“So you're going to sort of die?”
“Oh yes.” The cat purred as the fingers tickled it behind the ear.
The smith looked embarrassed. “When?”
The wizard thought for a moment. “In about six minutes' time.”
“Don't worry,” said the wizard. “I’m quite looking forward to it, to tell you the truth. I’ve heard it's quite painless.”
The blacksmith considered this. “Who told you?” he said at last.
The wizard pretended not to hear him. He was watching the bridge, looking for tell-tale turbulence in the mist.
-- Terry Pratchett, “Equal Rites”
Joe Magro is 56 years old. He should be getting ready for his retirement. He certainly wants to live life to the full. Yet, it is with the same calm demeanour of the above passage that he informs his interviewer that he is dying. Joe has ALS (remember the “ice bucket challenge”?), a terminal degenerative disease that will slowly, but inevitably, rob him of his ability to move. First to go will be his ability to walk, move his arms or hands and to speak, but eventually he will lose his ability to breathe.
Joe has no idea how long he has left. 90% of ALS sufferers only survive for two to five years - and Joe was diagnosed almost a year ago. Like many degenerative diseases, its progress is not constant. Joe could take a sudden turn for the worse, or he could get along for years to come. Already Joe cannot write or shave, his walking is laboured and his speech does not come flowingly.
What scares Joe is not death. In the past months he has come to terms with his situation. What he does not want is to end up spending his last months lying still in bed, unable to move or communicate, to express his wishes or feelings. Joe has already watched his first wife succumb to cancer 17 years ago. He knows what it means to go slowly.
Before he gets to that state, Joe is determined to die. There’s one problem. Our laws - like many laws around the world - forbid anyone from helping Joe to achieve this. No doctor, not even his wife and four children, can do anything legally. This places an undue pressure on Joe not to wait too long if he’s to end his own life.
The author Terry Pratchett, who penned the passage at the top, himself suffered from Alzheimer’s disease, another degenerative disease which robs its victims of their mental faculties, and found himself facing the same unpleasant decision as Joe. He made a TV documentary called “Choosing To Die”, documenting his own emotions as he interviewed people who had chosen to die, and others who had chosen to live for as long as they could, going from Swiss euthanasia clinic Dignitas, to Hospices which do a sterling job of alleviating the pain of terminal patients. In the end, Pratchett died of the disease in March last year. It’s a hard-hitting documentary but very worth watching.
It has always been a natural human instinct to try to live for as long as possible, and a lot of effort has been expended in medicine to postpone death - to the extent that we can even keep a body alive for months after the person has died, as happened recently to a brain-dead pregnant woman whose body was kept functioning until it was safe to deliver her baby.
Yet, in our obsession to put off the inevitable we have to spare a thought to whether this is always the best option - and there is nobody who can make such a determination better than the person whose life it is. Not everyone would wish to end their lives early. Physicist Stephen Hawking wants to live and shows that even with severe limitations, one can lead a very full life. And then there are other people to whom every waking moment is a punishment, a torture which would constitute a crime against humanity if it were actively inflicted upon someone.
It is time that we take this taboo subject and tackle it. People like Joe are relying on us as a nation to consider their situation with compassion, not rigid bureaucracy. British pensioner Tony Mitchell, denied access to assisted suicide, ended up starving himself to death instead. As things stand, our pet animals can be shown mercy through euthanasia, yet we cannot make the same choice for ourselves. This has to change. People can and do accept death with serenity and must be given the right to choose the manner and timing of their deaths.
Clearly, any change to the law must be done carefully, including safeguards to ensure that this irreversible decision is the correct one - but it can be done.
AT LAST, MISS EUMENIDES TREASON, WE MUST WALK TOGETHER.
Death took her gently by the arm.
-- Terry Pratchett, “Wintersmith”