Commentary From the Committee on Bioethics and the Section on Bioethics
The American Academy of Pediatrics (AAP) Committee on Bioethics (COB) began in 1979 as an ad hoc committee of 3 and became an official AAP committee in 1985. Since its inception, the COB has identified bioethical issues in pediatrics, advised the AAP Board of Directors and the Washington office staff on the ethical implications of policies and legislative proposals, and adopted as its primary mission the writing of policy statements on bioethical issues. The Section on Bioethics (SOB) was founded in 1988 with the mission of supporting medical education in bioethics. Today, the SOB continues that role, focusing on educational activities in ethics for the AAP in continuous collaboration with the COB.
The chairs of the COB and SOB polled membership in both groups regarding sentinel ethics articles, reviewed the table of contents of previous issues to identify additional candidate papers, and then selected the included articles based on themes in bioethical advancement.
The Growth and Evolution of Pediatric Bioethics: Embracing the Moral Complexity of Caring for Children
Naomi Laventhal, MD, MA, HEC-C, FAAP1, Steven R. Leuthner, MD, MA, FAAP2
Affiliations: 1Professor of Pediatrics, Faculty Clinical Ethicist and Research Ethics Co-Chief,
Center for Bioethics and Social Sciences in Medicine, University of Michigan; 2Professor of Pediatrics and Bioethics, Medical College of Wisconsin, Medical Director, Palliative Care, The Zore Family Chair in Palliative Care, Children’s Wisconsin
Highlighted Articles From Pediatrics
- Silverman WA. Informed consent. Pediatrics. 1966;38(3):373-374
- Bartholome WG. Informed consent, parental permission, and assent in pediatric practice. Pediatrics. 1995;96(5):981-982
- Solomon MZ, Sellers DE, Heller KS, et al. New and lingering controversies in pediatric end-of-life care. Pediatrics. 2005;116(4):872-883
- Kesselheim JC, Johnson J, Joffe S. Ethics consultation in children's hospitals: results from a survey of pediatric clinical ethicists. Pediatrics. 2010;125(4):742-746
- Lang CW, Smith PJ, Ross LF. Ethics and professionalism in the pediatric curriculum: a survey of pediatric program directors. Pediatrics. 2009;124(4):1143-1151
As chairs of the AAP COB and SOB, it was a joyful experience for us to look back through past issues and appreciate the growth and evolution of the field of pediatric bioethics. In reflecting on the rich catalogue of bioethics-related publications in Pediatrics, 2 broad themes stand out.
The first theme is the exponential increase in number of ethics publications: this is not surprising, because the field of health care ethics is a modern, post-World War II phenomenon, with its roots in public outrage over Nazi war crimes and Henry Beecher’s landmark 1966 paper “Ethics and Clinical Research”1,2 In fact, our first highlighted publication, the very first ethics paper we identified in Pediatrics, was published in the same year.
The second theme is that the scope of ethics scholarship quickly broadened to include multiple topic areas, including doctor-patient-family relationships, authority and autonomy, complex decision-making around disability, medical technology, and death and dying.
Pediatrics publishes a wide variety of bioethics scholarship and clinical guidance, including AAP COB policy statements, clinical reports, and technical reports; the “Ethics Rounds” series, which invites experts around the country to discuss thorny cases that are salient to real-time challenges we face; and normative and empirical scholarship. Some of this scholarship focuses on the practice of clinical ethics, such as teaching clinical ethics and professionalism skills and clinical ethics consultation service delivery. We are excited to witness that application of clinical and health services research methods to bioethical topics and anticipate that ethical guidance for pediatricians will be based on an increasingly evidence-based approach.
We are pleased to share 5 influential papers published in Pediatrics in celebration of the 75th anniversary of the journal.
“Informed Consent; Commentaries; William Silverman MD, 1966”3
Understanding the “special position of infants and young children as subjects in therapeutic and non-therapeutic investigations” is first explored, recognizing that both physicians and parents must navigate through complexities as they arbitrate these decisions. Dr. Silverman presents how the “physician-friend” should help and guide parental decisions consistent with the welfare and well-being of the child. At the same time the physician investigator and research review committees must work so as to not exclude pediatric patients from potential advantages of participation in clinical research activities that can improve children’s health. These relationships are as important today as ever.
Untidy dissent is a defining feature of bioethics, and we find it fitting to celebrate it here. William Bartholome was a leader and pioneer in pediatric ethics; the Section on Bioethics annual award for ethical excellence bears his name. The AAP began work on a policy on informed consent in 1976; Dr. Bartholome presented this policy to the AAP in 1985, and it was finally adopted in 1995—by that point he was no longer a member of the COB, but he submitted the accompanying letter that we have included here.5 In it, he raised concerns about qualifications around adolescents’ agency in their own health care decisions, worrying that “loopholes” allowing for parents and pediatricians to override adolescent patients’ wishes if there were “persuasive reasons for doing so,” performative “elements of assent,” and “romantic” views of family discord detrimental to our pursuit of creating “respectful, functional interpersonal relationships with the children and adolescents we seek to serve as physicians.” As we continue to worry about adolescents’ access to reproductive and gender-affirming care, the complex ethical landscape of emerging autonomy is as salient now as it was then.
Ethical issues in pediatric palliative care are empirically explored in this paper in response to a call by the Institute of Medicine for more research following some landmark articles that first described withdrawing and withholding life-sustaining medical treatments in pediatrics. A survey of different providers at 7 teaching institutions explored issues of conscience, knowledge of ethical guidelines on issues of withdrawing and withholding, artificial nutrition and hydration, use of pain relief, use of paralytics, issues in brain death, and the dead donor rule. Analysis revealed serious concerns of conscience about providing overly burdensome care and a lack of knowledge of some of these ethical principles. They demonstrated some differences among subspecialty nurses and physicians and trainees in these areas that serve as a call for continued ethics education in these areas. Importantly, these areas continue to be some of the most clinically controversial areas that physicians trained in palliative care can now support.
Healthcare Ethics Consultation has recently been formalized as a skill with a certification exam and explicit core competencies. The leadup to this recognition was informed for reflective self-study by clinical ethicists who sought to characterize the work of clinical ethics consultation beyond normative exploration of its value in modern healthcare settings. We wanted to highlight empirical scholarship in healthcare ethics consultation because we think that empirical research on clinical ethics as a health service is one of the key areas for growth in our field. Jennifer Kesselheim and colleagues surveyed ethics leaders at 46 freestanding children’s hospitals (with a great response rate!) and provided a rich characterization of pediatric clinical ethics consultation services, demonstrating that hospital ethics consultation services were under-resourced and led by informally trained consultants who nonetheless generally adhered to existing standards for healthcare ethics consultation. Robust survey research methods informed by expertise in a topic area that was increasingly important as medical care in children’s hospitals was becoming more technologically complex fit very well into the portfolio of other work published in Pediatrics in the same era.
As residency programs evolve, ethics and professionalism has been included as an area for which the ACGME requires structured curriculum. This article surveyed residency program directors in pediatrics about this area of need. Programs vary widely on whether ethics was taught as an organized curriculum or integrated, with most responding that they had <10 hours per year dedicated to ethics and professionalism. The importance of these data and the empirical work described above demonstrate a need for those in bioethics to continue to be advocates for education and empirical evaluation.
These 5 papers represent only a sample of the development of the rich literature on bioethics that has been supported by Pediatrics. As leaders of the COB and SOB, we encourage others to explore further the many policies, clinical reports, and technical reports from the AAP, as well as the growing empirical research in clinical ethics. We also encourage those involved in bioethics to continue to push education curriculum and research.
References
- Beecher HK. Ethics and clinical research. N Engl J Med. 1966;274(24):1354-1360
- Scher S KK. The rise of bioethics: a historical overview. In: Rethinking Health Care Ethics. Palgrave Pivot; 2018
- Silverman WA. Informed consent. Pediatrics. 1966;38(3):373-374
- Bartholome WG. Informed consent, parental permission, and assent in pediatric practice. Pediatrics. 1995;96(5):981-982
- Committee on Bioethics. Informed consent, parental permission, and assent in pediatric practice. Pediatrics. 1995;95(2):314-317
- Solomon MZ, Sellers DE, Heller KS, et al. New and lingering controversies in pediatric end-of-life care. Pediatrics. 2005;116(4):872-883
- Kesselheim JC, Johnson J, Joffe S. Ethics consultation in children's hospitals: results from a survey of pediatric clinical ethicists. Pediatrics. 2010;125(4):742-746
- Lang CW, Smith PJ, Ross LF. Ethics and professionalism in the pediatric curriculum: a survey of pediatric program directors. Pediatrics. 2009;124(4):1143-1151
