MAll people have a vision that they will die a good death because they saw it on television. A patient lies in bed, together with his loved ones. Holding hands. Mozart plays before they fall into a deep sleep.
For most, death isn’t like that at all. My first husband had a terrible death. He didn’t want to die because he felt he had to live for me and the children. But he had emphysema. At times he couldn’t breathe and doctors had to put him on a cart to reach the right equipment. It was incredibly disturbing. We ran down the hall and he tried to grab my hand. Once he put my thumb in his mouth and sucked it like a child with a pacifier. The doctors pushed me aside and took him to a defibrillator. The next day I went back to the hospital and he was doing well. I thought: how many times do we have to experience this?
I’m definitely one of those boring women who feel they have to get involved; always wanting to make things better. But the fact is that we don’t deal with it well. There is no doubt that palliative care should be much better. It could be the solution for most people who want to die; if you could take away the pain and the horrible death, many of them wouldn’t want to die. But some do. They have had enough of this life and want out. My feeling is that it should be their death, their decision.
My brother David had terminal bone cancer and desperately wanted to die. Luckily it was only three weeks of total pain. But those were weeks when he should have relaxed and said goodbye to his family.
What often happened in the past is that doctors gave dying patients a little too much morphine, with a nod and a wink from the family. Because the end was near and they could shorten it like you would a dog, just to limit the suffering. But they wouldn’t do that in the hospital. It was almost a farce. The consultant said to me: ‘Do you realize that morphine is addictive?’ I said, ‘I don’t care if he’s as high as a kite, he’s got weeks to live. What does addiction have to do with anything right now?” They were not compassionate.
When he was home, nurses under the hospital’s jurisdiction came to give him his medicine every four hours. They said they had patients begging them to get enough medicine to ease the pain in the head, but since (serial killer and GP Harold) Shipman, no nurse or consultant wants to ruin their lives with a suspension. Why can’t we pass a law that makes it much more open and transparent?
We often talk about the three S’s. There is suffering: you can endure it, put on a brave face, have a terrible time. There is Switzerland, which is very expensive and many people don’t want to go to an industrial estate somewhere outside Zurich and die with complete strangers. Then the third option is suicide. Suicide doesn’t always work and is terrible for the family.
The Health and Social Care Committee recently published are findings after studying overseas examples of jurisdictions that have assisted dying. In response, Esther Rantzen told the BBC that there was no evidence of the “slippery slope that so many worry about”. For example, in Oregon, a state that has allowed assisted death for 26 years, there has never been a family saying, “My loved one was forced or paid to die.” Of course it’s hard to prove because the people are dead. But the fact is there is no evidence.
There is an argument that if you have something like motor neurone disease, dementia or Parkinson’s disease, you can live an absolutely miserable life but have no prognosis of death within a year because it can take fifteen years for you to die. The fact is that the law will always be somewhat discriminatory, but I think we have to start very narrowly and do this after we have looked carefully at what everyone else has done.
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I’m really hopeful. It feels like the mood has changed – even among politicians and doctors. It is urgent that we look at this now. Not least because I’m getting older! But also because we have an aging population, where the number of retirees exceeds the number of children. This means that many more people are faced with this terrible choice every year. Even though I’m healthy at the moment, I’d love to have a little deadly concoction sitting in a vault, waiting for the right moment. And I prefer it to be legal.
As told to Harriet Gibson