Hazel McHaffie

advanced directives

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!

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Reflections from the sofa

It’s all very well to theorise about how we would act in certain circumstances from a safe distance, but real life in all its chaos can feel very different from the calm scenarios of our speculations. And in that context I’ve experienced some very sobering realisations this past few weeks in relation to medical ethics. Don’t get me wrong, I’m not feeling maudlin or morbid; rather I have an unusual amount of quiet time on my hands to reflect at the moment. So I thought I’d share some of my reflections with you to illustrate my initial statement.

There’s a lot to be said for simply accepting whatever life throws at you and dealing with it as it happens. It also saves a lot of angst if you just go along with whatever doctors say, take whatever treatment they advise, leave all the thinking to other people. But I’ve spent decades pondering ethical questions and challenging received wisdom, and my brain is now hard-wired to do so. So, let me illustrate where I’ve been going with this.

QuestioningMy own mortality has been brought into sharp relief since my heart started doing crazy things and I’ve been in and out of hospitals and GP surgeries. Lying on the floor waiting for the next heartbeat, watching a monitor recording 200 beats a minute, feeling the world receding, concentrates the mind wonderfully.

I’ve been working in the field of medical ethics for decades so not surprisingly I’ve given due attention to my end-of-life wishes. My ideal? To die with dignity, free from suffering, in full possession of my mental faculties. Nothing unique there, then. If things go pear-shaped, I’d rather not prolong a life of disability, lack of cognitive function, or suffering. Fair enough. Given that I’m entirely reliant on medicine to stay alive, I even have the wherewithal at my disposal to effect my own death should I wish to, without breaking any laws or implicating anyone else, or indeed doing anything other than refusing treatment.

I’ve duly prepared myself and others: I’ve thought (ad nauseam) about my own tolerances and limits. I’ve written an advanced directive – and even acquired a medical signature for it. I’ve had the conversation (many) with my nearest and dearest. All textbook stuff so far.

But real life is full of fine lines and unknowns which make actually carrying out those clear wishes problematic. I won’t bore you with a comprehensive treatise on how far short of the textbook reality falls in my own case; merely give a couple of examples by way of illustration.

I have options. I could simply ignore all my current symptoms of dizziness, nausea, blackouts, arrhythmia, get into the car and drive. I could keep doing strenuous things until my heart just gives up. Either, in my judgement, would be totally irresponsible. And my family and friends and doctors and lawyers would certainly have plenty to say – legitimately – about such a reaction. No, I have little choice at this moment but to listen to my body and accept that all is not well, and I believe I have a moral duty to take certain actions in recognition of that.

My heart is not maintaining a steady rhythm. One of the consequences of this is that I’m currently at greatly increased risk of a stroke. But nobody knows how bad such a stroke might/will be. If I suddenly had one, would I want to be resuscitated or treated? Well, it would depend on how severe the consequences of the stroke would be, and nobody could predict that at the time of the stroke. By the time anyone does know, the decision to treat has already been made … hmmmm. And it could be that by then I’m no longer mentally competent to make a decision for myself … ahhhh. How quickly and easily events spiral out of control.

At the moment we don’t know what’s causing the problems; I’m scheduled for more tests. Once we have a better idea of the underlying diagnosis, other questions will surface. They’re contingent on the facts: cause, statistics, outcomes, possible treatments, side-effects, risks-benefits ratios, etc etc. My medical team can supply the information, but I’m the one who must assess what I want. No one can force me to have treatment against my wishes. But my tolerances, my wishes, might not square with those of my medical advisers who have their own professional and personal standards and ethics, although it has to be noted, the consequences of what they do to me will not be borne by them. My assessments might not match those of my family who could be left to cope with my disability or death or worse. For their sakes I might feel an obligation to choose something different from what I might wish for myself alone.

See what I mean? We might think we have it all buttoned up, but life is unpredictable and no man is an island.

Right to DieI’ve seen up close and personal the effect of heart problems like mine – both instant death from a heart attack (my father), and the slow decline of repeated strokes, vascular dementia, prolonged total dependency (my mother) – so I’m not naive. I know what I would choose for myself; my family do too, but it’s not at all clear to me at the moment that I shall actually be able to put my wishes into effect. I rehearsed these dilemmas with Adam O’Neill when I walked alongside him as he died from Motor Neurone Disease six or seven years ago. I’m rehearsing them again now in real life for myself. It’s an interesting occupation.

 

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