More than a third of parents who wanted their terminally ill children to die at home did not have their wishes fulfilled, a survey of 48 Swedish parents found.
Of the 32 parents who expressed a desire for where their child should finally die, 16 requested to have their children die at home, but in six cases the child ended up dying in a hospital or in the car on the way home from the hospital, reported Malin Lövgren, RN, PhD, of Karolinska Institute in Stockholm, and colleagues.
However, the 15 parents who wanted their terminally ill child to die in a children's hospital all had their wishes fulfilled. In total, two-thirds of parents said that their preferences about location of their child's death were respected, the authors wrote in the Journal of Pediatrics.
Communication appeared to play a vital role in this process. Of the 26 who talked to a physician about their wishes, only two said they did not have their wishes honored.
One-third of parents in the survey said they had no preference for where they wanted their child to die.
Provider support also helped parents through their grief, as most respondents said that the healthcare staff said or did something in connection with the death of the child that the parents remembered as being especially supportive or considerate.
"These results reinforce the importance of clear and open communication between medical providers and parents as the end of a child's life approaches," Stacey Berg, MD, of Texas Children's Hospital in Houston, who was not involved with the research, wrote in an email to MedPage Today. "The paper highlights considerations applicable to planning end of life care for any child, including home hospice/palliative care, support for siblings, and attention to the dying child's symptoms."
Conversely, about a quarter of parents reported the healthcare staff said or did something they remembered as being particularly distressful. While insensitive remarks (seven cases) were the most common complaint, two parents reported that the staff were "stressed."
Lövgren's team said that a previous study found that, while healthcare staff found meaning and satisfaction from their role in bereavement care, they also experienced logistical barriers, lack of training, and lack of support.
This stress sometimes extended to the patient. Among the parents who wanted their terminally ill child to die at a hospital, a greater portion reported their child was more worried or anxious during their last month than parents who wanted their child to die at home (73% versus 50%, respectively).
The authors also found that siblings were largely overlooked in the process. While 75% of parents reported their child had siblings, only four out of 24 siblings received professional psychological support from anyone outside the family.
In 2013, Lövgren and colleagues surveyed 48 Swedish parents whose children were born between 2000 and 2010, and had subsequently died from spinal muscular atrophy types I and II (a rare neuromuscular disorder). The mean age at the time of death was 9.5 months, and most children received respiratory support or special respiratory treatment. The mean age of participating parents was 41 years, and all were either married or cohabiting.
Limitations to the study included that the questionnaire was anonymous, meaning that two parents from the same family could potentially represent one child, as well as the small sample size.
While the study focused on children with a particular type of condition, the authors said that their results were similar to previous studies examining other life-limiting and life-threatening conditions, such as cancer. They added that their findings highlight factors that can be considered when planning for the end-of-life care of children.
"Pediatric palliative care plans facilitate home death for children," they wrote. "However, despite increasing interest in pediatric advanced care planning, few systematic plans exist in pediatrics worldwide, and none in Europe."
This study was supported by grants from the ALF, Gålö Foundation, and Freja.
Lövgren and colleagues disclosed no relevant financial relationships.
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