Sunday, 21 October 2012

Assisted Suicide: A Debate

This article first appeared on in April 2012. We reprint it here, entirely unabridged, to mark 10 years since the Dignitas clinic in Switzerland first opened its doors. With thanks to Dancing Giraffe and Peter McAllister, my collaborator and anti-AS opposite number on this piece.

Since this article was published, campaigner Tony Nicklinson has passed away. We have chosen to leave the article intact as a respectful tribute to the discussion that Mr. Nicklinson's efforts produced.

In March 2012, Tony Nicklinson approached the High Court seeking leave to pursue a clarification of the law surrounding assisted suicide. Mr Nicklinson had a massive stroke in 2005 while on holiday in Greece and was left paralysed save for slight movements of his head and eyes – a condition known as locked-in syndrome. His mind is unaffected and he is entirely conscious, but unable to move or communicate.

Since the stroke, Mr Nicklinson has been able to communicate only by using a voice synthesiser that interprets his blinking. When approached for comment following his appeal to the legal system, he has stated that he wishes the doctors in Athens had not saved his life. He described his current existence as, “dull, miserable, demeaning, undignified and intolerable”. The UK legal system is by now well-accustomed to such challenges.

In 2009, Debbie Purdy went through the courts in an effort to discover whether her husband would face prosecution if he accompanied her to a clinic such as Dignitas. The House of Lords agreed that it was a breach of her human rights not to know, particularly since this information was likely to play a large part in choosing when and how to end her life. The BBC reports the case of Tony Bland: “crushed in the Hillsborough disaster [...] allowed to die through the withdrawal of feeding tubes. He was in a persistent vegetative state after suffering severe brain damage and the judges said that it was in his best interests to be allowed to die.”

Yet despite these legal successes, and no shortage of discussion in debate amongst medical professionals and within the national press, little actual legal change has been effected. The consultation process for any change in the law is likely to be lengthy and complex, as befits such a weighty issue. Any change in the law, even a relatively minor one, will doubtless alter our society; our attitudes to disability will affect and be affected by the eventual outcome. To investigate the issue further, Peter McAllister and Christie Louise Tucker present a debate of the issues at hand.

Argument Against Assisted Suicide

Firstly I would like to make it clear, I am not an apologist for antediluvian values, nor is this a polemic discourse on the dangers to spirituality of assisted suicide. My intentions are as much a deep-seated personalisation as they are borne of any religious conviction. I do concede, however that religion has played its part in my disagreements to assisted suicide and indeed suicide, but not exclusively.

One of the most ardent opponents to assisted suicide is the Christian Faith. Suicide of any form is morally wrong because, having given life; God is the only one who has the right to take it away. The Fifth Commandment, 'Thou shalt not kill' (Exodus 20, verse 13), makes the point quite unequivocally. I have always found this particular Commandment non-negotiable.

There are arguments raising the point about serious concerns in legislating assisted suicide due to unsavoury family members and shifty doctors who would rather persuade a person to end their life, against the person’s will. Are there selfish reasons involved from particular family members? Do they stand to gain financially? Surely their motives are not borne out of a selfless empathy?

In free will there is another potential problem, that of capacity. Is the person contemplating assisted suicide competent to make such a decision? Are the drugs that people take for pain relief compromising their ability to make clear decisions? From experience, yes this is a factor. Psychiatric conditions may make someone desire suicide. Conditions such as Depression and Schizophrenia disorder can go undiagnosed; people who suffer such disorders could in fact choose to be unnecessarily supported to take their own lives?

Many people fear that assisted suicide will create a climate in which some people are pressured into it. The old, the poor, or minorities and other vulnerable groups might be persuaded to shorten their lives, rather than to "burden" their families. Will the definition stop short of a human’s ability to be productive?

People with severe and enduring disabilities may in turn have to justify staying alive. Is this a situation we really want to embrace? Writers such as The Times columnist, Melanie Reid use emotional tactics to further the cause for assisted suicide. But in my view this masks a very self-pitying nature, expounding their self-interested agenda and turning it into an exercise in scaremongering a civilised society.

Argument For Assisted Suicide

The distinction between suicide and physician-assisted dying is at times subtle, but always important. For a coroner to return a clear verdict of suicide, the Government’s legal definition states that it must be apparent that the deceased, “took their own life whilst the balance of their mind was disturbed.” But for a change of the laws surrounding assisted suicide to work, establishing sound mind prior to acting would be paramount.

This is already the case at the Dignitas clinic in Switzerland, where each client must consult an expert psychiatrist and submit medical records to an affiliated doctor before a prescription can be written, and there can be no doubting the value and importance of this requirement. Currently the only medical procedure in the UK to require the consent of two doctors is an elective termination; of course assisted suicide should be the same, and for the same reasons.

The loudest protests against changes to the law are usually from religious groups arguing the sanctity of life, or those concerned about potential misuse of the eventual act. But when retired American Episcopalian bishop, John Shelby Spong states that “the right to a good death is a basic human freedom”, it’s plain that the debate is a long way from conclusion.

Much is made of “valuing life”, the implication being that those who support assisted suicide lack this conviction. Nothing could be further from the truth. Valuing a worthwhile and fulfilling life is central to our argument; not wanting to continue a life shattered by absolute incapacity is merely a continuation of this.

It’s vital to make clear that it is severe incapacity that is under discussion here – the end stages of degenerative disease, or massive injuries caused by accident or injury. The argument is made best by the individuals attending court to challenge the law, and those close to them: the initiator of this current challenge, Tony Nicklinson, describes his life as “dull, miserable, demeaning, undignified and intolerable.” The parents of Daniel James, who ended his life at a Dignitas clinic in 2008, characterised their son as "an intelligent young man of sound mind" who was "not prepared to live what he felt was a second-class existence".

A southern African saying once related to the author of this article comes to mind; upon the death of a relative, the grieving family are reminded to give thanks to God for “a long life, well lived.” Even non-religious readers will acknowledge the truth and value in this. This is truly when assisted suicide should be considered; at the end of a long and full life, when all other options have been exhausted and the loss of faculty is too great for the individual to accommodate.

In Conclusion

The purpose of the assisted suicide debate is not to imply that the lives of disabled people, or anyone else, are in any way miserable or intolerable. Instead, the aim is to enable individuals to make their own decision about when, where and how to die, and to do so with dignity and comfort.

At present, someone seeking physician-assisted suicide must travel to the Dignitas clinic in Switzerland: previously an anonymous, nondescript concrete tower block just outside Zurich, now a pleasant house in a residential district of the city. Many opt to make the journey alone; to have a relative accompany them could expose their companion to prosecution for attempting to “aid, abet, counsel or procure” suicide, a charge that carries a 14-year sentence.

Both sides of the argument talk about dignity, quality of life, control, and ethics, but in the end, the decision is nothing more than a personal choice. What is needed now is discussion – in Parliament, between ministers and the sick and dying, between doctors, between couples and within families. The onus should not be on individuals to ask permission to be allowed to die peacefully.

Assisted suicide is an act of mercy, no less than the actions of a doctor or nurse on any other day in their career. The real enemy is silence and hypocrisy; wishing a dignified death for oneself and others isn’t selfish or unfeeling, it’s human. And our humanity is what necessitates the freedom to make our choice.


Saturday, 20 October 2012

Doctor, Doctor, Are All These Pills Really Necessary?

It’s always the same; you wait a week for a story and two come along at once. Just as I was settling down to write about Ben Goldacre’s Bad Pharma, the BBC broke a story reporting that doctors will now face annual appraisals and five-yearly license revalidations. Whereas a doctor could previously work for 40 years without further testing or formal training, as Goldacre’s book observes, these new proposals will ensure that from December, their clinical knowledge and competency will be exposed to regular scrutiny.

In the coverage that resulted from the GMC/DoH announcement, we learnt that perhaps 0.7 per cent of doctors have shortfalls that would be regarded as threats to patient safety. The Telegraph talks about “more than 1,000 bad doctors” – with 129 foundation trusts and 151 primary care trusts in England, this works out to three or four per trust. This might not sound like many, but it’s enough to have the GMC and the Health Secretary worried, and is more worrying still if you’re actually receiving medical treatment.

And here we reach the heart of the matter – public perception. We might like to watch medical dramas, but our understanding of present clinical concerns is far sketchier. Fortunately for the patient, they need never consider medical ethics or whether the benefits of surgery outweigh the risks; they are only compelled to attend appointments, submit to examination, take the prescription they’re offered, languish on a waiting list and sign a consent form. We complain about cuts, budgets and those waiting lists, but we forget that we’re benefitting from a system that remains free at the point of cost – many despair at the state of the NHS, but many others know that they’d be at a loss on their own without it.

For the average patient, seeing phrases like “clitoral enlargement” or “suicidal thoughts or behaviour” on an information sheet, or noting that their newly-prescribed anti-emetic was originally an antipsychotic and can cause dangerous side-effects, is very alarming. Are these conditions permanent, or reversible upon withdrawal? Can I really not even have one drink on these antibiotics? How likely is it they’ll make my contraceptive pill fail? How serious is this headache? Do I need an aspirin, or an ambulance? Who do we even take our questions to? The pharmacist can discuss side-effects and interactions, but may lack the knowledge of the existing condition or potential prognosis to make the right call.

When you consider the complex nature of drug therapy for even a relatively simple symptom, it’s easy to see why a clinician must train for so long: antihistamines used as sleeping pills, antipsychotics for nausea, blood pressure drugs for erectile dysfunction, anticonvulsants for anxiety and migraine, and anti-depressants for seemingly everyone. While each specialism has their own arsenal of relevant drugs, and each consultant will have his own personal favourites, an ongoing and intractable condition can often lead to secondary or off-license uses for unexpected or seemingly unrelated drugs. In this case, a side-effect can become a positive boon.

A number of years ago, a charity I worked for began to see a large number of people with various conditions all being prescribed the same drug; previously used to treat epilepsy, it was now being prescribed for anxiety, depression, personality disorders, neuropathic pain in diabetes, nerve damage through trauma, insomnia, migraines, cluster headaches and sundry other problems. Some patients saw considerable improvements; still others experienced disruptive headaches, terrible nightmares, and serious confusion. Some had it far worse; they found themselves troubled by unwelcome ideas that disrupted their thinking, by suicidal thoughts and urges. It seemed as if the local doctors were throwing the drug at everyone just to see where it worked; we considered ourselves lucky that none of our clients had actually given in to the suggestions and harmed themselves, as had been seen previously with certain antidepressant medications.

As Ben Goldacre observes in his book, doctors cease their lengthy tuition and “spend forty years practising medicine, with very little formal education after their initial training. Medicine changes completely in four decades, and as they try to keep up, doctors are bombarded with information: from adverts that misrepresent the benefits and risks of new medicines; from sales reps who spy on patients’ confidential prescribing records; from colleagues who are quietly paid by drugs companies; from ‘teaching’that is sponsored by industry; from independent ‘academic’ journals that are quietly written by drug company employees; and worse.”

 Perhaps the new checks, dubbed “medical MOTs” (by people who have forgotten, or don’t care, what “MOT” stands for) will assist with this – if a lack of ongoing training make it easy for pharmaceutical companies to exploit knowledge gaps, then maybe identifying and sealing these gaps will make it harder for them to exert their considerable influence. Perhaps this recommendation was introduced as a response to concerns like those shared by Goldacre; perhaps the timing is purely coincidental. We’ll never know, but we can hope that the plans will lead to improvements in clinical education and patient care. We must hope so; we all stand to benefit from it.

This is, of course, the opinion of a lay individual who has spent eight years depending on the NHS’ best and brightest – the pain clinic consultant willing to exhaust every possibility, the patient and gentle GP who took the time to explain the surgery and was more annoyed by the six-month waiting list than I was, the safety net that provides free prescriptions, regardless of quantity or regularity, when one’s luck runs out and unemployment bites. I’ve seen the NHS at its worst, and at its very best.

It is doubtlessly flawed – jetlagged by bureaucracy, slowed by overuse, hobbled by budgets and dented by news story after news story bemoaning all of these faults and more – but it remains the best system available to us. In the main, those of us born after 1950 take it entirely for granted, and those who remember the public reaction to its inception are becoming thin on the ground. It’s been accused of being alternately bloated and pinched, and its relationship with pharmaceutical companies is obviously in need of close examination, but it remains one of our greatest assets. It is, in every possible sense, a lifesaver.

Monday, 15 October 2012

The Ghost of Sexism Present

When you're of a mind to set the world to rights, even listening to the radio can be fraught with danger. Having resisted the pull of commercial TV and radio for a quarter of a century, I finally yielded. Contemporary music criticism has been done more elegantly by more knowledgable writers elsewhere, so let us just conclude that swapping a non-commercial station for a commercial one was ultimately trading one set of frustrations for another.

I'd managed to successfully limit my exposure to awful music, but had opened myself up to a whole new world of problems: radio advertising. Eschewing my local station for a national one took off most of the rough edges, particularly when it came to maddening double-glazing jingles, but it was while listening to aforesaid national digital station that I encountered the Ghost of Sexism Present.

Plunged into my own Dickensian fantasy, I quickly assessed my surroundings; the Ghost of Sexism Past faded away with the passing of grubby seaside postcards, the miniskirted typist-cum-secretary and woeful situation comedies; in short, around the time the '70s surrendered to the rampaging '80s. The Ghost of Sexism Future, more's the pity, does not limit its moaning and chain-rattling to the company of women. Instead, as did Dickens' rosy-cheeked host, it spreads its arms wide and cries "come forth, and know me better, man!"

This restless spirit, made bold by years of uncorrected manifestations and liberally sprinkled phantasmagoria, approaches both men and women with equal vigour. It's subtle, though, and has distinct approaches for each gender. Its main failing, as with so many bad teachers and politicians, is that it tries to tell us what, and how, we should think and feel. This afternoon, as if to demonstrate its multiplicity, it taunted me with whispered tales of spent headlight bulbs in the darkening autumn night.

It told me that I wouldn't be able to change the bulb - not because of my feminine dearth of technical skill, but because my nails - obviously long, and immaculately lacquered - would weaken and break the very second I lifted a screwdriver. Apparently this is undesirable. Speaking as someone that frequently uses their thumbnails as a makeshift flathead screwdriver for the purposes of spectacle repair and basic home maintenance, my suspicion was piqued from the start.

Next, as if sensing my mistrust, it endeavoured to convince me that my husband - which I don't actually have - would be unwilling or unable to do the job for me. Because of course, as a helpless princess awaiting rescue with attendant melancholy, only a man could possibly fix my car for me. Whether it was due to fecklessness, laziness or technical ineptness, my husband would never fix my car. Of course he won't; like I said, I don't have either.

But, as with Scrooge's ghosts, this entity's message was one of hope as well as foreboding:  a modern-day white knight could fix the thing for me. He would do this on the condition that I return to my house (haven't one of those, either) and remark to my pseudo-husband that I'd found "a real man" to complete the Sisyphean task that so far had defeated both of us. Joy! Jubilation! Some orange-clad spanner with a spanner can suck his teeth at me and charge me a nominal fee for performing a chore that my obligatory feminine beauty rituals had until now prohibited me from achieving! Sing Hallelujah, and pass the bucket...

The job of feminism today is basically as it always was; to achieve parity and equality between the sexes. It must achieve this in every sphere of our lives; from the workplace, to the bedroom, to the TV screen. And at the same time that it combats pay and hiring discrepancies, social expectations, threats to healthcare provision, sexual aggression, domestic violence, genital mutilation and wrongheaded laws, it must also manage the hinterland between the experiences of Team XX and Team XY.

When women first cried out for equality, they were addressing the gulf of power and possibility that existed between men and women at a time when, if you wanted to get your entitled male hands on a woman's property, you could simply have her conveniently shipped off to the nearest insane asylum. While we have made headway enough to allow us to own property, we're still insulted when it comes to obtaining more or maintaining what we already possess.

I don't believe that all men, as a symptom of being "a bit blokey", are truly feckless, impractical, selfish and lazy, any more than I believe that women really are all vain, duplicitous, gossipy and obsessed with 'naughty' food and effective cleaning products. But this is what advertising says to us, and I resent its malicious whisper. The cry for equality, now and in years gone by, was an effort to improve the lot of everyone involved, men and women both.

Had I been born male, I would have resented the implications made about me as surely and as strongly as I do having been born female. When we push to attain an equal footing, we aim for higher ground, not the reeking swamp of mutual negation. The aim should be mutual improvement, not the denigration of both. In literature and film, we use prayer and religious iconography to lay restless spirits; in reality, our toolkit is different, but no less important. Words, balanced, thoughtful and tenacious, are our holy water and crucifix. The power of Christ may not compel advertisers, but the power of popular opinion certainly can.

Each of the spirits that visited Ebeneezer Scrooge vanished again within the course of one Christmas Eve. Can we expect our restless phantom to disappear overnight? No, I fear not; but we can tear away the clanking chains and unmask it like the Scooby-Doo schmuck it really is.

Wednesday, 10 October 2012

When I Say I Grew Up On An Estate, I Didn't Mean Downton Abbey

Earlier this year, the F Word ran an article concerning feminism and working-class women. The piece included a quote from a teacher in a senior school in Lincoln, “slap bang in the middle of one of the Midlands' largest housing estates,” who is concerned about that lack of feminist influence her students receive.
"When they get older, middle-class girls know the talk, the language to use, and so they have louder voices when it comes to the feminist movement. They're more educated, more confident, and feel they deserve opinions, maybe because their role models were professional women with assertive attitudes.  You're not going to be like that if your mum struggled on benefits. Girls from low-income families have had to struggle more so they can be excellent at debating, but not necessarily in the very intellectual way that debating is taught in private schools. It's not deliberate, but our voices and issues can be drowned out, so we don't relate to it all because we're not part of it."

The basic premise of the article is correct; yes, feminism should be open to women of all classes. But to achieve that, we must shed our prejudices about those who belong to other classes. The patronising tone so often adopted when discussing working-class women bears an unpleasant aftertaste of the treatment disabled feminists and feminists of colour still resist – we are a subject to be written presumptuously about, not a group to accept contributions and insight from. It seems they would sooner discuss us than listen to us; rather talk about us than to us.
Rather than being limited by watching a mother “struggle on benefits”, some children are enlightened by it; they develop tenacity and resolve, and a precocious understanding of the workings of the world. While the teacher grants that “girls from low-income families have had to struggle more so they can be excellent at debating“, she still condemns the absence of “The Guardian's women's section lying on the coffee table, or political discussion ringing around their ears”, which she takes as an indication that “they are less likely to access feminist discussion early on.”
But why ought this be the case? Who is more inclined to espouse feminist principles; a single mother, struggling with underemployment, a feckless ex, a tiny income and no childcare, or comfortable middle-class couple with two jobs, two cars, and an after-school childminder? Who, more importantly, is this childminder that the middle-class mother in full-time employment is so beholden to? Even if they don’t know it, the girls in question will be absorbing feminist principles like background radiation – they might not discuss the works of Germaine Greer and Camille Paglia around the dinner table, but they’ve little doubt about their own ability to hold their own in a world that's set against them.
The teacher’s reference to “benefits” in general seems to expose ignorance of the system; are we discussing unemployment benefit, disability benefit, child support, or just working family tax credit? Or, to this woman, are “benefits” just something that only poor people need concern themselves with, like puffa jackets, pound shops and ITV?
In the interests of transparency, I should explain that the reason I’m so provoked by this is because that’s me they’re talking about; a writer for the F Word has just insulted my mum. Are my opinions worth less because I wasn’t dressed in Boden or sent on skiing holidays as a child? Because we had spaghetti on toast, not penne al pesto? Tesco Value rather than Waitrose? Were my lecturers at University correct – should I have taken voice training classes to eradicate the wide Essex sound? If the cut-glass vowels of the Fawcett Society fundraiser at the end of the line are anything to go by, the answer’s a well-enunciated “yes”.
What writers of articles like this seems to overlook is that anyone, anyone at all, can be compelled to claim benefits – an employment advice service in the next town over regularly sees doctors and lawyers claiming Jobseekers’ Allowance; even the most qualified and privileged can fall ill and require sickness benefits. What’s more, the authors seem to be missing a salient and important point: high intelligence leads to increased likelihood of mental illness, as do divorce and unemployment. Bouts of mental ill-health are statistically likely to lead to periods of unemployment, financial difficulties and longer-term incapacity – all factors that drive an individual to seek financial support from the State.
For too long commentators have disseminated the myth that only the working classes – ill-educated, understimulated, petty, ignorant or deprived – need to claim benefits. For too long, also, have they ignored the improved social mobility that post-war society has facilitated. Does the education process make one middle-class? Maybe the increased earning power and career potential of a successful graduate do lead to a perspective shift, entry into a brave new world of mortgages, not housing benefit; dinner parties, not chips on the way home. But few people that grew up in an impoverished household will forget their early years – however much they might want to. For many, those early experiences will be what drives them on through college and university, always pushing onwards to better results, more pay, a less uncertain future. And when they reach that point, if it takes two years or twenty, they’ll be proud, anxious for dignity and recognition. And after all that, someone who doesn’t know them, who has only a tiny window onto their experiences, belittles their struggle, repudiates their opinion, and – most heinous of all – insults their mum.