Dignitas
To die or not to die – that is the question
Yes, it’s reared its head again as another new year gets underway. The perennial dilemma. Assisted dying: should we? shouldn’t we? [Cue king-sized sigh.]
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.
Honour killing
If you are of a sensitive disposition and a member of the female persuasion you might choose to look away NOW – you can come in again at the asterisk below.
Ahah! Did you think I was going to talk about the BBC documentary on assisted suicide? Sir Terry Pratchett investigating the experience of the Dignitas option in Switzerland? Yes, I know it’s my kind of subject, but it seems to be being done to death (sorry!) elsewhere, so I’m not. Besides I feel too disturbed about what I saw to write about it at the moment.
No, today I’m turning my beady eye onto a different controversy. Women: their status, their potential, and how they’re treated.
I didn’t go to the Hay Festival this year, but I did follow reports of it. So I heard about VS Naipaul (winner of the 2001 Nobel Prize for Literature) insulting women big time. None of them, past or present, could possibly be as great as he is, he declared. Full stop. (He even singled out Jane Austen as way beneath him. Jane Austen!!)
Of course, as you probably know, his history is littered with offended people. Why, his own philosophy includes: ‘If a writer doesn’t generate hostility, he is dead’.
But this time his boasting about his own achievements and his relegation of all women writers as doomed to inferiority by their ‘sentimental’ attitudes and ‘narrow view of life’, hit the raw nerves of way over half the population. He even compounded his sweeping assertion with this partial explanation: ‘And inevitably for a woman, she is not a complete master of a house, so that comes over in her writing too‘. Hello?!!
OK, you might say, what would you expect from someone whose private life is a study in misogyny and discrimination? Well, I for one would prefer to see great talent and acclaim generating humility and gratitude and deference to the success of others. Not arrogance, unwholesome pride and cruelty. End of rant.
*(Those females of a sensitive disposition may re-enter the fray here.)
So I turned with relief to a story of the suppression of women which sets a context of triumph over evil and the power of love.
‘For almost three decades now, the Afghan refugee crisis has been one of the most severe around the globe. War, hunger, anarchy, and oppression forced millions of people to abandon their homes and flee Afghanistan to settle in neighboring Pakistan and Iran. At the height of the exodus, as many as eight million Afghans were living abroad as refugees.’ So says Khaled Hosseini in the afterword to his novel, A Thousand Splendid Suns.
Hosseini was born in Kabul, Afghanistan and became US goodwill envoy to the UN Refugee Agency, so he speaks with both knowledge and sincerity. That authenticity shines through the story of the illegitimate Mariam, the ill-fated childhood sweethearts Laila and Tariq, the troubled children, Aziza and Zalmai. As does the author’s empathy and humanity.
But it’s the quiet depiction of abject poverty, of domestic brutality and female suppression, of sacrificial marriage between young teenagers and much older men, that makes this book the moving and sensitive tale it is. We in the UK read of honour killing with horror in our hearts, but Hosseini conveys quite masterfully the essence of a culture that permits such acts. We see how it happens that wives submit to constant abuse, husbands lock their wives out of sight, fathers kill or reject their daughters, and laws condone such discrimination.
Hosseini’s understated prose is eloquent in its simplicity.
Laila marvels that ‘… every Afghan story is marked by death and loss and unimaginable grief. And yet … people find a way to survive, to go on.’
Mariam’s mother warns her from infancy: ‘Like a compass needle that points north, a man’s accusing finger always finds a woman. Always. You remember that, Mariam.’
One of the judges in the trial of Mariam years later says, ‘God has made us differently, you women and us men. Our brains are different. You are not able to think like we can. Western doctors and their science have proved this. This is why we require only one male witness and two female ones.’
Naipaul would fit right in here, wouldn’t he?
As the cover says: ‘A Thousand Splendid Suns is an unforgettable portrait of a wounded country and a deeply moving story of family and friendship. It is a beautiful, heart-wrenching story of an unforgiving time, an unlikely bond and an indestructible love.’ Indeed it is.
And all the reader’s sympathies are with the downtrodden women. I salute Hosseini as a true master-storyteller. As for self-acclaimed Naipaul, well, his ranting and posturing say much more about him than about women.
New Year, new impetus
Well, it’s here! 2011. And a very happy New Year to you all.
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.
