When to end a terminally ill child’s life? It’s an agonising decision

Courtesy of TheGuardian.com | By Iain Macintosh | Originally Published 03.22.2018 | 04.25.2018

As doctors, we have to temper parents’ relentless optimism with the truth. That may seem cruel, but it is necessary.

My wife says my colleagues and I are the kind of doctors you never want to meet. It’s true. Having your child admitted to a paediatric intensive care unit (PICU) is a traumatic experience. However, most children admitted to a PICU pass through briefly; they may have acute infections or require surgery and are fixed in one visit. But some children return more frequently and yes, sadly, some die.

We have many disabled children with complex needs who are alive and at the heart of loving families because of our help. When you have done this for a while you see teenagers you didn’t expect to get out of infancy.

There is another increasingly common group of children, those with severe illnesses requiring not just frequent PICU visits but often never getting out of a PICU or only getting to another hospital ward before returning. For these patients, the skills and technology of a PICU are deployed to stave off death one more time.

It’s a challenging situation for the kids, for the parents and for the staff. We greet them like old friends and, like old friends, we are sometimes shocked to see how diminished they are and sometimes surprised at how well they are holding up. The parents have usually been told to expect the worst and have seen their children pull through again and again. When they have been to the brink and walked back, they become sceptical about our predictions. They have a point. Doctors tend to paint bleak pictures. No one needs any help to prepare for the best outcome; they will be fine with that. But when we are wrong we share in their delight and smile at the perverse strength of the most fragile of human bodies and the astonishing persistence of the human spirit. We also feel uncomfortable about how much we have to do, how much pain and distress we have to inflict to get them back to where they were.

We face agonising decisions. We share our perception of the future with the parents in an act of honesty and out of professional duty. Sometimes it is our duty to temper a parent’s relentless optimism with the truth, and that may seem cruel. But it doesn’t feel cruel to us, it feels necessary. There are parents who can’t forgive us for this, who will always believe that our giving up hope is an act of betrayal. It’s at times like these that we ask the courts to test our decision. My PICU has been to court only once. It’s not an easy experience and it does not bring peace. But it does bring resolution.

There is no life that doesn’t contain some suffering, but at what point is that suffering intolerable? We endure suffering because it is inevitable or because it may represent a worthwhile sacrifice. What if it isn’t inevitable or if it is all sacrifice and no reward? We look into the future and see lives littered with pain and difficulty. Plenty of relationships don’t survive the trials of normal life so it is unsurprising to see the toll of looking after profoundly damaged children. You can’t be cynical about this. The wonderful secret of humans is that our capacity to love and to endure is our greatest strength. To be a witness to this is one of the great privileges of my job and a great source of comfort for me. But I also believe that this strength is expressed as much in letting go as in holding on.

Iain Macintosh is a consultant in children’s intensive care at University hospital Southampton NHS foundation trust and features in a documentary My Baby’s Life: Who Decides? which airs at 9pm on Thursday 22 March on Channel 4.

If you would like to contribute to our Blood, sweat and tears series about experiences in healthcare, read our guidelines and get in touch by emailing sarah.johnson@theguardian.com

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