Friday, 29 June 2012

Tony Nicklinson, informed consent, and the community

Seven years ago, Tony Nicklinson was an active, busy, family man. His hobbies were rugby and skydiving. Then he had a massive stroke, and was left paralysed from the neck down and unable to speak. Intellectually, he's unaffected. His condition is called locked-in syndrome.

Tony describes his life as "increasingly miserable". With his family's backing, he's gone to the High Court to ask permission for a doctor to be able to kill him. It's important to note that this wouldn't be assisted suicide, but something quite different.
  • Assisted suicide: others may help (eg provide drugs, help with transport) but the individual must perform the action themselves. Illegal. Seen by some as a disability rights issue: it's not illegal for an able-bodied person to kill themselves, but if someone's too disabled to do the deed themself and therefore needs help, the person who helps them commits a crrime.
  • Voluntary euthanasia: The individual is not able to kill themself, even with assistance. The only way they can die at will is if another person will actively kill them.
When you listen to Tony's pleas, dictated laboriously by eye movements, it's difficult not to be moved. But emotion isn't a good basis for making law.

And many people are as disabled as him, and lead happy lives. If the courts decide that Tony's life is so miserable that it's OK for him to be killed, what does that say about the value of a disabled life? It's already common to hear able-bodied people saying things like "If I had to use a wheelchair, I'd kill myself." How would a decision that it's OK for a severely disabled person to be killed affect these attitudes?

While making a decision about anything involving healthcare, we must be in a position to give informed consent. That means we must be aware of all the pros and cons of the situation. I don't know enough about the facts of Tony's case to comment on that: but I've heard of previous cases where people requesting death had had no opportunity to live in the community (obviously with appropriate support). Could these people really be giving informed consent?

If assisted suicide and voluntary euthanasia are ever legalised, there will need to be very firm safeguards to make sure people are not being pressurised into requesting them. But research in the places where legalisation has already taken place suggests that this is not impossible.

The key factors for me are community living and social attitudes. We must be free to live as part of the community, and society must accommodate our needs and accept us as equal members of that society. Only then can we make truly informed decisions about whether or not to end our lives.

1 comment:

  1. One could look at Tony's case in so many different ways, as the status quo, with the courts deciding whether to authorize an act that would, in the UK, otherwise be illegal is not an inevitable way to have set up to look at requests such as his.

    In a way, though, as courts always look at things on their individual facts, including establishing what Tony wants and why, this is not, any more than any other case where the court has ruled whether someone should carry on living, something that genuinely sets a legal or any precedent:

    If I choose to swallow the tablets necessary to end my life and do die, it says, to my mind, no more about whether someone else could, would or should (in their eyes) do the same. No one else can infer that, whatever disability I may have, I am not valuing a life with that disability worth living for them, because I only make the decision for myself: here is where we draw close to Tony's case, because I have the agency to do what he cannot.

    The imponderable is this, though. For all that those who, to my mind, do not know what they are talking about when they call people who choose to end their own lives (whether or not they die) cowards, one still has to do what the word 'agency' implies, i.e. act. Even if one were 'falling on one's sword', aren't we actually too remote, because we see it fictionalized all the time (in plays, films or on t.v., or we read about it), from the experience to know what is involved in taking the decisive action, intended to kill oneself.

    That is where the artificiality creeps in in Tony's case, because the agency would unavoidably be in someone else's hands, if he is allowed to die - that person is paid to do what is necessary, not inflicting the lethal action on him- or herself.