Hazel McHaffie

Netherlands

Thrills, chills and perils

As you know, I’ve been studying other people’s thrillers to try to pinpoint the magic ingredients; how to maintain suspense and build tension and fulfill expectation.

Part of the secret lies in the hooks offered from the outset – as with any book, I guess, but particularly with a thriller.

So how about this for a scene setter on the first page?
People on the island village understood there was some kind of psychiatric institution on their doorstep. Only a few who worked there knew it housed a handful of the most disturbed female juvenile criminals in the Netherlands.

You just want to know what heinous crimes these girls have committed, don’t you?

Well, orphaned sisters Mia and Kim, two of the Timmers Sisters triplet singing group, from a little fishing town called Volendam in the Netherlands, have been incarcerated there for ten years, forgotten for the most part. They were just eleven years old when they were detained. Why? For killing someone.

OK, what kind of a someone? A musician called Rogier Glas, savagely hacked to death with a kitchen knife, his penis cut off and rammed down his throat. Gee whiz! Can you picture eleven-year-olds this out of control?

And now those girls are twenty-one. Beautiful. Telepathic. Obsessed by the number three.

And that’s just chapter one of David Hewson‘s Little Sister!! Yep, I’m hooked!

Add in Pieter Vos, a ramshackle senior police officer in the serious crimes squad, who lives on a shambolic houseboat on the canal with his diminutive fox terrier Sam and you’re into classic crime-writing territory.

Track back into the history … the girls’ mother, father and sister all murdered … every investigative report into the atrocity – electronic and paper copies – mysteriously shredded. And you’re feeling the chill. The girls, tested and analysed and schooled to the nth degree, and now deemed ‘sufficiently normalized’ to be released under supervision, are freed into ‘a universe without boundaries, real form or substance‘ with no experience or real knowledge of the adult world. Only to vanish. The unsuspecting member of staff designated to drive them to a halfway house, also vanishes; his car, his clothes, discovered in thickly weeded slimy water.

The blood runs cold. We’re only at page 50! And I’m staying up way past my bedtime, transfixed.

A brutally murdered body is found not far from that psychiatric institution, yet no CCTV detected anything suspicious. Another body turns up in a deserted farmhouse. Threats, disappearances, malpractice, hush money … it’s all there, dragging us further and further into the murky depths.

What exactly has been going on at the psychiatric institution? what was the dead nurse doing? where are the girls? what exactly is the last remaining member of The Cupids band afraid of? are the girls a danger to others or are they in danger themselves? – the questions get increasingly convoluted as more and more dirt is dug up. And gradually all the pieces of the macabre and disturbing picture slot into place.

The sentences are oddly constructed and staccato at times, and occasionally I got lost in the Dutch names, but it was worth persevering. and I defy anyone to preempt the truth when it finally emerges, or to better the ending.

So, the verdict? For me, it’s a successful technique. A real thriller. And I’ve learned a lot in the process of reading/analysing it. Thank you, Mr Hewson.

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Could I? Would I? Should I?

With all my talk of books lately you might well have forgotten that my blog is also about ethical issues. So, something a little more challenging this week.

QuestioningYou’ve probably heard on the news that a teenager has just become the first to be helped to die by doctors in Belgium, a country that lifted their age restrictions on assisted dying two years ago. This girl was 17 years old and terminally ill. Let’s stop and contemplate that for a moment. 17 years old … on the cusp of life. Terminally ill … a tragedy in itself. Now dead … hard to even contemplate the agony wrapped up in that reality. Sends shivers down your spine just thinking about it, doesn’t it?

Belgium legalised assisted death for adults as long ago as 2002. And in 2014 it became the only country* in the world that allows a child of any age to choose doctor-assisted death provided they have parental permission. There are strict criteria; of course there are. The minor must be terminally ill, fully and rationally understand the difference between life and death, face unbearable physical suffering that can’t be alleviated, and have made repeated requests to die. Two doctors, one of whom must be a psychiatrist, must give their approval.
(*The Netherlands permits children to have an assisted death but requires them to be aged 12 or over.)

How do you feel about this ruling?

Would you allow your child to choose to die?

But hang on a minute. Let’s not rush to judgement without properly assimilating the facts. This is not some wilful youngster throwing a hissy fit and whining about a passing ache. This is a wise-beyond-their-years person who’s known extreme and unremitting pain, who knows he/she’s not going to survive this illness. Given these circumstances, could you bear to stand by? Listening to the agonising screams? Seeing the appeal in the eyes? Watching the dying process be strung out, knowing … knowing there’s a way out, a legal option? Wouldn’t you be begging someone to do something … anything?

An opinion poll taken a few months before the law changed to allow children this choice, suggested that 75% of Belgians supported it. Understandably many churchmen, especially those of the Roman Catholic church, opposed it. OK, we know they have strong opinions and beliefs about the sanctity of life. But so too did many doctors. What does this say? They after all are the ones who care for these tragic families, make decisions about treatment, convey the bad news, feel their own powerlessness. This isn’t theoretical for them; they actually stand at those bedsides, see the agony up close and personal.

Could it be that the doctors baulk at a law that allows the life of the child to be ended actively, because they are the very people who’d be asked to actually do the deed? And they are trained to cure, not to kill. It’s so much easier for a lay person to say, ‘Oh yes, a child shouldn’t suffer unbearably; you should help them to die with dignity,’ when they know they will not be the ones called upon to inject that lethal drug.

So, maybe the question ought to be: Would you be willing to end that life yourself? And if not, is it hypocritical to approve of a law allowing assisted dying?

If so, how many of us are guilty as charged?

I’m ridiculously squeamish. I struggle to kill an insect or an arachnoid, preferring to capture them and return them to the wild. There’s something very, very special about life, especially a human life. And I’m absolutely certain I could not be actively involved in the death of a child … or … am I? Because the alternative appalls me. What right have I to insist a child endures terrible suffering? I’m not at all sure I could stand by and not do something to help if it were in my power. Maybe, just maybe, there are certain circumstances where I might feel compelled to forfeit my own comfort, my own preferences, even possibly my own principles, and put the child and his/her interests first. Whether or not I would actually do the deed is unknown. I’ve never been tested.

We haven’t come close to approving assisted dying for adults in this country yet, never mind for children. The majority of – not all – doctors and politicians oppose a change in the law. But we all ought to thoroughly consider the options and consequences nevertheless. I’m not, thank God, facing this devastating dilemma at this precise moment. You might not be. But there are too many families for whom this is no hypothetical question; this is their ongoing living nightmare. What kind of a society do we want for them?

As the late Sheila Bloom, Chief Executive of the Institute of Global Ethics once said, ‘It isn’t about knowing right from wrong – we can all do that. It’s often about choosing one right over another and finding good reasons for it.’ Or we might add, sometimes choosing the lesser of two evils.

Sobering questions for an autumnal Thursday morning, huh?

 

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Week 2 of the Book Festival

I’ve now returned to my usual invisible self, my stint as official blogger for Genotype over, my press pass archived.

Two sessions to share with you this time. Friday morning was close to my own current preoccupations. How much responsibility should parents take for their children? How far would you be prepared to go to protect those you love? And when is it right to sacrifice the interests of an individual for the greater good?

Two books were under discussion: The Donor, by Australian Helen Fitzgerald, formerly a criminal justice social worker, working with rapists, murderers and psychopaths, (gives her a head start, huh?) and The Dinner, by Dutch TV and radio producer, actor and writer, Herman Koch. Both dark books with largely unsympathetic, unlikeable characters. Hmm. Do I like unlikeable characters?

Fitzgerald’s novel, The Donor, is billed as a ‘tense thriller’ – genres are rather elusive labels at times and I’d say this was a loose categorisation. It’s about single father, Will Marion, a passive, unproductive man whom one of his girls describes as ‘a rubbish dad‘. His teenage twin daughters are polar opposites, but both have inherited a kidney condition, which means they both need a transplant. Will has two perfectly functioning kidneys. What should he do? Naturally, given my need to read any novel on transplantation, I’ve got this one, but it wasn’t the sentimental tearjerker I was expecting. It’s set in a world of drugs and violence, crime and punishment, dysfunctional families and misplaced loyalties. ‘Gritty’ is my summary.

The Dinner deals with the sombre undercurrents that lie beneath middle-class respectability. Two very different brothers – one a teacher, the other a high-ranking cabinet minister a whisper away from becoming prime minister of the Netherlands – and their wives, are in a smart restaurant, exchanging polite but banal conversation. But behind the empty words lurks an horrific secret: their fifteen-year-old sons were together accountable for an act of terrible brutality. They weren’t identified at the scene of the crime so will the parents report them to the police, or will they protect their own reputation and careers? The actions of any one of them could affect them all.

Both authors talked about the triggers to their stories, their use of humour, how they balanced the story line with the issues – all issues relevant to me. I could usefully compare and contrast their decisions with my own. They too challenge the reader to ask, What would I do in such circumstances?

The Monday session was much further outside my comfort zone: Letting the Genome out of the Bottle. Genomics – essentially the study of all the genes of a cell or tissue at the DNA level – is a relatively new field of enquiry which has raised huge questions for society, and the knowledge it provides has widespread consequences for individuals, for families and for society.

My Beautiful GenomeThe author, Lone Frank is an internationally acclaimed Danish science writer with a PhD in neurobiology. Mercifully I’d read her book, My Beautiful Genome: Exposing our Genetic Future One Quirk at a Time, so I wasn’t completely lost during her talk, even though the sound effect of rain thundering down on the roof of the tent was rather distracting, and I was still suffering from motion sickness after almost 1000 miles on the road over the weekend.

Consumer genetics has been ‘portrayed as a panacea for the plague of diseases, a cornucopia of health and prevention – with the Holy Grail being the advent of personalized medicine, tailor-made for your individual genes.’ Frank was clear: illness is indeed an important aspect of genetics, but it’s only part of the picture. Clarity is something she aims for. And accessibility. She manages to make a complex subject engaging by taking us on her personal journey of genetic discovery. She became a research subject – no easy task given the family history of depression, mental illness, alcohol problems, breast cancer – unravelling the Lone Frank genome with all its strengths and vulnerabilities. She shares the accumulating secrets with her readers. Then, having reeled us in, she broadens the issues through discussions with an impressive array of scientists from around the world. A clever tactic.

The end result is a book that’s at once engaging, informative and intriguing. How about this for a withering aside to a pompous boss: ‘Whether you are a flu virus, a slime mold, a manatee, or a manager, your genetic code contains the same components‘? Or this to prick an over-inflated ego: ‘human beings share ninety-eight percent of their genome with a screeching chimpanzee, sixty percent with a skittering mouse, and even twenty percent with a lowly roundworm a millimetre long‘? Brilliant!

And her honesty means she doesn’t shirk the difficult questions about the consequences of biological fortune-telling. There were times when I felt decidedly genetically challenged, but I scribbled furiously, and came away with a rather reassuring picture. Consumer genetics isn’t about checking your genes for a diagnosis of specific diseases like diabetes, cardiovascular illnesses, or Alzheimer’s. Rather it’s a risk assessment; a collection of indicators that compare your chances of getting a disease against the same risk in the general population.  And if you’re fearful of knowing about your genetic underpinnings, remember ‘None of us are free of mutations and genetic weaknesses – the flawless genome does not exist.’ Knowing what these weaknesses are could potentially empower us to protect ourselves from developing those illnesses to which we are susceptible. But analysis of our genes will only take us so far. Exactly what tactics to adopt requires understanding of what turns the genes on and off – the new science of epigenetics to which attention is now turning. So we aren’t there yet. And secretly at times I was wondering if we were any further forward than the days when we simply looked to our parents and grandparents to see what we had potentially inherited.

There are though, many, many other issues to consider in this more scientific approach: privacy, questions of intellectual property, the consequences to relatives, the implications for prospective parents wanting to minimize genetic disadvantage in their children, commercial pressures, the implications for employers using these tests as part of a selection process, DIY genetic testing, surreptitious testing of celebrities, paternity testing, genetic dating … I was left reeling. There were clearly some experts in the audience – they challenged Frank to tighten up her language and thinking. No dumbing down for the uninitiated here!

But the last word has to go to Lone Frank. It was she who put herself in the firing line, exposing her own vulnerabilities for all to see, she who wrote this fascinating book, after all. Her conclusion is that her genome is ‘not a straitjacket but a soft sweater to fill and shape, to snuggle up and stretch out in … it is information that can grant me greater freedom to shape my life and my essence.‘ How comforting is that?

So, the Book Festival is over for another year. And for me it’s been one of the most enjoyable yet. Hats off to all those people who make it possible.

 

 

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To die or not to die – that is the question

Yes, it’s reared its head again as another new year gets underway. The perennial dilemma. Assisted dying: should we? shouldn’t we? [Cue king-sized sigh.]

Right to DieWay back when I was writing Right to Die, (2005-2007 ish), Lord Joffe was working tirelessly and meticulously to get his Assisted Dying for the Terminally Ill Bill through parliament. I followed its progress closely, I met with the man himself, and I confidently expected him to succeed. But no,  the House of Lords blocked it. Too hot to handle.

Then two years ago MSP Margo Macdonald waged her passionate campaign to get assisted dying accepted in Scotland. I watched her in action, I listened to her in the flesh, and I honestly thought her End of Life Assistance (Scotland) Bill would get somewhere, given the publicity she generated and her own personal struggle with Parkinson’s Disease. But no. I was wrong again. It was thrown out.

Now this month Lord Falconer has published his report on behalf of the Independent Commission on Assisted Dying (set up and partly funded by Sir Terry Pratchett). The story is similar. They recognised the distressing situations people find themselves in under the present system, the anxiety it causes healthcare providers, and the challenging burden it represents for the police and prosecutors, and found the present law both ‘inadequate‘ and ‘incoherent‘. They looked for a solution for people with the mental capacity to request assistance and a clear sustained wish to die.

Once again practices in other countries that permit varying levels of assisted death came under scrutiny. The Commission ‘did not like much of what they saw.‘ In Switzerland, the Dignitas clinic is an alien environment where patients are far away from loved ones. In Oregon, patients must take 90 pills, often without a doctor present. In the Netherlands, even teenagers and people with mental illness are helped to die. The Commission deemed all these practices undesirable for Britons.

But in any case,  irrespective of the efficacy of practices elsewhere, in reality the opportunity to go abroad for death is really only available to the wealthy. Furthermore, because of the threat of legal action against relatives  who assist them, many are forced to take their own lives early while they are still physically able to do so. So, nothing new; but the painful truths revisited and reiterated.

Like their predecessors, the Commission came to the conclusion that a change is overdue. GPs should be able to prescribe lethal doses of medication for dying people to take themselves, they said.

Lord Falconer’s recommendations though, are much narrower that Margo Macdonald’s. They would only apply to people with less than a year to live, who are capable of drinking the medication unaided.  They do not include those who are suffering unbearably but for whom death is not imminent. Neither Margo herself, nor the redoubtable right-to-die campaigner Debbie Purdy who has MS, would qualify. After all they’ve done to open up the debate and clarify the law! A retrograde step surely, not to cater for the people in greatest need of help. Because in reality, terminally ill patients close to death are often helped subtly and carefully and lovingly to have a good death. It’s the ones with lingering declines because of conditions that rob them of power and control and dignity inch by degrading inch that we need to worry about most.

In fairness, this latest august committee conceded that there are dangers in what they recommend and extreme caution is needed. Pressure might be exerted on vulnerable people to end their lives – either from within themselves or from family members. Hence, in their scheme of things, disabled people, or those with depression or dementia, would be ineligible for assistance.

Or maybe they felt that a staged approach is advisable. Start small. Test the water. It’s conceivable. But could backfire.

The next step would be to discuss their report in parliament. But it will inevitably face stiff opposition. Politicians have proved themselves reluctant to back this particular hot potato. Vocal religious leaders are against the taking of life – full stop, and few politicians will risk alienating them.  And many in the medical profession are reluctant to publicly support something which appears to fly in the face of their avowed duty and intent to save life and do no harm, although, if you read the evidence to the Commission you’ll see that a considerable number of eminent doctors do privately support a change in the law.

Nevertheless the report places much of the burden for implementing change on doctors. They are the ones who must screen eligible patients, tell them about possible alternative treatments, deliver the lethal prescription, be present during the final moments, cooperate with the police, and report to a monitoring service. Burdensome indeed. Especially if you have personal reservations. And many doctors fear that allying themselves with such a death service would compromise their relationship with their other patients.

But identifying any category of person to take this role presents me with my personal biggest dilemma. It’s easy enough for those who aren’t medically trained to insist, ‘Oh yes, somebody should help these people to die.’ But would they be prepared to administer that fatal dose? To live with the knowledge that their action had killed a fellow human being? Me, I feel sick if I accidentally step on a snail! I couldn’t even finish off an almost-dead rabbit left behind by a hit-and-run driver. Squeamishness personified, me. Who am I to say, ‘Yes, we need this change, but you do it, not me’ ? That’s where all my carefully worked through logical reasoning breaks down.

This time I haven’t spoken to Lord Falconer in person, but if I had to declare my opinion as to the future of this latest attempt to offer assistance with dying in the circumstances outlined, I would rate it unlikely to succeed. Especially given the accusations flying around of bias and prejudice in this particular committee. And the problem of knowing who has less than a year to live. And the expertise required to assess people with a terminal illness for anxiety and depression – could GPs do it? And the time necessary to establish a sustained and genuine wish for death.

However, talking about these controversial and emotive issues that involve unbearable suffering and mental anguish, has to be better than sweeping them under the carpet. So if it keeps the issues alive it will have served a function. And in the meantime, let’s just hope and pray that those who need it get excellent palliative care from staff who support the concept of a pain-free dignified death.

Curious really, Right to Die came out in 2008 but is just as topical in 2012. The reverse of what I expected when I wrote it.

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