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?
by Dominic Wilkinson @NeonatalEthics
Over the last week, the media has been full 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? Continue reading
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? Continue reading
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.
By Dominic Wilkinson @Neonatalethics
On the 3rd December, as part of the Uehiro lecture series, the Centre for Practical Ethics held a workshop on Animal Ethics at the Oxford Martin School.*
The workshop included first a short summary of her Uehiro lectures by Professor Christine Korsgaard, and then a series of responses by invited guest speakers from the University of Oxford and elsewhere including Professor Jeff McMahan, Professor Cecile Fabre, Dr Mark Sheehan, Professor Valentin Muresan, Dr Emilian Mihailov, Dr Caroline Bergmann and Dr James Yeates. Continue reading
by Dominic Wilkinson, Managing editor JPE, @Neonatalethics
The latest issue of the journal is out this week:
Valerie Tiberius examines the relevance of different theories of wellbeing for the important practical task of providing life-advice to friends. She has posted a short blog on the topic. You can also listen to a great podcast interview with Professor Tiberius about her paper here.
The subject of wellbeing is also covered by a paper by Edward Skidelsky. He argues that happiness surveys give us some information (albeit imperfect) about whether or not people are happy; however, we cannot avoid the need to address the fundamental question of what counts as a good (or happy life).
“nothing that surveys might tell us can upset our common-sense conviction that health, love, freedom, security and respect all standardly contribute to happiness.”
Finally, Kasper Lippert-Rasmussen tackles the rights and wrongs of a pervasive form of discrimination. Lippert-Rasmussen contends that indirect discrimination (rules or behaviour that disproportionately disadvantages a group non-intentionally) isn’t necessarily unjust. He argues that only a strict egalitarian view (with uncomfortable implications) would make indirect discrimination always unjust. See also his blog above.
Dominic Wilkinson @NeonatalEthics
In the news this morning, the NHS has released data on individual surgeons’ performance, so called “surgeon report cards”. This represents the latest move towards increased transparency and accountability in the National Health Service. Elsewhere in the media today, there are numerous reports of the UK couple who were apparently charged £100 after posting a negative hotel review on an online website.
These parallel stories highlight one concern about certain types of health accountability: sensitivity to the negative impact of reviews (or poor performance figures) could lead to harmful changes in behaviour. For surgeon report cards, one frequently cited concern is that publishing report cards could lead surgeons to avoid high-risk cases. If surgeons choose patients with lower risk of dying, they will potentially end up with a better report card. However, then the results would be misleading (it would be the equivalent of someone getting a higher mark by choosing to sit an easier test). More worrying, it may mean that some high-risk patients are unable to access surgery.
Should we be worried about the negative effect of report cards on surgeons behaviour? Continue reading
“Now we must wait, wait. These hours…. The gurgling starts again — but how slowly a man dies! …By noon I am groping on the outer limits of reason. …every gasp lays my heart bare.” Erich Maria Remarque, All Quiet on the Western Front
In Remarque’s novel, the agony of the German soldier, witnessing the slow death of an enemy combatant, is heightened by his own guilt (the narrator had stabbed another soldier in self defense). However, his powerful evocation of distress (and guilt) at witnessing a slow dying is very close to the expressed concerns of parents and clinicians who are watching the death of a child.
By Dominic Wilkinson (@Neonatal Ethics)
Late last month, a paper in the US journal Obstetrics and Gynecology reported the extraordinary case of Abigail Beutler. Abigail is now 14 months old. She was born without kidneys, a condition sometimes called ‘Potter’s syndrome’. Potter’s syndrome is normally universally fatal in the newborn period, because without kidneys the fetus does not produce urine and has little or no fluid around them. Without any fluid around the fetus, their lungs do not develop.
Abigail is the first baby to ever survive with this condition. Doctors infused artificial fluid into the uterus around her (amnioinfusion) on five occasions during the pregnancy. This seemed to allow her lungs to grow. Although she was born 3 months prematurely, she had only minor breathing problems at birth. She has received kidney dialysis since soon after birth, was discharged home after 19 weeks and is now reportedly being considered for a kidney transplant. Continue reading
Last week various newspapers (see here and here) reported on a planned research study of adrenaline for patients suffering a cardiac arrest outside hospital. The PARAMEDIC 2 trial (full protocol here) involves ambulance officers randomly giving patients either the traditional resuscitation drug adrenaline, or a salt-water solution (placebo). The trial has been strongly criticized by Ruth and Lindsay Stirton, writing in the Journal of Medical Ethics.
There are two main controversial elements to the trial design. The first involves the lack of consent for involvement in the trial, the second involves the researchers’ plan not to inform families of patients who died that their loved one had been in a research trial.