Thursday, November 20, 2008

How old is old enough to decide whether to live or die?

Josie Grove - How old is old enough to decide whether to live or die?
Josie Grove with her baby brother, Charlie, and mother Jacqui, two months before the teenager died Photo: NORTH NEWS AND PICTURES

Jacqui Grove wavered only once. For a fleeting second, she agonised. ''Should we be trying every single thing, anything that might produce a miracle and save Josie's life?'' she asked herself.

Before her on the table sat yet another letter from a well-meaning stranger. In it the author, who had read of Jacqui's daughter's decision to refuse further medical treatment, leave hospital and go home to her family to die, urged her to talk Josie into changing her mind, to try yet one more form of untested alternative medicine.

In that moment Jacqui thought of the pain and suffering her elder child had already endured. Of her quiet resolve, at just 16, to take control of her own life. Should she overrule her?

One quiet comment from her dying daughter banished those thoughts. ''Mum, I just wish people would stop trying to save me,'' Josie told her. ''I know they mean well, I know they are praying for me. But I just want to spend the time left with my family. Build up some memories for me and for you. I want to live before I die.''

Last year, on February 26, Josie Grove slipped into a coma and died with her mother and father beside her. Candles flickered in her bedroom in the family's Northumberland home, her favourite music played softly in the background. Her family told her how much they loved her and how she would remain forever a cherished part of them.

Diagnosed with acute myeloid leukaemia at 14, Josie had two failed bone marrow transplants and countless rounds of agonisingly painful and debilitating treatment. Then, one day, she decided she had had enough. Her cancer was incurable: the consultants had been straight with her. The new treatment they were proposing was unlikely to help. At best it would prolong her life, albeit briefly. But there would be a price. She would spend hours in hospital. They would try to ease her suffering but the treatment would be agonising and her chances of surviving it low.

''Josie thought about it all carefully,'' her mother says. ''For us to force more treatment on her would have been downright cruel, I'm convinced of that. Josie, like all teenagers with incurable cancers, was forced into a very grown-up world much too soon. But she made up her own mind and she never changed it. We respected that right and we will never regret doing so.''

Over the past week, Mrs Grove has been reliving the anguish of her daughter's decision. At just 13, Hannah Jones, from Marden in Hereford, has chosen the same route. She, too, has acute myeloid leukaemia and while a heart transplant could, possibly, save her life, her chances of surviving the operation are slim. She, too, has decided: ''I have had enough. I just want some pain-free time with my family. Then I will die.''

Jacqui Grove knows there are many – just as well-meaning as those who wrote to her while Josie was dying – whose convictions could never allow them to condone Hannah's decision.

''All I can say to them is that my daughter made her own choice about how she would die,'' Jacqui says. ''And, in a way, when she would die. She left this world peacefully, with a host of memories packed into her final months. Memories she could not have created without that small amount of time to live her life as she wished.

''We didn't selfishly agree to Josie's wishes to give us those memories but to give Josie those memories. We are grateful for the memories we have as a result but we wanted to allow her to live like a normal teenage girl, something she couldn't do with all the treatment. That is what Josie wanted. That is what we gave her. I have never regretted that.

"Hannah's parents have also chosen to respect their daughter's wishes. It is a brave decision for them. For us it was the right one. I believe it is the right one for them, too. When I read about Hannah, I thought: 'Just 13, so young.' But I didn't mean too young to make the choice she has, simply that she is so young to have to face this.''

In Britain, the law surrounding such decisions is vague. As an adult, the right to refuse treatment is enshrined in law. For those in their teens the courts can intervene. What is paramount are the child's "best interests".

In Hannah's case, a diligent doctor decided she should be taken from her parents and undergo the transplant operation, regardless of her wishes. To her family's bewilderment their local hospital, Hereford County, applied for a High Court order to remove Hannah from their care on the grounds that they were "preventing her treatment". It was only the last-minute intervention of a child protection officer that has allowed her to stay with her family for the remaining months of her life. The officer had a lengthy talk with Hannah and then persuaded the court that the order should be thrown out.

The moral and ethical issues surrounding a youngster's right to end their treatment have raised questions that have vexed ethicists, doctors, parents and politicians for decades. When, they ponder, is a child old enough to understand and give consent to complex medical treatments? How old is old enough to decide whether to live or die?

Almost all experts agree: age is all but immaterial, it is experience that counts. Priscilla Alderson, professor of childhood studies at the Institution of Education, says her research has found that even young children can give or withhold informed consent to medical procedures. Decisions about treatment, or even whether to live or die, cannot be based on age, she argues.

''Age isn't a helpful criterion,'' she says, ''but experience is.'' Hannah, she believes, is probably better qualified than many adults to come to her own decision. ''Hannah has had ample opportunity with eight years or more of close contact with invasive treatment. It appears that she has thought deeply about the cost of life and the cost of dying with dignity. She sounds remarkably wise. Most of all, she probably knows what it is like to face death.''

Jacqui Groves would agree. Her daughter knew she was dying and understood its finality. Her family used the analogy of the dragonfly to understand life's circle. How its larvae lie underwater gazing at the surface until they finally float to the top to break free as dragonflies. ''But they cannot go back down to tell others how wonderful it is,'' Jacqui explains. ''That is how Josie thought of death. Of course she knew the reality of dying, but that analogy helped her accept her death.''

Just before she died, Josie set up the Josie's Dragonfly charity to raise money to buy arts and crafts for terminally ill children, as well as giving one-off £500 grants in their final
months. In its first year it raised almost £167,000 but badly needs funds to continue its work.

''Josie worked hard with the charity in her last months and she would be so proud of the work it has done,'' says her mother. ''As well as giving money people can buy a range of silver and gold dragonfly jewellery. Five pounds of the cost of each piece goes to the charity. The dragonfly's life span symbolises Josie for us: fragile, free and tragically short.''

Her daughter's decision, she is convinced, was made only after much soul-searching. ''Children like Josie and Hannah are very involved in the details of their treatment,'' she explains. ''The consultants never lie to them. They tell them when a treatment isn't working and what, if any, options there are. They hear things we would prefer to protect children from but they need to hear them. The doctors are honest and realistic so that the child is aware of the seriousness of their condition. And aware of their own mortality. They have to deal with very adult issues.

''Josie certainly knew the reality of death. She had faced the possibility of dying all through her treatment. She knew what her chances were.''

It was after the failure of her second bone marrow treatment that Josie made up her mind. Her doctors told the family there was one treatment left but it would mean another round of painful hospital procedures, and the likelihood of Josie surviving was low.

The Groves took a barge holiday to think things over and, one morning, Josie told her mother: ''I've decided no.'' Her mother gently suggested she give it one more go but Josie was adamant. ''I would be hoping it doesn't work,'' she said. ''I don't want to go through any more.'' Josie never changed her mind and her parents respected her view.

''It isn't easy. In effect, we were letting our beautiful daughter die. But we allowed her to die in the way she wished. She was so very ill after each transplant, she couldn't face it all again. We had seen her in pain so often. It was a brave decision to make and, when she insisted it was what she wanted, I hugged her and told her I didn't blame her at all for making it.

''By the end she really had had enough. Josie knew that those who wanted her to keep trying did so out of hope and compassion. But, as she pointed out, she was the one enduring the treatment, the sickness and the pain. She didn't want to clutch at straws.''

The momentous decision made by Josie and Hannah is more common that we realise, Jacqui believes. ''Time and time again, through the charity, we meet parents who, having watched their child suffer terribly for a long time, say: 'Why don't the doctors just stop?'

''They know the medical profession wants to give their children every opportunity, every chance. But occasionally there comes a time, and these children often know themselves when it is time to say no.''

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