Earlier today, the parents of terminally ill baby Charlie Gard ended their legal challenge for him to be taken to the US for experimental treatment.
His mother, Connie Yates, said that “to let our beautiful little Charlie go” is “the hardest thing we’ll ever have to do”.
Professor Julian Savulescu is director of the Oxford Uehiro Centre for Practical Ethics. He explores about the ethical lessons we can take from this tragic tale:
"At some point in all of our lives, we have to let go. One can only admire Connie Yates and Chris Gard who fought so hard for Charlie.
However, we should continue to question the original decision, and the way in which these decisions are made. Even if it is too late for Charlie now, we should improve how we make these decisions for the future.
Back in January, there was an option for a trial of treatment that had some chance of success, a world leading doctor willing and able to provide it, and, by April, the funds had been raised to achieve it without public funds.
There were also the means to control and minimise Charlie's suffering. I believe that a limited trial of treatment was in Charlie’s interests back then, given the only alternative for him was death.
Doctors opposed this because of the low chance of success combined with fears that the extra time in life support would be too painful.
Four months of the legal process has left us with no trial of treatment, and no chance now for Charlie. Yet Charlie had to go through all the suffering (and more) of being kept alive on life support.
No-one wanted this outcome. No-one believes this outcome was in Charlie’s best interests. There has got to be a better process. It has been traumatic for all the doctors, who have genuinely had Charlie's interests at heart, and Connie and Chris, but most of all Charlie.
It has also raised other issues.
Charlie would have been the first to receive this treatment and some have said it risked Charlie being used as a guinea pig. Medicine won't progress without experiment and innovation.
Over the years processes have been developed to protect patients and ensure the best scientific results. Double blind placebo controlled trials are the gold standard. I have argued that, for rare and deadly diseases with no existing therapies, it is in the patient's interests to access potential treatments earlier and without placebo, provided they have a reasonable scientific basis.
There is little to lose and much to gain for this group of patients, and the protections that are in place can cause more harm than good for them.
A second issue is that social media has given power to the people. Over the five court hearings, Trump and the Pope, and thousands of others have weighed in. We have had to have these discussions about how and who should decide on what makes life worth living and what kinds of chances are worth taking.
The question of who should decide is legitimate. Some people have wrongly concluded that these decisions should only be up to parents, but at the same time it is right that doctors, scientific experts and the Courts should not be considered almighty, beyond question or account.
How much should the decision–making be left to parents? While most parents want to do the best for their children, parents can abuse their children, or can be radically mistaken. We do need oversight to ensure children are protected.
If Connie Yates and Chris Gard had requested ongoing intensive care for a herbal treatment with zero scientific evidence or rationale, that would be abuse. But they weren't. They were asking for a treatment with a clear scientific rationale and some relevant evidence, with the support of a relevantly qualified medical expert.
There have to be protections. But doctors should not activate these legal mechanisms, or stop parents travelling for medical care for their child, unless there is disagreement between the parents, or they are going to an unsafe place, or they are very confident the parents' choice is unreasonable.
That requires doctors to think ethically, as well as having all the scientific evidence. The problem is not who has the power, it is how it is used and the need for robust, and humble, ethical deliberation.
Some have seen this as a further attack on ‘experts’, a current hot topic. But this case was more about disputed values than disputed facts. What has been absent, and is absent from society, is a sound secular ethical approach to these life and death issues.
I haven't seen any substantial ethical discussion of the deep ethical issues in this case like what makes a life worth living or what kinds of chance are worth taking.
Debate has been shut down in monosyllabic ethical argument: treatment is futile or it is not futile. And we have again closed our eyes to the elephant in the room: resources and justice. The NHS may not be able to afford such experimental treatments for everyone who needs them.
We should have had a debate about resources and justice. These are difficult questions but ones that must be addressed openly. It goes beyond accepting the expertise of someone else.
This has been a clash of medicine, science, politics, ethics and religion. Yes, there is always a clash of values because many people hold different values and weigh facts differently. What matters is that people's values are reasonable and they don't seek to impose them on others, or other families.
It would have been very reasonable for Charlie's parents to choose to withdraw treatment; it was also very reasonable to choose a small chance of some improvement. I wouldn't choose experimental treatment if I were Charlie's parents but that does not mean they are wrong or unreasonable to do so.
We need a bit of humility about our moral views about the good life, and about how and when to live. In Charlie's case, his parents have been accused of prioritising their own interests over Charlie's in choosing to take their child for experimental treatment that might give him a chance to live.
The courts have intervened and stopped them. However it is a reasonable view of Charlie’s interests that his parents held. I hope that there will be a review of the basis of these decisions, and how they are decided in the light of this case."
The 200th anniversary of the death of Jane Austen has been marked by her face being put on the new £10 note.
But fewer people know that another prominent writer died in July 1817 – Germaine de Staël, who was arguably the most famous woman in Europe at the time.
Catriona Seth, Oxford University’s Marshal Foch Professor of French Literature, looks at the contrasting lives of the two women:
'Germaine de Staël travelled widely and her work had been translated into several languages. She was the only daughter of wealthy Swiss banker Jacques Necker, who became finance minister to Louis XVI, and was brought up in the stimulating environment of Parisian society.
She published major treatises on the influence of passions on individuals and nations, on literature and its relationship to society, not to mention on Germany (1813). She wrote on Marie Antoinette’s trial, on peace, on translation, on suicide.
Her novels Delphine (1802) and Corinne or Italy (1807) were bestsellers throughout Europe. She was also a commentator on, and historian of, the French Revolution in texts which only appeared after her death. Most periodicals felt that anything she penned, fact or fiction, political or philosophical, was worthy of a mention – whether to praise or to condemn it.
Unlike Staël’s father, George Austen encouraged his daughter Jane’s literary pursuits: he bought her notebooks for her early stories, gave her a mahogany writing desk and attempted (unsuccessfully) to get her work into print in 1797.
Jane Austen’s first published book, Sense and Sensibility, “a new novel by a lady”, which came out in 1811, bore no author’s name on its title page.
The same would go for the other novels published in her lifetime – all sold well and brought a welcome income but, to the outsider, nothing could connect them with the discreet woman who, through her richer brother’s generosity, lived with her mother and sister in a cottage on his estate.
Staël’s death in Paris was widely reported. The Monthly Magazine, before commenting at length on the funeral arrangements, opened a “Further Notice of Madame de Staël” with the following assertion:
To speak of the literary celebrity of Madame de Staël, of the elevated talent which distinguished her, of all the talent which placed her among the first writers of the age, would be to speak of all things known to all France and to all Europe … To speak of her generous opinions, her love for liberty, her confidence in the powers of intelligences and of morality, confidence which honours the soul which experiences it, would be, perhaps, in the midst of still agitated parties, to provoke ill-disposed impressions.
Staël had been reviled for her political ideas, caricatured by the gutter press for her unconventional looks and lifestyle, exiled by several regimes, and treated by Napoleon as a personal enemy, to the extent that it was said that the emperor recognised three powers in Europe: England, Russia and Madame de Staël.
When the unmarried “Miss Jane Austen” died in Winchester four days after Staël, the announcement her family (probably) wrote recalled she was the daughter of a clergyman and acknowledged that she was the author of Emma, Mansfield Park, Pride and Prejudice and Sense and Sensibility. It added:
Her manners were most gentle, her affections ardent, her candour was not to be surpassed, and she lived and died as became a humble Christian.
To this day, in the only authenticated portrait of her – a sketch by her sister Cassandra – she looks the part in her simple cap and dress, so unlike Staël’s flamboyant turban and scarlet gown.
More than “Miss Austen”, she is “Jane Austen”, someone to whom we feel we can relate. Her admirers, readers but also cinephiles who have enjoyed the adaptations, come from all the corners of the earth, are known as “Janeites”.
Many of Staël’s works have long been out of print or available only in pricey scholarly editions. She is recognised as one of the forerunners of 19th-century liberalism but does not have the common appeal and widespread recognition that time has brought to Austen.
The seeds for the “fickle fortunes” – to borrow the title of the current exhibition at Chawton House (the “Great House” lived in by her brother Edward Austen-Knight which is now home to a library of early women’s writing) – of the international literary superstardom of Austen and the waning of Staël’s fame are partly present in these obituaries.
Austen’s family cleverly crafted a reputation for demureness and devotion to both God and family as a way of deflecting from the sometimes ambiguous contemporary attitude towards women authors.
Her life was presented as quintessentially English and uneventful and her character as modest and self-effacing – in many ways the opposite of Staël’s.
In a late addition to his biographical sketch about his sister, 15 years after the death of both women, Henry Austen claimed that when invited to a party Staël was due to attend, Austen “immediately declined”.
This probably imaginary anecdote illustrates an essential reason for Austen’s success: yes, she is a great writer, but so too is Staël. Austen’s existence threatened nobody.
Staël’s championing of republican ideals, consideration of the role of emotion in politics and use of fiction to promote geopolitical and societal reflections meant her life could be discussed and her works forgotten.
Considering them jointly can help us question what shapes our canon of great writers.'
Oxford Dictionaries had a surprising new entry in its most-viewed definitions pages yesterday: the word 'deuce'.
Clearly, fans watching Rafael Nadal’s marathon five-hour defeat to Gilles Muller decided to research the origin of this peculiar scoring term to calm their nerves.
The language of sport interests Oxford academics, too.
Professor Simon Horobin, of the Faculty of English Language and Literature at Oxford University, says that it comes to us from a huge variety of sources.
For instance, the rugby terms “ruck”, “maul” and “scrum” come to us, respectively, from a Scandinavian word for “haystack”, a Latin word for “hammer”, and as a modified version of the military term “skirmish”.
He says the word “tennis” itself is said to derive from medieval France, where the game first developed. Players shouted “tenez!” (“take that!”) as they hit the ball.
For those of you who turn off your TV at the sight of tennis, the meaning of ‘deuce’ is here.
Politics, elections, Donald Trump, and Pokémon GO are just some of the events, people, and subjects that influence British children’s creativity and use of language, says a report published today by Oxford University Press (OUP).
Following OUP's analysis of the 131,798 fabulously inventive, funny and politically astute short stories for the 2017 BBC Radio 2 Chris Evans’ Breakfast Show’s 500 Words competition, a wealth of fascinating insights into the lives of British children and their imaginative use of English have emerged.
The Children’s Word of the Year is trump, picked because of its significant increase in use (a total rise of 839 per cent on 2016) by entrants writing in this year’s competition and the sophisticated way in which children used it to convey humour and satire, and evoke powerful descriptive imagery.
Every year children show a keen interest in contemporary affairs and world events from sinkholes and the London Olympics to the Ebola crisis, refugees and Tim Peake’s spacewalk. This year, Donald Trump took office as President of the United States in the same week that 500 Words launched.
Trump is mentioned in a wide variety of contexts, from the US elections and politics, to tales of space, aliens, and superheroes, giving expression to children’s creativity, playfulness, and humour. Children also use the noun to invent new character names including Boggle Trump and Snozzle Trump.
Vocabulary associated with the US presidency was far more prevalent in 2017 than in 2016, including president, America, wall, Hillary Clinton, White House, Trump Towers, Obama, Mexico and Putin. Displaying an ear for Trump’s particular use of words and catch phrases, one entry stood out for its ability to brilliantly capture the rhythm of his speech. In Donald J Trump Goes to the Moon, a 12-year old girl wrote: “10... 9...8 ‘my hair is so amazing’...7. ‘And real’. 6... 5 ‘I am going to make the moon great again!’. 3... 2...1 blast off!!”
Political vocabulary is a notable area of growth in 2017, showing children’s engagement with the news and media. The words politics and political show an increase of 115 per cent and 78 per cent respectively since last year, and an analysis of a cluster of around 30 words relating to contemporary politics (for example president, vote, election, campaign) shows a 58 per cent increase in frequency since 2016. New words and phrases in this year’s stories include Brexit, Article 50, fake news, and alternative facts.
Vineeta Gupta, Head of Children’s Dictionaries at Oxford University Press, says: 'This year, the stories demonstrate creativity, style and wit, all underpinned by a sophisticated use of grammar and language. From humorous punning to creating their own words, children have played and experimented with language with impressive results. The stories have not only provided us with infinite entertainment, but also contributed to language research for children’s dictionaries. As well as this, 500 Words has led to academic research at Oxford University which will support teachers and schools.'
Chris Evans, presenter of BBC Radio 2's Breakfast Show, said: 'The OUP’s research is always such a fascinating insight into the minds of children today. This year’s analysis reveals just how tuned in they are to what’s going on in the world. It’s so inspiring to see how they use language so creatively, having fun with words, using humour and bringing them to life through their wonderfully unconstrained imaginations.'
500 Words is the BBC Radio 2 Breakfast Show’s short story writing competition for children aged 5-13, launched by Chris Evans back in 2011. Earlier this year, children were invited to compose an original work of fiction, using no more than 500 words.
OUP analysed the entries using its Oxford Children’s Corpus—a large electronic database of real and authentic children’s language—the only one of its kind in the world. It contains language written for children (54 million words) and also language written by children (284 million words).
Oxford academics give lectures all around the world – but this must be a first.
Dr Anders Sandberg, Senior Research Fellow at the Future of Humanity Institute in the University’s Philosophy Faculty, gave a lecture over Skype from Terminal 5 of Heathrow Airport recently.
He had intended to give the lecture in Madrid, but his flight was one of many to be delayed by a computer bug which struck British Airways during the last Bank Holiday.
When it became clear he was not going to make it to Spain, Dr Sandberg took it in his stride. ‘My dad worked for a Scandinavian airline and so when I was younger my time was spent waiting at airports,’ he said.
‘So I took a quite phlegmatic approach to it. It was probably the first time anybody has given a lecture at a departure gate. Maybe we should have them more often.’
Dr Sandberg’s lecture was titled ‘Reviewing the methods of slowing ageing’. No doubt his audience in Madrid were hooked by the content, but his fellow passengers were baffled.
‘People were wondering what was going on when I started talking about stem cells and ageing,’ he said. 'It must have looked quite weird.’
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