Dying, death, disabled children and young people: how might we be better prepared?

Abstract

Dying and death are not subjects that most, including clinicians caring for disabled children and young people, find easy to contemplate, despite them being integral to our humanity; in the past these important topics have received little attention in our professional training curricula. However, there are in every age and locality a number of families for whom dealing with the dying and death of their much loved child is a harsh reality and clinicians have a duty of care to ensure that safe, competent, holistic care is available at all times, through living, dying, death and bereavement. While it may be easier for clinicians not to think about the possibility that a child might die and instead ‘let nature take its course’ or follow ‘usual guidelines’, this may deny families the chance to make choices. This may mean that the child has a less dignified death, perhaps from complications of intensive care, with continuation of intrusive and painful tests and procedures or with symptoms that could have been better managed, in a clinical setting that does not afford the dignity, privacy or sense of control that many families may prefer. All of this may lead to complex difficulties for families in bereavement. Robust data and an evidence base about children and young people with life-limiting conditions are still sadly lacking in the UK, but there is much to learn from Why Children Die (Pearson 2008), which reports data about child deaths from 28 days of age to 18 years gathered in 2006 from pilot centres across England, Wales and Northern Ireland. In total, 735/957 (77%) of children who died had a history of a medical condition or some developmental delay, impairment or disability. Overall, 66% died in hospital. Of those recognized as having life-limiting illness, 73% died in hospital. The report made a number of recommendations, the first being that it is both practical and important to continue to gather quantitative and qualitative data about child deaths, which underpinned the child death review process in England, statutory since April 2008. From the other recommendations, there are specific points for those caring for disabled children and young people that are potentially measurable, including using the data collected in the child death review process: