ethical issues
Theory v practice
I’ve studied the ethical issues around the subject;
I’ve talked to many many people with practical experience as either clinicians or patients or relatives;
I’ve even written a book on the subject – Over My Dead Body.
Yes, I’m talking about organ donation and transplantation.
So I knew the facts in theory, but this past week, I’ve had personal experience of the process, and I am impressed in a new and much more profound way by those who commit to this.
Years ago I wrote my own Advance Directive, and to witness it I chose a dear friend, a doctor, who would understand the significance of what I wanted in the event I couldn’t speak for myself – someone I could trust to ensure everything was legal and watertight and fully carried out. We shared so many values. He was twenty years younger than I, so I expected him to outlive me. But last week it was he who suffered a catastrophic haemorrhage in his brain from which there could be no meaningful recovery – exactly the kind of scenario I had envisaged for myself – and it was I who stood at his bedside and alongside his family.
He wanted his organs donated, and was on the register. Of course he did; that was the kind of altruistic person he was. But as I well knew, relatives can veto this request if they can’t bear the prospect. This family didn’t hesitate; they were behind his wishes one hundred percent, instantly comforted by the thought that this selfless act would bring new hope to other families. Now, though, I saw at first hand what they must endure in these circumstances. When we offer our organs in this way, how many of us really think what that will mean to our nearest and dearest? In the midst of their shock and grief, they must listen to and answer so many questions, they must spend so much time waiting and watching, and then have that last goodbye controlled by others.
I saw too, the sensitivity, the professionalism, of ICU staff who maintain the body in optimal condition for as long as needed, and of the transplant team who walk the family through the steps, gently, sensitive to their timing as well as the shelf-life of the organs and the desperate need of potential recipients.
In this case neither the family nor the staff could have handled things better. I was in awe of their commitment, their dedication and skill. My friend would have been so proud of them all, personally and professionally. And I have a new respect for anyone who commits to this delicate and painful transaction. They deserve our utmost respect and gratitude.
Farewell, my kind and gentle friend; you have done a most noble thing.
Ethical challenges – did anyone press the pause button?
Well, the world may have been on pause this year, but ethical issues have still raised their heads above the parapet periodically. However, I suspect most of them were lost in the cacophony of sound relating to the pandemic, so to illustrate, I’ll share a selection from the past three months up till yesterday.
December
Sweden’s gymnastic federation has now ruled that young athletes under the age of 18 will be able to train and compete as whichever gender they choose to identify as. They will not need to provide a doctor’s endorsement or any evidence of gender dysphoria.
Following a landmark High Court ruling, in the UK, new guidelines have been introduced by the NHS that make it necessary for children with gender dysphoria to obtain a court order before they are legally allowed to take puberty blockers. It is felt that under 16-year-olds are highly unlikely to fully understand the long-term risks and consequences. However the Tavistock and Portman NHS Trust which runs the UK’s only gender identity development service has said it will appeal against this ruling.
`November
New euthanasia rules are being introduced in the Netherlands – a country already known for its liberal social attitudes. Doctors will now be permitted to spike patients’ drinks before lethal injections are administered, in cases where it’s impossible to obtain informed consent from a person with an advanced directive who has already expressed a wish for help to die when the time is right, but who might resist the final act. The change comes in the wake of a court case where a doctor in a nursing home secretly slipped sedation into coffee for a lady at an advanced stage of dementia. Opponents of euthanasia are understandably alarmed by this widening of the limits in the medical code.
The English Health and Social Care Secretary, Matt Hancock, spelled out confirmation that travelling abroad for assisted dying constituted a legitimate reason to break lockdown restrictions.
It was an accidental error that led to the Oxford/Astro-Zeneca vaccine against Covid-19 reaching 90% efficacy. About 3000 of the more than 20,000 volunteer trial participants had been given just half the dose they should have received according to the research protocol. The ‘correct’ dose achieved just 62% efficacy. A serendipitous result. And a lucky break for whoever was responsible for the mistake!
October
The Dutch government approved plans to allow euthanasia for terminally ill children under the age of 12 who are suffering hopelessly and unbearably. Objectors see the thin end of the wedge visibly widening.
Legislation to allow medically assisted death was passed by the New Zealand parliament last year, but lawmakers delayed implementing it until the public had had their say in a referendum. Under this law, the End of Life Choice Act, a mentally sound adult who has a terminal illness with a life expectancy of less than six months, and who is experiencing unbearable suffering, can request a fatal dose of medication. New Zealanders have voted overwhelmingly to legalise this, which means the measure will now pass.
An angry backlash developed when the Women’s Prize for Fiction opened up its eligibility criteria to include transgender women.
Six consecutive days of protest followed a near-total ban on abortions in Poland by the constitutional court. A country of 38 million people, Poland already has some of the most restrictive abortion laws in Europe, and an estimated 80,000 – 120,000 Polish women travel abroad for terminations or seek illegal abortions each year.
The English government has been keen to make the process of applying for a Gender Recognition Certificate kinder, cheaper and less complicated. As part of a drive for greater equality, the Women and Equalities committee are in the process of examining whether the currently mandatory diagnosis of gender dysphoria should be dropped from the legal process of transitioning, whether transgender people should be required to live in their preferred gender for at least two years before formally transitioning, and how their rights can be better supported.
As it stands, parents in this country are allowed to terminate a pregnancy where the fetus has Down’s syndrome, at any point up to full term. Three adults with Down’s Syndrome are now launching a landmark legal challenge to the Government’s abortion legislation on the grounds that it makes them feel they shouldn’t exist and would be better off dead.
A former Public Health England medical director, Professor Paul Cosford, had never wanted to be a supporter of assisted dying, but after developing incurable lung cancer himself, changed his view and bravely declared his hand in the BMJ.
A poll of 29,000 BMA members found – for the first time – that a majority were in favour of medical professionals being able to prescribe life-ending drugs. The BMA’s position currently is that they are opposed to assisted dying.
A Dutch fertility doctor has been found to have fathered 17 children during the 1980s and 90s, with women who thought they were receiving sperm from anonymous donors.
September
After President Macron turned down his personal appeal for euthanasia, a Frenchman in his fifties, Alain Cocq, suffering from an incurable condition where the walls of his arteries stick together, announced he would refuse drink, food and medicine, and live stream his death. However Facebook said it would block this being broadcast on its forum. M Cocq subsequently said he had lost capacity for the fight, it was too difficult, and he accepted palliative care.
Last year staff at the Gender Identity Development Service raised serious concerns about safeguarding issues relating to the use of inhibitors and the speed or referral for treatment for young people. It transpired that England’s only NHS gender clinic for children knew about recommendations for puberty blockers from an internal review carried out 15 years previously, but failed to implement them. An independent review into these services is underway now to improve access to and delivery of support for these young people.
Who knew there were so many, huh? I shall never be short of material for my novels!
Missing …
I do love discovering a new author and devouring their books. It’s a bit like getting to know a new friend. One such recent discovery was Samantha Hayes. You might – or much more likely, might well not! – remember I posted a review of a psychological thriller by her at the beginning of August. It rang lots of bells with me, which sent me off in search of more of her books. I bought four – enough to give me a feel for the kind of writer she is, I thought.
Until You’re Mine which came out in 2013, was her first published thriller, so it was appropriate that this was the first one I read. Had her style changed over the years? Is she a predictable author? Would I find her later novels as exciting? I’m very aware that there are downsides to immersing oneself in the writings of a single author – even the best can pall somewhat with over-exposure.
Well, Hayes specialises in scary, skin-crawling tension, that’s for sure … and missing persons … and last minute unpredictable twists. I’ll give you a brief summary of each novel in chronological order of publication.
You Belong to Me (2015)
Three women have been terrified by stalkers. Two of them – Alexandra Stanford and Melanie Carter – are now dead. Both had red hair, both had infinity tattoos surgically removed from their bodies. The third one, Isabel Moore, also red haired with the same tattoo on her neck, vanished without trace.
DI Lorraine Fisher is haunted by the memory of Alexandra’s dead body. She feels responsible; Alex had reported her terror but there had been insufficient evidence for the police to do anything about her stalker, Jimmy Hardwick. Melanie’s case was different, but some time after her death, Lorraine is told about a man having hassled her too. Could this be the same stalker? Is there a serial killer on her patch?
Isabel Moore, the third woman, has hidden herself away in India, but she comes out of hiding when she receives word that both of her parents are dead; killed in a car crash. And to her horror, she learns that the driver of the car was Felix Darwin, the same controlling man who had made her life a living hell.
Three first person voices tell the story, all with serious issues. One of those voices is that of the seriously disturbed man who terrorises women. It’s scary stuff and certainly gets inside the experience of abusive control. I didn’t guess the final twist but I did find some of the action rather stretched my credulity.
In Too Deep (2016)
Gina Forrester is struggling – first her son Jacob dies; then her husband Rick disappears. Now someone is taunting her. Is she going mad? Who was watching her from inside that house in Evalina Street? Who really booked a week’s holiday in a luxury hotel for her? And what exactly is her daughter Hannah hiding from her? Everywhere she goes Gina sees ‘bits of Rick, as if he’s been blown into a million pieces‘, and she’s determined to gather them all up, piece him back together again.
Some of the clues are rather too clunky/unsubtle for my liking and I did guess the main twists well before they were revealed, but the question of how it would all resolve itself remained, and that tension kept me reading. Nothing, however, prepared me for the last few lines. (It was the final page of Until you’re Mine that blew me away too.)
The Reunion (2018)
It’s every parent’s worst nightmare. The Reunion conjures up the cold horror felt by a family when a thirteen year old girl, Lenni, vanishes. It’s 21 years ago now … and the family are in trouble once again. Her father is suffering from Alzheimer’s disease; family rifts are unresolved; someone is sending creepy messages saying the caller knows where Lenni is. It’s time to sell the property which gave such joy and security to the children and their friends. Lenni’s sister Claire decides they’ll have one last hurrah at the house and arranges a reunion of everyone from those halcyon days – which means all those who were present when Lenni actually went missing. But the week intended for reminiscence therapy for her father and healing for them all, turns into a nightmare. Another teenager goes missing. Crimes are committed. Trust is shaken.
This one ticks lots of boxes. It covers my kind of territory: eating disorders, dementia, family dynamics and secrets. Again the ending was a surprise, but for me, the writing isn’t as good as the first one of Hayes’ books I read, and that took the edge off my enjoyment.
So, overall, Samantha Hayes gets a big tick from me for her devious plotting, and for her breathless ‘well-I-didn’t-see-that-coming’ endings. And I’ve learned something more about how to tingle spines in a domestic psychological thriller. But comparisons show me that the component that grabs my interest most is the topic under review and its ethical dimensions. Part of my mind is sorting, seething, delving beneath the surface, wondering What would I do?