Wednesday, May 28, 2008

The card that lets you choose death

Page last updated at 16:50 GMT, Wednesday, 21 May 2008 17:50 UK

The card that lets you choose death

Rose left as floral tribute

By Paula Dear
BBC News

A controversial new "right to die" card is being offered to the public that allows anyone to refuse treatment in a medical emergency. Who carries it, and why?

It's a morbid question, but one that many of us have pondered at least once.

Card issued by Salford City Council
The card that can say 'no'

If I hadn't just escaped that dreadful accident, where would I be now? Would I rather be dead than depend on others to keep me alive?

A new card seeks to address that very question. Available in pubs, banks, libraries, GP surgeries, even some churches, the Advanced Decision to Refuse Treatment (ADRT) card sits snugly in a wallet or purse and instructs a doctor to withhold treatment should the carrier lose the capacity to make decisions, because of an accident or illness.

Dubbed the "right-to-die card", it's being seen by some as a short-cut to euthanasia.

But its backers say it is a practical way of implementing the Mental Capacity Act, which came into force in 2007.

The act allows adults to draw up "advance directives" stating what sort of treatment they don't want should they lose capacity. They build on the principle of "living wills" but, crucially, mean that doctors are legally bound to abide by a patient's wish to refuse life-sustaining treatment.

Taken in haste

Carrying the card alerts anyone who finds it that the patient has made decisions about treatment, and there is a detailed statement to be found with named relatives or friends and, ideally, their GP.

Jo Cartwright
I'm terrified of the prospect of having a terminal illness or accident that left me medically alive but not able to live my life
Jo Cartwright, 23

Salford City Council, which is behind the card, says it is merely putting the information out there in public places, for people to make their own choice. It stresses advance decisions are not only about death but can also include preferences about treatment and care patients do want.

But so-called pro-life campaigners say they could be snapped up in haste by people who haven't fully understood the complexity of the issues involved.

Given the ferocity of the debate between the pro-choice and pro-life movements, it is somewhat surprising to hear that Salford's card scheme was dreamed up by just one person.

The woman - who has asked not to be named - is involved with social care services in Salford because she has a son with mental health problems.

"She was thinking of the idea of advance decisions both as a retired woman, and as a carer, and thought this would be useful," says Judd Skelton, a Salford council officer who looks after user and carer issues.

However, pro-life campaigners such as Dr Andrew Fergusson, from the Christian Medical Fellowship, say such important decisions should not be committed to paper in this way. Agreeing that patients should have more autonomy than in previous generations, Dr Fergusson wants people to appoint a proxy to speak for them if they become incapacitated.

"One of our concerns is that the things people want when they are well are very different to those they want when they are unwell. Their values change," he says.

Slow down treatment

The former GP and hospital doctor, whose organisation is also part of the Care Not Killing alliance, says advance directives may be forcing medics to work "with one hand tied behind their backs" - although the legislation does leave room to challenge the patient's statement.

And he is worried that a card saying "stop" to a doctor could lead to a "change of gear" in emergency situations that would affect decision-making.

The Salford cards certainly seem to be stirring passions locally. Reports that they have been snapped up enthusiastically by locals appear to be partly countered by the comments of at least one person contributing to a local newspaper messageboard.

"I'm appalled by these cards," it reads, "and I removed as many as I could from Swinton Library yesterday."

But such cards are not entirely new. While Salford believes it is the first council to offer them, the "pro-choice" group Dignity in Dying provides a similar card for people who buy their advance decision documents from it.

One carrier is 23-year-old Jo Cartwright, who says she started thinking seriously about her rights some years ago, while working as a nursing assistant. Having watched a young woman go through a slow and painful death from Huntington's disease and cancer, she knew she would never want a similar experience.

"She had seen her father go through it and knew what was coming," says Ms Cartwright. "She said she didn't want to die like he had. But she hadn't written anything down and her mother and carers had to watch her go through exactly the same thing. It made me think about my options and my rights. Would I be able to make decisions if I knew what might be coming?"

She worked for a spell with Dying in Dignity and last year wrote an advanced directive.

'I'm terrified'

Any medic who finds it while she is incapacitated will know that if there is little prospect of a full recovery, Ms Cartwright does not want medication that will prolong her life.

"I don't want to be kept alive and I think that is my choice."

Despite her youth, for Ms Cartwright there is already a real chance she could face a medical emergency. Last year she was rushed to hospital with pancreatitis - acute attacks of which are fatal in about a quarter of cases - and it could happen again.

Living with the chronic disease has impaired her life, although she insists she would have made an advance statement whether or not she had developed an illness.

"I'm terrified of the prospect of having a terminal illness or accident that left me medically alive but not able to live my life independently, to a quality I find acceptable."


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