Children and Families

Relaxed about dying?

“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.

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Playing the game: a story for the pool-side sun-lounger

It’s still summery, and so here is a little story for the beach or the side of the pool

‘There are challenges, certainly’, said the Boss. ‘But we’re confident that we can meet them. Or at least’, he went on, looking over his glasses for signs of dissent, ‘for a critical mass of stakeholders’.

A graph appeared on the screen at his side. He traced its lines with a red laser dot.

‘Here’, he said, ‘we have the expected rise of temperature with time. And here’ (he stabbed with the dot, as if doing the killing himself), ‘we have the consequent reduction in human population – assuming’ (and he held up a schoolmasterly finger), ‘we don’t have any HR66.’

He sipped some water, and waited for this to sink in. It did.

‘But don’t worry’, he said. ‘There’s good news. We do have HR66. Not enough for everyone, sadly, but enough to ensure that the human baton is passed on. And enough, I’m glad to say, for everyone in this room.’

There was a ripple of relief.

‘And their families, of course’, the Boss continued. ‘Families are very important to us. But all this assumes that you want to have the HR66. No one will make you. But, frankly, what’s not to like? You take a single dose, and you survive. If you don’t take it, you don’t survive. It’s as simple as that. It even tastes of candy floss. It has only one side-effect, and that’s a wholly good thing. It increases – increases, mark you – your IQ. Very, very significantly. By about 100 points, in fact. Not only will you be alive; you’ll be a genius beside whom Einstein would have seemed a hopeless retard.’

One more press of the button, and up flashed the logo of the corporation that manufactured HR66. The Boss didn’t think it relevant to mention his shareholding.

‘Naturally’, said the Boss, ‘we have to vote for this in the usual way. Yes, humanity’s facing apocalypse, and there’s one, and only one way out. But we’ve still got to do things properly. But I expect that we can move to a vote now, can’t we?’

‘I’m sure we can’, agreed the Deputy. ‘You’ve all seen the motion. All those in favour….’

‘One moment’.

The Boss and the Deputy, up on the podium, stared. Everyone else turned. A little man in tweed lisped through a badger’s beard. ‘I’d like some clarification, please.’

‘But of course, Tom’, said the Boss, magnanimous and desperately alarmed. ‘Anything you like.’

No one really knew how Tom had got into the government, or why he wanted to be there. He had no strategically significant connections, no dress sense, no publications other than some monographs on moths and mediaeval fonts, no assets other than a dumpy wife, some anarchic, unwashed children and a small cottage on Dartmoor, and no entries in the Register of Members’ Interests apart from ‘Masturbation’. This entry had caused a terrible storm. He’d been accused of injuring the dignity of the House, but, after expensive legal advice had been taken, it had been ‘reluctantly concluded’ that there was no power to force him to remove it.

‘I’d like to know’, said Tom, ‘who’s going to get the drug. And why them rather than anyone else.’ Continue reading

Epigenetics and Blaming Pregnant Women: Hasty Conclusions, Control, and Simplified Burden of Responsibility

In a recent (13.8.2014) article in Nature , Sarah S. Richardson and colleagues maintain that careless discussion of epigenetic research on how early life affects health across generations could harm women.

Authors discuss the extensive history of placing the burden of responsibility of a child’s health on the lifestyle of the pregnant mother – and the means for controlling women’s behavior. Authors describe how, for example, evidence of any fetal harm easily lead to zero-tolerance regulatory frameworks and severe informal and formal consequences (e.g. social condemnation for an occasional sip of alcohol despite the ambiguous evidence that very moderate and occasional drinking should harm the fetus), and how the “lack of emotional warmth” of the “refrigerator mothers ” was considered to be the reason to child autism as late as the 1970s. Going even more backwards in the history, various defects were attributed, for example, to the company the mother kept during pregnancy.

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Telling porkies

by Dominic Wilkinson (@Neonatalethics)

 

One of my registrars asked an interesting question this morning. A commonly used life-saving medicine in newborn intensive care is derived from animal products; should parents be told?

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Morality, science, and Belgium’s child euthanasia law

Originally posted on the OUP blog. Reposted with the permission of the author

Tony Hope is a Uehiro fellow, Emeritus Professor of Medical Ethics at the University of Oxford and the author of Medical Ethics: A Very Short Introduction.
Science and morality are often seen as poles apart. Doesn’t science deal with facts, and morality with, well, opinions? Isn’t science about empirical evidence, and morality about philosophy? In my view this is wrong. Science and morality are neighbours. Both are rational enterprises. Both require a combination of conceptual analysis, and empirical evidence. Many, perhaps most moral disagreements hinge on disagreements over evidence and facts, rather than disagreements over moral principle.

Consider the recent child euthanasia law in Belgium that allows a child to be killed – as a mercy killing – if: (a) the child has a serious and incurable condition with death expected to occur within a brief period; (b) the child is experiencing constant and unbearable suffering; (c) the child requests the euthanasia and has the capacity of discernment – the capacity to understand what he or she is requesting; and, (d) the parents agree to the child’s request for euthanasia. The law excludes children with psychiatric disorders. No one other than the child can make the request.

Is this law immoral?

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Murder or mercy?

The newspapers today are full of the horrifying story of three children who were found dead in their family home in South London on Tuesday.  The children had all apparently been diagnosed with a severe genetic disorder (spinal muscular atrophy), that was likely to lead to death in early childhood. Their mother has today been charged with their murder.

There are relatively few details available at this stage, and doubtless more will emerge over coming days and months. It would be premature to comment on the specific circumstances of the case (and the family has asked the public and media to refrain from speculation). However, it is likely that as those details do emerge that commentary on the case will take up one of two themes. Some commentators will point to the enormous strain of caring for severely disabled and terminally ill children, and perhaps bemoan the lack of available supportive services. Others (perhaps with disability or with personal experience of caring for the disabled) will react with horror at the idea of a parent killing their child, and reject any attempt to use child disability as a form of excuse for the crime. Continue reading

Brain training in schools?

Neurofeedback works like this: you are hooked up to instruments that measure your brain activity (usually via electroencephalography or functional magnetic resonance imaging) and feed it back to you via auditory or visual feedback. The feedback represents the brain activity, and gives you a chance to modulate it, much as you might modulate the movements of your hand given visual or haptic feedback about its activity. What is interesting about the use of neurofeedback is it appears to train people to exercise some control over brain activity related to cognitive and mood-related processes. In other words, neurofeedback might potentially allow agents to modify the activity in their brains such that mood, attentional capacity, and other mental functions improve. Continue reading

How much transparency?

By Dominic Wilkinson (Twitter: @Neonatalethics)

There are reports in the press this week that the remains of 86 unborn fetuses were kept in a UK hospital mortuary for months or even years longer than they should have been. The majority were fetuses less than 12 weeks gestation. According to the report, this arose because of administrative error and a failure to obtain the necessary permissions for cremation.

The hospital has publicly apologized, and set up an enquiry into the error. They are planning to cremate the remaining fetuses. However, they have decided not to contact all of the families and women whose fetal remains were kept on the basis that this would likely cause a greater amount of distress.

Is this the right approach? Guidelines and teaching in medical schools encourage health-care professionals and institutions to own up to their errors and disclose them to patients. Is it justifiable then to not reveal errors on the grounds that this would be too upsetting? How much transparency is desirable in healthcare?

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Cultural relativism and female genital mutilation

The Guardian newspaper has today launched a campaign to end female genital mutilation (FGM). This coincides with evidence that, despite being illegal, a significant number of young women from the UK undergo the practice. Globally, more than 125 million living women have had some form of FGM performed.

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The Texan flautist and the fetus

Imagine that when you woke up this morning, you found yourself lying next to an unconscious stranger. The stranger has a rare life-threatening illness, and unbeknownst to you he was plugged in to your organs during the night. You are now stuck to the stranger. If you disconnect the life support he will die. If, though, you remain connected to him for most of the next year his illness will have recovered, and he can safely ben unplugged. What should you do? Are you obliged to stay attached to the stranger? It might be generous of you to give up your body, and good if you choose to do so, but should we require you to remain connected?

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