Grieving the death of a childBMJ 2006; 332 doi: http://dx.doi.org/10.1136/bmj.332.7542.620 (Published 16 March 2006) Cite this as: BMJ 2006;332:620
- Beverley Raphael, professor of population mental health and disasters ()
The death of a child brings profound distress and intense grief to the family, challenging all those involved in caring for the family through such times. That such grief can lead to suicide is known, but two cases in this week's BMJ show a particular hazard after a child has died at home: in both cases mothers committed suicide with drugs prescribed for the palliative care of their children (p 647).1
There is substantial evidence from comparative and longitudinal studies that the grief of parents following the loss of a child is more intense and prolonged than that of other losses.2 3 Parental vulner-ability includes a heightened risk of suicide, especially in the first month, as shown in a nested case-control study of Danish longitudinal registers.4 Population based follow-up studies also show that anxiety and depression may last four to nine years after the loss of a child from cancer.5
When a child dies suddenly—for instance, through suicide, homicide, violence, or accidental death—parental grief may become complicated by post-traumatic stress reactions arising from the nature of these circumstances, so that the parent has to deal with the interplay of both trauma and grief.6
The challenges that arise when a death is prolonged are different. Caring for a child with chronic fatal disease such as cancer may involve intense and prolonged treatments; the sustaining of hope; the denial of the potential for death as the parent fights for the child's survival in a protracted battle with the disease. Anticipatory grieving as the probability of death becomes more real may lead parents to feel guilt about giving in to such a possibility—as though they are somehow abandoning the child. Alternatively, their relief that there will be an end to this suffering is ambivalent, again because it means admitting the reality of death.
The parent—usually the mother—may invest her own life so intensely, that she hopes by this to keep the child alive, by force of will, if all else fails. There are also the questions, the blame, and the guilt. Why did this child become ill, in this way? The “if only” “something” had been done differently, or not done. Parents search for information, gathering their own statistics, from which they may find further sources of hope, or alternatively sources of guilt and blame. This intense involvement may lead to an almost symbiotic relationship between mother and dying child in such circumstances, reflecting the desperation, the wish to bring the child back from the brink, and, more deeply in some circumstances, the mother's inner belief that she cannot live if her child dies.
In addition there may be “secrets”: that the possibility and then the reality of such a death cannot be spoken of, for fear it will make it happen. This may make for difficulties for the child, who is often well aware of what is happening but who may feel he or she cannot let go for fear the parent will not be able to cope. It may also prevent the goodbyes, the “good death” even in circumstances when death should not be happening, when there is the need for a more positive palliative care.7
All these issues may need to be considered in assessing the parent's and family's and child's needs through the period of preparation for the realities of the death and its aftermath. Clinical issues include recognising the dying child's understanding of death and needs at different stages of development; communicating the bad news to the family in a compassionate and supportive way, with later follow-up; having an honest, continuing dialogue that both promotes realistic hope and acknowledges possibilities and probabilities of dying; and ensuring good symptom management for the child.8
Looking after the caregiver, both before, during, and in the aftermath of the death is an integral part of comprehensive care. While many paediatric oncology units provide bereavement support for families, there is no strong evidence to inform such care.9 Surveys suggest that the quality of care received is generally perceived to be high,10 but there is a need for controlled trials in this ethically sensitive field.11 Linking to support groups is also of value, for instance Compassionate Friends (www.tcf.org.uk). Support from others who have survived such an experience can help parents to make some meaning of the unthinkable prospect of their child's death and to bring to bear their social, psychological, personal, and spiritual resources to deal with their grief, and to treasure the memories of their child.
Competing interests None declared.
Practice p 647