Pediatric oncology patients experience a high degree of symptom-related suffering early in cancer therapy, and very few patients or parents in this study expressed negative attitudes toward early palliative care. Our findings suggest that pediatric oncology patients and families might benefit from, and are not a barrier to, early palliative care integration in oncology.
BACKGROUND: This qualitative study investigated the medical decision-making preferences of adolescent oncology patients and the parental and clinician behaviors that adolescents report to be supportive of their preferred level of decision-making involvement. METHODS: Interviews were conducted with 40 adolescents between the ages of 12 and 18 years who were undergoing cancer treatment in Memphis, Tenn or Washington, DC. Role preferences were converted into a predetermined Likert scale decisional preference score. A semantic content analysis was used to analyze patient reports of parental behaviors, attitudes, knowledge levels, and relational interactions that facilitated their preferred level of involvement in decision making. Clinician behaviors described as supportive of decisional processes were also categorized thematically. A teen advisory council validated study findings. Data reporting followed strict adherence to Consolidated Criteria for Reporting Qualitative Research guidelines. RESULTS: Adolescents indicated a spectrum of preferred decisional roles, with the most common being an actively involved role (26 of 40 or 65%), although a shared decisionmaking approach was still valued. There was no statistically significant difference in the preferred decisional role with respect to demographic or medical characteristics, including the relapse status, although adolescents who preferred autonomous interview settings were more likely to prefer active decisional roles (P <.001). Adolescents recognized that situational and social contexts might shift their preferred level of involvement in medical decisions. Although adolescents wanted to be involved in decisions, they also expressed an appreciation of family insight, parental presence, and clinician guidance. CONCLUSIONS: Adolescents with cancer are able to retrospectively identify their preferences for inclusion in medical decision making, and even when preferring involvement, they value the input of trusted others. Cancer 2015;121:4416-24.
Children with cancer who receive PC experience a high burden of intensive treatments and often die in inpatient intensive care settings. Delayed PC involvement is associated with increased odds of dying in the intensive care unit. Prospective investigation of early PC involvement in children with high-risk cancer is needed to better understand potential impacts on cost-effectiveness, quality of life, and delivery of goal concordant care.
Context
Pediatric patients with solid tumors can have a significant symptom burden that impacts quality of life and end-of-life care needs.
Objectives
We evaluated outcomes and symptoms in children with solid tumors, and compared patterns of end-of-life care after implementation of a dedicated institutional pediatric palliative care service.
Methods
We performed a retrospective cohort study of children with solid tumors treated at St. Jude Children’s Research Hospital, before and after implementation of the institutional Quality of Life/Palliative Care (QoL/PC) Service in January 2007. Patients who died between July 2001- February 2005 (historical cohort; n=134) were compared to those who died between January 2007- January 2012 (QoL/PC cohort; n=57).
Results
Median time to first QoL/PC consultation was 17.2 months (range, 9–33 months). At consultation, 60% of children were not receiving or discontinued cancer-directed therapy. Within the QoL/PC cohort, 54 patients had documented symptoms; 94% required intervention for ≥ 3 symptoms; 76% received intervention for ≥ 5 symptoms. Eighty-three percent achieved their preferred place of death. Compared to the historical cohort, the QoL/PC cohort had more end-of-life discussions per patient (median, 12 vs. 3; P<0.001), earlier end-of-life discussions, with longer times before do-not-resuscitate orders (median, 195 vs. 2 days; P<0.001), and greater hospice enrollment (71% vs. 46%, P=0.002).
Conclusion
Although children with solid tumor malignancies may have significant symptom burden towards end of life, positive changes were documented in communication and in places of care and death following implementation of a pediatric palliative care service.
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