-harm and suicide.

One of the criticisms of the study, put forward on Newsnight, is the design. The study involved giving the drugs to a group of adolescents and monitoring the effects. However, there was no control group, that is, adolescents who did not receive the drugs. This makes it hard to be sure whether the rates of self-harming thoughts are related to the drugs, would have happened anyway, or perhaps were lower than they would have been without treatment.Read More »Puberty-Blocking Drugs: The Difficulties of Conducting Ethical Research

Withdrawing Life Support: Only One Person’s View Matters

Dominic Wilkinson, University of Oxford

Shortly before Frenchman Vincent Lambert’s life support was due to be removed, doctors at Sebastopol Hospital in Reims, France, were ordered to stop. An appeal court ruled that life support must continue.

Lambert was seriously injured in a motorcycle accident in 2008 and has been diagnosed as being in a persistent vegetative state. Since 2014, his case has been heard many times in French and European courts.

His wife, who is his legal guardian, wishes artificial nutrition and hydration to be stopped and Vincent to be allowed to die. His parents are opposed to this. On Monday, May 20, the parents succeeded in a last-minute legal appeal to stop Vincent’s doctors from withdrawing feeding, pending a review by a UN Committee on the Rights of Persons with Disabilities.

Lambert’s case is the latest example of disputed treatment for adult patients with profound brain injury. The case has obvious parallels with that of Terri Schiavo, in the US who died in 2005 following seven years of legal battles. And there have been other similar high-profile cases over more than 40 years, including Elena Englaro (Italy, court cases 1999-2008), Tony Bland (UK 1993) Nancy Cruzan (US 1988-90) and Karen Ann Quinlan (US 1975-76).Read More »Withdrawing Life Support: Only One Person’s View Matters

Harmful Choices and Vaccine Refusal

By Dominic Wilkinson @Neonatalethics

 

Last week, medical specialists in the US reported a case of severe tetanus in an unvaccinated 6 year old child, (who I will call ‘C’). The boy had had a minor cut, but six days later he developed intense painful muscle spasms and was rushed to hospital. (Tetanus used to be called, for obvious reasons, “lockjaw”). C was critically unwell, required a tracheostomy and a prolonged stay in intensive care. Patients with this illness develop excruciating muscle spasms in response to noise or disturbance. C had to be heavily sedated and treated in a darkened room with ear plugs for days. The boy was finally discharged from hospital to a rehabilitation facility after 57 days (and an $811,000 hospital bill).

In a disturbing post-script to the case report, the specialists noted that despite being extensively counselled by the hospital staff that this illness could recur, his parents refused for C to be vaccinated with the tetanus (or any other) vaccine.

C has been seriously harmed by his parents’ decision to decline vaccinations. Should he now be vaccinated against his parents’ wishes? Or could a more radical response be justified?

Read More »Harmful Choices and Vaccine Refusal

Separation Anxiety – Should Treatment be Imposed for Conjoined Twins?

by Dominic Wilkinson

@Neonatalethics

On the BBC News website this week, there is a feature on a pair of conjoined twins from Senegal who are currently living in Wales. They have an extremely rare condition – fused at the lower abdomen they have separate brains, hearts and lungs, but shared liver, bladder and digestive system.

The twins travelled to the UK to access medical treatment and surgery for their condition, however, the BBC reports that there is concern that both twins would not survive the surgery. The heart of one twin (Marieme) is weak, and the worry is that if she is separated she will die. Tragically, if the twins remain conjoined there is a fear that Marieme will still die, and her twin Ndeye will also not survive.

What should happen in this case? The twins’ father, Ibrahima, is, according to reports, struggling with the terrible decision that he faces. It isn’t clear at this stage what he will decide.

But what if he refused surgery? What should happen then?Read More »Separation Anxiety – Should Treatment be Imposed for Conjoined Twins?

Should vegans avoid avocados and almonds?

File 20181011 154545 ys78ic.jpg?ixlib=rb 1.1
Avocadon’t?
Nataliya Arzamasova/Shutterstock

Dominic Wilkinson, University of Oxford

A video recently doing the rounds on Facebook included a segment from the BBC comedy quiz show QI. The video asks which of avocados, almonds, melon, kiwi or butternut squash are suitable for vegans. The answer, at least according to QI, is none of them.

Commercial farming of those vegetables, at least in some parts of the world, often involves migratory beekeeping. In places such as California, there are not enough local bees or other pollinating insects to pollinate the massive almond orchards. Bee hives are transported on the back of large trucks between farms – they might go from almond orchards in one part of the US then on to avocado orchards in another, and later to sunflower fields in time for summer.

Vegans avoid animal products. For strict vegans this means avoiding honey because of the exploitation of bees. That seems to imply that vegans should also avoid vegetables like avocados that involve exploiting bees in their production.

Is that right? Should vegans forego their avocado on toast?Read More »Should vegans avoid avocados and almonds?

Groundhog Day and Legal Appeals. (What if Alfie Were a Texan?)

By Dominic Wilkinson

@Neonatalethics

 

According to media reports, the family of seriously ill infant Alfie Evans have decided to lodge a second appeal to the Supreme Court today. This is the 6th legal appeal mounted since the High Court decision, on the 20th February, that continued medical treatment was not in Alfie’s best interests. There is no prospect that this latest legal appeal will be any more successful than the previous ones – its only effect will be to delay the inevitable decision to withdraw life-prolonging medical treatment.

However, the appeal raises an important question in relation to disputed medical treatment. The UK legal appeal system gives families the opportunity to delay decisions that they do not agree with by mounting a series of appeals. (The Court of Appeal judges yesterday referred to this as akin to a form of legal “Groundhog day” with the judges revisiting the same arguments over and over again.)  While the family of Alfie Evans may not succeed in their aim to take him overseas for medical treatment, they have achieved almost 2 months of additional intensive care for Alfie – two months of treatment that has been legally judged to be not in his interests.

Is there an alternative to the existing legal process? Is there a way to avoid protracted legal appeals in cases of disputed medical treatment?

Read More »Groundhog Day and Legal Appeals. (What if Alfie Were a Texan?)

Harm, Interests and Medical Treatment. Where the Supreme Court Got it Wrong…

By Dominic Wilkinson

@Neonatalethics

 

In the latest case of disputed medical treatment for a child, the family of Liverpool toddler Alfie Evans yesterday lost their last legal appeal. The family had appealed to the European Court of Human Rights to examine whether the UK courts’ decision (to allow doctors to stop life support) was contrary to the European Convention on Human Rights. The European Court (as it had in two other cases in the last 12 months) rejected the appeal. It is expected that the artificial ventilation that is currently keeping Alfie alive will be withdrawn in the coming days.

This decision, difficult as it is for his family to accept, is the right decision for Alfie. Medical treatment can no longer help him. As I wrote a month ago, it is time to stop fighting, time to let him go.

However, one important legal and ethical issue raised in this case, and in the case of Charlie Gard from last year, is about the basis for deciding when parents and doctors disagree. What ethical standard should apply?

Last week, the UK Supreme Court adamantly refused Alfie’s parents’ previous legal appeal, focused on this specific question.  I will argue that the court’s arguments fail and that the current UK legal approach is mistaken. (Though in fact, in the Evans case as in the case of Charlie Gard, it seems likely that the court would have reached the same decision about treatment even if it had applied a different ethical standard).

Read More »Harm, Interests and Medical Treatment. Where the Supreme Court Got it Wrong…

Where There is Life, There is Not Always Hope. Ethics, Futility and the Alfie Evans Case

by Dominic Wilkinson

@Neonatalethics

[Updated 22/02/18]

This afternoon, in another case of disputed medical treatment for a seriously ill child, Justice Hayden in the High Court concluded that treatment should be withdrawn from toddler Alfie Evans against the wishes of his parents.

See below for a press release on the Alfie Evans decision. I will add further reports and links to the court transcript when it is available.

See here for ethics commentary and resources on the Charlie Gard case.

See also my recent blog on the Evans and Haastrup cases: Medical treatment disputes and the international second opinion

Details from the court ruling (Liverpool Echo)

Court judgement

Read More »Where There is Life, There is Not Always Hope. Ethics, Futility and the Alfie Evans Case

Medical Treatment Disputes and the International Second Opinion

By Dominic Wilkinson

@Neonatalethics

 

Disputes about medical treatment for seriously ill children are in the news again. Last week, the High Court in London decided in favour of withdrawal of life support from a brain damaged 11-month old infant, Isaiah Haastrup, against the wishes of his parents (an appeal is pending later this month). This week, the High court, sitting in Liverpool, is hearing evidence in the case of 20-month-old Alfie Evans, an infant with an undiagnosed degenerative brain condition.

In both of these cases, as in the controversial Charlie Gard case from last year, medical evidence from UK professionals has been overwhelmingly in favour of withdrawing life support and allowing the children to die. However, in each case parents have sought and have obtained evidence from overseas medical specialists who have testified in favour of continued treatment. In the Evans case, as in the earlier Gard case, experts from the Vatican hospital in Rome have apparently offered ongoing treatment.

This suggests several questions. First, why is there a difference between the views of specialists in this country and those overseas? Second, if there are differences in expert opinion about treatment for a child, should courts give any more weight to the views of UK experts than those from overseas? Is there a valid reason to discount the international second opinion?

Read More »Medical Treatment Disputes and the International Second Opinion