Volume 22, Number 3
September 2015
Introduction
T
he March 2002 issue of Seminars in Pediatric Neurology was devoted to bioethics. As indicated by Dr Shevell at that time, “ethics” concerns itself with doing the “right thing.”1 And yet, identifying the “right thing” or the “right course of action” can, in many instances, be challenging if nothing else because morality is constantly evolving. This issue is especially germane to pediatrics for at least 2 reasons: (1) patients are directly affected by decisions made by adults and (2) by the nature of the discipline, we deal with a population that spans birth to adulthood. For this issue of Seminars in Pediatric Neurology, I purposely invited a group of contributors to address different facets of bioethics. Ms Allyson Brown and Dr Jonna D. Clark's contribution is a tribute to Hannah, Ms Brown's daughter, who lived just over a year. Their article is both a celebration of the girl's life and a reminder of the importance of narrative ethics.2 The article by Drs Lisa Humphrey and Mary Lynn Dell3 addresses the challenges faced when adults are treated at pediatric hospitals; all of a sudden, autonomy and informed consent take on a different meaning. In Dr Leslie M. Whetstine's4 contribution, she asks and answers a modern-day medical question: Is it ethical to use nonessential medical treatments to afford advantages to healthy patients? Dr Yoram Unguru5 writes a thoughtful piece on a topic with which he wrestles on a daily basis: the participation of children as research subjects in phase 1 clinical trials. Drs Matthew P. Kirschen and Jennifer K. Walter's article6 reminds us that, in spite of all of its advances, medicine is forever an inexact science, and as such, our ability to make accurate predictions is faulty. Dr Peter Horn's7 article, as its title implies, serves as a reminder that bioethics is not part of the new age spirituality, its origins date to the beginning of civilization. Finally, I took advantage of this opportunity to present an
1071-9091/15/$ - see front matter & 2015 Published by Elsevier Inc. http://dx.doi.org/10.1016/j.spen.2015.08.001
ethical way to ration health care: the clinical effectiveness model. If one thinks of the Affordable Care Act as Microsoft Windows, the clinical effectiveness model is an App.8 I thank my colleagues, the authors, who were willing to share stories from their life, which, as indicated by Lantos, challenge us to think of the things that evoke in us complex thoughts and conflicting emotions.9 I would also like to thank Dr Agustín Legido for affording me the opportunity to serve as Guest Editor for this issue of Seminars in Pediatric Neurology. Finally, I want to thank the publisher of the journal, Ian Salusbury, and manager, Binni Ramakrishna, who patiently and diligently ensured the project moved forward. Pedro Weisleder MD, PhD Guest Editor
References 1. Shevell MI: Introduction. Semin Pediatr Neurol 9 2002 2. Brown A, Clark JD: A parent’s journey: Incorporating principles of palliative care into practice for children with chronic neurological diseases. Semin Pediatr Neurol 22:160-166, 2015 3. Humphrey L, Dell ML: Identifying the unique aspects of adolescent and young adult palliative care: A case study to propel programmatic changes in pediatric hospitals. Semin Pediatr Neurol 22:167-172, 2015 4. Whetstine LM: Cognitive enhancement: Treating or cheating? Semin Pediatr Neurol 22:173-177, 2015 5. Unguru Y: Ethical challenges in early-phase pediatric research for lifelimiting illness. Semin Pediatr Neurol 22:178-187, 2015 6. Kirschen MP, Walter JK: Ethical issues in neuroprognostication after severe pediatric brain injury. Semin Pediatr Neurol 22:188-196, 2015 7. Horn P: The philosophical basis of bioethics. Semin Pediatr Neurol 22:197-201, 2015 8. Weisleder P: Healthcare rationing in a just society: The clinical effectiveness model. Semin Pediatr Neurol 22:202-205, 2015 9. Lantos JD: What we talk about when we talk about ethics. Hastings Cent Rep 44:S40-S44, 2014
157
September 2015
Introduction
T
he March 2002 issue of Seminars in Pediatric Neurology was devoted to bioethics. As indicated by Dr Shevell at that time, “ethics” concerns itself with doing the “right thing.”1 And yet, identifying the “right thing” or the “right course of action” can, in many instances, be challenging if nothing else because morality is constantly evolving. This issue is especially germane to pediatrics for at least 2 reasons: (1) patients are directly affected by decisions made by adults and (2) by the nature of the discipline, we deal with a population that spans birth to adulthood. For this issue of Seminars in Pediatric Neurology, I purposely invited a group of contributors to address different facets of bioethics. Ms Allyson Brown and Dr Jonna D. Clark's contribution is a tribute to Hannah, Ms Brown's daughter, who lived just over a year. Their article is both a celebration of the girl's life and a reminder of the importance of narrative ethics.2 The article by Drs Lisa Humphrey and Mary Lynn Dell3 addresses the challenges faced when adults are treated at pediatric hospitals; all of a sudden, autonomy and informed consent take on a different meaning. In Dr Leslie M. Whetstine's4 contribution, she asks and answers a modern-day medical question: Is it ethical to use nonessential medical treatments to afford advantages to healthy patients? Dr Yoram Unguru5 writes a thoughtful piece on a topic with which he wrestles on a daily basis: the participation of children as research subjects in phase 1 clinical trials. Drs Matthew P. Kirschen and Jennifer K. Walter's article6 reminds us that, in spite of all of its advances, medicine is forever an inexact science, and as such, our ability to make accurate predictions is faulty. Dr Peter Horn's7 article, as its title implies, serves as a reminder that bioethics is not part of the new age spirituality, its origins date to the beginning of civilization. Finally, I took advantage of this opportunity to present an
1071-9091/15/$ - see front matter & 2015 Published by Elsevier Inc. http://dx.doi.org/10.1016/j.spen.2015.08.001
ethical way to ration health care: the clinical effectiveness model. If one thinks of the Affordable Care Act as Microsoft Windows, the clinical effectiveness model is an App.8 I thank my colleagues, the authors, who were willing to share stories from their life, which, as indicated by Lantos, challenge us to think of the things that evoke in us complex thoughts and conflicting emotions.9 I would also like to thank Dr Agustín Legido for affording me the opportunity to serve as Guest Editor for this issue of Seminars in Pediatric Neurology. Finally, I want to thank the publisher of the journal, Ian Salusbury, and manager, Binni Ramakrishna, who patiently and diligently ensured the project moved forward. Pedro Weisleder MD, PhD Guest Editor
References 1. Shevell MI: Introduction. Semin Pediatr Neurol 9 2002 2. Brown A, Clark JD: A parent’s journey: Incorporating principles of palliative care into practice for children with chronic neurological diseases. Semin Pediatr Neurol 22:160-166, 2015 3. Humphrey L, Dell ML: Identifying the unique aspects of adolescent and young adult palliative care: A case study to propel programmatic changes in pediatric hospitals. Semin Pediatr Neurol 22:167-172, 2015 4. Whetstine LM: Cognitive enhancement: Treating or cheating? Semin Pediatr Neurol 22:173-177, 2015 5. Unguru Y: Ethical challenges in early-phase pediatric research for lifelimiting illness. Semin Pediatr Neurol 22:178-187, 2015 6. Kirschen MP, Walter JK: Ethical issues in neuroprognostication after severe pediatric brain injury. Semin Pediatr Neurol 22:188-196, 2015 7. Horn P: The philosophical basis of bioethics. Semin Pediatr Neurol 22:197-201, 2015 8. Weisleder P: Healthcare rationing in a just society: The clinical effectiveness model. Semin Pediatr Neurol 22:202-205, 2015 9. Lantos JD: What we talk about when we talk about ethics. Hastings Cent Rep 44:S40-S44, 2014
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