Public Release:  Pediatric cancer and palliative care: parental preferences compared with health-care professionals

Canadian Medical Association Journal

Parents of children in the palliative stage of cancer favour aggressive chemotherapy over supportive care compared with health care professionals, states an article in CMAJ (Canadian Medical Association Journal) (pre-embargo link only) http://www.cmaj.ca/site/embargo/cmaj110392.pdf.

Cancer is the second most common cause of death for children aged 5 to 14 in North America. When it is unlikely the cancer will be cured, parents and health care professionals must often choose between continuing aggressive treatments or providing supportive care alone to alleviate discomfort.

"The choice between palliative chemotherapy and supportive care alone is one of the most important and difficult decisions for parents of children whose disease cannot be cured," writes Dr. Lillian Sung, Division of Haematology/Oncology, The Hospital for Sick Children (SickKids), Toronto, with coauthors.

The researchers sought to compare preferences between parents and health care professionals in making these decisions. They included 77 parents whose children (under the age of 18) had no reasonable chance of recovering from cancer as well as 128 staff physicians, senior fellows, nurses and social workers who work with pediatric cancer patients.

They found that 55% of parents favoured chemotherapy over supportive care compared with 16% of health care professionals. Health care professionals viewed supportive care more positively than parents did. The researchers suggest that "parents may focus more on hope for their child compared with health care professionals, who are more aware of eventual outcomes given their experiences with many similar children."

"Despite the high importance ranking they assigned to their child's quality of life, parents reported that they would accept chemotherapy even if it reduced both quality of life and survival time," write the authors. "This finding shows the complexity of decision-making."

They conclude that it is important for health care professionals to be aware of differing attitudes to aggressive chemotherapy and to gather and communicate information to parents regarding quality of life and survival during decision-making.

In a related commentary http://www.cmaj.ca/site/embargo/cmaj111557.pdf, Caprice Knapp and Dr. Kelly Komatz, University of Florida, write that "little is known about decision-making preferences surrounding end-of-life care for children" and that this research study adds to the limited information on end-of-life decision-making in pediatric palliative care.

"This study is important because it highlights the incongruity between the preferences of parents and health care workers," state the authors. "However, it may be that this incongruity masks a greater concern: miscommunication or unrealistic expectations."

Sung adds that the findings provide an opportunity "to educate families that chemotherapy and palliative care do not have to be mutually exclusive. We aim to work with families to maintain hope while optimizing the child's quality of life."

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