Crucial Decisions at the Beginning of Life
In the welter of Christmas Fayres and concerts, charity fundraisers, shopping, wrapping, writing, cooking, I’m very conscious of the many folk out there for whom this whole season is a nightmare – the bereaved, the lonely, the sick, the burdened. A frightening number of my own friends and relations fall into the special-card-category this year. No mention of ‘merry’, or ‘happy’, or ‘festive’. Perhaps a wish for peace. Or blank for my own message.
Thinking such sombre thoughts brings me to a book I read a while ago that gave me cause for some deep reflection.
In a former life I was Deputy Director of Research in the Institute of Medical Ethics, and for many years I studied the issues around the treatment of tiny and sick infants born at the very edges of viability. Mortality and morbidity statistics for this group of children are high, and sometimes difficult questions have to be asked about whether it’s wise and morally right to offer, or to continue, treatment. My research involved listening to the firsthand experiences and opinions of 109 bereaved parents in these kind of circumstances.
What a privilege. Interviews lasted anything up to five and a quarter hours at a sitting – sometimes well into the night – and I subsequently went over and over the recorded interviews in order to analyse and report their stories faithfully.
Now, you can’t immerse yourself in profound human misery of this calibre for many years without being affected in some way, and the effect of this accumulated heartbreak has remained with me ever since. It has changed my tolerance levels, it has altered my perspective on life in many ways.
So I was predisposed to respect the writing of Lyn Smith who spent 25 years recording the experiences of Holocaust survivors for the Imperial War Museum Sound Archive. Her burden is immeasurably heavier than mine. But like me she has chosen to share these stories so that others might know and understand better. She’s used interviews with over 100 contributors to assemble a powerful oral history of the atrocities perpetuated by the Nazi regime in Forgotten Voices of the Holocaust.
The book is carefully structured, covering the changes before the war when persecution began, the creation of the ghettos, the inhumane treatment of the concentration and death camps, the resistance movement, death marches, liberation, and the trauma of the aftermath. It begins rather mildly and somehow the evil creeps up on you, devastating in the power of first person accounts, even though the essential stories are well known. And I was totally unprepared for the horrors that continued after repatriation.
As Laurence Rees says in his foreword, ‘This book will trouble you deeply.’ It will. I’m not going to attempt to give you a flavour of it. You need to hear the voices of Kitty, Joseph, Rena, Roman, Alicia, Maria, Charles, and their fellow-sufferers for yourself. And you need to build up to the unbelievable treatment they endured simply because they were Jews or gypsies or Poles, or Jehovah’s Witnesses or homosexuals or some other so-called ‘subhuman’ species deemed unworthy of life.
This is not a book for the faint-heated – no surprises there. Tales of persecution, torture, murder, rape, make discomforting reading, and these personal but stark, unembellished accounts describe a depth of depravity grotesque beyond words. And yet these people survived, against the odds. What’s more they found the courage to relive the horror, the words to capture the pictures and emotions, the spirit to go on. And sometimes even to forgive.
Nor is it unmitigated darkness and despair. Despite the brutality and degradation, the fear and nightmares, the stories are lightened by flashes of humour, by memories of astonishing and inexplicable acts of kindness, by glimpses of dignity and compassion, by a remarkable lack of vengeance, by amazing demonstrations of courage.
Lyn Smith expresses the hope that ‘Gathered together … this mosaic of voices gives access to the complexity and human reality behind the abstract statistics of extermination and allows readers to see beyond the stereotypes of what constitutes a “victim”.’ I believe it does.
What a week since I last posted a blog! The news has been a positive playground for medical ethicists!!
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?