A friend of mine starved herself to death last month.
Erina was seventy-four. For some years she hadn’t been able to eat, walk or talk. She was fed through a “peg”, she used a Zimmer at home, and a wheelchair during her rare ventures out. Like Stephen Hawking, she used a “possum” to communicate.
Erina’s fierce intelligence was undimmed by her physical condition. She had been a GP, and she kept up by reading The Lancet. She could read, watch television, listen to the radio, and use the Internet. Increasingly often Erina fell whilst making her slow, painful way to the loo. This usually led to a night on the floor, mired in her own excrement. Erina would then rail against her condition, saying that she’d rather be dead, that her life had no quality. Last month, when she fell, it was the last straw. She cut her feeding tubes.
She was taken to a nursing home. Psychiatrists were brought. They judged her mentally capable. They signed the forms that permitted her to starve herself. The staff did their best to get Erina to change her mind. She had her hair done. She had visitors. She sat in the garden enjoying the flowers. But she refused every offer of sustenance, allowing them only to moisten her lips with a wet sponge.
It took her a week to die.
So here’s the question. Should we be able to help Erina, and people like her, to end their lives quickly, with as little suffering and as much dignity as possible? Or is the law right to say that it is wrong to help someone to die? Had Erina been able to choose a quicker method, one that caused less suffering and was less demanding of will-power, she would have chosen it. She wasn’t daft.
But Erina’s disability meant that the only way she could bring her life to an end was by refusing to eat or drink. Her carers were too well-trained to leave drugs or dangerous implements where she could get them. Her baths were always supervised. Throwing herself downstairs wasn’t an option (and might have resulted in worse disability).
Healthy able-bodied people who want to end their own lives have the “luxury” of choosing the method. Such a decision is, I should imagine, rarely easy. Several attempts might be made. But not many healthy able-bodied people choose to starve themselves. Disabled people are forced to do just this. Every time food is offered, however hungry they are, they must say “no”. However desperately they need water, to take some would undermine their goal. Fasting, apparently, gets easier as time passes. Maybe a time comes when it isn’t so very hard to keep going. But this is hardly the point. The point is that people as disabled as Erina are hugely disadvantaged when it comes to taking their own lives.
They must also endure scrutiny. It is not just the medics who must weigh their reasons for wanting to die. It is also the well-meaning carers and the worried relatives. Everyone hovers around. Some hope the disabled person won’t see it through. Others cheer from the side-lines. It must be agony.
We introduced the Disability Discrimination Act to ensure that disabled people aren’t disadvantaged when it comes to education, employment, goods and services. But the act does not reach into ending lives. Is it fair that disabled people who want to die should be forced to starve themselves under a spotlight? Or should the law be changed?
The right to suicide has existed since 1961. Before that if you survived an attempt you went to prison. But the change in the law brought only the right to end your own life. Helping someone else take their life, in this country, is murder. Even if someone like Erina begs you to kill them, if nothing more can be done to alleviate their suffering, if their quality of life is nil, it’s against the law to help them die.
In 2009 Debbie Purdy, who had multiple sclerosis, asked for the law to be clarified. She wanted to know whether her husband could take her to Switzerland, so she could die under the auspices of Dignitas. She was afraid that, were he to accompany her, he would return to a murder charge. In 2009 Purdy could have taken her own life. But she wasn’t ready. Her MS, though, was progressive. She knew that one day she would face starving herself or asking for help, with the consequent risk to her husband. The then Director of Public Prosecutions ruled that, under certain very specific conditions, the law would be lenient with those who helped loved ones to die.
This provided some solace. As Purdy herself put it, “Having the means to kill yourself means you can face the day. It gives you the strength to say, ‘OK, I’m not going to make that decision now, but I might in 10 minutes’ time. Or an hour. Or not.’ You are in control.” The possibility of a quick and painless death helped Purdy to choose life. But the ruling did not amount to a change in the law. Purdy’s case demonstrates only that a change in the law might help, not only people like Erina, but also people with progressive conditions, who might otherwise die before they are ready. But would a change in the law help?
Healthy, able-bodied people do sometimes judge that the lives of disabled people have no quality. “If I were in that condition,” one might say, “I would want to die, life wouldn’t be worth living. The kindest thing would be to help them out of their misery.” This can make it seem that depression is simply a rational response to disability. It makes sense to us that people in their condition should want to die. We might think it is our duty to help them. But a wish to die can be the side-effect of a temporary depression. In this case the appropriate response is not to think the person is rational to want to die. It is to help, to do something to alleviate the depression.
If we are to change the law, therefore, we must insist on a distinction being made between a real and settled wish to die and a wish to die that is temporary and could, in time and with help, give way to a desire to continue living. Making this distinction may not be easy. Depression comes and goes. Judging whether a wish to die is “real and settled” is not a matter of having heard someone say “I want to die” on several different occasions. It is not even a matter of a person’s wanting to die on more than one occasion.
This, I think, is what Baroness Campbell of Surbiton was worried about when, during the recent Lords Debate on assisted dying, she said, “I do not want this bill. Imagine it is already law and that I asked for assistance to die. Would I be refused?”
She went on: “Many would support my right to die. Sadly, many would put their energies into that, rather than improving my situation or helping me to change my mind.” She explained further:“This bill frightens me because in periods of greatest difficulty I know I might be tempted to use it. It only adds to the burdens and challenges life holds for me.”
It would be dreadful if, in our attempt to help disabled people die without having to starve themselves under a spotlight, we found ourselves helping them to die before they were ready.
Another worry is what we might call the “objective view”. This was illustrated by Richard Dawkins’ recent response to a woman who said she’d have an ethical dilemma if told she was carrying a child with Down’s Syndrome. Dawkins tweeted: “Abort it and try again. It would be immoral to bring it into the world if you have the choice.” Many protested. Dawkins apologised for his lack of tact. But he did not retract the statement.
The philosopher Mary Warnock also takes the objective view. Warnock suggests that elderly people with dementia may have “a duty” to consider suicide rather than “become a burden.” As she puts it:”If you’re demented, you’re wasting people’s lives – your family’s lives – and you’re wasting the resources of the National Health Service.”
Maybe it is the case that disabled people (and the elderly) generally take up more resources than the able-bodied (and the young). Maybe they can be seen as “a drain” on the NHS. Some people can certainly be a burden on their families with their need for care, their inability to do much for themselves. The objective view urges that we put sentiment aside and recognise that a gentle death, a painless, dignified and quick death, would be better than becoming a burden, better than using up resources that would be better spent on the young and healthy.
I should imagine most of us can see the force in this. Disability can be costly and burdensome on society and families as well as individuals. But to think of the law like this is no longer to see it as a service to the disabled. It is to see it as a service to society and the families and friends of the disabled; as a means of avoiding the undoubted costs, financial and personal, of disability. Such a thought seems deeply uncomfortable.
The discomfort is, I think, salutary. It keeps the Kantian categorical imperative in play against the Utilitarians; it is simply wrong, isn’t it,to think of sacrificing the disabled for the “greatest good of the greatest number”?
But we are not talking about “sacrificing” anyone. We are talking only about helping someone die quickly and painlessly, when they want to die, and their only alternative is dying slowly and painfully. But the objective view demonstrates how important it is to avoid “mission creep”. We must not start by changing the law as a service to the disabled, then allow the new law to become a service to those who think we are better off without the disabled.
So we have found reason to think that changing the law would be a service to the disabled. It would help them, under certain circumstances, to die quickly, painlessly and with dignity. They would no longer have to starve themselves to death under a spotlight.
But we have also found two worries:
1. it might be too easy to interpret a wish to die on the part of a disabled person as a real and settled wish to die rather than the result of temporary depression;
2. it might be too easy to slide from seeing the law as a service to disabled people to seeing it as a service to those wanting to avoid the costs of disability.
The first might result in disabled people being afraid to seek help with depression, and to them dying before they are truly ready. The second might result in a society in which the disabled are sacrificed for the greatest good of the greatest number.
But couldn’t we guard against these worries? We could simply require anyone who wants help to die to get a certificate, signed by two doctors, agreeing that they have a real and settled wish to die. Wouldn’t this guarantee that disabled people would be helped to die only when they have decided for reasons of their own that they prefer death to life?
It is against the law in the UK to carry out an abortion unless two doctors agree that it would be less damaging to a woman’s physical or mental health than continuing with the pregnancy. In England and Wales in 2013 there were 185,331 abortions. Let me ask you: do you really believe two doctors gave serious thought to the particular situation of each of these 185,331 women, deciding in each case that an abortion would cause this woman less damage than continuing the pregnancy?
I doubt most of us do believe this. For one thing surely doctors wouldn’t have the time. In fact there is good evidence to suggest that each case is not considered on its own merits as the law requires. In 2012, for example, 14 NHS hospitals were censured because doctors were routinely pre-signing batches of abortion certificates.
You might think this is well and good. You might think it is outrageous that women should need permission for abortions. Abortion, you might think, should be available on demand. Well abortion is in effect available on demand. The certificates that were supposed to provide a safeguard against abortion on demand have become a formality. This is not a comment on abortion: maybe it should be available on demand. Maybe the abortion laws should be re-written so that the certificates are no longer needed.
No, my concern is that if we think it is important that a law permitting assisted suicide has safeguards, we should also think it would be wrong for those safeguards to become a mere formality to be scrapped as soon as attitudes have changed. My fear is that if we change the law, attitudes will change. It will become normal to think that people who are disabled should be helped to die the minute they express a wish to die. It will become normal no longer to stop and ask whether the wish to die is temporary, born of the fear of being a burden, or indeed made under the pressure of being told they are a burden. Doctors, I fear, will end up pre-signing the certificates so as soon as a disabled person, for whatever reason, expresses a wish to die their death is expedited.
So should we change the law? I really don’t know. I think of Erina, and I think YES! I think of myself as a demented old lady, a burden to everyone, and I think YES! But then I think of how easy it is be exasperated when people need help, when actually I believe that I should help people, of how easy it is to worry about money instead of people, of how easy it is to put my healthy able-bodied self before anything or anyone else … and I wonder.
