Hazel McHaffie

assisted dying

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!

 

 

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Ethical issues for everyone

I’ve been taking stock of where I am in my writing career of late and I thought I’d share with you a couple of noteworthy things from this appraisal.

The first relates to the prevalence of my subject matter.

To one side of my desk I have three large boxes full of folders. Each file contains material related to topics I’m interested in; each one a potential novel. (Yep, you’ve got the picture. I’m obsessive. Nothing newsworthy there.) But some of these files are very thick; one topic even runs to two volumes. And reviewing the contents, I’m reminded of how often I cut things out of the daily papers to slip into the said folders. Deduction? My kind of subjects must help sell newspapers; ordinary people must be interested in them.

Alert to this, I did a mini survey. Result? Just on one day this week there was something on
– mental illness (OCD and depression and self harming all dealt with)
– organ transplantation (growing human organs inside other mammals)
– assisted suicide (the BMA’s position: should doctors to be free to follow their consciences?)
– body image and identity (eating disorders, celebrities’ experiences)
– balance of risks and benefits (related to heart disease)
– care of the elderly and those with dementia
All on just one day in one newspaper.

Right to DieThe second point relates to the currency of my subject matter.

When I start planning a new book, I do try to imagine life a bit ahead of present understanding so that when it comes out it’s still relevant and topical, but I’ve been surprised at how much these issues remain current. Take assisted dying, for instance. My novel, Right to Die, was published in 2008. In the eight years since then parliament has revisited the issue repeatedly; professional bodies have regularly debated the pros and cons; a considerable number of high profile cases have come to public attention; campaigns have been fought. It’s still a hot potato and it doesn’t show any sign of cooling any time soon.

Remember-RememberThen there’s dementia. Remember Remember came out in 2010, but the ethical dilemmas it explores are as thorny today as they were then. What’s more, the number of families grappling with them is growing as the human lifespan increases; more and more individuals are exercised by the questions.

I’ve been working on an outline for the tenth and eleventh books recently and I’m staggered by the thickness of the folders on those two topics. I’m having to write notes of notes, and lists of lists, to sort out the wealth of facts and the evolution of thinking and knowledge, in order to establish what arguments and counter-arguments obtain today, and to start developing a coherent plot-line. When I first set out on my pathway to becoming a novelist, a very highly regarded agent advised me to leave my academic background behind me. I knew what he meant: the meticulous research mustn’t show through in the finished product. However, from my point of view, those decades as an university researcher stand me in good stead when it comes to delving deep, sifting and sorting facts, and understanding science.

Of course, I’m well aware that at some point I shall have to put away my writing pen, my days as an author done. But it certainly won’t be because I’ve run out of subject matter! Medical ethics is very much alive and thriving.

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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.

Thinking about a solutionA 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?

QuestioningFrom 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?

ImaginingThe 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.)

 

 

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The Kindness of Strangers

This past weekend, on 1 November 2014, a beautiful and highly intelligent young American woman of 29 calmly and deliberately took her own life in Oregon, with the tacit agreement of those who loved her devotedly. She and her new husband moved there from California so that she could legally take this step.

Though I never knew her, I feel sad that Brittany Maynard has missed out on so much that is wonderful in life. Nevertheless I understand her actions: she was terminally ill with a brain tumour and she did not want to deteriorate slowly and unpleasantly. Who can blame her? As she said herself: ‘I do not want to die. But I am dying. And I want to die on my own terms.’

As it happens, I’ve been identifying more closely with this vexed issue of assisted death than usual this week, because while Brittany was calmly contemplating taking a fatal dose of prescription medicine, doctors were actually working hard to save my life.

After seven decades of valiant but largely taken-for-granted service, my old heart decided to make its presence felt and create a bit of havoc in my life.Get well soon It has set a few records in speed and variety of rhythm over the past week, and when this vital organ is pounding along at 200 beats per minute and assorted members of the medical fraternity are glued to the monitors; when my GP tells my spouse that if ‘anything happens’ between the surgery and hospital, he should pull over and dial 999 – ‘no heroics’; the prospect of death seems unusually close! What’s more, as I am now officially at greatly increased risk of sudden death, heart attack, stroke or other cerebro-vascular disasters, my mind is focusing rather more acutely on what I would choose to happen to me, if I were able to influence anything. And what control I wish to presume over the outcomes. Hmmm.

This is a personal matter for me to ponder, and to some extent share with my loved ones. But the thing I’m carrying away with me from this little skirmish with serious illness is the kindness of strangers. These doctors and nurses who have never seen me before, who will probably never meet me again, who treat hundreds of thousands of assorted odd-bods, have treated me with such friendly efficiency, and respect and dignity and warmth. They’ve even returned expressly to voice their pleasure at my recovery. I’ve been both touched and humbled.

The NHS might indeed often get a bad press – even from its own practitioners! – but when it’s a matter of life and death they can certainly pull out all the stops. I am hugely in their debt. They went well beyond the call of duty for me.

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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? …

Perusing the newspapers

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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Shutterstock image

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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Shutterstock image

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 ……?

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Assisted dying wrapped in silk

Photo courtesy of Photolia

Image courtesy of Fotolia

Joanna is a young woman in constant pain. She’s tetraplegic following a car accident, totally dependent on others for her every need 24 hours of every day, and facing the prospect of another 20-30 years in a similar state. A bright nimble brain in a paralysed body. Trapped. She isn’t physically able to end her own life; the law doesn’t allow her to be killed by others. No wonder she’s depressed.

But so too, is her mother Sarah, trapped with her. She asserts that her daughter said on many occasions, ‘If you loved me, you’d kill me,’ although, as the prosecuting lawyer reminded her, ‘We only have your word for that.’ And yes, Sarah is in court because she has admitted to killing Jo with a lethal cocktail of drugs.

On the surface it looks like a straightforward battle about the morality of helping someone to die. It’s not until Sarah is under questioning that her own defence lawyer senses something is wrong with her testimony. Who is she protecting? What did actually happen in that bedroom?

That was the essence of the story in the courtroom drama, Silk, on BBC1 on Monday 10 March. It’s a programme I enjoy watching normally – although I confess the private shenanigans between the characters often make me cringe. When the topics creep into my areas of particular interest I’m doubly hooked. And this particular storyline was particularly timely because the papers at the weekend were predicting significant developments in the legalisation of assisted suicide. In the next airing of the Assisted Dying Bill, due in a few months, Conservative and Liberal Democrat MPs and peers – including Coalition ministers – will be given a free vote on the Bill that would enable terminally ill patients to be helped to die. And although neither the prime minister nor his deputy are in favour of a change in the law, the Government has now made it clear that it would not stand in the way of such a Bill where strict safeguards are in place. (Incidentally Joanna wouldn’t qualify as she’s not terminally ill, though she is in constant pain.)

Of course, opposition remains. Doctors, disability campaigners and church leaders are still cautioning that a relaxation in the law could put vulnerable people at risk, and damage the doctor-patient relationship. Furthermore, it’s argued, this is a dangerous time to consider a relaxation because of ‘an atmosphere of growing hostility towards disabled and elderly people‘ in the wake of the recession.

Is there ever a good time? Which way would you vote? Given your own circumstances? Or if you were Sarah, experiencing at first hand the impact of extreme disability of your beloved daughter, and on the rest of the family? Or if you were Joanna herself, facing unremitting pain and indignity for the rest of your life?

At the same time as this play was airing, I was reading Debbie Purdy‘s book, It’s Not Because I Want To Die. You’ll remember she’s the doughty fighter with MS who fought through the courts for the right of her husband to help her die at a time of her choosing, without fear of prosecution. And as the title of her book suggests, she contends that the reassurance that he would not be prosecuted means that she can prolong her life with impunity – prolong not shorten, please note. But, wait a minute … the new Bill wouldn’t help her either because she’s not terminally ill. Hmmm. So who exactly needs new legislation?

I’m with a certain AMS Hutton-Wilson writing in the letter pages of the Telegraph on 11 March: ‘The people most in need of a change in the law are not the terminally ill but those who, although still mentally capable of making an informed judgment and expressing it clearly, have had their quality of life profoundly compromised by conditions leading to an inability to talk, swallow or breathe without difficulty.’

What would you do about them?

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Going gently into that good night

Until this week I have to admit that I’ve never watched the soap, Coronation Street. But there was so much hype about Monday’s double bill featuring the suicide of a character called Hayley Cropper, that I felt compelled to see it. After all, exploring real moral questions through fiction is what I’m all about.

For those of you who don’t know, (as I understand it) Hayley (once Harold) is a transgender person who survived local prejudice, married cafe owner Roy, and developed pancreatic cancer. Monday was the day she had resolved to end her suffering by taking a self-administered (don’t even touch the glass, Roy) cocktail of drugs. Cocktail of drugsRoy is hoping against hope that when it comes to it she’ll change her mind and they’ll have longer together. ‘There’s still joy to be had.

I came to this my first episode without any emotional attachments to the Croppers, but the whole scene was handled so gently and sensitively that the millions of viewers for whom this represented a personal tragedy must have found it harrowing. It felt as if we were in that flat with them. The touching last conversations … Hayley’s struggle to iron Roy’s best shirt so he turns up respectably clad for her funeral … Roy’s decision not to have a ‘special’ on the cafe menu on this terrible day … the anxiety and concern of the neighbours … all provided heart-wrenching pathos to the last hours of this desperately sick woman. I haven’t been party to her struggles over the past few months but I have seen other real people die of this horrible illness, and in a way their suffering overlaid Hayley’s for me. Seeing her quiet smile as the music of Vaughn Williams’ The Lark Ascending stole through the room, listening to her settled resolution, watching her determined drinking of that fatal cocktail, the peaceful waiting – I was willing all the assorted well-wishers not to disturb their precious last hours together. This was a moment for absolute privacy and solemnity. And from where I sat, ITV got most of it right.

Whatever we think of the issue of assisted dying, or suicide, or the right to die, this programme provided a useful vehicle to promote discussion. Of the tragic situations for which there are no good options. Of the emotional and physical impact of terrible diseases. Of our responses, our prejudices, our beliefs. Of the current law.

And indeed, Lord Falconer, the former Lord Chancellor, is currently working towards launching another bid in real life to legalise assisted dying under certain clearly specified conditions which will reopen the hornets’ nest for sure. So, hats off to another screenwriter and to ITV for bravely raising the issue in such a way as to get ordinary people thinking about these vexed issues for themselves. If you cared about Hayley’s plight, if you were angry with her for doing what she did, if you threw things at the TV, if you wrote to ITV complaining about their depiction of a suicide … then spare a thought for those for whom such dramas are lived realities. What would your answer be?

A safe distance away I might share another such challenging film production – but that’s for another time. Today belongs to Coronation Street.

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The Universe versus Alex Woods

I’m happy to report that the new computer is flying along and overall I’m loving it. Still a few things to get the hang of, but happily writing my blog is not one of them. So here goes.

As you may (or may not) recall, I went to hear Gavin Extence speaking at the Book Festival in August. He wasn’t actually talking about his book, The Universe Versus Alex Woods, (he was presenting the case for assisted dying in a debate) but nevertheless, I bought a copy – of course I did; it’s his version of my Right to Die! And I’ve now finished reading it.Two novels about assisted dyingThe Universe Versus Alex Woods (perfect title, by the way) is very readable, touching and amusing, and I enjoyed it, but it wasn’t what I was expecting. Extence says himself he didn’t set out to deal with assisted dying; he wanted to write about this teenager who’s had a difficult life who goes on to perform an act of unconventional selfless heroism.

Which probably accounts for the structure. We know from the outset that Alex Woods is connected to Mr Peterson when he’s stopped at Dover customs with an urn of ashes and 113 grams of marijuana, but it takes Gavin Extence 100 pages to get around to the two meeting. And another 100 pages to present the kernel of the story. First we must get to know Alex Woods: details of his extraordinary accident (hit on the head by a 2.3 kilogram meteorite travelling at 200 miles an hour) and the consequences of his resultant epileptic fits, his puny person, his zany mother, bullying, difficult relationships, his own bizarre responses, his regular sparring with big moral questions and social niceties.

We know far less about Mr Peterson, a rather bad tempered but grieving widower, very attached to his dog and his books. He and Alex are thrown together when Alex has to do penance for a crime he didn’t commit, but they discover mutual interests and develop a strange but warmly wholesome relationship. Through Alex’s eyes Mr Peterson becomes a sparky character given to wise words and robust common sense.

So, although Alex is a teenager, below the age of accepted moral competence, he is the only person Mr Peterson confides in when he develops the intractable neurodegenerative disease, Progressive Supranuclear Palsy. It’s a heavy burden for Alex to carry.

PSP might well ring vague bells for you. Remember the real-life case a few years ago, plastered all over the papers, headline news on TV, of the doctor, Anne Turner, who left 100 letters saying, ‘By the time you read this I’ll be dead‘? She’d already nursed her husband through something similar, and she was determined not to linger with it herself. Her three grown up children accompanied her to Switzerland where she drank a lethal dose of medicine. Her decision and the reactions of her family and the authorities were all replayed on TV.

Anyway, Mr Peterson knows he’s destined to lose his ability to take action before too long and he’s mapped out a pathway for himself. Only things don’t go according to plan, and Alex becomes embroiled in his exit. The police characterise Alex as vulnerable – ‘intelligent but extremely naive, and possibly disturbed,’ brain damaged, fatherless, friendless, with a mother of ‘dubious credentials and capabilities‘. He’s easily manipulated, his ‘ethical abilities‘ have been ‘compromised‘. The media spin him into a violent sociopath with an inability to feel emotion, the product of a sinister religious cult, with a troubled record as a young teenager.

Mr Peterson’s unsound judgement is beyond doubt in the eyes of the press: he’s psychologically damaged by the conflict in Vietnam; he’s recently bereaved; he’s been sectioned and incarcerated in a psychiatric ward after attempting suicide; he’s been fraternising with a minor …  they weave all sorts of innuendos through this inexplicable relationship.

We, of course, know the reality. Both Alex and Mr Peterson are into moral decision-making in a big way, analysing things in private and together to tease out the right course of action. As the old man says: ‘Don’t ever surrender your right to make your own moral decisions, kid.

Mr Peterson sums up his predicament succinctly while he’s still in the psychiatric ward after attempting suicide: ‘I don’t want to die, kid. No one wants to die.  But you know where I’m heading a little down the line. My future’s already written. If I don’t want to face that, there’s only one way out.’ And later: ‘I have a life worth living at the moment and I might still have a life worth living six months from now. Even a year from now. I don’t know. But what I do know is that sooner or later the balance is going to tip. Sooner or later I’m gonna have a life I can no longer bear. And by that time, chances are there won’t be a damn thing I can do about it. I’ll be in some kind of hospice. I won’t be able to stand or speak, let alone take the necessary steps to end it all. That’s what’s unbearable.’

 And Alex understands that: ‘Knowing that there was a way out, and that his suffering was not going to become unendurable, was the one thing that allowed Mr Peterson to go on living, much longer than he would otherwise have wanted. It was the weeks leading up to our pact that were shrouded in darkness and despair; after its inception, life became a meaningful prospect once more.’

This is an ambitious debut novel. Extence has delved deep and wide  – into human relationships, epilepsy, meteorology, astronomy, tarot card reading, mathematics, theoretical physics, literature, classical music, neurological disease … Some aspects I found rather less than convincing – the accident, the escape, the ending; but for the most part he has woven an intricate and compelling story. And he’s gone right to the kernel of the ethical debate, so this book sits comfortable in my list of novels dealing with assisted dying.

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Assisted dying: whither next?

Wednesday afternoon

Here I am in a lecture theatre in Bristo Square. Outside the Fringe is in full giddy flight; inside faces are serious, the mood expectant. This is the debate organised by the Mason Institute for Medicine, Life Sciences and the Law, in conjunction with Sparkle and Dark Theatre Company, to which I was invited a while back, and I’m feeling devoutly thankful I’m on the listening side of the room with about 60 other folk, not in one of the hot seats on the other side of the table.

Right to DieAs regular visitors to this blog know, I wrote a book on this subject, called Right to Die. I even appeared at the Edinburgh International Book Festival to talk about it. But I still agonise over the issues. The arguments and counter-arguments are so complex and emotive, the issues so finely nuanced, and every time I listen to them I feel huge sympathy for each side. As preparation for today I’ve been reading relevant papers – eg Margot MacDonald’s draft Assisted Suicide (Scotland) Bill, and a position statement from The Scottish Council for Human Bioethics – and I don’t envy anyone having to hold all this stuff in their heads. I went crazy with a highlighter, and even so only just stayed abreast of the pros and cons.

So who are these folk who’re putting their heads above the parapet? Patrick Harvey, MSP, Professor Graeme Laurie (Professor of Medical Jurisprudence at the University of Edinburgh), Professor Calum McKellar (Scottish Council for Human Bioethics) and Lawrence Illsley (Sparkle and Dark Theatre Company). In the chair, broadcaster Sheena McDonald.

We hear the usual stuff: the present legal position; how Margot McDonald’s proposed new bill differs from the last one; the experience of assisted death in Oregon, Belgium and Switzerland; the pros and cons of assisting deaths. Words like dignity, respect, autonomy are used frequently, everyone wanting us to believe they respect dignity and autonomy totally.

The politician reminds us that parliament debates many moral issues, (sexual, reproductive etc), but how to help the dying – a condition we must all face – has taken the longest to resolve. Sobering thought. But the defeat of successive proposed bills has shown us how reluctant our friends in both Westminster and Holyrood are to grasp this nettle. Margot MacDonald has limited her new bill to those who are terminally ill, facing imminent death, in order to overcome some of the resistance. It’s no earthly use to folk like Tony Nicklinson and Diane Pretty, trapped in disintegrating bodies, facing appallingly protracted dying – and these are the ones I agonise over the most.

The poet/musician on the panel homes in on society’s reluctance to talk about death; the importance of thinking and talking about these issues while we’re conscious and sentient and able to articulate our choices. Good man.

The audience give Professor McKellar a rough passage (he’s opposed to assisting death). They really don’t like his insistence that all human life is equally valuable, society is about dependence and care of each other, and an assisted dying bill would mean that some lives were deemed less worthy than others. From all sides come protests – the cruelty of keeping people alive in appalling conditions; the right to choose either way; the iniquity of autonomy limited by the moral qualms of others; the limitations of hospital, hospice and palliative care; the wrongness of assuming other people’s reactions; the wrongness of imposing theoretical notions of respect onto others.

The house having shown a clear preference for some way out for those facing horrible undignified or painful deaths, the experts and experienced then pitch in with facts and details about the patchy nature of palliative care provision, the lack of hospice beds, the effect of just knowing there’s a way out, the position of minors. I’ve heard it all before, but I’m still glad I’m not on the panel – there’s a limit to the number of times you can simply agree with the challengers.

This whole debate was sparked off by Sparkle and Dark’s play, Killing Roger, which I reviewed on Monday, so it’s fitting to let Lawrence have the last word. The arts – plays, novels etc – allow conversations to happen. They stimulate and engage people. They inspire them to explore the issues that bit more, and encourage reasoned thinking, he says. I agree. This is precisely why I write novels on these issues; not to impose my ideas and opinions, but to encourage others to form their own.

 

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Killing Roger

Today saw me wending my way, not to Charlotte Square for the Book Festival, but down to the Cowgate – the area below the Bridges – for a spot of theatre.

UnderbellyThe atmosphere in the Underbelly is dark, rather-cave-like, almost spooky, and seemed totally right for this particular play with its dark connotations.The cow in CowgateSparkle and Dark are a young London-based company who produce and tour with shows, as well as running workshops and storytelling sessions. Today they were performing Killing Roger which had excellent reviews in its London showing, so I approached with high hopes. And I was not disappointed.

Imagine the stage – a rather dingy old man’s room with one armchair, a table to one side, a sink in the background. Oh, and a vase of lilies. They’re brought by the well-intentioned Sheila but hold painful memories for the old man – of a hospital scene where he ‘couldn’t look‘, the smell of urine, and his abiding shame. Centre stage is the old man himself, Roger, (a magnificent puppet controlled by two of the cast), a photo of a young woman beside his chair. He’s chain-smoking and continually coughing (‘chest like a bombsite‘ but ‘the doctors are still finding ways to keep me alive‘) and inhaling lungfuls of oxygen. OK, yes, you medical know-alls, I know oxygen and smoking aren’t compatible too, but suspend judgement for now, if you please. We weren’t all sent to kingdom come in a mighty conflagration after all.

The atmosphere is helped by clever lighting and live guitar music and excellent choreography. So far, so superb.

Young Will (Billy to Roger) is a conscientious but very opinionated teenager. He’s studying English, History, Philosophy and General Studies at college when the opportunity to gain extra credits comes up: help in the community. He starts to visit this sharp-tongued, foul-mouthed, terminally ill old man. After a while self-interest turns into something warmer, and he continues to call long after the scheme requires it.

Roger presents some powerful challenges for Billy, about God, about life, about autonomy. The dialogue is compelling, at once penetrating and humorous. (Apologies if I haven’t captured it totally accurately – I don’t do shorthand and could only scribble in the gloom, trying not to miss any of the action.) When Roger offers Billy ‘a fag‘ the lad tries to suggest Roger would be better to ease off. Roger tells him roundly he’s a ‘sanctimonious bastard‘; at least doctors have spent years training to tell him what to do! But then he modifies his reaction, ‘it’s not your fault, it’s your culture‘. When Roger challenges Billy’s atheism and Billy wonders why the old man is always talking about God, Roger replies ‘When you’ve been touched by death you want to be connected to something. Know you’re not alone.’ Besides, ‘God ain’t dead – he’s just not what we think he is.’

Billy tells the old man he ‘loves reading, philosophy and that’, but always thought you ‘need to live the words’. Roger advises him to read the Bible and when he does, Roger asks him what he thinks of it. Billy replies, ‘All the people in it, they’ve all got this dignity.‘ Cue the big question: ‘Could you kill someone, Billy?’ ‘No, I’m a pacifist.’ ‘Not even in anger?’… ‘Could you do it for an old bloody fool?’ How far will the boy go for friendship’s sake? What does caring mean?

Roger is 87, he’s had enough. ‘Life’s for the young. They’ve got the time to do something worthwhile.’ But he survived the war and can’t bring himself to take his own life. ‘Not after they died so I could live.‘ Hence his appeal to Billy. But ‘I’m not a quitter.’ ‘Dignity, in’it?’ ‘Exactly, son.’

As the two talk and the actors portray the scenes, we see into Roger’s memories of himself as a lad, ‘Rog the Dodge‘, a different girl every night, until the blue-eyed Martha comes along and steals his heart. We see his pain as he turns away from her dying, the treatment for her illness worse than the disease. We witness too the swither of Billy’s troubled mind as he grapples with the old man’s request, hearing it echoing again and again in his head. The challenge to think for himself. ‘You’re not some record that life gets scratched onto and stays there forever. Is that what they teach you nowadays? Tell you you exist instead of letting you find out for yourself?’

Billy is clearly much moved by the prospect of losing his old friend. ‘You crying, Billy?’ ‘Nah.’ … ‘You crying, Billy?’  ‘Yeah.’ ‘Good man, Billy.’ And when the police and ambulance people arrive he laments there were more people in Roger’s flat that day than had been in months. The scenes segue smoothly and gracefully throughout, none more so than the final change where Billy is talking to the policewoman.

There were only 18 people in the audience today. A great shame. This is a company worth watching and a question worth thinking about.  Would I have responded as Billy did to Roger’s request? Would you?

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