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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Then, the winner, Julian Barnes, is famous for having scorned the whole MB enterprise as ‘posh bingo‘. Bet he’s not repeating that this week!

And now one of the judges, Gaby Wood, has gone to print saying that ‘Almost nothing happens in the book.‘ That’s the winning  The Sense of an Ending she’s talking about. OK, she does go on to qualify her remark: ‘yet it becomes a psychological thriller of extraordinary technical virtuosity.‘ But even so, I think I’d be miffed if someone said nothing happened in my books.

Which brings me nicely to a post written by Simon on Stuck-in-a-book on 7 October. Yes, I know, two weeks ago. But I needed time to mull this one over. And I’ve been much exercised by this matter during those two weeks.

Simon asked the question: How would you rank the three main components of a ‘good’ novel: plot, character and writing style? Of course, the evaluation of ‘good’ is a very subjective business, as he acknowledges. But that makes your own answer to the question the more intriguing.

OK, have you thought how you’d answer? Before contaminating your opinion with his answer. Or mine, come to that.

I’ve been doing a lot of reading of late – not least because it’s that time of year to think about filling the Christmas shoe boxes for Operation Christmas child/Samaritans’ Purse, so I’ve been rattling off woolly hats like a veritable conveyor belt. I concentrate for much, much longer if my hands are busy too. But the more books and bonnets I finished, the more difficult I found it to separate out those jolly old component parts. The best books are a clever amalgam of all three. Can they be assessed as ‘good’ without that balance?

What’s more, the boundaries can be less than distinct. A character can’t be well drawn without skilled writing … can it? And a storyline can reel you in subtly if it’s well written – it doesn’t have to be an overt edge-of-the-seat-whodunnit kind of plot if the writing is seductive.  But if either characters or plot are badly written they aren’t going to appeal.

Simon chooses writing style as definitely most important, and from what I’ve just said, I guess I’m initially concluding much the same. He puts character second, but relegates plot to way less important. In his words he ‘can happily, contentedly adore a novel where nothing happens – so long as the writing is good and the characters well-drawn.‘

And that’s were we part company. I would say at the end of such a volume: ‘So what?‘ There needs to be some tension, some kind of change or resolution, to leave a satisfied taste for me. Something more memorable and  substantial to hang onto other than beautiful phrases and clever metaphors. I like the characters and what happens to them to linger after I’ve returned the book to my shelves.

I also think the balance can change according to the genre. A mystery or thriller can’t work without plot. A romance doesn’t gel without character. And if the storyline is really gripping in any genre, the writing doesn’t have to be spectacularly good to keep those pages turning. Sheer story-telling ability has a power that transcends minor anomalies – though they might irritate at some lower level.

Still with the genre issue: I know that in my own books, the balance of the three components was different in the reflective diary of Adam as he contemplated his own death in Right to Die, compared with the search for Viv’s rapist in Vacant Possession. Writing in Doris’ voice as she sank into dementia in Remember Remember, required a different approach from that of Dr Justin Blaydon-Green when things started going pear-shaped in his infertility clinic in Saving Sebastian. But characters have been important in all of the books, whatever the genre. If you don’t care what happens (which is not the same thing as liking them) why should you bother to read on?

So, at the risk of sounding totally feeble, I personally can’t rank the three components. They all matter to me. It depends. What about you? You can reply to Simon instead if you’d rather. The idea came from him. But if you’re angling to judge the MB books next year … think … very … carefully … before you commit your thoughts to the ether. Simon’s still in the running I should think.

I’ve been tiptoeing through the mountains and forests of philosophy and ethics for rather a long time now, and some of the old chestnuts can taste rather stale at times. So I was delighted to hear a novel illustration used to refute the danger of slippery slopes in relation to assisted dying.

The occasion was a debate on the subject at the Royal Society of Edinburgh last week. No less than Professor AC Grayling was speaking (I’ve long been in awe of his way with words).

He said, if someone gave him a carrot he didn’t refuse to eat it because of the risk of having to eat a million carrots.

Brilliant!

For me it was the highlight of the evening. So I thought this week I’d share that smile with you, and perhaps at the same time modify my putative reputation as a pedlar of serious and sad!

Just in case you’re interested, the audience voted overwhelmingly in favour of assisted dying: 77 to 3 before the debate, 68 to 11 after it. What do you make of that?

Of course, the scriptwriter has draped the bones of historical fact with clothes of his own tailoring. Plenty of artistic license, I don’t doubt. Nevertheless the whole package has a credible and authentic feel to it. And the acting is superb. As you’ll have seen, the cast have been nominated for a whole raft of Oscars – deservedly so.

Now, maybe you’re more film-hardy than me, but watching good actors doing what they do so well, I’m in awe of their skill. They speak of ‘inhabiting a part’, of ‘being in character’, and accolades are given for doing just that. It’s the art and craft of their profession. For a time we onlookers suspend disbelief; they convince us their words, their actions, their thoughts, their feelings, are the genuine article.

What we hear less often mentioned is the impact on the actors themselves of this ‘inhabiting’.

Did you know, for example, that Javier Bardem, Spain’s first Oscar-winning actor, became so immersed in his role as a single father struggling to come to terms with his fatal cancer in Biutiful, that he found it took over his life? He started trying to set his real affairs in order in a rather manic way, contacting old friends, healing rifts. People who know him apparently started to get concerned.

Nicole Kidman, playing the part of a bereaved mother whose young son was killed in Rabbit Hole, began waking in the night sobbing and overwrought. I can believe that – must be harrowing to really feel the devastation of such a loss sufficiently to convey it so movingly.

And Colin Firth, engrossed in perfecting King George’s stammer in The King’s Speech, struggled at times to articulate words outside of the role. Not too clever a state to be reduced to if you act for a living, I guess!

They really do get inside the skin of their characters. And something of the same kind of experience is shared by authors. Well, by me anyway, and I doubt very much I’m alone in this. Our characters become more real to us than flesh and blood friends.

I felt utterly drained after spending months experiencing Adam’s emotions as he died slowly from Motor Neurone Disease in Right to Die.

It took me weeks to recover from the brutal death of Donella in Double Trouble. She was one of my favourites. I so much wanted the story to have a different ending, but what happened happened without my say-so.

Bethany’s struggle for life reduced me to tears every time I read that chapter in Paternity.


It gives me a real thrill when readers tell me they too have been so intimately engaged with, so profoundly moved by, something I’ve written, that the edges between reality and fiction have been blurred.
‘I found myself looking round for my wheelchair.’
‘I had to go and check on my own children.’
‘I felt confused and disorientated myself – I actually did a little test to make sure dementia wasn’t setting in.’

Of course, there’s a downside too. Some people dare not expose themselves to raw emotion at this level. They won’t even open the covers. I have to accept that reality.

It’s impossible to please all the people all the time, after all; no point in trying. But I do have to try to be true to myself. And that means sticking with this genre. Because this is my raison d’être – why I moved into fiction writing in the first place. I want to give a voice to those people whose lives are dominated by the dilemmas and challenges of twenty-first century medicine, who so often struggle unseen and unsupported. I want people to listen to them; to feel their anger, their anguish; to care.

Starting with me.

The bells rang, the pipes skirled, 80,000 people partied in the streets of Edinburgh to the thunder and shimmer of thousands of pounds worth of fireworks … and yes, it is worth saying, because the official celebrations have been cancelled before, and the jolly old weather certainly threatened to be agin us this time.

Six years ago we took a party of guests to our usual vantage point shortly before midnight and … waited … and waited … and well, nothing happened. Apparently there were ‘safety concerns’. In our embarrassment and frustration we instantly thought Thou-shalt-not-play-conkers-without-safety-helmet-plus-padded-gloves-plus-visors writ large. But nobody wants a fatality for the sake of a mere pyrotechnical spectacular, and we learned later it was something to do with a dodgy roof and the strength of the wind. At least that was the official version.

But it’s not just dynamite that has ignited the change to a new year. The bells have been ringing for other major shifts close to my heart. Indeed the news during this past seven days has been jammed full of my kind of subjects. In no particular order (as they say on ‘talent’ shows) …

Organ donation included on driving licence applications
From July drivers applying for a licence will be asked to indicate which of the following applies to them:
• Yes, I would like to register on the NHS Organ Donor Register
• I do not want to answer this question now
• I am already registered on the NHS Organ Donor Register.
It’s an official step towards increasing the pool of donors. Around 90% of people favour donation but only 27% are registered donors. And given that about 1,000 Britons die each year for want of an organ, and thousands more wait an indecently long time for one, we need to do something. Maybe there should have been one more question:
• Would you be prepared to receive a donated organ for yourself or someone you love?
The novel I’m writing just now is about organ donation so I can get quite fired up on the subject.

Sir Elton John has become a dad
Put aside for a moment any qualms about the 63-year old temper-tantrum-on-short-legs with a £290,000 flower habit as a role model, and disregard the rumours about payment to ensure the birth happened on 25th December as the ultimate Christmas present, and think instead of the whole picture of a financial arrangement between an unknown surrogate mother in California and an aging, overweight, homosexual with dubious priorities. And spare a thought for the resultant offspring: Zachary Jackson Levon Furnish-John.
Admittedly the pop star did try recently to adopt an HIV-positive toddler from a Ukrainian orphanage, but he was denied on the grounds of his age, and the fact that his civil partnership with David Furnish was not recognised. So what isn’t good enough for an abandoned Ukrainian is suddenly acceptable for Zachary? Hello? How many tribunals in this country would grant permission for such an arrangement without the pressure of fame and fortune, I wonder? OK, it did become legal in April here in the UK for two men to have a child by a surrogate and to have both their names on the birth certificate. But we aren’t talking about your average ordinary man here. Children are not commodities. Nor are they fashion accessories.
Surrogacy was the subject of my 2005 novel, Double Trouble.

A nine-year old becomes a bone marrow donor
Robert Sherwood is only nine. His brother Edward is just five. But Edward has aplastic anaemia; his bone marrow fails to produce sufficient new blood cells. Robert’s donation has the potential to save his brother’s life. But … should he have been subjected to this procedure before the age of informed consent? Does the end justify the means? Should he be permitted to say no?
It’s the bread and butter of my working life!

A grandfather has become the first to donate an organ to a grandchild
John Targett, aged 59, couldn’t bear to see his little one-year-old grandson growing sicker and sicker as a result of biliary atresia. So he offered part of his own liver and had the operation just before Christmas. What a gift: the gift of life.

Another British person has ended his life in Switzerland
Andrew Colgan was only 42 (not much older than my son) but he’d suffered from Multiple Sclerosis for ten years and his condition had markedly worsened recently. He died in that now infamous Dignitas room in Zurich. My own feeling is of immense sadness that this young man had been desperate enough to go abroad for a solution to his terrible dilemma.
I really agonised over these questions for Right to Die; I’m still struggling with them three years after publication.

Volunteers keep libraries open
A new report has revealed that libraries in England are increasingly being staffed by volunteers, to prevent closure under cost-cutting exercises. And this at a time when it ought surely be a priority to make books available to those struggling to find employment or to make ends meet. Books can change lives. Penny-pinching in this area is surely stealing vital resources from the future.
Hundreds of people only read my books as library copies. I want them to continue to have this opportunity. It represents something much more exciting than sales figures.

Bishops defend the rights of Christians
Lord Carey, former Archbishop of Canterbury, has urged the prime minister to review the laws which discriminate against Christians in our supposedly-Christian country. And the Bishop of Winchester has reinforced this message. We’ve all heard about the airline worker denied the right to wear a crucifix; the couple denied the opportunity to foster children because of their religious scruples; and the bed-and-breakfast proprietors who won’t take same-sex couples in double rooms in their guesthouse. The law does seem to have sided against ordinary Christians following their consciences.
Religion is closely interwoven with law and ethics and this subject too is a matter of ongoing interest to me.

There was something too about managing Alzheimer’s more cost effectively but I can’t seem to find that. No, it’s NOT a joke about dementia: I genuinely can’t. I looked and in the search found this site which might be comforting for those people struggling alongside this disease. But in the absence of a link to the news item I was looking for, I didn’t want to ignore another topic that I’ve delved into in depth for one of my novels, Remember Remember, because of course, it leapt out of the page at me.

So you see, just in a few days I’ve had my belief that people do care about ethical dilemmas reinforced over and over again. A great spur to another year of writing.

And yet I heard first hand from these grieving men and women that a large number of their relatives, friends and acquaintances churned out platitudes like: ‘He was only a baby, you didn’t really know him’, ‘At least you can have another one’, ‘You’ve still got John and Polly.’ In effect saying: You have no right to grieve. It’s no big deal.

Those parents changed me forever. I’ve never quite regained my tolerance for those who make heavy weather of trivial burdens and moan about their lot.

A similar (though far less damaging) experience is coming my way at the moment. I’m being told to count my blessings in one form or another, or I’m being told what I must be feeling. I have visions of carrying a placard:
I KNOW she’s at peace; I KNOW she lived a full life; but SHE WAS MY MUM. I really, really, really don’t need you to diminish my loss.

I felt the iniquity of these kind of platitudes acutely some years ago when I was inside the skin of one of my characters, Adam O’Neill. He’s a young journalist, at the peak of his potential when he develops Motor Neurone Disease in Right to Die. He’s facing an early death. He’s fully aware that though his body will disintegrate inexorably, his mind will still be functioning normally, totally conscious of the gathering horror. Imagine that kind of living death … if you dare.

I’m going to reproduce his reflections on how people reacted to him in full, because he sums up the iniquity of denying someone else in dire trouble the right to feel lousy and sad and angry.

While other people are writing Christmas lists, I’ve started to compile a glossary of things people say alongside my private responses. Outwardly, I’m afraid, I’m still locked into the hypocrisy of polite social exchanges.

‘You can still lead a full life.’
Being in a wheelchair, struggling for breath, may seem full to you, pal, but I’ve known better and by my yardstick it stinks.

‘Your attitude will make all the difference.’
Why do people put the onus on me? If I deteriorate quickly, will that be a comment on my approach to life? If it’s legitimate for you to be fed up with trivia, why can’t I be frustrated by this major disaster?

‘Try not to worry about the future, we none of us know what it holds anyway.’
Maybe, but I know pretty much what mine looks like; you can still believe that on the law of averages you’ll have a reasonable lifespan and kids and a career and a pension.

‘Enjoy today. Think positively about what you can do, not what you can’t do.’
I’d like the feel of that if I said it myself; I hate it when other people in perfect health slug it to me.

‘Channel your energy into creating the best quality of life you can.’
Ditto.

‘It’s a good thing you don’t have kids.’
Now that is below the belt. I’d give a king’s ransom to have the assurance that something of me lived on after my death.

‘At least Naomi’s still young enough to start again.’
Start what? D’you think I haven’t recognised the fact that she’s young and attractive and desirable and ready for the next stage in her hormonal life? Do you have to tell me she’ll probably have kids with some other bloke? Do you?! Damn it, I want her to be happy with me! Have kids with me!

‘Live positively with MND.’
That’s one of the most patronising comments to date. It conjures up those Pollyannas who are paralysed from the neck down, or whose families are wiped out by a senseless act of terrorism, who go on record as saying they’re a better person for having tribulations in their lives. Ergo, they’re glad they’ve had these things happen to them. Give me a break! Goodness thrust upon you can’t be the same value as goodness you chose to cultivate, can it?

‘I see you’ve kept your sense of humour – that makes all the difference.’
I’m sure it helps you, but remember it costs me. Just because I’m poking fun at my own inebriated gait or my drunken slurring doesn’t mean I’m laughing on the inside. Sometimes it’s just a cover to defend myself from pity, or ridicule, or too much sympathy. Or it’s because if I don’t laugh I’ll slip below the surface and in all likelihood never come up for air again.

On a good day I can tell myself most of these things but if there’s one piece of advice I’d give to everybody about dealing with folk in trouble, it’s this: Never ever count their blessings for them, or exhort them to count them themselves. Contrarily I know if someone else commiserates with my plight, my instinctive response is along the lines of: Things could be a lot worse; and to focus on what I can do. But that’s my prerogative, no one else’s.

I leave the last word on the subject with him.

Last week, as I wrote my blog, you may remember, I was cooking wee delicacies for the nibbles (the very ones pictured below), and juggling several other competing demands (humdrum domestic as well as professional ones), wondering if I’d ever be ready on time.
Anyway, on the day, the food looked passably edible. You can’t go far wrong with fresh Scottish strawberries now, can you? And a 100% silk overblouse I acquired from a wonderful lady in the Royal Highland Show a couple of years ago allowed me to pretend I had nothing better to attend to than the shape of my cuticles and the shade of my eye shadow. Did anyone guess that up to five minutes before guests started appearing I was wielding spreading knives, and sparkling wine glasses, and tangling with clingfilm, I wonder? Actually, doing the physical preparation myself this time (my own choice, I should hasten to add. Well, you know how obsessive I am) was quite therapeutic. Stopped me getting too bogged down in mental preparation – of the ‘I’d-better-read-every-report-and-academic-paper-and-legal-case-on-the-subject-just-in-case-some-omniscient-wiseguy-challenges-my-credibility’ variety.

The sun shone brilliantly, lots of lovely people came from all sorts of different professions and backgrounds and perspectives, and they mingled beautifully. Everyone was polite enough not to spit the food back at me, and they were so responsive to cue that they all sat down spontaneously after early mingling without so much as a raised voice, or a bell, or a gong in sight.

But I’m sure they’d all forgive me for awarding the gold medal for the night to the chairman, John Killick. He’s a poet who works closely with people who have dementia, encouraging communication and creativity – hence his role interviewing me about a book on the subject. You can read more about him on www.dementiapositive.co.uk although his site doesn’t do justice to his international reputation. (Nor does this photo, but somehow importing it lost something of the sharpness of the original. DJ and I laboured long and hard to rectify this, but to no avail. So sorry about that.)

Anyway, John’s a delightful man, and on this occasion he set a perfect tone for the evening with his relaxed and amusing approach, alongside a total grasp of the subject under discussion. We organised the programme much as a book festival interview, and John had dug up some impressively insightful questions for me on the story I’d written. It’s always gratifying for an author when someone has analysed and thought about the structure as well as the content of their book, and John had taken this to an extraordinary level.

One other guest deserves a special mention too. And that was Cornflower. She writes a hugely successful blog about books (recently ranking number four in Wikio’s Top UK Literature Blogs) and was kind enough to review my last one, Right to Die, last year. If you haven’t visited her site you should. (She’s the pretty smiling one with the bag large enough to carry lots of books around.) This was my first time meeting her (and Mr Cornflower) in the flesh, but we’ve already arranged to have coffee together to have a proper chat. If you’re the author at a launch it behoves you to skim over the surface of the pond hovering superficially beside every guest, not dive deep in one spot with any one individual. Regrettably. There were lots of diving companions I hankered after on Friday night.

But hey ho, partying over, it’s now time to get back into the current book about a young widowed mother and her two little girls who’re involved in a serious road accident … and a family faced with a request for organs … and a queue of sick people on the transplant waiting list … I think I’ll soon have got sufficiently to grips with the questions and issues to be ready to sally out into the real world and spend time with transplant surgeons and coordinators and recipients and … well, who knows? It’s a big world out there! And an endlessly fascinating and challenging one. One of the guests at Friday’s launch knows someone who became a live donor and introductions are forthcoming. Oh, yes, that was another bonus – all those links and connections we made that will ripple on. Great stuff.

But I do want to talk about one particular politician, Independent MSP Margo MacDonald. Last week, in the midst of all the election hype, I was invited to go and hear her in person talking about her proposed End of Life Choices (Scotland) Bill. Of course I leapt at the chance. It’s a subject dear to my heart, as you folks know.

On this occasion she stoutly maintained that having Parkinson’s Disease herself hasn’t influenced her in taking up this Bill, but I have to admit her personal circumstances give her a certain edge in my estimation. Anyone who campaigns so tirelessly when they’re battling personally commands my respect.

But here she was, asking for comment and questions about her proposed Bill from a largely medical audience, which included lots of psychiatrists and some palliative care specialists, both of whom have a lot riding on this. Of course, they challenged her. And why not? She wasn’t seeking any latitude because she has an illness herself. And more importantly, by her own admission, she’s asking an awful lot of doctors: viz to end the lives of human beings. Quite deliberately.

Now, if you’ve read my novel on this subject, Right to Die, you’ll know that I fully understand the dilemmas for those people who suffer horrific degenerative neurological diseases. You might detect that I have a lot of sympathy for those who want to end their lives ahead of nature’s schedule. But what you won’t know from that book, is that I personally have very mixed feelings on the subject of assisted death. Depends where I’m standing what it looks like, I guess. But because I feel honour bound to try to present the picture fairly and honestly (well, I’m not a politician), Margo’s debate with the doctors compels me to spell out a few angles thrown up in the discussion that made me think, even though some at least appear in the novel in one guise or another. (Incidentally the book predated Margo’s Bill by a couple of years.)

Here’s roughly how it went (my paraphrasing).

MMacD: This is a Bill to help a small number of people with intolerable or terminal conditions have the kind of dignified death they wish for.
Audience: Let’s call a spade a spade. It’s euthanasia.

MMacD: Ending a life is too big a responsibility for families who, in any case aren’t knowledgeable enough about medical matters; they might guff it up and not know how to correct their mistakes. Ergo, doctors should do the deed.
Audience: Doctors aren’t trained in how to kill either. They wouldn’t know how to. And given the projected small numbers* eligible for this service it’s hard to see how they could be trained, or build up expertise.
*(Based on the Oregon experience, MMacD had projected 55 per annum in Scotland.)

MMacD: Doctors already end lives because of the double effect of the drugs they use: big doses of pain relief shorten lives.
Audience: This is a myth. Research shows that when medication is carefully titrated against pain by palliative care specialists it doesn’t shorten life. It’s only when non-experts panic this happens.

MMacD: The Bill requires psychiatrists to assess the patient’s definition of ‘an intolerable life’.
Audience: Assessments like this are notoriously difficult.

MMacD: The patient drives this. It’s what they personally find intolerable that counts.
Audience: So what are the doctors assessing?

MMacD: One of the rules for this Bill is that the patient isn’t being coerced or subjected to undue influence to die.
Audience: It’s incredibly hard to decide if they are. Pressure comes in many guises.

MMacD: Whilst she has no quibble with religious or moral objections to this Bill, MMacD gets annoyed by the people who make false claims about its risk to vulnerable people. But she also said she feels guilty she’s being too conservative about who would be eligible for this service.
Audience: No, they didn’t say a word!

It’s only fair to underline a couple of points.
- MMacD was inviting challenges. And she stated that she had every intention of having medical experts present at the discussion stage.
- the Bill is at a very early phase. It could change in lots of ways before it becomes law – if it ever does.
- the doctors who spoke are not necessarily representative of all medical opinion and she is not representative of all politicians.

Do add your comments either on the blog, or to me in confidence (see my contact page), I’d love to hear from you. Especially if you can help to clarify my own thinking on some of this. What a minefield!

In the midst of all this turmoil, it’s been a tonic to involve myself in Christian Aid week. The annual Book Sale at St Andrew’s and St George’s in Edinburgh’s George Street is a fantastic example of love in action. (It raised £101,000 last year!) And the people who go out of their way to be sure their donations get to me if I miss them in my door-to-door collecting – they restore my faith in human beings. As did the church I visited the previous week, who really reach out to their local community in practical ways as an integral part of their Christian service. These are the kind of folk who get my vote. Politicians please note!

In my novel, Right to Die, Adam O’Neill is a young journalist with a bright future when he is diagnosed with Motor Neurone Disease. He’s determined to hang on to his independence as long as possible, but a car accident precipitates him into hospital. There he has time to reflect on the difference attitude makes to the way he is cared for.

But it’s not until he’s back in hospital sitting beside his mother, following a massive stroke, that he consolidates his opinion: ‘I do not want to be pitied by the gentle ones, resented by the hard ones, tolerated by the indifferent ones.’

I wrote this several years ago now, but during the past couple of months I’ve had firsthand experience of the gentle ones, the hard ones, and the indifferent ones. And kindness and compassion really do count.

Some health care professionals radiate care and empathy. For them the perfectly positioned pillows, the smiling encouragement, the modulated voice, seem intuitive. But there are others who perform their tasks (no more than that) with tight faces, no explanation and exasperated gestures. Yes, even when relatives are present.

Mother may not be able to communicate effectively in words much of the time, and she may be clinging to the politeness of 90 years, but she knows the agony of rough handling on arthritic joints, and the desperation of waiting 25 minutes for a bedpan that was promised ‘in a minute’. She can still convey that awareness to me. And we, her family, certainly see and know when the attention (I refuse to call it care) is begrudging and the expressions are grim.

Expertise and technical know-how are important, of course they are. But it’s the way things are done that raises the bar – converting necessary treatment into compassionate caring. I’m with Adam: I don’t want to be on the receiving end of hospital ministrations at all if I can avoid it. Who does? But if I am, spare me from the ‘hard ones’ and the ‘indifferent ones’.

Mercifully we have now rescued Mother and she is in her second full day in a wonderful establishment where she is surrounded by loving care, and the centre of an orchestrated effort to give her a life in spite of her limitations. The difference is unbelievable. I have come away to allow these dedicated people space to get to know her (without me as interpreter) and I’ve done so with confidence and peace of mind. At last.

After a couple of months of living in something like a parallel universe I hope to pick up with life as I knew it before disaster struck my mother. Once I’ve caught up on sleep!

IVF clinics reported to be destroying embryos with minor conditions; a ‘genetic breakthrough’ which could help treatments for breast cancer to be tailored to individual need; a mother who forced her son to fake illness being sent to prison; a manager of a home accused of giving elderly residents overdoses of drugs; a powerful torch being trialled in the detection of malignant tumours; patients who travel to Switzerland to die in Zurich’s suicide clinic potentially facing a £30,000 death tax; the novelist, Martin Amis, recommending ‘euthanasia booths’ on street corners where elderly people could end their lives with ‘a Martini and a medal’; a girl of 5 who suffered brain damage during labour being awarded £1.25m by an Essex Trust … enough! enough!

Not surprisingly given my overt interest in the topic (Crucial Decisions at the End of Life and Right to Die) I want to home in on the matter of assisted death. Yes, again! Because it’s been a big week for this topic. Lots of column inches; lots of airtime devoted to it.

In 2007 Tom Inglis fell out of an ambulance in which he was being treated following a pub fight. He sustained brain damage and was paralysed. This week (my blogging week ie) his mother, Frances Inglis, was jailed for life for killing him with an overdose of heroin – on the second attempt. She really really intended to kill him this time, no doubt about that. She posed as his aunt to get admittance to his nursing home, she was armed with a syringe and £200 of heroin, she wedged an oxygen cylinder and a wheelchair against the door and poured strong glue into the lock to delay anyone entering for as long as she could. But, ‘you cannot take the law into your own hands and you cannot take away life however compelling you think the reason,’ said the judge, before telling her she must stay in prison for at least nine years. Outside the court Tom’s brother praised her courage and love. He asked, how could it be legal to withhold food and drink to allow a patient to die slowly, but not legal to end suffering in a quick and calm way. But a crucial point here is that Tom wasn’t requesting death himself. And at least one doctor predicted that he would eventually recover many of his faculties.

Kay Gilderdale’s daughter, Lynn, did request that she could end her ‘miserable excuse for life.’ She’d had ME for 17 years, she was in excruciating pain, and she’d had a premature menopause at the age of 20. Kay provided her with the means to do so. The 31-year old injected herself with the heroin, her mother topped it up with more of the same plus sleeping pills and antidepressants and injections of air into her bloodstream. She too really really intended her daughter to die. But this week she has been acquitted of the charge of attempted murder. Nevertheless she will have to live for the rest of her life with the memories and knowledge of what she has done.

On the same day that Frances Inglis was sentenced to nine years in prison, three senior judges were deciding that an Asian businessman, Munir Hussain, should walk out of prison, his sentence for grievous bodily harm (after beating a burglar with a cricket bat) replaced with a suspended sentence. Justice, compassion, mercy, upholding the law … all the reasons are trotted out for the differing penalties.

But what would you instinctively do if you found a menacing burglar threatening your family? What would you do if your daughter/son was lying in torment, physical and/or mental and begging for your help? Or if you were on the jury deciding the fate of a mother who has deliberately killed her child?

So-called ‘mercy killing’ raises powerful emotions. Campaigners are re-doubling their cries for a change in the law. The current attempts to do so hinge around cases where people are wanting to end their own lives because of terminal illness or intolerable suffering. Similar arguments; important circumstantial differences. But the potential consequences of such a change are sobering too. Doctors under pressure to speculate as to the time left to give credence to the ‘terminal illness’ (the Lockerbie bomber case springs to mind), disabled lives categorised as inferior and worthy of terminating, patients under pressure to end their lives before they become a burden or inconvenience, a slippery slope to euthanasia of the unwilling … You’ll have read the lists too.

Many people face the dilemma of deciding between two tragic choices, not just the few who hit the headlines. Some of them contacted Any Questions? and Any Answers? this week each with their own painful story. I’ve heard many more. I’ve been personally involved in such cases. Some families go ahead and break the law, some think it would be right to but can’t bring themselves to perform the act, and others believe life is sacred and not to be cut short by human hand. And opinion is fierce on both sides.

Independent MSP, Margo MacDonald, found the same thing when she listened to people caught up in these difficult questions, and her appreciation of the fine nuances is reflected in her proposed End of Life Assistance (Scotland) Bill published this week. It’s hedged about with safeguards:
- a minimum age of 16
- at least 18 months registration with a GP in Scotland
- late stage terminal illness or a degenerative condition or permanent incapacity
- intolerable life
- agreement by two medical practitioners
- a psychiatric assessment of capacity to decide
- 2 witness signatures
- a cooling off period of two days.
She’s a persuasive campaigner and her own situation (she has Parkinson’s disease) gives her a strong platform. But no-one knows how her parliamentary colleagues will react (this is not a vote-winning cause) and without their support it can’t even get through to the next stage. But if it does become law then Scotland could become the first part of the UK to legalise assisted suicide, so it’s a critical issue.

MSPs are expected to vote on this Bill in the autumn – a free vote so they can go with their conscience and not along party lines. Keir Starmer, the Director of Public Prosecutions, is due to issue new guidelines on assisted suicide within the next eight weeks.

Which way would YOU want them all to go?