An International Study of Decision Making in Pediatric Oncology

Abstract

With therapeutic and supportive care options increasing in number and differing in nature in pediatric oncology, parents, patients, and healthcare providers are encountering multiple decision points during the course of treatment. Understanding the decision-making process experienced by the patient and parent will help healthcare professionals to better assist them and each other with the decision making and its aftermath. The purpose of this international feasibility study was to explore similarities and differences in decision making among parents in three countries. This study was guided by the descriptive-decision-theoretic model, which emphasizes the need to describe actual decision making before attempting to alter that process. Parents and patients were eligible for this descriptive cross-sectional design if they were at one of four decision points in treatment within, (a) 4 to 6 weeks of completing frontline therapeutic protocols and doing so without disease progression or recurrence, (b) 4 to 6 weeks of a confirmed disease progression that necessitated changing treatment plans, (c) 4 to 6 weeks of a first or second recurrence that followed a disease-and treatment-free period, or (d) 3 to 7 days of having made an end-of-life decision. Study participants responded to six openended interview questions used in previous decision making studies with similar purposes. Demographic data for patients and parents were also collected. The three settings included a pediatric cancer center in the United States, a pediatric hospital in Australia, and a general hospital in Hong Kong. A total of 47 families (42 parents and 9 patients) have been interviewed (20 at the U.S. setting; 13 in Australia; and 14 in Hong Kong). All transcribed interviews were coded by three raters using the content analysis techniques of Krippendorff (1980) and agreement ratings were 88% or higher. Codes were generated for each group by decision point and study site. Between 23 and 59 codes were generated for each group across the three sites. A shared code that is reported most frequently across groups and sites is &dquo;receiving information from a health care professional.&dquo; A major difference among the three sites is the parental interpretation of the concept-decision making by parents-with some parents at the Hong Kong site not understanding the option of their involvement with the decision making because they assume or prefer that the physician make the decisions. Parents at the other two sites do not have difficulty with the concept. Parents at the Australian site were more likely to consider alternative therapies. These findings will contribute to guidelines being developed to help healthcare providers understand and assist parents and patients with decisions that occur as part of the treatment for childhood cancer.

Factors Related to Voluntary Parental Decision-Making in Pediatric Oncology

“…When making a decision about a treatment protocol in pediatric oncology, parents are faced with a tragic, unwanted choice between potentially lifesaving and toxic treatment or death. 11,12 This situation is likely to produce feelings of powerlessness, which may translate into decreased control over specific decisions. In contrast, parents making 26,27 An examination of these complex relationships is an important next step, because the ethical imperative of beneficence may be best achieved by helping parents to reach their desired level of control.…”

“…In prior qualitative research parents of children with cancer reported feelings of shock and distress that impaired their decision-making about treatment 8 and research participation. 9,10 Parents reported feeling pressured to agree with physicians regarding treatment 8 and perceived few alternatives with respect to treatment 11,12 or clinical trial enrollment. 9 A number of demographic and contextual factors may relate to voluntariness, including demographic characteristics such as gender, 13 race, 14 education, 15 and income; 2,16 previous experience with a similar decision; time since diagnosis; parents' concern that the child' s care could be negatively affected or the medical team would be upset if the parent declines; 4,17 others'attempts to coerce, pressure, or manipulate the decision; 18 time pressure; 8,13,19 and the amount of information provided (too much or too little).…”

Factors Related to Voluntary Parental Decision-Making in Pediatric Oncology

“…When making a decision about a treatment protocol in pediatric oncology, parents are faced with a tragic, unwanted choice between potentially lifesaving and toxic treatment or death. 11,12 This situation is likely to produce feelings of powerlessness, which may translate into decreased control over specific decisions. In contrast, parents making 26,27 An examination of these complex relationships is an important next step, because the ethical imperative of beneficence may be best achieved by helping parents to reach their desired level of control.…”

“…In prior qualitative research parents of children with cancer reported feelings of shock and distress that impaired their decision-making about treatment 8 and research participation. 9,10 Parents reported feeling pressured to agree with physicians regarding treatment 8 and perceived few alternatives with respect to treatment 11,12 or clinical trial enrollment. 9 A number of demographic and contextual factors may relate to voluntariness, including demographic characteristics such as gender, 13 race, 14 education, 15 and income; 2,16 previous experience with a similar decision; time since diagnosis; parents' concern that the child' s care could be negatively affected or the medical team would be upset if the parent declines; 4,17 others'attempts to coerce, pressure, or manipulate the decision; 18 time pressure; 8,13,19 and the amount of information provided (too much or too little).…”

Preferences for end-of-life care for children with cancer

“…Another study involving 43 parents suggested that parents fear disagreeing with health care workers over medical decisions concerning end-of-life care for their children. 6 In their recent study published in CMAJ, Tomlinson and colleagues add to the scant information available on end-of-life decision-making for children and pediatric palliative care. 7 The purpose of their study was to compare preferences for end-of-life treatment between health care workers and parents of children who were not expected to survive.…”