I've been away for a while. Thinking. Dreaming. Playing with words. But I've chosen to come back today and write about my personal reaction to a difficult and emotive subject which polarises opinion. You'll probably know what I'm talking about. Terry Pratchett's BBC documentary, Choosing to Die was screened on the BBC last night. I cried throughout, though not for the reasons you may imagine. It was a dignified, wonderful and moving programme made with unflinching bravery and infinite compassion. Much will be said on both sides of the fence about the rights and wrongs of assisted suicide. I can only speak for myself here.
Terry Pratchett is above anything else a writer. He has long been one of my favourite authors in the world. He makes me laugh, he makes me cry (more crying), he makes me think how damned clever he is and how I wish I could construct the kind of punes he does without looking like a complete fule. He also happens to have Alzheimer's. He's made 'coping with it' jokes about that--at the beginning wondering "what kind of vegetable would I be?". Now, as the condition progresses, he is confronting his own end--and how he would want that to occur.
"When I can no longer write my books, I am not sure I want to go on living" he says in the programme.
I understand that. I do so understand that. In the last weeks, I have had a scare with my eyes. I have thought hard about not being able to read, to see--to type the words which demand to be let out of my head. It was and is a fearful terror and it made (and makes) me feel sick and scared and lost. So, as a writer, not to be able to rely on one's brain to come up with the goods--to lose the words which make you who you are--must be unimaginably horrifying to contemplate. Terry says that the things which would make him consider ending his own life are:
"Not being able to dictate any more; not being able to be a writer any more; not being able to communicate."
There are many dreadful and horrific things going on in our world right now. Please, don't think I'm ignoring those when I say that one of the greatest pleasures in my life is looking forward to a new Pratchett novel. A world in which that could no longer happen would be less bright for me, but I know that it will occur, probably sooner rather than later. (I feel the same way about the fact that there will now never be another Diana Wynne Jones book, by the way). But that is a very personal and probably selfish reaction. More importantly, what Terry's programme has crystallised for me is that I do now believe more than ever before that anyone with a terminal or incurable condition should have the right to choose the manner of their death and the time of it, if they wish to do so and are mentally capable of making that decision for themselves. Very few can afford £10,000 to go to Dignitas. Those who do go there from this country would much rather die in their own homes with their own things around them, with no fear that their loved ones will be prosecuted.
"Who owns your life?" Terry asks.
Who owns me? I do. And if I ever find myself in Terry's position or that of Andrew Smedley, Rob Colgan or Hugo Claus, I would like to have the choice of when to let my words go quiet. Or not to let them go quiet. That is the nature of the word 'choice'.
You can find out more about Dignity in Dying here.
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17 comments:
I'm in complete agreement, Lucy, and have been since watching my mother-in-law deteriorate through MND, desperate to make an end of herself in a dignified way. Lovely post.
Thanks, G. I am so sorry about your MIL. Thirty years ago I remember my granny asking mum to please kill her, when we were at her hospital bedside at the end. Her eventual death was nothing like dignified. Or compassionate. And we could do nothing about it.
Before I became a doctor, I didn't have particularly strong views on this issue. I had led a life where death hadn't played much of a part. I had been very fortunate. Now, I see people die every day. I hold their hands as they die and I try to find words in my head to make it easier. Despite the Liverpool Care Pathways and the Palliative Care Nurses (who are wonderful), death is often fractured and chaotic and desperate. Dying patients are terrified and lost. The days before a patient dies are incredibly distressing for the patients, the families of the patients and the staff. Now, the more I see of dying, the stronger my views have become. This is a great post, Lucy.
Thank you for a sensitive and heartfelt post.
It's bizarre that the state can order you to to drag on in a life you hate or endure a foul death distressing to everybody around you, when it can't guarantee you protection in your everyday civil life.
Terry Pratchett is an articulate and noble advocate for this last of freedoms.
I fervently hope this documentary advances the argument to change the law throughout Europe.
Thank you, Joanna. Coming from you, who works at the sharp end of this every day, it means a great deal to me that you think this is a good post.
I agree, Lucy. People should have a choice and that choice should be available to them freely and people who love them should not be prosecuted for helping them, even if it breaks their heart.
This is not relevant to me. I can't bear the thought of not being able to write, but I would want to hang on.
(Like you, I also look forward to the next Terry Pratchett, whenever and whatever it is. And every time I remember that there will never be another Diana Wynne Jones I scream inside with grief and loss)
I agree, Alison. But we live in a bizarre world. I cannot believe that anyone who watched the programme could fail to see that the law needs to be changed urgently.
I've seen death via dementia up close and very personal. Traumatic for us to watch but I can honestly say the lead up to, and management of death for this person was done with care, and consideration. He was remarkably accepting of his condition and as it progressed he became unaware of the severity of his decline and was calm and dare I say content. He died at the nursing home where he'd recieved excellent care for the preceding few years. We could visit any time night or day, unannounced and developed close relationships with staff at all levels. I would not fear such an ending as this. I know this is not everyone's experience, and I have been close to lives that ended in great distress too. We are so isolated from end of life care that fear of the unknown is overpowering. These days we talk freely and graphically about the rigors of birth, I hope we will one day be that open about death. We could then make our laws, care systems and our own personal choices with clarity and understanding. Even if you do not agree with Terry he is part of that demystifying process and is to be applauded.
Thanks, Anon. Once upon a time, death used to be a familiar part of life and so not as frightening as people find it today. Now, with our fragmented family lives, it seems to me that many old people are simply consigned to the scrapheap. We have indeed become isolated from the end of life--perhaps because of the incessant pursuit of youth and beauty. Old age has become shameful and because of that, we waste the opportunity for learning from so much accumulated wisdom. We know exactly what happens after birth--as you say, it's the unknown (and uncontrollable)'awfully big adventure' which scares Western society rigid.
I completely agree. I watched a short programme about the work of Dr Jack Kevorkian in the US. He assisted in the suicide of a terminally ill man who had decided enough was enough. The Dr. spent many years in prison for his actions, wrongfully, in my opinion, but with how the law stands, there was no other option but prison.
Watching how he helped the man to die was in some ways very beautiful and he passed on surrounded my family, in no pain and in his own home. Oh, but how amazing would that be?
When my mother was drifting in and out of consciousness the surgeon who had operated looked across the bed at me and my sister. Knowing we had medical power of attorney he asked us quietly, "Should we up the...?" and named a drug that would make her more comfortable but also hasten her death.
Knowing her wishes we did not hesitate and have always been grateful that he was prepared to give us that option. My father could not have made the decision but we made it knowing that it would not prolong the agony for either of them.
On the other hand my uncle has been given extraordinary measures more than once and against his wishes simply because the hospital staff are unwilling to allow him to die. The strain on everyone caring for him and who cares about him is immense.
It's a big issue here snd the subject of much debate - led by a Dr Philip Nitschke.
An excellent post, Lucy, thanks for writing it.
It is a dreadful shame that so many people send their last days, weeks or months in terrible discomfort and pain. I feel there should be other options for them, and for their loved ones.
I haven't seen the programme yet, Lucy,s I was - er - beguiled by Jackson Brodie.Hope to catch it on iPlayer.
I saw Sir Terry's programmes on hi Alzheimer's though and I agree with every word of your post.
I am a terrible coward and fear blindness as much as you do. I hope those eyes are getting a good rest.
Completely agree, Lucy. Back in the 60s, my Grandfather was pulled round from pneumonia TWICE, so he could die in agony from lung cancer, in pain that not even pure heroin could control. The doctor insisted that my aunt, who was nursing her father, remove his medication at night, so he couldn't take an overdose.
My aunt, having nursed first her mother and then her father through their final illnesses, came close to a nervous breakdown afterwards.
A couple of years ago I watched my mother, and then, within a year, my father, die. My mother's lingering death from a stroke in a busy hospital was distressing. And though my father finally died in a wonderful care-home, where the staff couldn't have been kinder, it was still painful for all concerned.
Like you, I've loved Pratchett the writer for years; and now I have the deepest respect for the way he's facing his death.
All these stories and comments have moved me very much. Thank you all.
It's always seemed strange to me that animals are allowed to die, but humans must be kept alive to suffer to the bitter end.
When I took my cat to the vet with a broken back (she'd been run over), and he said she'd need to spend the rest of her life sitting on a litter tray and would never walk again, we agreed the kindest thing was to put her down, which he did immediately with a quick and painless injection. If the same thing happened to my mother, would she be given this choice?
I agree with everything you and all the other folks have said on here. However I feel we also shouldn't forget that the law is there to protect against the (admittedly probably very few)unscrupulous people who could misuse assisted suicide. As authors and writers it is that very fact that allows some wonderful stories to be written. That said, I do agree that it is strange that we woudn't allow our pets to suffer yet we feel unable to help those nearest and dearest. There ought to be some way to change the law yet still have a certain level of protection to prevent abuse.
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