Parents and Healthcare Workers Have Different Preferences for End-of-Life Care for Children With Cancer

Lillian Sung, MD

Parents prefer palliative chemotherapy for their child with cancer who is not expected to survive, while healthcare workers favor supportive care, according to the results of a survey that aimed to determine the strength of end-of-life treatment preferences in these 2 groups.

Lillian Sung, MD, with the Hospital for Sick Children in Toronto, Ontario, Canada, and colleagues interviewed 128 healthcare professionals (HCPs) and 77 parents whose children were aged <18 years whose cancer had no reasonable chance of being cured. The HCPs included staff physicians practicing pediatric oncology, senior fellows, and nurses and social workers who worked exclusively with pediatric cancer patients.

Cancer is the second most common cause of death for children in North America who are aged 5 to 14 years. When the possibility of a cure becomes unlikely, parents and HCPs often need to choose between continuing aggressive treatment or providing relief from symptoms alone.

Even though the choice between palliative chemotherapy and supportive care alone is arguably among the most difficult decisions in pediatric oncology, there is scant information on whether the attitudes of parents and HCPs are congruent. Palliative chemotherapy was defined as the use of cytotoxic medications administered intravenously.

In the study, a single nurse conducted all interviews using kits with prepared scripts and visual aids that had been tested with a focus group. Overall, significantly more parents (54.5%) than HCPs (15.6%) preferred chemotherapy (P <.0001). HCPs tended to have a more favor-able view of supportive care alone than parents did.

Also, parents ranked “hope” as an important factor in their decision making. “Given their relatively scant experience with the outcomes of similar children, parents may focus more on hope for their child compared with HCPs, who are more aware of eventual outcomes given their experiences with many similar children,” wrote Sung and colleagues.

The authors acknowledged that they did not query children about their preferences for end-of-life care, which they say may be an important limitation. Also, the usefulness of the results may be limited by the fact that the majority of HCPs who participated in the study were nurses, who do not usually make decisions about chemotherapy versus supportive care.

Finally, they noted that even though the families participating in the study had a child who was not expected to survive cancer, the parents were asked to make decisions in a hypothetical setting. The parents’ decisions in real life may be different, they said.

Tomlinson D, Bartels U, Gammon J, et al. Chemotherapy versus supportive care alone in pediatric palliative care for cancer: comparing the preferences of parents and health care professionals [published online ahead of print October 17, 2011]. CMAJ. 2011;DOI:10.1503/cmaj.111557.