Palliative care in pediatric oncology : ethical considerations surrounding shared decision-making

In Switzerland, between 2005 and 2014 there was an average of nearly 250 new cases of cancer in children per year. Based on a five year survival rate of more than 80%, almost 50 deaths due to childhood cancer per year can be estimated. According to the World Health Organization and international medical guidelines, pediatric palliative care should begin at the diagnosis of a life-threatening illness, continue throughout a child’s illness trajectory, through death and beyond. In the pediatric setting, shared decision-making has become the predominant approach to facilitate the decision-making process among physicians, parents, and the child. However, there is evidence that shared decision-making in pediatric oncology needs further improvement and that it is still understudied. Thus, the goal of this thesis is to propose ethically sound and practically feasible ways to enhance shared decision-making regarding palliative care in pediatric oncology. In order to meet this objective, a mixed-methods approach that employed various quantitative and qualitative methods is used. Furthermore, this thesis integrates empirical and normative analyses for addressing ethical concerns that contribute to the overall bioethical debate on shared decision-making regarding palliative care in pediatric oncology. The thesis is arranged in three main parts: (1) background (chapter 1), (2) journal articles (chapter 2  9), and (3) general discussion (chapter 10).
The background (chapter 1) provides an introduction to pediatric palliative care, to shared decision-making, and to the ethico-legal imperative for shared decision-making. Further, after a general overview over the emerging field of empirical bioethics it delineates the particular empirical bioethics methodology that was used in this thesis, namely Critical Applied Ethics. Finally, the background presents the research objectives and the description of the mixed methods approach. Chapter 2 gives insights into how shared decision-making occurs in Swiss Pediatric Oncology Group centers from the viewpoints of parents and physicians. Quantitative analysis of questionnaires reveals systematic differences between parents’ and physicians’ perceptions of the same child. Further, sex and age predict a child’s involvement in decision-making. Chapter 3 explores the provision of pediatric palliative care and related decision-making in Swiss pediatric oncology settings. Results from a retrospective review of medical records of deceased children show that there are still high numbers of late or non-referrals and even children older than 12 years were not involved. Also, leukemia patients were less likely to receive palliative care than the overall sample. Chapter 4 examines children’s and their families’ burden due to adherence to cancer treatment. Quantitative analysis of medical records of deceased children reveals that children and their families face a significant burden of treatment. Moreover, leukemia patients had a higher number of inpatient stays, spent more time in hospital both during the entire illness and during the last month of their life, and were more likely to die in the hospital than patients with CNS neoplasms and other diagnoses. Chapter 5 addresses the understanding of pediatric palliative care in pediatric oncology centers in Switzerland. Qualitative analysis of focus group interviews with various stakeholders show that there are still difficulties regarding the implementation of the rather philosophical definition of pediatric palliative care as set out by the World Health Organization and that palliative care, frequently, is not initiated at diagnosis. Chapter 6 evaluates the timing of palliative care in pediatric oncology patients through a systematic literature review. Data reveals that pediatric palliative care consultation does not occur until late in the illness and palliative care does not begin until close to death. Chapter 7 identifies barriers and recommendations for the proper implementation of pediatric palliative care through a systematic literature review of articles that discuss international guidelines. Identified barriers in the literature are: gaps within medical practice, lack of evidence-based research, absence of clear guidance regarding bereavement care, and challenges involved in multidisciplinary teams. Common recommendations that can be found in the literature are: training and education, multidisciplinarity, research on the benefits of and raising awareness about pediatric palliative care. Finally, the question arises whether pediatric palliative care has not lost sight of end-of-life issues, focusing too narrowly on quality of life. Chapter 8 covers conceptual confusion of three core domains of pediatric palliative care. Five online databases were searched systematically, in addition to a google search. Analysis focused on the language used to determine the domains of pediatric palliative care. Analysis revealed that, first, psychological care is not sufficiently demarcated from emotional care; second, it remains unclear what separates social from psychosocial care; third, spiritual care is not sufficiently distinguished from existential and religious care. Finally, it is shown that this confusion negatively affects clinical practice. Chapter 9 argues that decision-making capacity would benefit from being treated as an essentially contested concept as this warns against any reification of what it means to have capacity. Further, using decisional capacity in a questioning mode gives space to alternative interpretations that might advance the ongoing debate surrounding decision-making. The general discussion (chapter 10) provides an integration of empirical results and ethical analysis which is structured in three subparts: conceptual background of shared decision-making, pre-existing conditions of shared decision-making, and the process of shared decision-making. Moreover, it illustrates the application of the used empirical bioethics methodology (Critical Applied Ethics) within the reported research project. Next, limitations and implications for further research are addressed. The thesis closes with the conclusions section that contains seven recommendations for practice and theory which represent the very essence of the reported findings.