The greatest campaign of the twenty-first century?
Sarah Wootton, chief executive of Dignity in Dying, discusses the importance of the fight to legalise assisted dying
In 2007, when considering whether to leave the Equal Opportunities Commission, I knew I wanted to move to another equally important and valuable campaign. Once in a generation a controversy arises on an ethical or political issue in which strong pressure for change is met by strong resistance. Examples have been the abolition of the slave trade, the legalisation of homosexuality, the legalisation of abortion, and the decriminalisation of suicide. Many of them share a common theme – the extension of liberty and choice (responsibly exercised), and rejection of the right of the state or church to make decisions on an individual’s behalf. The movement to legalise assisted dying for terminally ill people is one of the great campaigns of the twenty-first century. I have never been more aware of the importance of fighting for what I believe is right, not only for myself, but for those who are unable to fight, and for those like Diane Pretty who died fighting. As I see it, Dignity in Dying really has just one driving force, and that is compassion. I genuinely believe that, which is why it is so frustrating when opponents to choice at the end of life paint such a dark picture of us.
John told his wife’s story: ‘About a week before my wife died in 2000, I plucked up courage to ask her “where do you want to die?” She said, “At home.” We mounted a vigil on Sunday night, but she survived the night. At 7pm the doctor she had seen phoned. I said, “I think she has only hours left.” He said, “Tell her to let go and never mind about the rest of us.” I said, “Thanks, I will.” I did. She smiled the most beautiful smile I had ever seen and said thank you. She relaxed and died with us at her bedside at 10pm.’
Gill has terminal cancer and has a less positive story to tell. ‘I am angry that there is no choice for me to be compassionately assisted to die if my suffering does become unbearable here in the UK, and if there were a UK assisted dying law I know it would give me great comfort and would improve the quality of the life I have left.’
The stories that we hear every day at Dignity in Dying can be frustrating. People like Gill have to spend their final months worrying about how they will die because of the paternalism that dominates end-of-life care. I fully respect people’s right not to choose an assisted death, and commend the work done by medical teams to ensure that people, where possible, can die like John’s wife, at home, without pain and surrounded by their loved ones. Unfortunately for some, palliative care does not and could never address all their suffering at the end of life, and it is for these people that we campaign for the choice of assisted dying. A change in the law to allow assisted dying would not only help the anticipated 900 patients a year in the UK who would benefit from it, but it would give enormous comfort to thousands more who, like all of us, have no idea how they will die and are concerned that they will end up suffering a bad death.
The parliamentary system is a big challenge for Dignity in Dying, as are the parliamentarians who represent us, or fail to, particularly on this issue. The most recent British Social Attitudes Survey (January 2010) shows that public support for assisted dying for terminally ill people is at ninety-two per cent among non-religious people, and seventy-two per cent among people who consider themselves to be religious. However, only half of MPs think that doctors should not be prosecuted for helping their terminally ill patients to die. These are deeply contested issues with strong feelings on both sides. But it’s also clear that it is politically expedient to sit on the fence on this issue. A large proportion of the twenty-eight per cent of religious people who oppose assisted dying will refuse to vote for those MPs who support it. In contrast, the majority who support a change in the law will have a whole host of issues which will affect their vote.
Amidst the frustrations surrounding parliament we had our most significant success for decades when Debbie Purdy’s case was won in the house of lords in July last year. The 1961 Suicide Act made assisting a suicide a crime, although the director of public prosecutions (DPP) was given discretion over whether to prosecute. Almost fifty years later the Purdy case established that, although assisted suicide is still considered a crime, the vast majority of known cases involving a terminally ill person are not prosecuted. As a result of the law lords ruling, in March 2010 it will be codified in policy that in some circumstances people will not be prosecuted for assisting in a suicide. It stands to reason that there will come a time, in the near future, when assisting a terminally ill adult to die for compassionate reasons at their request will no longer be a crime, within safeguards.
Another important advance in 2009 was that our partner charity, Compassion in Dying, was fully established and from December 2009 has been providing advance decisions free of charge. Advance decisions are a vital tool which enable people to set out, in advance, their end-of-life treatment wishes in case they lose the capacity to make those decisions when the time comes. Advance decisions reinforce our right to be at the centre of decisions made about our own care, and this is a fundamental element of the campaign for greater patient choice and involvement at the end of life.
Following the success of 2009 we are not complacent. We have a fight on our hands this year; opponents to choice at the end of life will be attacking every aspect of our work. They will not only continue to fight against a compassionate assisted dying law, they will also try to roll back the progress Debbie’s case made in clarifying the law on compassionately assisting a loved one to die, and most worryingly of all they have begun to attack our fundamental right to refuse medical treatment by asking for the withdrawal of legislation enforcing advance decisions.
For more information email info@dignityindying.org.uk, call 0207 479 7730 or go to www.dignityindying.org.uk
You can download a free advance decision at www.compassionindying.org.uk
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