When a young patient is dying, many pediatricians believe it is their job to continue providing care to the very end. A recent study in The Journal of Pediatrics surveyed bereaved parents about how well pediatricians met their needs through the end-of-life care and discovered some opportunities for improvement.
The survey was conducted in 2013 and included 48 parents who lost a child who was born between 2000 and 2010. The respondents were all parents to a child who had had spinal muscular atrophy type I or II.
Here are four findings from the survey.
1. All of the parents who wanted their child to die at the hospital had their wish granted, but only 10 of the 16 parents who wanted their child to be able to die at home were allowed to do so.
2. Twenty-six of the parents talked with a physician about how they wanted their child to pass away and all but two had their wishes fulfilled.
3. Thirty-six parents reported their child had siblings. Although 24 parents said the siblings were old enough to receive professional psychological support to handle their grieving, only four actually received such support.
4. Although the majority of parents (83 percent) said their healthcare staff was supportive, 13 parents (27 percent) experienced healthcare staff saying or doing something in connection with their child's death that was distressful.
"The results of our study showed that healthcare staff were usually a great support for the families, except for siblings. Siblings have long been overlooked, although they receive more attention now than previously," the authors wrote. "Apart from the shortcoming regarding sibling support, many of our other findings are encouraging: the bereaved parents in this study expressed that they had an opportunity to spend as much time as they wanted with their child after death and said goodbye in the way they wished."
More articles on end-of-life care:
Familial optimism fuels invasive care at end of life
Survey: Massachusetts physicians, patients fail to prepare for end-of-life care
24% of physicians say their EHRs can't accommodate end-of-life planning