It’s not because I want to die

Debbie Purdy is pictured in front of the House of Lords with her husband, Omar Puente following the Law Lords historic decision to clarify the law on assisted suicide on July 30, 2009 in London, England.

Exclusive excerpt from Debbie Purdy’s book, It’s not because I want to die, published by HarperCollins, 2010. In July 2009 Purdy won a significant legal victory in the UK’s House of Lords which lawyers have described as a turning point for the law on assisted suicide.

Purdy, 46, from Bradford, West Yorkshire, who has primary progressive multiple sclerosis, succeeded in arguing that it is a breach of her human rights not to know whether her husband, Cuban jazz violinist Omar Puente, will be prosecuted if he accompanies her to Swiss clinic Dignitas where she wishes to die if her condition worsens.

We are publishing pages 223-230 of chapter 19, in which Purdy explains why Dignity in Dying took the decision to support a legal case in order to test the law on end-of-life choices.

Defining Moments
1963 Born in London
1995 Meets her future husband, the violinist Omar Puente. Is diagnosed with multiple sclerosis
2001 Becomes wheelchair-bound
2008 Loses first attempt at high court to obtain guidelines on assisted suicide
2009 Wins appeal in House of Lords
2010 Guidelines on assisted suicide are released, clarifying whether Puente will face charges if he helps her die

Order your copy of It’s not because I want to die on Amazon.co.uk now!

Excerpt (pages 223-230)

We all know there are “good” deaths and “bad” deaths. A good death is relatively painless and comes at the end of a long life, hopefully with family by the bedside able to say their last farewells, a reflection of the life they lived. The worse deaths can mean months and even years of unbelievable torment, when no pain relief works effectively and every moment is a living nightmare. Those who argue that palliative care is always appropriate should meet some of the families of people who endure appalling suffering and beg fruitlessly to be allowed to end their lives. Polly Toynbee wrote a moving article for the Guardian about her mother’s death, while John Humphrys has written a book, The Wellcome Visitor, describing his father’s final months. There are hundreds more stories like these that are never told. None of this should happen in a civilised society, but bad deaths are common. We probably all know people who will go through what Polly Toynbee calls ‘state torture’ at the end of their lives.

Modern medicine cannot deal with all forms of pain. Sometimes the pain relief doesn’t work, or the patient can’t tolerate it. Doctors are pretty good at relieving some pain but not so good with others. Sometimes you have to choose between pain and the side effects of the ‘relief’. What one person finds bearable, another might not. I don’t think you can either promote or prohibit one course of action, because it depends on the patient.

Some people would rather not stay alive if they feel they’ve lost an acceptable quality of life. Diane Pretty was, at the end, totally paralysed, unable to swallow, talk or do the things she found pleasurable. There’s also the mental anguish of fearing what the end might bring. In Diane’s case, her greatest fear was to choke and suffocate, and tragically that is exactly what happened to her. What were her feelings in those final moments of consciousness? Sheer blind terror, I imagine.

The problem is that if you wait until you are paralysed, it is too late to take your life on your own and you will need the assistance of a friend, relative or sympathetic doctor to end your life. When should I kill myself? My hands are losing their dexterity and I’m no longer able to push pills out of a blister pack or undo a childproof bottle, so it would be hard for me to take an overdose now without help. Beside, I’m prone to choking, so I might cough them all back up again. Have I left it too late? Should I have gone sooner? But I still have a full and fascinating life that I have no desire to leave.

Maybe I could wait a little longer if I go to Dignitas, but I would have to be capable of getting myself there, or I would risk whoever took me being arrested and charged with aiding and abetting a suicide. I certainly wouldn’t want to leave it so late that someone else had to be involved, in which case they could be charged with murder.

Heather Pratten was prosecuted for helping her son to die. Nigel had the neurological disorder Huntington’s disease, which causes all kinds of dreadful physical and psychological symptoms. He had watched his father die a prolonged death from the disease, spending over ten years in hospital, and he didn’t want to go through the same thing. On his 42nd birthday he said to his mum, ‘The best present you could give me would be to help me to die.’

Heather did her best to make him change his mind, but finally agreed to sit with him while he took a fatal overdose of heroin so that he didn’t have to die alone. He was terrified that it wouldn’t work and he would survive but in an even worse condition than before, so she cuddled him until he lost consciousness and then she held a pillow over his face. What must that experience have been like for a loving mother? It’s unthinkable.

Heather was arrested and charged with aiding and abetting a suicide, and when the case came to court, she pleaded guilty. The judge gave her a conditional discharge for a year because of the ‘exceptional circumstances’ but warned that others might not be treated so leniently.

How could anyone think that Heather Pratten deserved to be prosecuted? It was an outrageous waste of public money and totally inhumane treatment of a woman who was grieving the loss of her son. With each new story I heard, I was becoming increasingly enraged and frightened about losing control of my life.

In contrast to these horrific cases, in January 2006 I read about the very dignified death of Dr Anne Turner, a retired doctor who had been diagnosed with a neurological disease called progressive supranuclear palsy (PSP). As she explained in the letters she left behind, PSP is near the top of the list of diseases that doctors pray they will never get. The actor Dudley Moore died of it in 2002 and at the end of his life he could no longer walk, talk, swallow or even blink his eyes. Rather than go the same way, Dr Turner decided to commit suicide. She made one attempt to kill herself in her own home, but it was unsuccessful. If a doctor can’t guarantee success, what are the odds for the rest of us?

Dr Turner then explained to her family that she would like to go to Dignitas to die, and her three children eventually said they would go with her. On 24 January 2006, in the Zurich clinic, she drank a barbiturate prescription, with her children there holding her hands. However, as she said in letters she left behind, she could have lived a lot longer if she had been able to request an assisted death in Britain. She felt she had been forced to die before she was completely ready to do so, and in a foreign country, simply so that she could do it on her own without implicating her children.

A  BBC dramatisation of Dr Turner’s story attracted a lot of comment. It was extremely moving television, and Julie Walters, who was playing Anne, gave an incredible BAFTA-winning performance as that bright, intelligent woman.

Because of the terrible experiences people were continuing to have at the end of their lives and because people were having to travel abroad to die, after Lord Joffe’s bill was finally defeated, Dignity in Dying decided to support a legal case in order to test the law on end-of-life choices.

At that time I was a board member of Dignity in Dying and wanted desperately to challenge the law. I loved my life but was so scared as my MS progressed. The case they first supported was that of Kelly Taylor, a seriously ill Bristol woman. Kelly suffered from a range of rare and debilitating diseases, including Eisenmenger’s syndrome, which meant her heart and lungs didn’t work properly, and Klippel-Feil syndrome, which was making the vertebrae in her spine fuse together. Her health had been deteriorating since she was 7 years old and by the age of 30 she was confined to a wheelchair and needed oxygen supplied through a breathing tube. She was in constant pain because of an allergy to the painkilling drugs that usually treat Eisenmenger’s. Her sleep was disturbed by nightmares caused by the medication she was taking. She had bedsores, breathlessness and, she felt, very little quality of life.

In August 2005, at the age of 30, Kelly decided to starve herself to death, because it was the only way she could commit suicide without getting her husband, Richard, into trouble with the law. Even though no one had yet been prosecuted for accompanying a loved one to Dignitas, she didn’t want to take the risk, and besides, she wanted to die in her own country, at home with her loved ones. She stopped eating and her hunger strike received a lot of public support, but the agonising pains of starvation became too much for her after nineteen days without food and she had to give in.

Kelly tried to persuade her doctors to increase her medication to a level that would cause her to be deeply sedated, and then to withdraw food and hydration, following the terms of a living will she had written. They refused and that’s why she decided to take her battle to court.

‘I have had enough of my illness,’ she said. ‘I have made the decision because enough is enough. I’m just hanging on. I don’t want to be here. I don’t want to suffer any more.’

Kelly’s solicitors argued that they weren’t asking doctors to do anything illegal. ‘The only way she can be free from pain is if the pain relief doses are increased to the level where she loses consciousness.’ They argued that to refuse this was contrary to Article 8 of the European Convention on Human Rights, which bans ‘inhuman and degrading treatment’.

However, the British Medical Association came out on the other side, saying that it was ‘unlawful and unethical’ to give someone morphine with the intention of ending their life. That old double-effect argument again! With the full weight of medical opinion behind them, Kelly’s doctors began to put pressure on her to try some non-drug treatments, such as intensive physiotherapy, to help relieve her constant pain. In court, they kept saying to her that she hadn’t looked at all the alternatives and that there were different kinds of treatment she could try.

Kelly felt she had already considered the options carefully, but the weight of medical opinion built up and in the end she felt compelled to withdraw her case. She was very upset about it. A victory would have paved the way for people in the UK to ask doctors to use doses of medication that would shorten their lives – basically legalising what we all know happens already in some cases. But it wasn’t to be. How desperate does someone have to get? No eating for nineteen days is a pretty clear, unequivocal sign that a person no longer wants to live, but Kelly felt she was forced to carry on.

Now my case was being considered. ‘I know you may die from the symptoms of your MS, but you’re not terminally ill,’ Deborah Annetts, the chief executive at the time, objected.

‘I need to know what’s likely to happen if I ever reach the stage where I want to die. I can’t relax and truly live unless I know.’

Dr Anne Turner’s situation really held sway with me. I didn’t want to have to end my life before I was ready just so that I could protect loved ones from an unfair threat of prosecution. But what if I waited and my disease progressed to a stage where I wasn’t capable of getting myself to Dignitas? What if Omar had to take me (always assuming he would agree to do so)? So far, in 2007, no one had been prosecuted for taking a relative to the Zurich clinic, but Omar was black, Cuban and English wasn’t his first language. He might just be the one they decided to throw the book at. Educated, middle-class white people might be able to find ways to work around the law, but statistically, if you are black, you are more likely to be arrested and found guilty of crimes. I couldn’t take the risk that Omar would be imprisoned after my death. I didn’t even want to take the risk of him being arrested.

Posted by N4CM on 15 Jan 2011. Filed under Books and tagged with Right to die. You can follow any responses to this entry through the RSS 2.0. You can leave a response or trackback to this entry

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