Terry Pratchett
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.
Parting is such sweet sorrow
Reports of my death have been greatly exaggerated. This week at least.
But one day they won’t be, and I’ve been giving quite a bit of thought to my forthcoming demise of late. Two people I know well are terminally ill right now and that does tend to concentrate the mind somewhat, I find. So forgive a rather more sober than usual reflection this week.
You don’t get to my age without knowing loss. My father died suddenly and dramatically – a heart attack on a bus. My sister-in-law died slowly from cancer. My mother died in steps and stages – a series of strokes and vascular dementia. All were sad experiences and all left the family diminished.
But when I think of how I’d personally like to go, then there’s a clear winner. I’d choose my father’s death (without the bus!) – retaining dignity, independence and enjoyment of life right up to the end, then a nice quick clean end. OK, I know it’s a shock for the family, but it’s a great way to go for the ’victim’. And I’m talking about the victim – me.
Why this navel gazing? This week’s newspaper headlines. I spend time every week with people with dementia, and my recent experience with my mother is still very vivid in my mind, so of course, I pricked up my ears at the big print a few days ago: Britain faces dementia catastrophe …
People now fear dementia more than cancer or even death.
Were you surprised by this? I wasn’t. There’s something particularly harrowing about watching someone you love lose their connection with the world and you. Seeing them behaving in ways they’d be horrified by if they knew. Fearing they have a glimmer of insight. Knowing it’s all downhill. Of course, I know there are wonderful people out there doing amazing things to capitalise on the positive, minimise the negative. And I salute them. But dementia is still a distressing disease. And the statistics are scary.
‘One in three pensioners will die with it.’
‘A million people will suffer from it within two decades.’
‘Twelve times as much is spent on cancer research as on research into dementia.’
‘There are six times as many scientists working on the treatment of cancer.’
‘As many as a third of people who develop dementia are never formally diagnosed, and without a diagnosis they aren’t receiving the services to which they are entitled.’
The facts were spread all over the papers.
It’s a massive and increasing problem. And it’s scaring people rather like the threat of HIV/Aids did back in the 80s and 90s. Only none of us can hide from this particular threat. It isn’t affecting specific groups; it’s lying in wait for any one of us regardless of class or wealth or lifestyle. You can’t buy yourself out of this one. You can’t insure against it. You can’t put yourself outside of its reach by any means except perhaps dying very young. Or committing suicide.
Funding cuts are threatening to reduce spending in the neurosciences (that includes research into dementia and mental illness) by £4 million. But Alzheimer’s Research UK has launched a special appeal for public response to increase investment in this cause. Because the world still isn’t taking enough notice of this massive problem. Is it because so much of the tragedy is played out behind closed doors, I wonder? Sir Terry Pratchett thinks so. And he’s got a vested interest in this.
How sad is that? Sigh.
Me? I’m off to chop things very, very small!