Parents whose children are dying of cancer may consider hastening the process to reduce the length of time they spend suffering, a study has found.
Researchers in the US questioned more than 140 parents who had lost a child to the disease between 1990 and 1999. They found that more than 10 per cent had thought about bringing on the death of their child, especially if they felt they were in constant pain.
The report, published in the journal Archives of Pediatrics & Adolescent Medicine, is the first time such a sensitive area in relation to cancer has been explored. The researchers said the findings underscored the importance of managing patients’ pain and talking to parents about how their children’s suffering can be eased.
The study’s senior author Joanne Wolfe, division chief of Pediatric Palliative Care at the Dana-Farber Cancer Institute in Boston, said: “The problem is that conversations about these family worries may not always happen. Parents may not have the opportunity to express these feelings and considerations, and as clinicians, we may not be adequately enabling sufficient opportunity for them to talk about their concerns.”
The parents were questioned about their behaviour and feelings leading up to their child’s death and were also shown a series of hypothetical vignettes involving a terminally ill child who was going through uncontrollable and excruciating pain.
One in eight (13 per cent) said they had considered asking their doctor about the possibility of ending their child’s life, with 9 per cent actually having such a discussion. Five requested that their child’s death be hastened, and three parents said their wishes had been carried out with the use of morphine.
However, Dr Wolfe said “this may not reflect what actually happened, because morphine is used in increasing doses to manage worsening pain without the intent or the effect of ending life.” Half of the parents also said they would be in favour of hastening the death of the child in the vignette.
In the UK, about 2,100 young people aged between 13 and 24 are diagnosed with cancer every year. The disease is the top cause of non-accidental death in teenagers and young adults, but almost 75 per cent survive. Different cancers predominate at different ages, with leukaemia, lymphomas and brain tumours particularly common in those aged between 13 and 18.
Richard Palmer is treasurer of the National Alliance of Childhood Cancer Parent Organisations (NACCPO), which supports the families of children and young adults with cancer. His son Nick was diagnosed with the disease at the age of 11, and died two years later despite undergoing treatment.
“I’m sure there are parents of children who are suffering from cancer and that such thoughts will have crossed their minds, but there’s a difference between thinking those thoughts and actually doing anything about it,” he said. “As a parent, you have this inbuilt thing of wanting to protect your child from harm and when you can’t, you become particularly desperate.
“When my son had a spinal cord tumour, there were times when he was terminally ill and in extreme pain and I had similar thoughts to some of the parents questioned in this study. And I’ve met parents through NACCPO who have been through the same thing and who have had the same thoughts.”
Simon Davies, chief executive of the Teenage Cancer Trust, said: “Teenage Cancer Trust knows from speaking to parents of terminally ill young cancer patients how incredibly hard it can be to see a child suffering and the findings of this study certainly bear this out.
“Where teenage patients over the age of 16 are involved, we believe that they should be supported by their medical team and family to make their own decisions about their care and treatment. In the case of those teenagers under 16, we believe it is best practice to involve patients and empower them to contribute to those decisions.”
A spokesman for the children’s cancer charity CLIC Sargent said the issue was something it was “discussing internally”, but was not prepared to comment on at present.