

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. 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 tells doctors their patient has made a decision about treatment they do not want should they 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 decisions" 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. 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 decisions 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 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." Below is a selection of your comments. Having watched my mother dying from self-imposed starvation because euthanasia could not be offered, I think that simply withholding treatment and sustenance is an utterly cruel way to end a person's life. The family all knew (she had told us often enough) that she did not want to continue if incapacitated, but she had not written it down. I found it incomprehensible that it was OK to starve her to death over a period of six weeks, but not OK to use morphine. It seemed like an absolute abandonment of care, and traumatising for her husband and family. It is hard to remember her as the bright person she was, instead of the gaunt and unrecognisable skeleton she became.

JC, Margate, UK I wouldn't carry a card with such a simple message on it because life is not usually that black and white. I agree with the idea of appointing a proxy to be able to make decisions, plus back it up with something in writing. I have discussed it with my family and we are all in general agreement that we'd probably wait a week to make sure and then pull the switch.

Dave, Cambridge, UK Brilliant idea, and saves me having 'do not resuscitate' tattooed to my ankle. If I was in an accident that left me in a vegetative state, I do not wish to be a burden to anyone due to nostalgia of the person I was.

Matthew Brooks, Bristol Fantastic idea - are any other groups offering these cards? I worked in a nursing home and I know I don't want to die like that. Why should I be forced to live and die in appalling pain for the one-in-a-million (or lower) chance of survival?

Phil B, Lytham, UK It doesn't matter if you agree or disagree, you have to be thankful you have the right to make a choice... let's hope the national government takes notice.

Richard, London "It's a morbid question, but one that many of us have pondered at least once." The opening line alone shows how out of touch with reality our society is about death. It's "morbid" to think about it? It's actually very healthy to think about death and plan for it. Once again pro-lifers need to enforce their beliefs on others in an attempt to assuage their own fear.

Rob Thompson, Toronto The real danger here is that these cards could easily become a youth fashion statement. Particularly in various subcultures such as goth, emo etc, death is very much a subject in vogue. It is seen as dramatic and even romantic to allude to death in conversation or expression. Black Right-To-Die cards with flames and bat wings, anyone?

Luke, Aberdeen So if I run one of these card carriers over in my car, who could have been saved had they received treatment, and they die, do I go down for manslaughter?

Benji Poulton, Bangor I don't think a card can hold enough information to cover all the possibilities. There are some situations that I would find difficult to cope with and others I may not. It may be better to have a card that informs the doctor that you have a living will and who to contact to get it. The Will could contain much more detail and could even be stored in your medical records held by your GP.

Chris, Romford I am a qualified nurse and have nursed hundreds if not thousands of people who are on life support - why?! It's not because they have any quality of life but because the family can't let go. I would definitely carry a card, even though I also have a living will. It is similar to a donor card. Just because you carry one doesn't mean your family can't object, it's not legally binding as far as I am aware.

Liz, Suffolk My mum was on the Do Not Resuscitate list - something which I was not aware of at the time, but looking back I'm pleased she made the decision for me. It's as much a decision to die as to allow those who care about you the most not to have to watch you suffer anymore.

Jen, Newcastle I am a doctor specialising in accident and emergency medicine and I have no intention of following any such instructions. I will continue to strive to save the lives of all my patients so long as I feel that there is a reasonable chance of recovery. That decision will be made on clinical grounds and I will not be influenced by any "right to die" card. It is my right to treat my patients as I see fit in accordance with Hippocratic principles, and the GMC would have to strike me off the Medical Register to stop me following my conscience in these matters.

Andrew, Suffolk, UK Andrew in Suffolk: You obviously have no respect for other people and their values but think your opinions and value system trump everyone else's. If you are not willing to abide by a patient's wishes regarding their own treatment then you should be struck off. This is a case of an individual's right to live their own life. You are saying you know better and will run it for them. We patients are not your children Andrew.

Nigel Mawhinney, Belfast, UK Andrew the hospital doctor from Suffolk obviously believes like a lot of his profession that he is God. Well I am a doctor as well Andrew and I believe in respecting my patient's wishes. Mortality is still 100% I am afraid and to make death an unpleasant and painful experience because of the "ethics" of the doctor's weird values is cruel and crazy.

Rick, Exeter, UK Andrew, Suffolk: "It is my right to treat my patients as I see fit." Excuse me, your right? How is it your right to do whatever you want to others but not their right to do what they want to themselves? Does this mean a hairdresser has the right to approach someone in the street and cut their hair if they don't like it even when that person hasn't asked? And perhaps a dentist has the right to force braces on someone if he dislikes the alignment of their teeth. What exactly gives your rights as a doctor priority over the person who actually owns that body?!

Alexandra Sjoberg-Weekes, Nottingham, UK Hopefully I would be treated by someone like Andrew or W B if the worst should ever happen, God forbid. I take the opinion of a medical professional who has a level of ethical training and has taken a Hippocratic style oath, rather than a lay-person with their wishy-washy subjectiveness.

Optimist, Southampton Having worked in many intensive care units, I have often seen fruitless treatment being carried out only because no one knew what a given patient wanted. I certainly would not want to be in such a position and would welcome the use of advance directives.

Prasanna, London, UK What's to stop some scheming relative 'slipping' one of these cards into their elderly parent's wallet?

Emma, Wolverhampton I have seen both my parents die within the last year from diseases from ageing, I have thought long and hard about this issue and do feel very strongly that, if my quality of life were impaired to the extent that I was just existing, then the right to ask someone close to me to, while not assisting my demise should, knowing my wishes pass them on to the powers that be, so ensuring that I die with dignity.

Ian Ross, Aberdeen, Scotland My cousin had a car accident. We thought he would die. He was left paralysed from the neck down. Terrible future... Three years down the line he is married to very nice girl and they are living in Amsterdam. Who knows??

Celina, Argentina My grandfather turns 94 tomorrow, but his life is a sad shell of what it was. He nearly died six years ago, and the decision taken by his nearest and dearest to keep him alive might not have been the best one. It's a tragedy that we "value life" rather than value having a life. It's not love that keeps people alive in many cases, it's selfishness and fear.

Ben Smith, Ipswich It is entirely the individual's decision. They own their body not the doctor or the state or their relatives. I had to make this decision on behalf of my late stepfather who suffered a number of strokes in 1999 and had lost so much cognitive ability he could not decide for himself. Out of love and compassion for him I elected that he should be allowed to die with dignity. My wife and I have made living wills so that neither the other nor our son should have to make such a painful decision.

Brian Archer, Killingworth, Tyne and Wear There are far too many do-gooders out there who want to make decisions for everyone else. Personal choice is the key, and to make someone endure their life, rather than live it because another person 'do-gooder', thinks that's the right thing to do, is cruel - end of! Live and let live, and let die too!

Sensible, Hull, East Yorkshire "I'm appalled by these cards," it reads, "and I removed as many as I could from Swinton Library yesterday." Where would we be without such narrow-minded dictators ruling all our decisions with their personal hang-ups and out-dated superstitions? Oh, yes - better off than we are today. My apologies for the sneer, but such attitudes as this - when they move from interesting opinion to inappropriate action - deserve nothing but my contempt.

Craig, Swindon, UK There's no way I would carry one of these. Just imagine, one has a serious accident that leaves one paralysed from the neck down. I admit it's hard to imagine how one would feel in that situation. Possibly suicidal. However, what if a cure was just round the corner? So no, for me the glass is always half full, and I would never terminate my life under any circumstances. Life's too precious to throw away.

Leonard Day, Cardiff, UK Although I support someone's right to choose, how is this practical? Is an emergency medic supposed to search through someone's possessions to check if the card is present before giving aid? As a non-card carrier I would be most upset to think I was being withheld emergency treatment while a paramedic, worried about being sued if they get it wrong, looks for a little bit of card.

Rob, Reading There's no mention of who is issuing these cards and what their legal status is. I was also wondering about the security side of this - I can imagine a situation where someone slips a card into someone else's wallet "for a laugh" and that person gets hit by a bus on the way home. Or even just bringing one home for a relative. How can anyone be sure that the person holding the card is the consenting owner of that card?

Tim, Leeds The Mental Capacity Act allows people to make an advance decision to refused specific treatment in specific circumstances. It must be signed and witnessed. These quick and easy cards are not legally valid advances decisions and will cause confusion to patients and professionals. This initiative falls short of best practice.

David Jones, London Simply carrying a card because, for example you have inherited Huntington's or some other degenerative condition is very well, but if you are hit by a bus and need urgent transfusions, CPR etc doctors may be delayed in providing this treatment when in fact you would have had no objection. By the time the holder of the statement has been contacted, it may already be too late...

Dr W B Chellam, Liverpool I work as a care assistant. Some of the people I care for say they wish their suffering could be 'ended' and that they 'pray for death'. It's heartbreaking to see people bed-ridden, in pain and deeply unhappy. Each individual should have the right to choose what they are prepared to endure in order to remain alive.

Paula, Lincoln We have a choice about everything else in our lives so there is no reason why we should not have a choice about this too.

Vicky, Oxford The controversy over these cards highlights the usual double standard. 'We' are happy to make 'quality of life' decisions for animals with a view to 'ending their suffering', but when a human wishes to make the same decision for themselves, this is somehow wrong.

Alastair Alexander, Watford Having a card in your wallet really isn't saying much about your mental capacity! You might simply forget to take it out after you've changed your mind. It may delay treatment that could potentially restore your mental capacity!

Alex, Cambridge I think these cards should be available nation-wide. Jehovah's Witnesses have been refusing blood transfusions & other treatments for years due to their beliefs so why can't the rest of us enjoy this right?

Ben, Liverpool Dr Fergusson belongs to the Christian Medical Fellowship - no surprise that he opposes the idea, yet who is he to decide? It's also an insult to people's intelligence to suggest they don't understand the complexity of the issue. The choice is that you either want to live independently or you want to live knowing that you will need to rely on others - seems a perfectly straightforward decision to me.

Gemma, London I wonder if it will be necessary to advise your insurers that you carry such a card and if so, would your life insurance premium increase. Have Salford City Council investigated this properly? Where someone carrying this card dies, are Salford City Council exposed to legal redress from a life insurance company.

Jonathan Hall, Magor Wrong to put them in pubs. Had 10 pints of snakebite, pick up a card, walk out, get run over... oh dear.

John, Pontypridd, Wales I am tired of reading about people fighting for the rights of unwanted children (ie abortion) or people who don't want to live. Why do we want a society full of people who either aren't wanted or loved, or who don't want to be here? Let's put our energy into something with a more positive outcome for all.

Cindy, London, UK My late mother suffered from a condition, known to be irreversible and ultimately fatal, that led to her being kept alive, in an induced coma, for over two weeks before she died. I remember feeling at the time that "there is no chance of recovery, but we will try everything we can" - as a consultant put it - was an odd concept (performing complex treatment which was known to be futile) and difficult for the doctors, never mind anyone else. I know that, if she had had the choice, she would have declared previously that she would not want to be kept alive in such a situation.

Alastair Scott, London, United Kingdom I recently had cancer and previously would have though that I would hate any form of cancer treatment. Being extremely frightened of needles and passed out on blood tests. Without the decision of my consultants I probably would have chosen not to go ahead. Saying that though I had really good chances. But now I have had the treatment and am well I am glad the decision was in my doctor's hands. As stated above, your opinions change when you end up in that situation.

David Brady, Liverpool This is possibly the most dangerous application of euthanasia I can imagine, and I am absolutely pro-euthanasia. A system should exist where, once the accident has happened and an individual assessment has been made, the victim's family/guardian/doctors make a joint and informed decision about whether or not euthanasia is the road to take, which could possibly be cross-referenced and second opinioned by an independent doctor, and I'm completely staggered that a solution this simple hasn't been reached and probably won't be in this country.

Dan Kirby, Battle, UK



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