Kate A. Mazur - Ethical Issues in Pediatric Hematology/Oncology

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Pediatric hematology and oncology is plagued with ethical dilemmas from the time of diagnosis through end-of-life care. Although adult and pediatric hematology/oncology share the same core ethical principles of respect, beneficence, nonmaleficence, and justice, pediatrics contains its own unique challenges. Our goals in presenting this book are to provide a uniquely targeted overview of the principles of ethical pediatric decision-making, the unique difficulties in enrolling children as research subjects, the common ethical conundrums involved in providing end-of-life care, and the general moralities of pediatric hematology/oncology practice.

Pediatric hematologists and oncologists must understand these issues and face these challenges in order to provide ethically sound clinical care. Childrens decision-making capacity evolves along a developmental continuum, while minors are not able to provide legally effective informed consent. Thus, in a model of shared decision-making, the physician provides information to the caregiver and the child, the caregiver provides permission to treat the child, and the child, to the extent their capacity permits, gives assent. However, considerable controversy remains about how to assess a childs understanding of the information provided, how seriously dissent should be taken, and when the childs wishes should take precedence over those of the caregivers.

Furthermore, in contrast to adults, children with cancer and blood disorders are often enrolled onto clinical trials and are nearly universally treated with protocol-based therapy. Despite the importance of conducting this research to improve patient outcomes, there remain significant ethical challenges that are unique to the pediatric population. As with clinical treatment, permission and assent for research participation require complex shared decision-making. Nontherapeutic interventions, such as research-related blood draws, or research with uncertain direct benefit, such as early phase clinical trials, may further complicate the ethical challenges in this vulnerable population.

Every pediatric hematologist and oncologist is confronted with these frequent challenges in daily practice and clinical research. We aim in this textbook to highlight the interaction between ethical principles and clinical and research issues in a systematic manner that will enhance providers understanding of this interaction and offer guidance to help untangle difficult problems and suggest a path forward that is both ethical and practical. We hope to expand and strengthen providers knowledge and experience in pediatric hematology/oncology ethical issues, positioning providers to be a beneficial resource to other faculty, staff, patients, and families within their institution. We include the multidisciplinary approach to sound ethical practices that is necessary to effectively care for these patients and their families.

We would like to thank the many colleagues and collaborators who have increased our understanding of ethical issues in clinical care and research. Most importantly, we acknowledge and thank the countless patients and families without whom this text would not exist, and who inspire and teach us every day.