Saturday, July 30, 2011

'All I knew was that I wanted to live'

The family of a woman in her early fifties is currently pleading with the High Court for permission for her to be "allowed to die" - in fact, starved and dehydrated to death. The woman is brain damaged, paralysed, unable to communicate and totally dependent on nursing care. Her family believes it cruel to keep her alive.

UK courts have granted permission for food and water to be withdrawn from more than 40 patients in "persistent vegetative state," with fatal results, since the case of Tony Bland in the early 1990s - but this is the first time a UK court has been asked to give permission for food and water to be withdrawn from someone who is said to be "minimally conscious."

Nikki Kenward, who lives at Aston on Clun, Shropshire, and represents a campaign group named Distant Voices, is concerned. And she is qualified to express an opinion: hit by Guillain Barre syndrome in the 1990s, she was completely paralysed apart from her right eyelid. She was "locked in" for five months, unable to communicate and in terrible pain throughout her body.

It took years for her to fight back from total paralysis, and she still needs a wheelchair, not having recovered the use of her legs.

"I have lived that life, and I know how precious it is," she wrote in a national newspaper this week. "I will be grateful until my dying day that no one had the right to 'turn' me off.

"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.

"I believe that every life that ends at Dignitas, and every dependent patient who is 'allowed to die' by starvation, erodes my right to live. It normalises this kind of death, and it sanitises what is an abhorrent practice.

"Death through the withdrawal of food and water. . . is, according to a doctor friend, about as painful and unpleasant an end as one can imagine.

"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."

This week Nikki Kenward and fellow disability campaigners, out of concern, they say, for some 6,000 mentally incapacitated patients in the British health care system - and to draw attention to increasing pressure to allow the killing of incapacitated patients - staged the mock execution of a wheelchair user outside Parliament.

The Royal College of Physicians is undertaking a review of the care of mentally incapacitated patients. Professor Lynne Turner-Stokes, one of those involved in the review, is quoted as saying that "We need to take a deep breath and consider whether doctors are striving to keep people alive in inappropriate circumstances."

Nikki Kenward has been criticised for her performance outside Parliament this week. But does someone need to speak up for those who have no voice?