Assisted dying: what’s disability got to do with it?

Assisted dying, assisted suicide, assisted killing: call it what you will, I’m in favour of it as an option for terminally ill adults of sound mind who want to die. Nevertheless, I try hard to keep up with the arguments against it. I think I understand them all, with the exception of those emanating from various disability lobby groups.

I first noticed their participation in the campaign against Lord Joffe’s bill on assisted dying for the terminally ill in 2006. Making common cause with them was the Archbishop of Canterbury, who led the opposition to the bill in the House of Lords. He divined in the bill a message that “certain kinds of life are not worth living” (BMJ 2006:332;1169, doi:10.1136/bmj.332.7551.1169).

This year Lord Falconer attempted to introduce an amendment to the Coroners and Justice Bill that would have removed the threat of prosecution from those who help others to commit suicide abroad. In that debate the star turn was the disabled peer Baroness Campbell, whose spinal muscular atrophy requires her to use a wheelchair and a ventilator. Of the proposed amendment she said: “Be under no illusion that this is not about disability. It is. I tick every box of the definition of the noble and learned lord, Lord Falconer, for going to Switzerland to die.”

Except that she didn’t tick the only box that really mattered: the one that says “I want to die.” On the contrary Baroness Campbell has made it abundantly clear that she wants to live. “I’m bossy. I’m ambitious. I love ideas. And I love life,” chirruped the headline to a recent newspaper profile of her (www.guardian.co.uk/society/2009/jul/11/lady-campbell-disability-peer).

Baroness Campbell believes that sanctioning assisted suicide would make doctors and those who help disabled people think that death is what is wanted by disabled people, “the very people who need every encouragement to live and not to succumb to society’s prevalent view that our situation is so tragic, so burdensome, so insufferable that surely we must want to die.”

I don’t get it. Nevertheless, the disability lobby was out again to protest against last month’s verdict in the case brought by Debbie Purdy (BMJ 2009;339:b3131, doi:10.1136/bmj.b3131). In a unanimous ruling five law lords directed the director of public prosecutions to make clear his criteria for initiating prosecutions under the Suicide Act. Commenting on the case, a spokesperson for Right to Life said that the organisation opposed any change in the law because it undermined the rights of vulnerable people.

The rights? I understand that changing the law might mean that some people could feel under some obligation to bring about their premature end to avoid being a burden to others—and that severely disabled people might feel this more than most. But should such a risk override the freedom of competent terminally ill people to bring about their own end at a time of their choosing?

In the debate on the Falconer amendment in the House of Lords it was down to that wise old bird, Baroness Warnock, to dispel the sloppy thinking: “I think there is confusion if we run the disabled as a class of people, members of society, into another class of people, the terminally ill, although they may overlap. There are two different concepts, and we should not bring them together under the general heading of the vulnerable about whom we hear, in my experience, all too much.” I hope Baroness Warnock lives for ever, although I know that she does not want to.

You wait ages for a baroness, and then half a dozen turn up at once. A baroness very active in opposing a change in the law on assisted dying, both inside and outside the House of Lords, is Baroness Finlay, a professor of palliative medicine. In my attempts to keep abreast of the arguments against assisted dying I read her recent Lancet essay, “Dying and Choosing” (Lancet 2009;373:1840-1, doi:10.1016/S0140-6736(09)61012-6). In it Baroness Finlay notes that the arguments of pro-euthanasia campaigners have moved on from the relief of terminal suffering to the promotion of personal choice and control. The baroness is sniffy about this progression. “If the keystone of the case for legalising euthanasia is to be the right of a patient to decide when he or she has had enough of coping with illness and to demand medical help to die, it is but a short step from there to arguing that such a facility ought to be available to people who face the prospect of many years of living with their conditions as well as those who are in the closing stages of their lives.” So let’s not agree to help mentally competent people with terminal illness to die because one day we might extend that service to, say, 23 year olds left quadraplegic by rugby injuries.

A cheap shot and, yes, hard cases do make bad laws. But show me an easy case in this area. What’s clear is that the public is in no doubt that the current law needs changing. A recent Harris poll indicated that 79% of people agree that someone who is terminally ill should have the right to die. And a poll for the Times found that three quarters of people wanted to allow doctors to help terminally ill patients to end their life. Earlier this month the Royal College of Nursing switched from opposition to assisted dying to neutrality, while the BMA is currently opposed to it. The BMA has flip flopped in recent years, sometimes after short debates and total votes numbering in the low hundreds—this from an organisation with more than 140 000 members. Surely it’s time for a carefully worded secret ballot of all its members.

Let me play you out to the words of another baroness, Baroness Hale, one of the law lords who judged Debbie Purdy’s case. “It is not for society to tell people what to value about their own lives,” she said. “If we are serious about protecting autonomy we have to accept that autonomous individuals have different views about what makes their lives worth living.”