“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.
by Dominic Wilkinson @NeonatalEthics
Over on the Journal of Medical Ethics blog are a couple of posts that might be of interest to Practical Ethics readers.
Last week, the journal published online an article by Cristina Richie on carbon caps and IVF. She argues that the environmental costs of reproduction should lead to carbon caps on IVF, and more restrictive public access to artificial reproduction.
Iain Brasssington wrote a blog in response, ‘ARTs in a warming world‘. He wrote:
“while reproduction may be a good, it is not the only good at which persons or policies may or should aim; and there are times when two goods conflict. Neither is it too strange to suggest that there are times when a person should abandon one good because of the greater moral gravity of some other, greater, good. It’s possible that reproduction is one of those goods.”
I also wrote a blog in response to Richie, arguing that “Gaia doesn’t care where your baby comes from“. From an environmental point of view there seems little reason to place limits on artificial but not natural reproduction, or to restrict publicly funded IVF (as Richie suggests) to the “biologically infertile”.
Finally, Iain wrote a follow-up piece about conflicts of interest and ethical analysis. Some had criticised Richie’s arguments on potentially ad hominem grounds. Brassington argues (persuasively) that what matters are the arguments, not their origins.
[Feel free to comment over on the JME blog]
by Dominic Wilkinson (@NeonatalEthics)
Lord Falconer’s assisted dying bill is being debated today in the House of Lords. In the past week or two there has discussion in the media of many of the familiar arguments for and against such a proposal. As Roger Crisp noted in yesterday’s post, there have been relatively few new arguments. Supporters of the bill refer to compassion for the terminally ill, the difficulty of adequately relieving suffering, and patients’ right to make fundamental choices about the last stage of their lives. Opponents of the bill express their compassion for the terminally ill and those with disabilities, fear about coercion, and the omnipresent slippery slope.
One concern that has been raised about the assisted dying bill is the fear of abuse in the setting of an overstretched public health system. For example, Penny Pepper, writing in the Guardian notes that “Cuts to social care are monstrous…How would the enactment of the Falconer bill work if brought to our harassed NHS?”
The BBC reports today on a recent organ donation initiative in Brazil. This initiative has led to a 400% increase in the numbers of heart transplants in a local hospital. The waiting list for organs in the city of Recife reportedly dropped to zero in the first year after introduction of this innovation.
What sort of initiative could lead to such a dramatic increase in organ donation numbers? Continue reading
On the 22nd of October 1707, more than 1400 British sailors died when a British naval fleet sank in stormy weather off the Isles of Scilly. The disaster was later attributed to failings in navigation and sailors’ difficulty in determining their location at sea. This was a perennial problem at the time, and had persisted despite intense scientific research. Seven years later, the UK government passed the Longitude Act, offering 20,000 pounds (more than 2 million pounds in today’s money) to anyone who could develop a method for reliably determining longitude at sea. The longitude prize was eventually won by John Harrison, a self-educated Lincolnshire clockmaker.
Yesterday, 300 years after the original Longitude act, the UK Technology Strategy Board launched a £10 million pound prize competition, a new ‘Longitude prize’. The money will be awarded to a scientist or group of scientists who come up with a solution to one of a set of major global challenges – inadequate food/clean water supply for everyone, antibiotic resistance, spinal cord injury, dementia, the large carbon impact of air-flight.
The new Longitude prize is the latest in a series of innovation inducement competitions over time. These competitions have offered monetary rewards for solving problems as diverse as the development of butter substitutes, the first trans-Atlantic air flight, reusable aircraft for space flight, or an alternative fertilizer to bird poo. One novel feature of the 2014 Longitude prize is that it is seeking public input into the specific challenge to be targeted. Public voting will decide which of the six global challenges above are to be the focus of the prize.
But are innovation prizes an effective or appropriate way to solve major global scientific challenges? Continue reading
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
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.