The French parliament opened a long-awaited debate on euthanasia this week. President Francois Hollande and the prime minister, Manuel Valls, both support liberalising the law at least to allow terminal sedation “to allow people to depart peacefully and without suffering”.
“At a time when our country is debating how to live together, it is unacceptable to open the door to a right to death, which does not come under the law. Far from being the ultimate freedom, the choice of euthanasia assumes the alienation of the individual to his pain. The solution is certainly not to destroy life to eliminate suffering, but rather to seek ways to ease pain and, to the extent reasonably possible, to protect life.”
Should we always blame the journalist for poor science reporting? Perhaps not, according to a recent paper published in the British Medical Journal.
The article, written by a team from Australian and British Universities, found a direct correlation between ‘exaggeration’ in academic press releases and overstatements in popular media.
The stated aim of the study was to examine ‘the association between exaggeration in health related science news and academic press releases’. Researchers analysed over 400 press releases produced by UK Universities, as well as 600 associated news articles, for ‘exaggeration’ (defined as claims going beyond those in the peer reviewed paper).
The researchers found a direct correlation between exaggeration in academic press releases and journalistic exaggeration. The majority of news articles made ‘exaggerations’ when they were based on press releases that gave health advice to readers that didn’t follow from the study; made unjustified ‘causal claims’; or made inferences about humans from studies concerned with other animals.
In contrast, only 10-18% of media reports contained ‘exaggerations’ when based on ‘objective’ press releases.
In an editorial on the study, Dr. Ben Goldacre – a researcher fellow at the London School of Hygiene and Tropical Medicine – suggested that there is a need to achieve more accountability for poorly written scientific press releases. “All academic press releases should have named authors, including both the press officers involved and the individual named academics from the original academic paper.” He also called for press releases to be “treated as a part of the scientific publication, linked to the paper, referenced directly from the academic paper being promoted, and presented through existing infrastructure as online data appendices, in full view of peers.”
The phrase “not completely brain dead”, like “not completely pregnant”, has a Monty Python-esque ring to it. But it is the way the Daily Mail described an alarming organ transplant incident in the German city of Bremen.
Doctors in a hospital in Bremen had already made an incision in the abdomen of a man who was presumed to be dead when they discovered that the deceased donor was still alive according to organ transplant protocols. The operation was immediately terminated – and the brain-damaged patient died. The incident is being investigated by the German Medical Association.
The Süddeutsche Zeitung (the source for the Daily Mail) was told that "it is quite possible that the man's brain was so damaged that he would not have been able to return to a normal life, but as long as he was not properly diagnosed as brain dead, nobody knows."
Hollywood tittle-tattle is not the most reliable source, but, like all tittle-tattle, it’s fascinating. And possibly true. Hollywood Reporter is running a story about “23 Hollywood moms with same sperm donor and one crazy vacation”. Its upshot is that 15 children in and around Hollywood have the same sperm-donor father whom they cannot possibly meet until they are 18, at the earliest.
The article focuses on Sarah Fain, a TV writer-producer for The Shield and The Vampire Diaries. She decided to become a single mother and bought sperm from a clinic. "It's like online dating, only you don't have to have a relationship with the person," she said. "It's not: 'What if this is the love of my life?' It's: 'This person doesn't have Alzheimer's in their genetic history.' "
Later on, when she brought two-year-old Violet to day care, she discovered that at least two of the other children looked remarkably like her. She went to her sperm donor Facebook group and discovered that they were two of the 15 offspring of Mr X.
Now they all have dinner every Sunday. "They're my family," says Fain. In September, the Facebook group rented a vacation house. "Talk about crazy — there were 12 2-year-olds," says Fain, who adds: "It's one of those things that feels incredibly bizarre for half an hour. Then it feels totally normal."
Presumably the 23 moms are 11 lesbian couples and Ms Fain, a single mother.
Gerardo Hernandez and Adriana Pérez before the birth of their child.
Artificial insemination has become part of international diplomacy. Cubans were scandalised when Gerardo Hernandez, a spy who had been in a US jail for 16 years, greeted his very pregnant wife in Havana after he was released as part of a prisoner swap.
Hernandez was arrested in 1998, found guilty, sentenced in 2001 to two life terms and held in a maximum security prison in California where he was not allowed conjugal visits. However, it turns out that the Obama Administration had agreed for Hernandez’s sperm to be shipped to Cuba as part of the negotiations over restoring ties between the two countries. “One of the first things accomplished by this process was this,” Hernández told the media. “I had to do it by ‘remote control’ but everything turned out well.”
Hernandez’s wife, Adriana Pérez, had pleaded that she would not be able to have a family. The deal was brokered by Vermont Senator Patrick Leahy. “The expectation was that this man would die in prison. This was her only chance of having a child,” one of his aides told CNN. Earlier this month Ms Pérez gave birth to a girl.
This PBS video gives an insight into the issues and personalities behind Belgium’s euthanasia regime. It does not take sides (in the view of bioethics blogger Wesley J. Smith, it is “terminally nonjudgmental”), but it does give some idea of the tangled moral issues.
Some viewers might find the optimism of the co-chair of Belgium’s euthanasia commission, Gilles Genicot, questionable. He defends the fact that not one of the 8,000 case of euthanasia has ever been prosecuted. “I can understand it might sound surprising, but the way our law works is– based on– trust we give to doctors,” he says. “Because they know their patients far better than anyone else.” Outside of Belgium, that is often called paternalism.
Three-term New York governor Mario Cuomo was a skilled politician who almost ran for President and almost sat on the Supreme Court. He was an eloquent spokesman for the liberal strain of American politics, defending the little guy and big government. But he also exerted a great influence on US bioethics debates.
On abortion. Although he was proud to be a Catholic, he supported a woman’s right to choose. In 1984 he gave a speech at Notre Dame University in which he argued that a politician who was personally opposed to abortion could, in good conscience, vote for a law which permitted it. “Approval or rejection of legal restrictions on abortion should not be the exclusive litmus test of Catholic loyalty,” Cuomo stated in his address at Notre Dame. “We should understand that whether abortion is outlawed or not, our work has barely begun: the work of creating a society where the right to life doesn’t end at the moment of birth; where an infant isn’t helped into a world that doesn’t care if it’s fed properly, housed decently, educated adequately.”
On the death penalty. He was a resolute opponent of capital punishment, a stand which nearly cost him the governorship.
On end-of-life issues. In 1985 Cuomo set up the New York state biomedical Task Force on Life and the Law, 23 experts who assist the State in developing public policy on issues arising at the interface of medicine, law, and ethics. Its reports have been cited in a number of important federal and state court decisions. One report eventually established irreversible brain stem damage as the criterion for death. It also opposed the legalisation of euthanasia.
“No matter how carefully any guidelines are framed, assisted suicide and euthanasia will be practiced through the prism of social inequality and bias that characterizes the delivery of services in all segments of our society, including health care. The practices will pose the greatest risks to those who are poor, elderly, members of a minority group, or without access to good medical care. The growing concern about health care costs increases the risks presented by legalizing assisted suicide and euthanasia. This cost consciousness will not be diminished, and may well be exacerbated, by health care reform.”
The state of Connecticut is forcing a 17-year-old to undergo chemotherapy to treat her Hodgkins lymphoma. Officials say that this is the only way to save her life; she and her mother contend that the treatment is vile and intrusive. In October after much argument, police and the Department of Children and Families, removed her from her mother’s care and placed her with a foster family. She returned home in November after promising to undergo chemotherapy, but after two days of treatment, she ran away and disappeared for a week. In December she was strapped to a bed, sedated and given chemotherapy.
Cassandra felt violated, she wrote in the Hartford Courant: “I want the right to make my medical decisions. It's disgusting that I'm fighting for a right that I and anyone in my situation should already have. This is my life and my body, not DCF's and not the state's. I am a human — I should be able to decide if I do or don't want chemotherapy. Whether I live 17 years or 100 years should not be anyone's choice but mine. How long is a person actually supposed to live, and why? Who determines that? I care about the quality of my life, not just the quantity.”
The case has been reported across the US. The DCF says that it had no choice. “When experts — such as the several physicians involved in this case — tell us with certainty that a child will die as a result of leaving a decision up to a parent,” the statement said, “then the Department has a responsibility to take action.”
Bioethicist Arthur Caplan supported the officials. “Respecting choice is important. Not burying a young teenage girl who would have lived is far more important,” he wrote in a column.
Cassandra and her mother, Jackie Fortin, wanted the state supreme court to recognise the “mature minor” doctrine, because she is nearly 18, the age when she could legally refuse consent. However, the court was not impressed by her week in hiding.
The Belgian justice minister has refused to allow convicted rapist Frank Van den Bleeken to undergo euthanasia. The 52-year-old convict is serving a life sentence for one murder and several rapes committed in the 1980s. He says that he cannot control his sexual impulses and that life in prison is such a torment that he would prefer to be dead. "I'm in my cell 24 hours a day. That's my life. I don't feel human here. What do I have to do? Do I have to sit here and waste away? What's the point in that?" he told a television journalist in 2013.
In fact, euthanasia was not his first choice for his future. He first applied to be treated at a specialist unit for sex offenders in The Netherlands. However that meant going to a foreign country and the Belgian government refused. This left Mr Van den Bleeken with euthanasia as his only way out, at least in his opinion. La Ligue des droits de l'Homme (the Belgian League of Human Rights) described the government’s indifference as barbaric.
About 15 other Belgian prisoners have also applied for euthanasia.
Mr Van den Bleeken was scheduled to die on Sunday, January 11. However, this week the justice minister, Koen Geens, capitulated to pressure from human rights groups and declared that he would allow the prisoner to be moved to the Netherlands. Thereupon the Belgian doctor who had agreed to carry out the euthanasia procedure withdrew for “confidential personal reasons”.
Mr Van Den Bleeken’s lawyer, Jos Vander Velpen, says that his client was shocked by the news. "He's upset because that he was prepared for euthanasia on Sunday. He had said goodbye to everyone, the funeral was organised, the memorial cards were written up. But in the end it is always the physician who must decide in all conscience. His freedom of conscience must be respected," he said.
The justice minister has also responded to criticism of Belgium’s treatment of mentally ill prisoners. He announced that the government will set up its own specialist unit.