surrogate pregnancy
Surrogacy
It’s now sixteen years since my novel about surrogate pregnancy, Double Trouble, was published. Sixteen years!! But the issues are still swirling around. 
Surrogacy is banned in most countries in Europe, but it’s perfectly legal and permissible in the UK, provided the surrogate gives the service free of charge. She may ask for expenses, but not money for carrying the child. Seems there are an astonishing number of Apps and agencies linking surrogates with intended parents, underlining the frequency with which these arrangements are made. Who knew?
So hats off to the BBC who’ve produced a three episode series, The Surrogates, following five surrogacy arrangements in this country. Infertile, homosexual and single people, desperate to be parents, take this route to fulfil their dearest dreams, some using their own genetic material, some employing donor gametes. Young fertile mothers put themselves forward to carry babies for them, and they are the ones in the driving seat when it comes to choosing the intending parents with whom to form a working team. Social events, as well as online links, enable both parties to introduce themselves to each other, and establish rapport and relationships.
We were given the merest glimpse into the complex array of questions about the process and potential issues, however. Things like,
How many times are you prepared to try with this person?
What would you do if the child has disabilities?
Do you, the surrogate, want to have a continuing relationship with the child?
How do you feel about giving up the baby to a relative stranger?
What would happen if you, the surrogate, change your mind about handing the baby over?
How does your (the surrogate’s) partner/spouse feel about everything?
How intimately is the intended father to be involved in the actual processes of fertilisation, pregnancy and birth?
And so much more.
Some dilemmas were evident, though not spelled out. Seeing a young man climb into a water-bath with a completely naked woman not his partner while she delivers a baby, in itself raises all sorts of questions. Watching the play of emotions on the face of a husband as his wife embraces another man at intimate moments of reproduction, brings so many doubts to the fore. Hearing of a partner walking away because he can’t cope with the fallout of what he once saw as an heroic gesture, is traumatic. Being ‘rejected’ for the key role can resurrect deep-seated problems with self esteem. Exactly what does this level of sharing of an intensely intimate and private series of acts, do to relationships and bonds and families?
It’s only retrospectively one can say if such a transaction has been a wise decision. But it’s something every person contemplating being involved in a surrogate pregnancy must delve into deeply and honestly, and this series is a very useful launching pad. Happily, of course, not all such processes must take place under the glare of spotlights and cameras. These were very courageous souls.
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.
Nothing new under the sun
Big sigh!
Publishing anything – a letter/article in a newspaper, a research paper, a novel – is always subject to time. Will someone else pip me to the post? Will I appear to be a plagiarist rather than an original thinker? Two incidents have stirred that old anxiety for me recently.
It’s a while since I read a novel which explores an ethical issue in my own sphere of interest, so I was intrigued by Susan Lewis’ 2017 book, Hiding in Plain Sight, especially when I kept reading and found her story overlaps with no less than three of my own novels.
* One of her principal characters is Penny Lawrence who led a disturbed childhood before running away aged 14. In Over my Dead Body (2013), I tried to get inside the mind of a child who struggles to relate to her family, and a mother who agonises over her own response to her child.
* Penny Lawrence gets involved in the world of selling babies to infertile couples. I asked a lot of what-if questions about surrogate pregnancy in Double Trouble (2005).
* When Penny Lawrence meets up with her mother and sister almost thirty years later, all three are forced to face the fractures in their family lives foursquare. In my current novel, Killing me Gently, I’m delving into the effect parents’ and children’s behaviour and emotions can have on family cohesion and integrity.
And curiously one of the titles I considered for my book was Killing in Plain Sight.
But there the similarities end. Susan Lewis’ take on these issues, her writing style, her whole approach, are completely different from mine. Character and plot tend to be far darker, the psyche more tortured, the secret lives more sinister. She’s quick to reassure us that her books are not intended to leave us feeling frightened or miserable but they do dabble in disturbing and sensitive subjects – in this case family tragedy and mental illness. I too deal with sensitive and troubling issues, I have even been known to end on a sad note, but I do aim to have redeeming features in my characters, and to leave lots of breathing space for the reader to form his/her own opinion on the rights and wrongs of what happens.
There’s ample room for both of us to be writing on these issues, I think.
So hopefully this same maxim will apply in the case of the new Sunday evening drama, The Cry, which started this week on BBC1. I couldn’t believe my eyes when the trailers started just after I finished my latest edit of Killing me Gently. Difficult to predict the degree of overlap at the moment but there are uncanny similarities.
I’ve never seen so many flash-backs and flash-forwards before, but we know this is about a young mum (played by Jenna Coleman aka Queen Victoria!) struggling with a fractious baby who vanishes mysteriously, and now the mum’s on trial for something baby-related. The series will be finished before my book comes out, so if push comes to shove I can always tweak my own plot if necessary, but of course, I devoutly hope it won’t be. Months, if not years, of blood, sweat and tears have gone into creating and realising this psychological thriller, getting it balanced, making the point.
The Handmaid’s Tale
Dare I confess to watching a TV adaptation before reading the book? Tut, tut, tut. I know, I know. I should have found the time to read it first, but, hey, I didn’t. Well, the subject matter appealed and my tbr pile is already threatening to topple over so what choice did I have?
The title in question? The Handmaid’s Tale, written by Margaret Atwood and published in 1985. It’s an iconic novel, sold in its millions, never out of print, and it’s just caught the eye of the multitudes again. Sales of the book are reputed to be up 880% on last year! I can believe it. 
Because the tale has just been serialised over the past ten Sunday evenings on Channel 4 and much hyped.
So was it all it was cracked up to be? Well, it’s a dystopian near-future look at an American community in a place called Gilead run along fundamentalist puritan religious lines. Pollution has rendered millions of women sterile, and officials are assigning fertile young ones to the high-ranking men – known as commanders – to bear them children. These brainwashed nubile females are all dressed alike in all-enveloping russet red habits and starched white wimpoles. Everyone is obsessed by one thing: conception. It hangs over everything; creeps into every exchange. From the robotically repeat greetings – Praise be; Blessed be the fruit; May the Lord open – to the common knowledge of the girls’ optimal fertility days.
But in spite of their unique value to the community, the handmaids themselves are hedged about with prohibitions, so repressed that they are even named as possessions of the commanders. Offred (literally ‘of-Fred’) is the narrator (played by Elisabeth Moss), and we are party to her rebellious thoughts as she goes through the motions of sexual servitude.
The act of impregnation in Gilead is known as The Ceremony. It takes the form of a sort of carefully ritualised threesome with the commander methodically doing his best to ejaculate into the handmaid at the lower end of the bed (state-sanctioned rape in essence) at one remove from his wife who cradles the handmaid’s head in her lap and watches the action apparently impassively from the other end. All based on the Old Testament account of Bilhah Rachel’s handmaid bearing children for Jacob ‘between the knees’ of her barren mistress.
And when Rachel saw that she bare Jacob no children, Rachel envied her sister; and said unto Jacob, Give me children, or else I die.
And Jacob’s anger was kindled against Rachel: and he said, Am I in God’s stead, who hath withheld from thee the fruit of the womb?
And she said, Behold my maid Bilhah, go in unto her; and she shall bear upon my knees, that I may also have children by her.
And she gave him Bilhah her handmaid to wife: and Jacob went in unto her.
And Bilhah conceived, and bare Jacob a son.
And Rachel said, God hath judged me, and hath also heard my voice, and hath given me a son: therefore called she his name Dan. (Genesis 30 vv1-6)
A taser-wielding, severe ‘Aunt Lydia’ keeps the coven of girls in subservience and trains them in their role, meting out dracronian punishments one minute, shedding hot tears for the girls she protects the next; and the legal wives ensure the handmaids definitely don’t get ideas above their station. They have one purpose and one purpose alone – as baby incubators for the ruling elite. Even a failure to conceive warrants horrible repercussions. And given the high likelihood that the commander is himself sterile, and the certainty that his wife is, it’s particularly hard to swallow. The tension is palpable, and only increased when the commander sends for one of them, or someone looks at them suggestively, or betrays an illicit emotion. The penalties for stepping out of line are barbaric – torture, eyes gouged out, beatings, hands hacked off, stoning, genital mutilation, even death by hanging or radiation sickness. Small wonder perhaps that the handmaids, with so much emotion suppressed, the victims of so much injustice, turn into raving vengeful murderers when they are licensed to punish a rapist. Making their later loyalty to each other when they have a collective opportunity to punish one of their own the more poignant.
And outside these baby-making homes, ominous black figures lurk and patrol, black cars with blackened windows glide into strategic positions, and the black shadow of something sinister hovers. Who can be trusted? Who is really in control?
It’s compulsive viewing although the violence and inhumanity in places left me feeling quite disturbed. And the horror of what’s really going on strikes forcibly when ‘Gilead’s children’ are paraded in front of a foreign delegation to demonstrate the effectiveness of this whole arrangement. I won’t spoil it by revealing more.
At once sobering and challenging but eerily perhaps, less unbelievable right now than in 1985 when Attwood dreamed it up. Why?
Because there are echoes of such a scenario in the news this past week in real life: reports of seriously diminishing sperm counts (down c50% since the 70s) resulting from a variety of sources in our environment and lifestyles (chemicals, pesticides, stress, obesity, tight underpants); figures that come from studies tracking 40,000 men. Couple this with the modern trend towards waiting till women are in their 30s to start a family and you’re looking into a future that looks suspiciously like Gilead! Or does it?
And then there are the chilling similarities to the forced marriages and honour killings countenanced by certain rigidly fundamentalist communities in this country today … Shivers run up and down the spine watching dozens of hands reaching for stones …
Whatever the strengths and weaknesses of the research reports, or the limits to real-life parallels, the lessons within the novel do challenge us today. Are we ‘too busy to stand against sin’? How far would we go to have a child? How much are we doing to protect our fertility, our race, human kind, our world? Difficult but relevant questions which make the story linger long after the credits have faded from the screen. Thanks, Margaret Atwood.
Real life ethical challenges – alive and well
Wow! The year has begun with a bang as far as medical ethics is concerned. Lots to challenge us.
Just in one day this week we had the news that …
Every secondary school in England is to be offered training to help them identify and support children who are suffering from mental illness – a government-led initiative. Mrs May describes it as a first step in a plan to transform the way we deal with mental health in this country. There’s a long way to go but this is at least a concrete measure. Is it the right one, d’you think?
A terminally ill man with Motor Neurone Disease who fears becoming entombed in his own body has asked judges to allow doctors to prescribe a lethal dose of drugs for him without fear of prosecution. Sound familiar? Well, actually it’s the first case of its kind for 3 years would you believe – surprised me to learn that too. Should he be allowed this option? Is the UK ready for change? Where would it lead?
There’s been a rise in demand for live-in au pairs for elderly folk. It’s an attractive alternative for some to going into residential care. OK, I’m listening! And it comes amidst the controversies over standards in care homes and the soaring costs involved. But of course it comes at a price. And it inevitably excludes some people. Will it take off? Should it?
Viscount and Lady Weymouth have become the first members of the British aristocracy to have a baby carried and delivered by a surrogate mother. Apparently Emma Weymouth has a rare condition which puts her at high risk of having a stroke during labour; she suffered a brain haemorrhage and an endocrine disorder during her first pregnancy. This was deemed the safest way for them to ‘complete’ their family. But of course it has higher significance to an ancient lineage like the Longleat Bath family than to the average couple. Any thoughts?
After lengthy wrangling, judges have decided that a Gulf War veteran, policeman, and father of one, aged just 43, should be taken off life support and allowed to die, in line with his expressed wishes. His wife sees it as a final act of love. Others decry it as the thin end of the wedge to denying the sacredness of life. Where do you stand?
As I’ve said before, I shall never run out of material for my writing. And this ongoing interest in my subject spurs me on.
NEWSFLASH: Yesterday I completed the first draft of novel number 10. Wahey! Drum roll, please. It’s about a professor of Medical Ethics going on a train journey from Aberdeen to Penzance to deal with a crisis in her own family, but encountering all sorts of challenges along the way. The most fun of all my books to write so far, but I still cried at one point!
Final changes and additions
I’m at the stage with Inside of Me where we’re waiting for reviews and final comments to come in before the whole package can be put together. It would be all too easy to champ at the bit but I’m using the time to catch up with a hotch-potch of jobs. One of those is checking out ‘the competition’ – aka reading other novels that fall into the ‘medical ethical’ bracket.
Two books overlap very directly with my own.
Dear Thing by Julie Cohen is about surrogate pregnancy – like my Double Trouble 
published six years earlier; although I hasten to add I’m not suggesting Cohen plagiarised my ideas! Indeed, her book became a Summer Book Club choice with Richard and Judy in 2014.
In a nutshell: Romily is a scientist and single Mum with a precociously clever daughter. Ben and Claire are her best friends but they’re unable to have a child of their own, so Romily offers to carry a baby for them and they arrange the logistics of this transaction privately between them. But no one has bargained on the unravelling of relationships and emotions. Hmmm. Very similar plot line to mine then.
Elizabeth is Missing by Emma Healey was recommended to me by someone who’d also read my Remember Remember. Again it came out long after mine – seven years this time. 
And again it won a prestigious prize – the Costa First Novel Award 2014.
In a nutshell: Maud is struggling with dementia and searching for her friend Elizabeth. She is haunted by unresolved issues from her past. The bewilderment and confusion of the dementing mind are beautifully captured, and important truths are dotted into the account of Maud’s thinking and stumbling through life. 
For example, she loves being teased; it makes her ‘feel human’; the other person is assuming she’s ‘intelligent enough to get a joke.’ Worth remembering.
I’ve now finished both. Verdict? Enjoyable reads, although neither achieved a 5 star rating for me. The overlaps with my books are noteworthy, so I’m glad I wrote mine first. It’s an abiding concern with me that another publication will come out ahead of mine that makes it look as if I stole someone else’s ideas! Partly fuelled of course by a heightened awareness of a topic which means you see it everywhere. On the other hand, I’m delighted to find such thought-provoking books are receiving real recognition.
All this reading feels like a great indulgence, so it was heartening to hear prolific author, Nicola Morgan, (at a Blackwells Bookshop author-event last week) describe reading novels as an essential part of stress reduction, and not the luxury or guilty pleasure it’s sometimes portrayed as – she calls it ‘readaxation’! And she should know: she’s an expert on the brain and coping with stress. I shall sink back into my upholstered chair and allow the healthy hormones to do their work as I turn the pages …
Oh, and by the way, click here for an interesting clip about the value of reading aside from relaxation.
Ethics in the news
Every now and then I like to give you a glimpse into the world of medical ethics that continually fires my imagination. Just since I wrote my blog last week we’ve had the following stories in the media – apologies in advance, the list grew and grew as the week went on! See what you think about them? Do you have any simple answers? What would your solution be? Where does your mind travel? I’ll give you links so you can find out more about any of the cases you’re interested in.
A grandmother has given birth to a surrogate child for her single son in his mid-twenties using his sperm with a donor egg. A judge has ruled that, though unusual, the arrangement is entirely lawful. But … is it ethically acceptable? Who is brother … father … mother …? What about sixteen years down the line? My mind goes into overdrive. How about yours?
Zach Parnaby is 20 months old and his family are already working down a bucket list of his favourite things before he dies. He has Krabbe Leukodystrophy. A pinprick screening test could have detected the disease soon after birth, giving them the option of a bone marrow transplant, but his parents were told it isn’t done for cost reasons. Is this reasonable and just? What price would you put on a child’s life? How would you juggle competing demands for limited resources?
Sarah Marquis is a 41 year old lawyer specialising in white collar crime. In 2008 doctors failed to spot that her appendix had burst and she was rendered infertile. The hospital have admitted liability but their lawyers are insisting that she deserves less compensation because she has been free to pursue her career without the breaks necessary for child bearing. Is this appropriate and fair? What if she went on to have a child through IVF … ?
17 years ago Zephany Nurse was stolen from her sleeping mother’s arms. But now, by a coincidence, she has met up with her biological sister and been reunited with her birth mother. Her abductor, whose own child was stillborn, apparently cared for her well, and this week we heard that Zephany refuses to testify against her. Should the woman be allowed to go free? Who do you think should best occupy the parenting role?
From this week Canadian patients will be allowed to ask their physicians to help them end lives that have become burdensome to them. Their Supreme Court ruling was unanimous. Do you agree with them? Should the UK follow suit, d’you think?
Seven years ago an NHS consultant had a malignant growth removed from her thyroid gland and was discharged home the following morning, even though she was already showing signs of a dangerously low calcium level in her blood. However her medical knowledge told her she was in big trouble and she dialled 999, saving her own life. She has just been awarded a six figure sum by the hospital trust who admitted liability. How would this have all panned out if she’d been your average ordinary Joe Bloggs?
A US study has found that hard physical work damages a man’s sperm. So …? Does this give men the right to refuse to work on the grounds of their human rights? This could get interesting!
A proposal has been made that seriously ill patients could be offered organs from high risk donors (eg. cancer patients, smokers, the elderly or drug users) to help address the chronic shortage of available organs for transplant. Let your mind ramble over the possible scenarios of this in terms of the possible donors … Would you accept second best … for yourself? … for the person you love most in the world?
The NHS has just launched a controversial online calculator. It’s said to predict when someone will have a heart attack or stroke. Hello? Would you wish to be told that? Would you alter your lifestyle to prevent it? Would that negate the prediction? A couple of days later we’re told that ‘two families will be the first to receive personalised care based on their DNA as part of a national plan to sequence 1000,000 genomes.’ Is this science fiction coming true? Or a utopian dream? Where will it lead?
Back to the humdrum everyday … A survey of more than 1000 cancer patients has found that 1 in 10 is left unwashed, undressed or untoileted because of a lack of careworkers. And we all thought cancer was high priority; it was the elderly who were neglected. But then we hear that 26% of councils in England failed to properly consider the needs of people with arthritis, and 66% failed to consider back pain – conditions which affect 7 million people in England and account for £5 billion of NHS spending. What do these studies say about the allocation of resources and priorities? Oh, but hey ho, on the same page … scientists have found a class of drugs that dramatically slow ageing … in mice at least. So is this where the money will go? An elixir of youth? Ahhh, wait a wee minute … plans are in hand to build the UK’s first proton beam therapy cancer treatment centres in London and Manchester. Just who is deciding how and where the money is being allocated here? And if you were in charge …?
Still with resources … As from this week 16 very expensive drugs which have been clinically proven to increase the lifespan of terminally ill patients, are to be removed from the approved list of the Cancer Drugs Fund, as announced in January. Imagine your beloved was dying prematurely … Is it possible to reduce the well-being and hope of any family to pounds and pence? Should drug companies be allowed to raise obscene amounts of money from the tragedies of others?
Ex-serviceman Chris Graham is 39. He has a 6 week old baby. He also has early onset dementia. It’s in his genes. His brother has it; he’s 43 and totally incapacitated and dependent on others. Their father, grandfather, aunt and cousin all died of it in their forties too. Chris might have passed it on to his baby son. At what point should a halt be called to this perpetuation of tragedy? Should it ever? What if scientists modified the family germline …?
These news items were all reported in just one week of the year – a mere 7 days. They’re the kind of clippings that find their way into my ideas folders because they set my brain asking, ‘What if …?’. ‘Supposing ….’ ‘Would this be believable?’ Trouble is, my brain has a finite capacity … and shrinking! And there simply isn’t time to turn all these possibilities into stories.
(NB. For the purposes of this blog I’ve made no effort to pursue the facts behind these stories; I’m just sharing what anyone might know from the papers.)
What the papers say
This post should carry a government health warning: If you are quickly bored with facts or allergic to conundrums do not continue with this week’s blog.
I’ve always maintained that the subjects I write about are issues which challenge us as a society; they repeatedly hit the headlines. And this remains the case. To illustrate the point, I decided to monitor the medical ethical challenges that were reported in one newspaper (The Telegraph) for just one week (4-10 August 2014) and share with you what I found. Wow! Even I was bowled over with the sheer volume of material in this category in just seven days.
Please bear in mind as you read, that papers have their own agendas and the facts might not all be correct. However, on this occasion I’m not going to research every issue or attach links or hedge the topics around with qualifiers and alternatives; all these ‘extras’ would detract from my focal point. I’ll simply itemise the issue, and leave you to ask yourself: How would I feel in this situation? What would I do in these circumstances? What should society do? What is fair and just? What are the implications for educating the public, or our limited resources, or competing demands? … Or you can just accept the point if you prefer an easier life!
So … are you sitting comfortably? …
ASSISTED CONCEPTION
There’s been an outcry against the first national sperm bank (in Birmingham) which openly caters for lesbians and single women who want to start a family without having a relationship with a man.
The ongoing story of Gammy, the baby with Downs Syndrome (discussed in my last post) who was allegedly rejected by his commissioning parents following a surrogate twin pregnancy, rolled on with almost daily updates unravelling more and more bizarre aspects, bringing the whole question of surrogacy under the spotlight.
A Japanese businessman is said to have fathered nine babies during the past two years using Thai surrogate mothers. Seven nannies have been hired to care for them. Reports vary as to his motives: from ‘he wanted a big family for himself’, to ‘he’s part of a child trafficking ring’.
ASSISTED DYING
Former teacher, Dawn Faizey Webster, has been in a locked-in state following a stroke at the age of 30, two weeks after giving birth to her son. She was featured this week completing a university degree 12 years later, by blinking using a laptop that translates her eye movements into text. And yet other people in a similar state are pleading for assisted dying because life is intolerable.
MATERNAL v FETAL RIGHTS
Women who drink alcohol during pregnancy slow the development of their children’s brains, reported researchers in Los Angeles. They compared the brains of children with fetal alcohol spectrum disorders and unaffected children over a period of two years.
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DEMENTIA
Saga conducted a survey of the over 50s and found that far more are afraid of developing dementia than cancer.
A study of 1658 Americans aged 65 and over has found that a severe lack of vitamin D appears to more than double the risk of dementia. But hey, the winter sun in the UK is too weak to generate adequate vitamin levels and older skin is less efficient at doing so. Cue salmon, tuna, mackerel and fortified foods etc etc etc.
A report from the Centre for Economics and Business Research has estimated that the number of people who are forced to retire early because they have (or a loved one has) dementia will double within 15 years.
PERSONAL LIBERTY v PUBLIC SAFETY
Several Britons have been quarantined over fears of the Ebola virus entering this country. It’s alleged that certain ‘special’ patients have been given specific experimental untested drugs to good effect which are not available to others.
MENTAL HEALTH
A nationwide survey of people with bipolar disorder, their carers and the professionals who treat them, is about to begin in this country. The researchers say it’s too often the case that other people remote from the sharp end are the ones who influence research expenditure; they want to remedy this. Critics question the morality of including people with mental illnesses.
A teenage girl in Merseyside took her own life after visiting pro-anorexia websites and self-harming.
ORGAN DONATION
A 24 year old, Stephanie Reynolds, has launched an appeal for a kidney for her mother via Facebook. Thousands of strangers from around the world have offered to be tested to see if they are compatible as potential donors. Her mother, Elaine, has an autoimmune element which means she cannot have an organ from a blood relation. The odds of finding a match are less than one in 10,000. Hence Stephanie’s Facebook appeal. Apparently such appeals have been successful in the USA.
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PUBLIC HEALTH and LIFE STYLE CHOICES
Grizzly bears gorge themselves and become obese prior to hibernation but they don’t get diabetes. Scientists are asking: Could this offer a clue for treating humans?
A report in Annals of Oncology has stated that if everyone between 50 and 64 took a low dose aspirin daily for 10 years it would prevent 6518 cancer deaths each year and 474 fatal heart attacks. But the price would include an extra 896 deaths per annum from strokes and stomach bleeds. (Hmmmm. This one affects me personally. Some years ago, taking that small prophylactic dose for only six months triggered lymphocytic colitis which has plagued me ever since. So I wouldn’t myself describe it as poetically as Christopher Howse: ‘Aspirins are the vanilla cynosure of the rattling world of pills; unsparkling but attractive, like pearls’. Not in my book, matey! Sorry, I digress.)
It seems that prostate cancer screening could save more lives than programmes to detect breast cancer – so says a European study of 162,000 men from 8 countries. That would mean saving around 2300 lives per annum in the UK. And yet … the research has concluded that such screening should not be introduced. Why? Because a high level of over-diagnosis (resulting from the unreliable PSA test) would mean thousands of men going through needless treatment and ending up with incontinence or impotence.
RESOURCE ISSUES
A staffing agency, Prestige Nursing + Care, has issued new figures which indicate that pensioners’ incomes have fallen further behind the cost of care homes. This is adding to the pressure on NHS hospitals and putting vulnerable elderly people in danger. Also the number of people receiving home adaptations has fallen by 12% since 2010, heightening the risk and incidence of falls and injuries.
A report, The Future of Loneliness, has predicted that hundreds of thousands of pensioners will be all but cut off from services, shops and their local communities within 15 years because of the rise in the use of the internet. The result will be a hugely inflated risk of loneliness, already a worrying aspect of old age.
A ‘wonder drug’, metformin, normally used to treat diabetes, has been found to increase the life expectancy of patients with other conditions such as cancer and cardiovascular disease. This could mean an extra two and a half – three years for today’s 65 year olds. What’s more it only costs 10p a day. But hey, we’re already struggling with the problems of an aging society …
The National Institute for Health and Care Excellence has decided that a revolutionary drug, Kadcyla, that is said to give women with advanced breast cancer an extra six months of life, will not be available on the NHS because it is too expensive, even after the manufacturers have offered a discount. Countries elsewhere in Europe fund it. Ahhh, the old chestnut: if you look at the individual cases, doesn’t every family want to hang on to their loved ones for as long as possible? – well, most families anyway. But add up all those astronomical bills and balance them against only a few more weeks of life and set that against all the other treatments competing for the limited pot of money, and the perspective looks different.
Researchers at Imperial College have found that injecting a patient’s CD34+ stem cells into their brain following a stroke encourages tissue repair and may save them from death or severe disability. However, an expert has said these improvements could just be due to chance or the special care this small safety trial has provided for a tiny number of patients.
FAILURES IN CARE
The Care Quality Commission has admitted that at least 750 homes providing care for the elderly and disabled have been failing to attain at least one basic standard for more than a year. Why? Because the CGC feared legal threats from the owners of the homes. As a result vulnerable people have been knowingly put at risk. The CQC say that a new regime is being introduced to make protection much more robust.
Official statistics on NHS waiting times have revealed that the number of patients forced to queue in ambulances outside A&E departments has almost doubled in three years. In addition, over 3 million people are now on waiting lists for operations – a rise of 700,000 compared with 2010 figures.
Phew! As you can see, I shall never run out of triggers for new novels! I’m constantly thinking, What if ……?
Perfection
Did you follow the Glasgow 2014 Commonwealth Games, I wonder? I dipped in and out, marvelling all the while at the stunning abilities of these top athletes – their skill and stamina and flexibility and sportsmanship.
The real highlight for me, though, was the diving in Edinburgh. Watching Tom Daley somersaulting from the highest board, executing perfect twists and turns, entering the water so cleanly that the surface was barely disturbed, left me breathless (and anxious!). And the 14 year old Matthew Dixon; how did he feel perching on the very edge of that board 10 metres up the very first time he tried it? How did his mother feel with his hurtling brain so close to that unforgiving concrete? My heart was in my mouth, never mind hers! (Even the more experienced Daley says: ‘When you look down, your knees go weak, your legs turn to jelly and it’s terrifying.’) And then there’s the synchronised diving. How two people can execute identical moves simultaneously during that brief and rapid descent, is beyond my comprehension. This is surely a kind of perfection writ large.
Perfection, ahhh – that brings me to this week’s story of the baby born to a Thai surrogate mother, who has allegedly been abandoned by his would-be parents because he isn’t perfect. Baby Gammy has Downs Syndrome and other co-morbidities. Of course, we don’t know the minds of any of these characters; we only know what the media tell us, and some sources cast serious doubts on the authenticity of this account and the credentials of those most concerned. But picture the scenario from the point of view of the commissioning couple: instead of a beautiful healthy child to bring up and launch into the world, the prospect of a short and difficult life for their baby, and the grief of losing him. This wasn’t what they signed up for. The story is that they have elected instead to take Gammy’s healthy girl twin, and to leave the damaged baby behind. (They themselves are variously reported to have asked for Gammy to be aborted, or to have said they were only offered the one, or to have been informed that Gammy had only a day to live and his mother wanted him to be buried in Thailand.) So what of the surrogate mother? The papers report that she has rejected all offers from other couples to adopt her son and intends keeping him and loving him for as long as she has him. Apparently thousands of well-wishers around the world have begun donating money online to enable this impoverished woman to do just that. Whatever the truth really is, this difficult story has highlighted some of the many ethical issues associated with surrogacy. I’ve had an ongoing interest in this topic ever since I researched it for my novel, Double Trouble, but what do you think of the rights and wrongs of this case?
It was entirely by chance that this week I read The Behaviour of Moths by Poppy Adams – which was given to me by friends who came to stay a couple of weeks ago – and found that it also includes a surrogate pregnancy. It’s a most unusual story and it wasn’t until P126 that I began to understand why they chose it for me; and not until P155 that all really became clear. After that I was glued to it. I don’t want to spoil the dramatic tension for you, so I’ll simply say that it tells the story of two sisters brought up by eccentric parents in a rambling Dorset mansion. The elder girl, Virginia/Ginny, becomes apprentice to her semi-detached father who is a reputable and dedicated lepidopterist. Together they hunt and study every kind of moth they can find, conducting experiments on them, researching their behaviours, amassing a formidable laboratory and collection.
The story begins with Ginny watching from the first floor for the arrival of her ‘little sister’, Vivien/Vivi, returning after decades of absence. Through the lens of Ginny’s peculiar take on life, it recounts each day of one week in their lives when they meet, as old women, one last time. Slowly, gradually, subtly, we piece together their experiences, feelings and differences as they re-live their childhood, and try to resolve the legacy of the past and the accumulated burden of their emotions. And yet … well, how much of this can we really believe? From the time Vivi falls out of the bell-tower and is nearly killed, it’s like a collapsing column of dominoes, each one nudging the next towards an inexorable conclusion. The Behaviour of Moths is a haunting tale, and I’d love to have a one-to-one chat with the author about her thinking, especially about the character Ginny; I’m not at all sure I have understood her correctly.
But to return to the topic of perfection, at one point in the book, Arthur, a troubled young father says: ‘You can’t choose your children. You can’t take the best ones, the ones that survive, the ones that are born the right colour. If you decide to have that child you must take it, whatever happens. You must claim him.’ When things go wrong, the surrogate mother concludes, ‘If it survived it was hers; if it died, it was for me to mourn.’
Uncanny, huh? It could have been written with the Thai family, and the Australian commissioning couple, and baby Gammy in 2014, in mind. And yet this was published in 2008. And is fictitious.
Speaking of perfection … the lilies in our garden are blooming in profusion right now. We have massive banks of them in the house and still a proliferation in the flower beds. Now there’s perfection of a different order, huh?
Take it as read
It takes a while to catch up with news after a break away, but in this week’s trawl, two headlines in particular caught my attention.
The first was this one: ‘Take it as read – good fiction teaches us how to be human beings‘, a thoughtful article by Graeme Archer in The Daily Telegraph, where he said:
‘… it’s not the novels where one sees oneself in a character that matter: it’s the ones where you learn to see properly, from the perspective of another. If we don’t see people properly, then we can never empathise with them, and if we can’t empathise with others then we’re not properly human. No matter how socially awkward you are, a great novel will train you to do this.’
Very much the premise upon which I write my own novels.
Indeed, I was thinking about this a lot while I was on holiday in Italy. I took the trusty Kindle well-loaded and managed to read two and a half novels in airports and trains and planes and odd moments of inactivity: 
Emotional Geology and Untying the Knot both by Linda Gillard, and A Sister’s Gift by Giselle Green. Through these tales I was taken into the lives and minds of characters grappling with mental illness, obsessive personalities, infertility, conflicted family relationships, surrogate pregnancy. Easy reads all (as befits a holiday break), but it’s fair to say they enriched my understanding of the challenges and thinking of other people in these situations. I shan’t ever experience most of these things personally, but I’d like to think I’d have empathy enough should I come into contact with those for whom these things are a lived reality.
The second headline was attached to an article my daughter cut out of the newspaper for me: ‘Why did my brother die in agony?’, subheaded: ‘Terminally ill patients are suffering slow and painful deaths because doctors dare not fall foul of the law against assisted suicide.’ Yep, it instantly grabbed me by the throat, as she knew it would.
Well-known cookery expert, Prue Leith, was describing her brother David’s terminal battle with excruciatingly painful cancer of the bones. When the morphine was doing its job, he was pain-free, joking, and sharing quality time with his wife and four children. But the dosage of morphine was sufficient for only three hours out of every four for which it was prescribed. For that fourth hour he was in agony. The solution seems obvious and simple, doesn’t it? Naturally enough, various relatives appealed, nay, ‘pleaded’, for help. The answer though was what shocked me: the nurses ‘couldn’t’ give any more pain relief. They sympathised, even told the family they would personally be willing to increase the dose, but they were powerless to do so; the law precluded it. They also said, no one admitted these situations existed. (By this time I was at fever pitch!)
Now, of course, no one with warm blood coursing through their veins could fail to be moved by the obvious distress the Leith family all suffered. But the story left me personally feeling frustrated and vexed. This man clearly needed more medication. And it can, it really can be given without breaking the law. Palliative medicine is an extremely well developed discipline; dedicated teams of experts in pain management are fully empowered to administer effective measures (drugs and others treatments) in these circumstances, to ensure ongoing comfort and dignity and a peaceful death. Which they are able to do in all except a limited number of situations. And by Prue’s own admission, David’s pain came into the category of controllable by morphine.
Both the subheading and Prue’s concluding message – ‘The present state of affairs is monstrous. With 80 percent of the population in favour of assisted dying, what are they waiting for?’ – missed the point. It wasn’t assisted death this man needed, it was legal and legitimate, adequate pain relief.
There are indeed exceptional cases where the laws relating to assisted dying need to be challenged (I’ve discussed them at length on this blog in the past), but this is not one of them. Instead of saying they couldn’t give adequate medication, those staff caring for David should have been calling for a man/woman who could. Let’s not confuse the two issues.