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?

The life and death of Kerrie Wooltorton has been haunting me – and filling column inches in the papers, two years after her death. Please note: long before the DPP guidelines on assisted dying for the terminally ill came out last month. Unfortunately the press have tended to confuse the facts by linking this case to the recent debate and wagging I-told-you-so fingers. But the Wooltorton story happened two years ago; it’s hit the headlines now because the coroner has just pronounced his verdict on the rights and wrongs of the decision.

How desperate was this 26-year-old woman to choose to swallow anti-freeze, ring for an ambulance, and hold a piece of paper out to ambulance men asking them not to intervene to save her life? Oh yes, she wanted to die, she was sure about that; she just didn’t want to die alone and in pain.

What torment possessed the minds and hearts of the doctors in A&E who had to decide how to respond? What would you/I have done in their shoes? Surely the foundation of medical care – to ’do good’ and ‘not to do harm’ – must have compelled them to intervene to save this young life … but, hang on a minute … legally it would be deemed an assault to give treatment which the patient herself expressly refused. That’s a criminal offence. And anyway, backing up her claim, there was the tried and tested basic ethical principle that says every rational human being should have the right to self-determination … but then, with her history, how could she be judged mentally competent to decide to die? It was a no-win situation.

There have been innumerable letters, strong opinions, expert analyses, expressed in support of both arguments. From psychiatrists and lawyers as well as from lay people. Wheeling out the law and ethical guidelines; roundly castigating both law-makers and care-givers; consigning society as we know it to a very slippery slope. But as for me, my heart goes out to the Wooltorton family and the professionals intimately involved in this tragedy.

I’ve worked in an A&E department myself. I’ve been instrumental in saving the lives of potential suicidees, bringing them back from the brink, only to face their personal demons all over again. In a few harrowing cases I’ve learned subsequently of the far-worse-than-death things that happened to them afterwards. I still carry a burden of doubt and guilt decades after the events. And back then dignity-in-dying and advance directives hadn’t even been invented.

By all means let’s keep talking about the issues, addressing the anomalies, learning from experience. But let’s not belittle the tragedy for all concerned by pretending that we only need to feed the facts into a moral guidelines machine to get black-and-white answers. Every case is personal and unique. These people need our understanding and support, not our semi-detached criticism.

Because assisted suicide hit the headlines again this week, big time, and some of my readers have contacted me about it. Prompting me to offer a couple of comments.

First the Royal College of Nursing officially withdrew its opposition to seriously ill patients seeking help to end their lives. It’s important to note that the RCN is not saying it approves the practice; full stop. Of the roughly 30% of their members who participated in their recent consultation exercise, 49% supported assisted dying; 40% opposed it. What the College is recognising is the variation in opinion amongst the health care professionals who work most closely with very sick patients, and the public mood.

The plan now is to issue guidance to help nursing staff to have a properly informed discussion with those who broach the subject with them. I just hope this process won’t take too long. What about all those patients and families who read the headlines; misread the signs; and confront unprepared nurses?

And there’s another issue which isn’t often raised. Nurses are certainly very close to terminally ill patients, but they aren’t the ones who actually do the deed or write the prescription. Important distinction.

The RCN news coincided with a poll in The Times – carried out a week after the conductor Sir Edward Downes and his wife died at the Dignitas clinic on July 10 – which found that 74% of people (well, Times readers anyway) want doctors to be allowed to help their patients in this way. If you’re one of the people who say assisted suicide should be legal, ask yourself: would you be willing to carry it out? Actually help someone to die, I mean. And if you wouldn’t, can you justify requiring others to do so?

Now today the Law Lords have issued a milestone ruling. Debbie Purdy, a lady with Multiple Sclerosis who has been campaigning for clarification of the law on assisted suicide has, they say, the right to know if her husband will be prosecuted if he helps her end her life. Guidance must be provided. The Director of Public Prosecutions has promised to issue an interim policy later this year. Ms Purdy herself says, this is not about a right to die but a right to live longer; if her husband is able to help her she will not be forced to end her life prematurely to protect him.

As I say, a serious week. Major challenges. Worrying questions. No easy answers.

Assisted dying – the subject of one of my novels, Right to Die – featured strongly. But then, this was the week that Lord Falconer’s proposed amendment to the Coroners and Justice Bill came before the House of Lords. Just in case your head’s been under a stone too, it was designed to protect from prosecution those who enable friends or relatives to travel abroad to commit suicide in one of a few countries where the practice is legal.

Result? The amendment was rejected; leaving these vulnerable people technically in limbo. No change there then. But as Lord Falconer himself admits, it’s not obvious that it’ll actually make much difference in real life, because ‘The current situation is that the DPP (Director of Public Prosecutions) has made it clear that he will not seek out these cases to investigate. If the cases come before him, he will ensure that they are properly investigated and, as long as he is satisfied that there is good motivation, he will not prosecute.’ And really, would it serve the public interest to do so anyway?

If you’re looking for a breath of sanity on this subject why not visit the Journal of Medical Ethics blog. I recommend it.

The six million dollar question though is: should seriously ill patients have to go abroad for help in the first place? Don’t get me started!

The letter was from Baroness Mary Warnock – probably the best-known moral philosopher in the country, for those of you who don’t instantly recognise the name. The Warnock Report? Ring any bells?

I’ve read lots of her writing; heard her speak. But I finally met her in person at the Edinburgh International Book Festival last year when we appeared together at an evening event about assisted dying. We’d both brought out books on the subject within weeks of each other (her’s: An Easeful Death; mine: Right to Die). She’s in her eighties now but a wonderfully switched-on lady who still sparks controversy in the press periodically (mary-warnock). Good for her. I don’t always agree with her but I hope my synapses are still crackling as merrily if I ever reach that age. Anyway, at her request, a few weeks ago I sent her a copy of my latest manuscript, Saving Sebastian (about a family seeking treatment to have a baby of the same tissue type as an older child with a fatal illness). ‘Sent her a copy’ – sounds casual, doesn’t it? In reality it was a heart-in-my-mouth sensation posting it. Because not only does this amazing woman have a planet-sized brain, but she has committees named after her – distinguished committees on related topics.

And this envelope held her response. Big breaths. Steady the racing heart.

The endorsement was very encouraging. Very kind. So, why do I mention this here? Because the letter itself was exceptional: hand-typed (complete with uncorrected errors – lots of). The crested envelope was hand-written. This famous and brilliant lady took the trouble not only to read the book within a fortnight of receiving it, but to personally and laboriously write a proper courteous letter to me about it – no dictation to a secretary, no hasty email. That kind of attitude towards ordinary people impresses me more than any prestigious awards – and she’s had her fair share of those.

Thanks

But special thanks go to Lindsay in Glasgow who challenged me in an unexpected way. The exchange went something like this:
L: ‘Would you say you’ve got strong views on ethical issues?’
H: ‘Well, I’ve got strong views on the importance of debate about ethical issues, but the longer I work in this area the more shades of grey I see.’
L: ‘That’s what I thought from everything you write. So why does your blog say you have strong views on the actual issues?’
H: ‘I didn’t think it did.’
L: ‘I think it does. At the end of that interview about “Who’s your favourite author?”’

Of course, I went hot foot to my blog and that link to the said interview (stories-of-my-life). After all, my reputation’s on the line here. Even-handed, that’s me. Leave-the-reader-to-form-their-own-conclusions: that’s my style. Had I really been careless enough to shoot myself in the foot here?

Whoops! There it was.

Q. Do you have strong opinions on the ethical questions facing your characters?
A. Having worked in the field of ethics for decades, the more I know about these complex issues the more I’m conscious of the grey areas. When I get inside the skin of my characters facing difficult choices I see different perspectives which may require different solutions, because our value systems, beliefs and experiences influence what we see as right or wrong. In Right To Die, Adam is an analytical journalist weighing up the value of his disintegrating life. His mother is rigidly religious, with hang-ups about suicide. His GP is influenced by a strong professional moral code. Who’s right? Who’s to say? So the answer is, yes (my italics).

My reaction evolved slowly.
Stage 1. Chagrin. Mortification. Annoyance (with myself I hasten to add).
Stage 2. Pause for reflection. I try to think myself back. Why did I say that?
Stage 3. Apology to Lindsay with promise to do better in future.
Stage 4. Good night’s sleep. Subconscious works on issue.
Stage 5. Revisit original interview.
For once I’m glad I haven’t had time to tidy up the files on my computer. Because there it is!

The answer

The set of questions I’d been asked during that interview had inexplicably changed when they reached the printed page. The original question was:
Q. As a medical ethicist, are there any issues you are still uncertain about?
A: As above.
And of course the answer to that question is emphatically yes!

So a big thank you to Lindsay for giving me the opportunity to right a great wrong. And for a timely reminder of that paragraph in the 17th Century Nun’s prayer:

‘I dare not ask for improved memory, but for a growing humility and a lessing cocksureness when my memory seems to clash with the memories of others. Teach me the glorious lesson that occasionally I may be mistaken.’