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Dominic Wilkinson

How much would you pay to live an extra year?

Dominic Wilkinson, University of Oxford

@Neonatalethics

Medical science continues to push at the boundaries of life and death with new drugs and technologies that can extend life or improve health. But these advances come at a cost. And that inevitably raises difficult questions about whether public health systems should pay for such treatments – and, if so, how much. For example, should the NHS fund the new breast cancer drug Kadycla which comes with a £90,000 price tag per patient?

Some countries make these difficult decisions by looking at the cost-effectiveness of new treatments. How much does the new treatment cost and how effective is it compared with existing treatments? Treatments may help patients live longer, or they may improve a patient’s quality of life (or both). Kadycla appears to extend life by about six months.

One mathematical way of combining these elements uses the concept of a Quality-Adjusted Life Year saved, or QALY. As an example, a treatment that extends life for one year but at a “quality” level of half normal it said to save 0.5 QALY. When treatments are assessed this way, health systems can then use a threshold to work out a maximum cost that is affordable. The National Institute for Health and Care Excellence (NICE) uses a threshold of £20,000-£30,000 for each Quality-Adjusted Life Year saved (QALY). This would mean (assuming full quality of life), that the NHS would be prepared to pay £10,000-15,000 for a course of Kadycla.

Saving time.
Bank by Shutterstock

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Gene-free: Can parents refuse genetic testing for their child?

by Dominic Wilkinson @Neonatalethics

A critically ill infant in intensive care (let us call him Jonas) has serious congenital abnormalities affecting his liver and brain.1 Doctors looking after Jonas suspect that he may have a major genetic problem. They have recommended testing for Jonas, to help determine whether he does have this problem.

However, Jonas’ parents have refused consent for the genetic test. They are concerned that the test could be used to discriminate against Jonas and against them; they have repeatedly indicated that they will not agree to it being performed.

Could it ever be ethical to perform genetic testing on a child against parental wishes?

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Event announcement: European Neonatal Ethics Conference

by Dominic Wilkinson @Neonatalethics   The second European Neonatal Ethics Conference is taking place next June (1-2nd) here in Oxford. I’m very pleased to have been asked to chair the conference, and there is a great line-up of speakers including Margot Brazier, Sofia Moratti, Ingrid Miljeteig, Mirjam de Vos, John Wyatt, Neil Marlowe. Those with… Read More »Event announcement: European Neonatal Ethics Conference

Why are unethical neonatal trials still taking place in developing countries?

By Dominic Wilkinson, @Neonatalethics

Earlier this year, the Lancet published a trial (the ‘ACT’ trial) involving 100,000 babies at risk of being born prematurely in developing countries. Half of the mothers in the ACT trial did not receive a simple cheap medicine that has been previously shown in multiple trials and meta-analysis to reduce the risk of death for premature babies. From the ACT trial results, it appears that 89 additional babies died as a result of their mothers taking part in the trial.

Surely this is an egregious example of unethical research? It appears to be in breach of the World Medical Association Declaration of Helsinki standards. Why did ethics committees allow the research? Why did a major journal like the Lancet publish it? Why aren’t bioethicists and activist and advocacy groups like Public Citizen jumping up and down in outrage?

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#IminworkJeremy – the ethics of 24/7 consultant cover

By Dominic Wilkinson @Neonatalethics

 

At the bedside of a critically ill infant at 5am this morning I was tempted to tweet the latest meme, adding my voice to a chorus of NHS clinicians over the weekend. Last week, in a speech to the King’s fund, Health Minister Jeremy Hunt launched a drive towards 7 day NHS. In particular, he focused on consultant contracts, proposing that newly qualified hospital doctors will be required to work weekends as a condition of employment.

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Reincarnation and discrimination

by Dominic Wilkinson @Neonatalethics

In California, in the last week, there have been further motions in a long running lawsuit relating to a brain-dead child. Oakland teenager Jahi McMath died after a tonsillectomy in December 2013. However, her parents rejected the medical diagnosis of brain death, and despite a Californian court providing judicial backing for doctors’ determination, organized for her to have a tracheostomy and be transferred to another medical facility. More than 18 months later it appears that Jahi’s heart is still beating and she is still connected to a breathing machine somewhere in New Jersey.Read More »Reincarnation and discrimination

It’s tough to make predictions*

by Dominic Wilkinson, @Neonatalethics

The Court of Protection is due to review very soon the case of a teenager with a relapsed brain tumour. The young man had been diagnosed with the tumour as a baby, but it has apparently come back and spread so that according to his neurosurgeon he has been “going in and out of a coma”. In February, the court heard from medical specialists that he was expected to die within two weeks, and authorized doctors to withhold chemotherapy, neurosurgery and other invasive treatments, against the wishes of the boy’s parents.

However, three months after that ruling, the teenager is still alive, and so the court has been asked to review its decision. What should we make of this case? Were doctors and the court wrong?

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Doing what they want: the ethics of infamy

by Dominic Wilkinson @NeonatalEthics

Over the last week, the media has been f142798388110247ull of the story of Artur Lubas*. Lubas was the co-pilot of a Germanwings flight, and is thought to have deliberately crashed a plane into a mountainside in a form of murder-suicide, killing 149 others in the process.

There are a range of ethical questions in the Germanwings tragedy. Carissa Veliz, writing on this blog yesterday, pointed to the ethics of disclosure of medical information – either in order to prevent a tragedy, or after a tragedy has occurred. There have been questions about screening of pilots for illness. Others have raised concerns about the unfair media attention on depression in the last week.

Here, I wish to draw attention to a separate question. One suggestion in the last week has been that Lubas’ extreme action was driven in part by a desire for attention. He apparently told a former girlfriend that “I will do something that will change the whole system, and then all will know my name and remember it”.

But this raises an interesting question: the intense media focus on the Germanwings tragedy, and on Lubas in particular, appears to have given him exactly what he wanted. Should we be worried about that, and is there anything we can do about it?Read More »Doing what they want: the ethics of infamy

Shouldering the burden of risk

By Dominic Wilkinson @NeonatalEthics

 

The UK supreme court last week awarded a woman £5 million in compensation after her obstetrician failed to warn her of a risk that she would have difficulty delivering her baby. Over on the JME Blog Kirsty Keywood discusses some interesting and important legal elements of this judgment for the practice of informed consent and how this will be evaluated in negligence claims.

However, the case raises one important ethical issue. Several expert witnesses in the Montgomery case testified that informing women of even very low risks of complications of vaginal birth would likely lead to a significant increase in the number of women choosing elective caesarean section.

If that is true, would it be justified for doctors to deliberately not discuss such risks?Read More »Shouldering the burden of risk

An infant-sized ethics: St Cross Ethics Seminar – Dr Richard Hain

by Dominic Wilkinson @NeonatalEthics

On the 29th of January, Paediatric Palliative Care Specialist Dr Richard Hain gave the first St Cross Special Ethics Seminar for Hilary Term.

Dr Hain’s talk was titled “Mere Practicality?  Infants, interests and the value of life”. The talk abstract and a link to a podcast of his talk can be found below.

The main focus of the talk was on contemporary accounts of medical ethics and in particular on the challenge of finding an adequate account that addresses the needs of human infants. Hain drew an analogy with a blood pressure cuff or “sphygmomanometer”. Blood pressure cuffs wrap around the upper arm, and air is pumped in to them until blood flow stops through the arm (this gives a reading of the pressure in the patient’s arteries). Adult-sized blood pressure cuffs don’t work well for children or infants. A too large cuff will usually give a reading that is too low because it doesn’t take as much air to cut off the blood flow. It underestimates a child’s true blood pressure.

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