rights
Justice, rights, entitlement
The latest casualty of the coronavirus lockdown in this country is fertility care. As of Wednesday of this week, no new patients will be accepted, and even those in mid-treatment, those for whom this is their last hope, those who will be too old to qualify or stand a chance of success by the end of lockdown, will not now receive the necessary procedures towards which they’ve been working for so long. Yet another tragedy. More heartbreak. More hopelessness.
Which brings my thoughts to the ethical issues around assisted conception …
It’s now fifteen years since I wrote Double Trouble, a book about surrogate pregnancy. Fifteen years! Yoiks. But as with so many ethical dilemmas in medicine, the issues are still relevant today.
I was fascinated then, to watch the serialised BBC1 drama, The Nest, which finished this week, about a very wealthy but childless couple, Glasgow property tycoon Dan and his beautiful pampered wife Emily, who decide to go down this route. Click on the picture for the official trailer.
All attempts at IVF have proved unsuccessful. Dan’s sister has already tried to carry a baby for them but miscarried. They have one precious embryo left. One. Only one more chance. Emily meets the troubled teenage Kaya when she accidentally knocks into her in her car. Kaya sees an opportunity to get out of her impoverished life, and offers to be a surrogate for them in return for £50K. But as the story unravels we find that Kaya has secrets in her past and a very dubious pedigree indeed …; the would-be father Dan is something of a rough diamond too, dealing with a lot of shady characters and skullduggery …; Emily is single-minded about motherhood and what she wants, but privately troubled by the morality of what they are doing – always setting herself up as ‘the principled one‘ according to her sister-in-law. No-one in the UK will implant the last embryo. However, the Dochertys can well afford to go abroad for the simple procedure, and they do so.
On the face of it everyone stands to win. Kaya will be set on her dreamed-of pathway to becoming a successful business woman, able to ‘go on a plane, have one of these pull-along cases‘. The wealthy couple get their hearts’ desire. Better yet, surrogate and intended parents establish a relationship, even friendship. Kaya moves in with the Dochertys and gets a taste of a life of privilege. The baby will not only be much wanted, but will have every advantage money can buy.
Naturally – this is, after all, fiction, drama, a series requiring cliff hangers – things go pear-shaped. Relationships get confused. Loyalties are divided. Dubious and unsavoury motives emerge. But the underlying questions and challenges remain pertinent.
Is parenthood a right?
Is ‘want’ the same as ‘need’ in childbirth terms?
Payment for this service in the UK is forbidden. Should it be?
How binding should a contract between intending parents and surrogate be?
Should private arrangements for surrogacy be permitted?
Does a woman have the right to do whatever she likes with her own body?
What constitutes ‘reasonable expenses’?
Should those with the wherewithal be allowed to circumvent ethical and medical guidelines?
Does using someone far less powerful in this way constitute exploitation?
In the event of a dispute about whose baby it is, whose rights should take precedence, and who should decide?
What if the child is damaged/imperfect/not what was expected? Should the contract still stand? Who should accept responsibility for him/her?
What of the baby’s rights?
How much of its origins should a child be told?
Back to the drama … enter Kaya’s long-estranged mother, who encourages her to renege on the contract, hang on to the baby, become a mother herself, a better mother than she has been. But Dan already loves this child. Even when he finds out she is not his genetically, she’s still his daughter in his heart. The Dochertys call in their lawyer; the case goes to court. It’s left to the judge in the Family Court to put things into perspective – severely castigating their self-serving recklessness, the complete imbalance of power, the undesirable qualities on both sides. But, she says, at the end of the day it’s not a question of how she would judge them; it’s about what is in the baby’s best interests.
Contrary to expectation, there is a happy ending to this story, and both sides demonstrate they’ve learned important lessons about what matters in life. But the drama perfectly illustrates the power of fiction to challenge us to think about what society today should endorse, and how far the law can go in dealing with the fine nuances of moral questions in assisted reproduction. Well done, screenwriter Nicole Taylor.
Splinter the Silence
In Splinter the Silence, Val McDermid explores the issue of internet trolling/hate mail/harassment/villification/abuse of women who put their heads above the parapet to speak about discrimination and injustice. In this fictional case, the public figures are apparently hounded to the point of suicide, although the reader knows from the outset that they are actually being murdered, each killing disguised to mimic the suicides of famous feminists. The murderer has his own reasons for objecting to women who step outside their domestic role and tell men what’s right or wrong.
Well, sadly, I know people in real life who would still tether women to the kitchen sink if they could. I have myself come in for criticism for being a woman and daring to voice and defend an opinion; for having ideas above my subservient station. Fortunately, positive responses have far, far outweighed the negative, so it hasn’t been that difficult to maintain perspective, but then, I’m not an A-list celebrity, so such pernicious or malicious activities don’t hit the headlines, the number of critics doesn’t reach stratospheric levels. Nevertheless, I can vouch for the discomfort of being on the receiving end of such unjust vitriol. It’s not as far fetched as you might imagine.
This week I’ve been thinking a lot about the matter of standing up and being accountable, and about all the cases coming to public attention right now that lend themselves to strong column inches. I’ll itemise a few, but please note, I have no privileged access to information on any of them, so the facts I include are as subject to distortion and prejudice as any other media-generated stories.
OK, serious time, folks. And in every case multiply the questions many times over.
Ten days after legally completing his transition from female to male, a transgender man, TT, underwent intrauterine insemination, resulting in a pregnancy. He has now taken his case to the High Court in an effort to be the first to have no ‘mother’ registered on the birth certificate. Hello? ‘Cake’ and ‘eat’ instantly spring to mind. Expensive legal and parliamentary resources are to be deployed to look into the ramifications of the current laws governing fertility treatment.
One British doctor is reported as saying, now that it is medically possible to transplant a womb into biological males, it would be illegal to deny them access to this opportunity to carry a child to birth. What do you think? Would it?
What about the rights of the unborn child?
One author of a letter to the Telegraph outlined the scenario and concluded, ‘The lunatics truly have taken over the asylum.‘ Do you agree? Or is this a case of establishing the deep-seated needs of people who have struggled all their lives with their dysphoria?
Then there’s the issue of rights and dignity and bodily integrity and mental welfare of female athletes with naturally high testosterone levels? Renewed calls have been made for such women to be given drugs to lower their levels before they compete, or for them to be channelled into other categories such as intersex competition.
What about the effect on these sportswomen of the abuse and accusations levelled at them?
Is it a fair playing field?
Other scientists have cast serious doubt on the integrity of the research behind this latest demand; how many people either know of this or have the scientific or mental wherewithal to judge the issue fairly?
Exactly four years ago, on their half-term break, Shamima Begum and two school friends fled this country, aged only 15, to join Isil and become jihadi brides. In those years, Begum has borne three children, two of whom died of illness and malnourishment. She has told the world she doesn’t regret her actions, that she was unfazed by the sight of severed heads, that’s she’s into retaliation, but wants to bring baby number three back to her home country.
We have no way of knowing just how much coercion lies behind her public pronouncements, but her responses to interviewers chill the blood. The government have refused to jeopardise more lives by sending anyone to rescue her, but at first the lawyers told us, she’s a British citizen, she cannot be rendered stateless, so legally speaking, there is no choice; we must have her back. Then a couple of days later we hear that no, the government are not obliged to repatriate her … and indeed the Home Secretary has revoked her British citizenship … she has dual Bangladeshi nationality … the baby has a Dutch father …
What consequences should this girl’s actions have?
Whose rights take precedence?
What kind of a future lies in front of her or her baby son?
Who should assume responsibility?
Is it a measure of our own more civilised behaviour that we rise above the terrorists’ creed and show compassion now towards this girl?
What of all the other people who’ve dabbled in terrorism but who now want to return?And a zillion other questions.
No wonder opinion is divided.
Retired accountant, 80-year-old Geoff Whaley, diagnosed with MND two years ago, decided that an agonising and undignified death was not for him; he would go to Dignitas in Switzerland for a controlled end to his life. But his careful planning was threatened days before his proposed departure by the appearance of police at his door, interviewing his wife of 52 years under caution, in response to an anonymous tip-off. It was this unwelcome intrusion, coupled with the laws of this country opposing assisted suicide, not his impending suicide, that engendered fear and anguish in this man, provoking him to protest to the BBC and MPs:
‘The law in this country robbed me of control over my death. It forced me to seek solace in Switzerland. Then it sought to punish those attempting to help me get there. The hypocrisy and cruelty of this is astounding.’
Put aside for a moment your personal views on assisted dying, and ask, what could possibly have motivated someone to blow the whistle in this way at the Whaley’s eleventh hour? Genuine concern, self-righteousness, extreme religious views, a sense of public duty, malice? Or what?
Should other people’s private scruples be allowed to control the rights of families in such tragic circumstances?
Imagine being born in war-ravaged Yemen, stranded in a hospital in a country where social, political, economic and health care systems have all collapsed, where about half of the 28 million inhabitants are living on the brink of famine. Now add to that the babies being conjoined twins. Their picture appeared in the British press; the Yemeni doctors appealing for help from the UN to get them to Saudi Arabia.
What should our response be?
What is our responsibility in such cases?
What chance did they realistically have?
At least 6,800 civilians have been killed and 10,700 injured in the war, according to UN statistics. Did these two extremely vulnerable boys warrant such an exceptional rescue mission?
In the event they died in their homeland, but the questions remain.
I could go on … and on …
All the youngsters who become victims of disturbing material on line … the BBC being criticised for not offering abortion advice after an episode of Call the Midwife featuring a backstreet abortion … impecunious students being paid to contract dangerous tropical diseases like typhoid and malaria in the search for new effective vaccines … the matter of a 97-year-old Duke of Edinburgh flouting the country’s law on the wearing of seatbelts …
I have opinions on all these issues. You don’t have to listen to me. You are perfectly entitled to disagree with me – fundamentally and even vociferously. But you ought not to shut me up! Especially not in a threatening or damaging way.
Somewhere in the deep recesses
It keeps cropping up, year after year, doesn’t it? – the banning of objects or activities or statements, lest certain people take offence.
‘Offensive’ includes, not just way-out books and films, but long-standing statues of the Virgin Mary/Jesus Christ/nativity scene, classics like To Kill a Mocking Bird/The Adventures of Huckleberry Finn, Hallowe’en, scarves, crosses, prayers, peaceable religious folk who refuse to compromise on their principles … the list goes on.
I’ve seen the hurtful effects of narrow, rigid intolerance up close, and it’s not a pretty sight. Nor is it edifying to anyone. For me it boils down to arrogance: I’m right; full stop. Ergo, everyone else who holds a different opinion is wrong. Hello? By whose divine decree? Never mind ‘your’ rights, what about those whose rights you’re denying?
There’s far too much talk of rights nowadays, in my opinion. Wow! Only last week we heard that frozen embryos are suing their mother, actress Sofia Vergara, (who?) for the right to life! They’ve even been given names – Emma and Isabella … don’t get me started!
But seriously, in the humdrum everyday world, with rights come responsibilities. And our planet would be a kinder place if everyone tried to put themselves into other people’s shoes, esteeming them as better than themselves. And adopted the ‘Judge no man till you’ve walked a mile in his moccasins‘ principle.
Why am I writing about this on a blog about ethics and books? Well, of course, kindness and justice and rights and interests and conscience all play a part in deciding what’s good and right. But something more specifically triggered these ruminations. Let me explain.
I spend a lot of time listening. And over the years I’ve become increasingly aware of older people confiding that they’ve secretly had doubts about many things they were once sure about, but they haven’t liked to voice them for fear of being reprimanded/corrected or of upsetting others. And as the day of death approaches, they can be much exercised by the consequences of their wavering beliefs. What a damning indictment of the rest of us. How have we managed to create a society that means these vulnerable fellow-citizens must worry alone and afraid? And let’s not lose sight of the fact that, when you live alone, largely inactive, with few distractions, such misgivings can assume quite overwhelming dimensions.
Anyway, a couple of weeks ago I had an absolutely amazing conversation with a wonderful elderly lady with advancing dementia. Quite how we got onto the subject I can’t now remember – we roam from topic to topic as the mood takes us – but suddenly she was talking about assisted dying. She had a personal and an intellectual stake in the subject, but had never before talked about it (or so she alleged). Why? Because most people ‘wouldn’t be interested’ in her views, and those who would ‘might not approve’ of her position. We had a brilliant hour and a half together and I’ve seldom left a discussion on this subject more exhilarated. Deep inside this ageing brain, parts of which are definitely scrambling, was a coherent and thoughtful mind that could still argue a logical case and hold a defensible personal viewpoint. My respect and admiration for her is immense. And how sad that a beautiful intellect like that is being slowly but inexorably diminished by this disease. I am doubly resolved to keep her sparking on as many cylinders as possible for as long as it’s feasible.
Oh, and speaking of approaching death … did you know that researchers have found evidence that creative people worry less about mortality because their artistic works will live on after their demise – a kind of existential security. Well, that’s the conclusion drawn from the findings of the people at the University of Kent, reporting in the Journal of Creative Behavior, anyway. Hmmm. We’ve lost a large number of iconic figures this year, haven’t we? Were David Bowie or Leonard Cohen or Victoria Wood or Carla Lane or Ronnie Corbett comforted by the lasting cultural legacy they were going to leave behind? Did it motivate them to keep creating? Rumours abound of highly creative people being riddled with angst, frequently depressed, constantly worrying whether their next work will be a success, whether they are still up to snuff. But, hang on a minute … the Kent study wasn’t done with celebrity figures; it tested psychology students more or less inclined to creativity. So, is it a matter of degree then? OK, I’ll need to think on it. Maybe I’ll talk to my clever friend about it while I still can.
Locked in to a fate worse than death
Tony Nicklinson is 58. He’s paralysed from the neck down, can’t speak, and his only means of communication is by moving his eyes on a screen linked to a special computer. And yet his brain is so alive and intelligent that he can hold his own in arguments with twitters and QCs alike.
Prior to the stroke, Mr Nicklinson was a handsome, successful, fun-loving man, keen on extreme sports. He was in Greece on a business trip, when he suffered a catastrophic stroke in 2005. Now he is in a locked-in state, dependent on carers for his every need, with no hope of recovery. He considers his life as ‘miserable, demeaning and undignified‘. He ‘has no privacy or dignity left‘, and he rates it a state worse than death. He’s held that view since 2007; it’s no passing whim. It’s what’s described as a ‘voluntary, clear, settled and informed wish’ in legal parlance. Watching him on The Channel 4 documentary, Let Our Dad Die, surely no one could help but sympathise with his viewpoint. Even the Greek doctor who saved his life is appalled by the consequences of his actions, although no blame attaches to him.
In March Mr Nicklinson won the right to have his case heard by the High Court. The hearing took place last week (starting 19 June). There was considerable media interest in the run up to it. Lord Falconer visited the family at home. BBC’s Fergus Walsh went to see for himself what kind of a life a locked-in patient has. Channel 4 aired its documentary. Though he could communicate with these people in his own home, Mr Nicklinson was unable to attend the hearing in person, so he stated his arguments through emails and lawyers.
His case? Simply put, he is incapable of taking his own life, so he wants the judges to rule that, when he decides he wants to die, a doctor will be immune from prosecution if he/she helps him. Mr Nicklinson fully realises that the law as it stands prohibits anyone else taking his life; that would be murder. His defence rests on the view that he is being discriminated against, because of his disability. He is looking for assistance to do what he would do for himself were he able. Furthermore he adds poignantly, why should other people be allowed to condemn him to a life of increasing misery?
His barrister described it in more ponderous legal terms: ‘a serious interference of his common law and Convention rights of autonomy and dignity’.
It’s important to note that Mr Nicklinson is not seeking a change in the law. He is seeking two declarations from the court.
1. That in the circumstances of his case – and where an order has been sought from the court in advance – ‘the common law defence of necessity would be available to a doctor who, acting out of his professional and human duty, assisted him to die‘.
2. That the current law of assisted suicide and euthanasia is incompatible with his Article 8 rights of autonomy and dignity .
The QC acting for this family argues that a prior sanction by a court ‘would provide the strongest possible safeguard against abuse’. And furthermore ‘it would also provide a safeguard against the concern, often expressed by disabled opponents of legalisation, that a change in the law would lead to a change in people’s attitudes to disabled people, who they predict would come under subtle pressure to seek an assisted death through fear of being a “burden”.’
But any loosening of the limits frightens the legal fraternity. Speaking directly to Mr Nicklinson, Lord Falconer made it perfectly clear that in his judgement, modifying the law to accommodate such an act would be ‘crossing the Rubicon’. He was himself sympathetic to assisted suicide in cases of terrible disability with no prospect of improvement, where the patient expressed a sustained wish to put an end to their misery, but ending someone else’s life is murder and that must always be unacceptable.
Pause here for a moment and ask yourself: What answer would I give to Tony Nicklinson?
Watching the documentary I wanted to weep with this man. His chagrin, his pain, were palpable. But there again, as Christina Petterson put it in The Independent,
‘… the law isn’t about how we feel. The law isn’t about how you feel if you were once healthy and fit and happy, and now aren’t. The law, as Lord Falconer said on that Dispatches, is the same for everybody. “If people want to kill themselves,” he said, it’s an “entirely private matter”, but “they can’t kill somebody else”. The law, as the disability rights campaigner Kevin Fitzpatrick also said on the programme, is meant to offer protection. “When you develop a society where some people judge that other people’s lives are not worth living,” he said, “that’s the Rubicon.”‘
There can be no happy ending for the Nicklinsons, neither Tony, nor his wife, nor his daughters. But each time a tragic case like this comes to court, and I watch the family being forced to parade their lives in front of others, to expend dwindling energy on fighting their cause, I feel there has to be an alternative.
I can, of course, see the dangers inherent in a change to the law against taking life. The consequences could be inconceivably horrible. I accept too that these extreme cases make bad laws. But the fact remains, that these exceptional circumstances do present from time to time. And they seem to cry out for special judgements.
Would it be so terrible to openly acknowledge this fact, and to relieve these families of the necessity of taking their cases to the courts? Why not constitute a sort of Ombudscommittee – a gathering of carefully selected, experienced and wise folk, representing law, medicine, religion, ethics, patients – who could quietly, rationally, compassionately, debate the very few cases which fall into this terrible legal limbo, taking guidance from others as and when they need it? Not in such a way as to drive the debate underground, not to sweep the anomalies under the carpet, but to take individual cases away from the heat and distortion of media coverage, protecting and supporting those for whom this dilemma is a lived reality not a theoretical argument.
I haven’t ever seen this idea promoted, and it’s the first time I’ve aired my own view on this. So what do you think? Would you be in favour? Or can you see some glaring reason why this would not be an acceptable way forward?
What would your solution be?