Ethical issues in children with cardiomyopathy: Making sense of ethical challenges in the clinical setting

Although there has been substantial progress in the treatment of cardiomyopathy in children, the field is still evolving and many of the important aspects of cardiomyopathy care remain uncertain. As a result of this uncertainty, parents and health care professionals are often faced with difficult decisions that raise serious ethical concerns. We identify and discuss some of these challenges within the framework of ethics and medical decision making. We address several common issues: (1) Who makes decisions in the case of children and adolescents with cardiomyopathy, and how are these made? (2) How should the effect of a treatment be weighed against consideration of the impact of the treatment on the child's quality of life? (3) How should the limitations of treatment effectiveness and the impact on scarce resources be addressed in children with cardiomyopathy, and (4) What is the role of a pediatric bioethics committee in facilitating decision-making related to cardiomyopathy in children? The patient's health care team must be able to identify and address the ethical considerations that arise in the setting of a child with a disease that has a high risk of progressing towards transplant and possibly an early death. Physicians and other health care professionals who care for children with pediatric cardiomyopathy often face questions related to deciding who should be involved with medical decision making, balancing acute physiologic benefits with considerations of the patient's quality of life and understanding how the concept of futility applies in an otherwise aggressive treatment setting. To aid clinicians with these challenges, we discuss the role of an ethics consultation in the management process of a child with cardiomyopathy.