Parents invariably want the best possible medical treatment for their children and often go to extraordinary lengths to get it. Barely a week goes by without news of another desperate family selling possessions, remortgaging their home or undertaking heroic fundraising efforts to get together money for treatment not available on the NHS.

But very occasionally, there is a heartbreaking story of parents who reluctantly accept their beloved child has had enough of surgery, chemotherapy and infections. They agree to make the best of what time remains in the hope of a peaceful death at home.

The Joneses are not alone. In February last year Josie Grove, 16, from Northumberland, died at home from leukaemia, three months after she decided she had had enough of hospitals. Nurses were so moved by her courage that they nominated her for a bravery award.

The problem is that not all medical professionals think the same way as their patients. Doctors are guided by the ancient Hippocratic oath, which binds them to using all treatments in their power to heal the sick. If they are convinced a treatment will prolong life, or enhance the quality of life, they are bound to recommend it and do what they can to convince the patient to take it. They are also curious to see how new treatments will work. There is room for discretion and many doctors, in the end, agree that stopping treatment may be for the best. In the case of Hannah Jones, a locum, perhaps less familiar with her history, raised the alarm and a child protection officer was called in.

But who can blame a doctor for stopping to question why a 13-year-old child should want to stop fighting for life?

There is a wider point to Hannah Jones’s story. We live in an age where death is simply not spoken about. Life is sacrosanct and anything to extend it is to be applauded. When someone challenges that and makes clear that they are prepared to die rather than go through more treatment, it surprises us. When that person is 13 years old, it is unsettling. That should not detract from the bravery of enduring – and succumbing to – a very serious illness.

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