Contrasting Views on Treatment of Children Dying From Cancer

From Medscape Medical News > Oncology Roxanne Nelson October 19, 2011 — Despite significant improvements in cure rates, childhood cancer can follow an unpredictable course. In some cases, the disease will progress or recur and ultimately lead to death. A new study has found that parents and healthcare professionals might not always see eye to eye when it comes to end-of-life care for a child. A study published online October 17 in CMAJ found that, compared with healthcare providers, parents strongly favored aggressive treatment in the palliative phase of care. Parents also ranked hope as a more important factor when making treatment-related decisions. Hope and the child's quality of life tied for the highest ranking in importance for parents; these were followed by increased survival time. Healthcare professionals, however, ranked quality of life as the most important factor, followed by increased survival time. The researchers observed that parents favored the use of chemotherapy more than healthcare professionals (54.5% vs 15.6%; P < .0001). "Information about the quality of life and length of life is important, but we don't know a lot about these parameters in real life," said lead author Lillian Sung, MD, PhD, a pediatric oncologist at the Hospital for Sick Children in Toronto, Ontario, Canada. "These should be research parameters." For example, in some cases, chemotherapy can improve quality of life, she explained in an interview. Healthcare professionals also need to speak more explicitly with parents about end-of-life care and explain what the choices are and what can be expected, she continued. "We need more communication and more honest dialogue." Hope is a good coping mechanism. "We also need to let parents know that we appreciate where they're coming from, and that we don't want to take away hope," said Dr. Sung. "Hope is a good coping mechanism, but the nature of that hope may change in the trajectory of illness." At the outset, a parent's hope might be for a cure, but as the illness progresses, that hope changes to wanting more time and a better quality of time; finally, it might evolve to hoping for a peaceful death, she explained. "We need to work with parents and provide guidance," Dr. Sung explained. "We also shouldn't assume that just because parents are hopeful that they don't understand what's going on." Child's Input In a commentary accompanying the study, Caprice Knapp, PhD, and Kelly Komatz, MD, both from the University of Florida, Gainesville, note that this study is important because it highlights "the incongruity between the preferences of parents and those of healthcare workers." "It may be that this incongruity masks a greater concern: miscommunication or unrealistic expectations," they write, pointing out that a key finding of research recently published by the Center to Advance Palliative Care was that most physicians do not understand the scope of palliative care. "If there is a basic misunderstanding of terminology, definitions, and messages associated with end-of-life care, then incongruity of preferences might be expected," the editorialists note. The researchers highlight the importance of hope in the pediatric palliative setting and the difficulty in balancing "hope for a cure with hope for the comfort and dignity of the child." This study is important because of its design and rigor, the editorialists explain. Even though only 77 interviews were completed, that is "an impressive number that should be acknowledged," they write, adding that evidence in pediatric palliative care is limited by small sample sizes, and that the authors should be "commended for consistently doing their study over 4 years." However, an important limitation of the study is that the children's preferences were not obtained, Drs. Knapp and Komatz write. Not including that information "fails to recognize that decision-making is triadic, not dyadic." "Without this information, it is unclear whether families or healthcare workers drive incongruity," they note. Dr. Sung agrees that the child's input is very important, and notes that parents did rate their child's opinion as being very important in making this type of decision. Depending on the child's maturity and cognitive ability, it is important to include them in these discussions. It is very rare that clinicians speak to the children, said Dr. Sung. "By talking to them, it may facilitate their comfort and allow them to express their own feelings. There is great value in what the children have to say." Chemotherapy and Importance of Hope Choosing between palliative chemotherapy and supportive care alone is one of the most important and difficult decisions in pediatric oncology. The goal of this study was to compare the strength of preference between parents and healthcare professionals for supportive care alone and palliative chemotherapy, the researchers explain. Prior to beginning the study, Dr. Sung and colleagues held a focus group with 12 parents of children who had died of cancer. From this, they identified the range of factors that parents consider important when choosing between supportive care and palliative chemotherapy. The focus group also tested the visual aids and the interview scripts that were going to be used in the study to help ensure that the potential for causing additional distress to the participants would be minimized. A total of 77 parents of children whose cancer had no reasonable chance of being cured and 128 healthcare professionals in pediatric oncology were involved in the study. Interviews were conducted with both parents and providers, and visual analogue scales were used to help respondents illustrate the anticipated level of the child's quality of life, the expected duration of survival, and the probability of cure (for healthcare personnel only). The participants were then asked about their preference for treatment options, given these baseline attributes, reported which factors might affect this decision, and ranked all identified factors in order of importance. Overall, parents and healthcare professionals had similar viewpoints when making end-of-life decisions, although parents focused more on the importance of hope. In addition, as a group, healthcare providers tended to regard supportive care alone more positively than parents. This indicates, the authors note, that parents and healthcare professionals generally have different underlying attitudes about end-of-life care. These differences might, in part, "contribute to the apparent conflict between professionals and parents when tensions emerge during the palliative phase of care," they write. Despite the importance that parents placed on the child's quality of life, they still reported that they would accept chemotherapy if it reduced both quality of life and survival time. This finding, the authors note, shows the complexity of decision-making, and that it is "possible that hope for a cure is such an important factor that it may override considerations of the child's quality of life and survival time." The study was supported by the Canadian Cancer Society. Dr. Sung is supported by the Canadian Institutes of Health Research through a New Investigator Award. The other authors and the editorialists have disclosed no relevant financial relationships. CMAJ. Published online October 17, 2011. Abstract, Abstract