Deborah Orr: When doctors and parents clash over life and death

It is no wonder that Andrew and Kirsty Jones are angry. They loved and cared and hoped for their daughter Hannah for nine years, starting when she first showed symptoms of leukaemia at four, then continuing as she struggled with a heart condition (which may or may not have been triggered because of the cancer drugs that she was given).

Eventually, at 13, Hannah herself decided that she did not want to continue receiving medical interventions that did not even promise to prolong her life, let alone cure her. (Her mother, a former intensive care nurse, was in a good position to recognise the veracity of her daughter's analysis.) Hannah refused a heart transplant, and expressed a wish to spend her dying months at home, with her parents, her two sisters, and her brother.

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However pragmatic and mature that decision may be, and however sure a parent is that their child is sincere and sensible in her choice, the arrival at such a choice must still herald the moment when dreams of recovery are extinguished, and strength is summoned to face the awesome, bittersweet challenge of making the rest of your little girl's life as happy as it can possibly be.

What an insult, therefore, it must have been for Andrew Jones to have received a telephone call on Friday night from Hereford Hospital that accused him of "preventing" Hannah's treatment, and threatening the very thing that his daughter wanted least, removal from her family and her home.

There was no need at all for the authorities to have been so aggressive, so heavy-handed, and there can be no doubt of that. Andrew Jones's own response is proof enough. He suggested with utter confidence that a talk with Hannah herself would clarify matters, and indeed that was all that was needed for the High Court hearing to be abandoned.

Yet while the early issue of threats cannot be excused, it was absolutely right that Hannah was given the opportunity to speak for herself in a private interview with a child protection officer. Even a child as young as Hannah can be assailed by depressive thoughts, and become tortured by the idea that she is a burden on the people she loves. In this case, any suspicions of that kind proved groundless, and the very thought that they may have been entertained is most likely painful to Andrew and Kirsty. Yet achieving that certainty before shelving plans for a transplant was surely the right thing for medical staff to do, even if the manner in which they undertook that task was so inappropriate and insensitive.

If anything in this sad affair can be said to be fortunate, then it was fortunate that Hannah was able to speak so lucidly for herself, and fortunate that respect for her wishes is legally possible.

Daniel James, an adult at 23, and paralysed after a rugby accident, was forced in his despair and misery to ask his parents to travel with him to the Dignitas clinic in Zurich, in order that they could illegally assist him in his suicide. Debbie Purdy, 45, who has multiple sclerosis, has recently failed in her bid to secure the assurance of the courts that her husband would not be prosecuted if she wished at a later date to take a similar course to James.

In general, the beliefs and actions of the loved ones of stricken, lucid, people, even adults, are not fully trusted and sanctioned. Although none of those involved in assisting the 94 Britons who have died at Dignitas has been prosecuted, the suggestion of further sanction than this remains fraught with difficulty. In the light of such fraught considerations, it would be quite out of keeping with the general tenor of the ethical landscape if the decision of the Jones family to refuse this treatment had not been investigated at all.

To make matters yet more complex, there are occasions on which doctors have overturned the wishes of parents, only to be vindicated later. Heated controversy was ignited when a couple from Gozo attempted to halt an operation in London to separate their conjoined twins. It was ruled that the surgery should go ahead, resulting in the death of one of the children, and the saving of the other. The couple have since said that they are now glad that their attempt to allow both of their daughters to die had been thwarted.

It is also worth remembering that a number of the most controversial cases involving a clash between the wishes of parents and the wishes of medical professionals centre on the opposite dilemma to that faced by Hannah Jones, her family, and the doctors who attend her. Usually, in such cases, the child or children involved cannot speak for themselves, and it is the medical profession that prefers to withhold treatment.

In 2004, Darren and Debbie Wyatt went to court, challenging doctors who did not want to resuscitate their daughter, Charlotte. She had been born prematurely, her quality of life was greatly limited, and in the opinion of her doctors her life would have been one of "continuing pain". The Wyatts won their case but separated with some acrimony. As yet neither has been able to care for their four-year-old daughter at home, although Charlotte is reported as having made better progress than was predicted by her doctors.

In a case that received less attention, doctors decided to administer high doses of diamorphine to hasten the easeful death of 12-year-old David Glass, who had cerebral palsy, when he succumbed to an infection after a routine operation. His uncle and two of his aunts were jailed for forcibly intervening to stop the treatment, which his mother was against, and David returned home to live with her.

Some parents report that they avoid taking their disabled children to hospital, for fear that the attempts to resuscitate them that they wish for will not be made. Others speak with anger of always being asked if they want their child resuscitated whenever they are compelled to take them in for treatment. Obviously, such attitudes are hugely resented by disability campaigners as they suggest, repugnantly, that the lives of disabled people are valued less than the lives of the typically abled.

The Royal College of Obstetricians and Gynaecologists has even considered seeking to frame a legal basis for the mercy killing of new-born infants when they are very disabled. They argue that: "A very disabled child can mean a disabled family." Many parents, however, insist that they wish to love and care for their children, however ill they may be. Their children are unable to express their own wishes, and so their parents nurture them as best they can, even though they rarely receive the support that they need.

The Jones family have no doubt opted to do what is right for them and for Hannah, and they are to be admired for that. It is dreadful that the poignant agony of their situation was exacerbated by brutal intervention. Yet all that can be learnt from this case is that every family is different. Even careful respect for all those whose opinions can be solicited – the element that was sadly lacking in Hannah's case – does not necessarily result in a correct course of action becoming obvious, or easy, or certain.

d.orr@independent.co.uk

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