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
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?”
At some point, most people will have questioned the necessity of the existence of mosquitoes. In the UK at least, the things that might prompt us into such reflection are probably trivial; in my own case, the mild irritation of an itchy and unsightly swelling caused by a mosquito bite will normally lead me to rue the existence of these blood-sucking pests. Elsewhere though, mosquitoes lead to problems that are far from trivial; in Africa the Anopheles gambiae mosquito is the major vector of malaria, a disease that is estimated to kill more than 1 million people each year, most of whom are African children. Continue reading
There are approximately 150,000 human deaths each day around the world. Most of those deaths pass without much notice, yet in the last ten days one death has received enormous, perhaps unprecedented, attention. The death and funeral of Nelson Mandela have been accompanied by countless pages of newsprint and hours of radio and television coverage. Much has been made of what was, by any account, an extraordinary life. There has been less attention, though, on Mandela’s last months and days. One uncomfortable question has not been asked. Was it ethical for this exceptional individual to receive treatment that would be denied to almost everyone else? Continue reading
The Independent Parliamentary Standards Authority (Ipsa) just proposed a rise of MPs’ annual salary to £74,000, from the current £66,396.
This is a stupid idea. The MPs should be paid a lot more. In the private sector, and even in most NGOs, it’s well understood that if you want to attract high quality workers, you need to pay them higher salaries.
The UK government budget in 2012 was £682 billion. The UK civil service employs 6 million people. There are 650 MPs in total. So a crude estimate is that, on average, each MP controls a budget of over a billion pounds and directs nearly ten thousand people (of which a significant portion are heavily armed). They also vote on regulations that affect the whole country. Only in public service would it seem sensible to pay people with that kind of responsibility, that kind of salary.
Some might feel that increasing MPs salary may reduce their commitment to public service, or cut them off from the concerns of the people they serve. But £66,396 a year already cuts them off from most people, and I haven’t seen any evidence that their current lower salary is causing an irresistible stampede of public minded individuals to swarm parliament.
By Julian Savulescu & Brian D. Earp
Sarah Murnaghan is a 10-year-old from Pennsylvania. Suffering from cystic fibrosis, she was likely to die without a lung transplant. Her situation was deteriorating. But because of a rule that says that children under the age of 12 have the lowest priority for adult donor lungs, Sarah would have to wait for another child’s lungs to become available, a much rarer occurrence.
Sarah’s parents sprang into action. They got the attention of members of congress and the media. They shared Sarah’s story on social networking sites, showing pictures of their daughter in the hospital bed. They said that the “Under 12” rule was discriminatory against children, and got a federal judge to agree. So, with the help of a court order temporarily preventing the enforcement of the Under 12 rule, Sarah got a second chance at life. An adult lung match became available, and Sarah is now recovering from transplant surgery.
It’s a story with a happy ending—depending upon how you tell it. Certainly the news is good for Sarah. Yet as Sarah’s mother acknowledged in a post on Facebook, “We … know our good news is another family’s tragedy.”
But who are those families? What are their stories? What are the names of those who will die—or who have already died—without a lung transplant of their own?
What this case illustrates is something we might call “pushethics” – a way of pushing one’s own story, or that of one’s family member, into the moral spotlight. Since ordinary human beings—from news anchors to congressmen to federal judges—are more likely to feel empathy for known individuals with compelling narratives of suffering, they can become motivated to bend the rules in favor of those specific individuals whose stories best capture their attention.
Sussex police have announced a scheme to fit people suffering from dementia with GPS tracking systems. These small devices will allow police to locate the wearer, and also allow the wearer to reach a 24 hour helpline by pressing a small button on the device. It has been claimed that these devices will save police time and resources, as well as reducing both the potential risk to dementia patients who go missing, and the anxiety that relatives of the missing person will feel when their loved one goes missing.
However, some parties have decried the introduction of this scheme as barbaric and inhumane. For example, Neil Duncan-Jordan, the national officer of the National Pensioners’ Convention, claimed that the scheme serves to stigmatise sufferers of dementia by equating them with people who have committed a criminal act. Continue reading