No one has the right to switch off a human life... I should know: One woman's story of being locked inside her own body

By Nikki Kenward
Daily Mail - July 27, 2011

Can you imagine a lonelier or more frightening place to be trapped in, unable to communicate, than your own body?

These are terrifying times for anyone who cannot speak up for themselves. Whether they know it or not, they are lying prone in a world increasingly seduced by the idea that death is preferable to the life they are living.

The increasingly vocal advocates, who promote ‘assisted suicide’ for those who are too disabled to express their own feelings on the matter, cannot begin to imagine what it is like to live such a life.

They cannot begin to imagine how profoundly illness, or physical and mental disability, might actually enhance that individual’s appreciation of the value of life itself — even if it bears scant resemblance to the life they were living before.

But I can. I have lived that life and I know how precious it is. I have experienced the torture of total paralysis and I now live with serious disability. But I will be grateful until my dying day that no one had the right to ‘turn’ me off.

So today, as the High Court deliberates over the harrowing case of ‘M’ — a 51-year-old brain-damaged woman whose family is pleading for the right to end her life — you will find me in the Old Palace Yard outside the Houses of Parliament, alongside others, both able-bodied and disabled, who are determined to give a voice to those who cannot speak for themselves.

My life changed for ever, one day in 1990, when I was struck down by a severe strain of Guillain-Barre syndrome. It left my entire body completely paralysed, but for my right eyelid.

In 24 hours, I was transformed from a happy, healthy wife and mother, to a seemingly helpless lump. I was locked in. Trapped. And I remained that way for five months, learning to communicate, eventually, by flickering my eyelashes.

Although most people who contract this rare disease go on to make a full recovery, it took a year in hospital, and many more at home, for me to fight back from total paralysis. I have never recovered the use of my legs.

At my worst, all of my muscles, including those that operate my lungs, were completely inert.

I was in terrible pain throughout my body, I regularly endured violent physical abuse at the hands of one of my nurses, and I truly believed that I might die from the agony of the heartache I felt at the thought of never holding my one-year-old son again.

Yet, to all those around me, I appeared unfeeling and unresponsive.

You might think that, if you were in my position, you’d have wished for death. Perhaps you have even spoken to your loved ones about your wishes, should you ever find yourself in such a situation. But all I knew in those dark days was that I wanted to live.

I didn’t care if this was all my life would ever be — forever lonely, frustrated and silent. I wanted to be here, living in whatever capacity I could manage, and I believe there are people lying in intensive care wards all over the country who feel exactly the same.

Yet the pro-assisted suicide lobby grows louder and ever more confident in their conviction that a hastened — and often, as I shall show, inhumane — death is what these people at our mercy would have wanted. After all, it is taken as a given by the fit and well these days that being dependent on others for love and care is no way to live at all.

And that, it seems, is the tragic conclusion reached by the family of M, who has been severely brain-damaged for the past eight years.

Over the past two weeks, they have sought to persuade a judge that M, who is in a ‘minimally conscious’ state, should be ‘allowed to die’ — a curious and emotionally-void euphemism which hides the terrible reality of condemning a person to death by (dehydration) starvation, when they are deemed to be too disabled to go on living.

In 1993, the House of Lords ruled that patients with no awareness or consciousness, in a Persistent Vegetative State (or PVS), need not be kept alive. The ruling was centred on the case of Tony Bland, a survivor of the Hillsborough disaster.

Since then, 43 PVS patients have been ‘allowed to die’ via the withdrawal of treatment and care (dehydration). Each case has been heard by a judge, and argued passionately on both sides by people who, undoubtedly, only have that patient’s best interests at heart.

Let us set aside for a moment the extremely worrying fact that since that ruling was made, neuroscientists have come to believe that as many as 40 per cent of those in a vegetative state have been misdiagnosed and may have had some form of consciousness after all.

In other words, four in ten of those who have been killed in this way, with the backing of our courts, were not unaware or unconscious of their fate, but quite the opposite.

Let us focus instead on the impact of M’s case, specifically, for it has the potential to break dangerous new ground.

M’s family believe the artificial feeding, on which she is dependent, should be stopped, even though there appear to be signs that she is aware of her surroundings. Her minimally conscious state implies that she is, in all likelihood, more conscious than those diagnosed with PVS, more capable of thought and feeling.

That is why the Official Solicitor, responsible for representing M, and the NHS trust that runs M’s care home, oppose her relatives’ application. They say she smiles at jokes, and may even be capable of communicating with a switch.

Yet, her poor family say they have ‘come to the clear view that M would not wish to continue living in her current state and that it is not in her best interests to do so’.

Although I am compelled to fight for the rights of M, and others like her who have no voice, I do not underestimate the agony that her family have gone through in the years leading up to this week.

They have had to come to terms with the fact that M will never be the person she was. She is unlikely ever to recover. I do not see this family as villains but victims, caught up in the groundswell of opinion that says death is the best and kindest option for someone in M’s condition.

As a result, no doubt, they sincerely believe that if they ever found themselves in a hospital bed, wired up to life-support systems with little hope of recovery, death would be a blessed relief.

It is a brave decision that they have made, but I would beg them to reconsider. I would first ask them to give themselves another chance to love M in a different way. She has changed, as everyone does when life deals them a terrible blow. But she is still a person, and her dependence on others should not determine her right to live.

I would also ask them to consider how they came to feel so desperate that death became the best option. Have they been sufficiently supported through this terrible time? Has M received the best possible care and rehabilitation? Do they feel entirely satisfied that they understand her condition? And are they prepared to risk subjecting her to the kind of death that no one would choose for themselves?

I would ask them to think about how much they don’t know. Our understanding of consciousness, even in this day and age, is extremely limited — a fact that the best neurologists in the world would readily admit.

A diagnosis is only as good as the technology used to make it, and there is no doubt that we have a long way to go before it is possible to know for certain how much capacity a damaged brain has.

Martin Pistorius, the author of Ghost Boy, fell into what appeared to be a comatose state at the age of 12. It wasn’t until 12 years later that a carer intuitively became convinced that he was fully aware, despite showing no outward sign of it.

And it was only when he was given the opportunity to communicate, using a technology that recognised his virtually imperceptible head movements, that he was finally able to express himself. That’s when his parents realised that he had heard their debates over whether he should live or die. How relieved they must feel now that a decision was never reached.

Cases like his prove that a decision made now, without all the facts, could transpire to be the most tragic mistake.

I would also ask M’s family to look outside her hospital room, at the impact a decision like this would have on the rest of society. Even if M is not conscious, aware or likely to improve, I would beg them, please, to be aware of the consequences of ending her life. If they open this door — which would broaden the definition of those who could be lawfully killed in this way — all of us are at greater risk.

Should you or I fall ill tonight and find ourselves, as I once did, unable to speak or move or cry, the danger of someone making the decision to end our lives for us would be greater than ever before. For death has been given a facelift. We are encouraged to think of it as a gentle walk down a white corridor to a beautiful place. We hear talk of dignity in death, as if there were no dignity to be had in a life that is not the one of an able and productive person. And while the law seems willing to bend and flex to this point of view, who speaks for those who cannot speak for themselves? Who considers whether the ‘options’ of life or death look rather different from a patient’s point of view?

The Terry Pratchetts of this world may be convinced of their ‘right to die’, and they may shout it from the rooftops. But if, for instance, they insisted on exercising their right to die by driving at break-neck speed down a busy street, we’d rightly tell them that their right to die did not override others’ right to live.

I believe that every life that ends at Dignitas, and every dependent patient who is ‘allowed to die’ by (dehydration) starvation, erodes my right to live. It normalises this kind of death, and it sanitises what is an abhorrent practice. In order to label this practice as something other than what it is — killing — the law has been fudged and euphemisms applied.

Death through the withdrawal of food and water is not a gentle walk down a white corridor. It is, according to a doctor friend, about as painful and unpleasant an end as one can imagine. We would not subject an animal to it.

It is possible that many of those who have died this way have suffered extreme anxiety, burning sensations all over their bodies, and searing pain in their kidneys that even the strongest medication can do nothing to ease. And yet, this is the death that more and more believe is the ‘dignified’ way to go.

And what about those who are left behind? Do we really believe that gradual desensitisation to killing has no impact on the rest of society?

By creating a world in which death happens whenever it is deemed convenient, are we not gradually erasing what was once an important part of our life experience? The experience of death itself: the natural loss of our loved ones, no matter how long and difficult the journey to the end may be.

A good and dignified death is not determined by schedules, budgets or the patience of a third party, it is one that teaches us the most about the realities of love and life.

Nikki Kenward is a disability rights campaigner in the UK