Jul 20 2010

Locked-In Syndrome and the Right to Die

Tony Nicklison, 56, had a stroke in 2005 that left him in a locked-in syndrome. This means he is fully conscious but mostly paralyzed. He is able to move his eyes and, unlike some people with locked-in syndrome, he is also able to nod his head. But he cannot speak. He is able to communicate by blinking or by nodding his head when someone indicates the proper letter on a letter board.

Mr. Nicklison says that he wants to die, and is raising the issue of assisted suicide in the UK. Legally he can refuse food and water and would die of dehydration, but he and his wife do not want to use that option. He would rather die quickly at a time of his choosing. But he fears that his wife would face prosecution for murder if she gave him a lethal injection.

Mr. Nicklison says of his own condition:

“I have no privacy or dignity left. I am washed, dressed and put to bed by carers who are, after all, still strangers.

“I am fed up with my life and don’t want to spend the next 20 years or so like this. Am I grateful that the Athens doctors saved my life?

“No, I am not. If I had my time again, and knew then what I know now, I would have not called the ambulance but let nature take its course.”

It is easy for most people to sympathize with the horrible state of being locked-in. If we try to imagine ourselves in such a condition (even though we probably cannot fully imagine how it would be) we can understand why someone might rather die than continue in such a state. Put another way – it is difficult to imagine any quality of life in such a state.

However, a survey conducted by the Association du Locked-in Syndrome (ALIS) in France:

based on a survey of 70 to 78 individuals with LIS by ALIS in France: 71% never thought of suicide, 26% thought of it occasionally and only 3% often; 53% had never considered euthanasia, 39% had considered it at some stage but not anymore and 8% would demand it now.

That only 8% of those in a locked-in syndrome would demand euthanasia if offered is surprisingly low. Some researchers believe this is partly due to modern technology which allows locked-in patients to communicate and to use computers and the internet. It is often surprising how resilient people can be and that  some people can find value in life even in terrible conditions.

This brings us back to the issue of assisted suicide or euthanasia. While we might admire people who can persevere even in a locked-in syndrome, we are in no position to judge those who find such a life unacceptable. I face this decision with patients frequently – in ALS patients who are slowly losing their muscles and are essentially progressing toward a locked-in syndrome. Without heroic measures, they will die before they get to this state, but patients need to decide for themselves if they wish such measures to be taken (mainly tracheostomy and being connected to a respirator) or if they wish to die comfortably. Here there is no question of euthanasia because such patients will die without an intervention that they have the right to refuse.

What we have found over the years is that this is a very personal decision. Some people can find value in a purely intellectual existence, even if they have no physical quality of life. Others cannot imagine such an existence.

With those who become locked-in suddenly, and who do not require a ventilator, like Mr. Nicklison, the choice is between starvation/dehydration, euthanasia, or continued life locked-in. This is tricky from an ethical point of view, and very controversial. There are those who assert an individual’s right to take their own life, or request another to assist them in taking their life as a fundamental right to privacy. This is a perfectly legitimate argument.

But it also has to be weighed against some very practical concerns – concerns which have caused most countries to make euthanasia illegal. One concern is that the person requesting euthanasia is certain about their choice, and that their choice is settled after long deliberation. As the survey indicates above, while 39% of those locked-in have contemplated euthanasia, only 8% would accept it now. This suggests that there are many individuals who change their mind. How long does it take, therefore, for such a decision to be considered settled.

There are also concerns about the caretakers decision-making. How much is the burden being placed on caretakers affecting the decision to accept euthanasia? Does the option of euthanasia compromise the dedication toward doing everything possible to maximize quality of life of the affected person? Maybe, for example, if they were treated for depression (a common complication of stroke) they would no longer request euthanasia.

It seems we are heading towards more nuanced laws regarding the right to die and balancing it with protection for the therapeutic and caregiver relationships and the rights of individuals to proper care and treatment. The Nicklison case is sparking this debate anew in the UK and will test their existing laws.

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