In most children’s hospitals, there are very few ethics consultations, even though there are many ethically complex cases. We hypothesize that the reason for this may be that hospitals develop different mechanisms to address ethical issues and that many of these mechanisms are closer in spirit to the goals of the pioneers of clinical ethics than is the mechanism of a formal ethics consultation. To show how this is true, we first review the history of collaboration between philosophers and physicians (...) about clinical dilemmas. Then, as a case-study, we describe the different venues that have developed at one children’s hospital to address ethical issues. At our hospital, there are nine different venues in which ethical issues are regularly and explicitly addressed. They are ethics committee meetings, Nursing Ethics Forum, ethics Brown Bag workshops, PICU ethics rounds, Grand Rounds, NICU Comprehensive Care Rounds, Palliative Care Team case conferences, multidisciplinary consults in Fetal Health Center, and ethics consultations. In our hospital, ethics consults account for only a tiny percentage of ethics discussions. We suspect that most hospitals have multiple and varied venues for ethics discussions. We hope this case study will stimulate research in other hospitals analyzing the various ways in which ethicists and ethics committees can build an ethical environment in hospitals. Such research might suggest that ethicists need to develop a different set of “core competencies” than the ones that are needed to do ethics consultations. Instead, they should focus on their skills in creating multiple “moral spaces” in which regular and ongoing discussion of ethical issues would take place. A successful ethicist would empower everyone in the hospital to speak up about the values that they believe are central to respectful, collaborative practice and patient care. Such a role is closer to what the first hospital philosophers set out to do than in the role of the typical hospital ethics consultant today. (shrink)

The healthcare ethics consultant holds a widely described role in the modern American hospital. S/he may practice within a clinical discipline and be trained in bioethics, or be a trained phi...

Counseling parents on the cusp of delivering an extremely preterm infant is performed thousands of times every year in North America, Europe, Japan and in centers situated in other countries around...

Bioethical decision‐making in pediatrics diverges from similar decisions in other medical domains because the young child is not an autonomous decision‐maker, while the teen is developing—and should be encouraged to develop—autonomy and decisional capacity. Thus the balance between autonomy and beneficence is fundamentally different in pediatrics than in adult medicine. While ethical dilemmas that reflect these fundamental issues are common, many pediatric physician and nursing training programs do not delve into the issues or offer specific training about how to deal (...) with borderline cases.To meet this need, the Children's Mercy Bioethics Center in Kansas City, Missouri, created a program specifically dedicated to serving practicing, experienced pediatric health professionals. Our students come from various professional disciplines: they are doctors, nurses, social workers, chaplains, lawyers, psychologists, counselors, and hospital administrators practicing in pediatrics. (shrink)

Fetal medicine is an emerging field that raises unique ethical concerns. Our children’s hospital started a Fetal Health Center 10 years ago. In this specialized setting, a multidisciplinary t...

Pope Francis beautifully describes how the perinatal journey starts in mystery. Doctors may forget this. We focus on the science that may partially explain how conception and implantation occur, how the placenta functions, and the gradual development of embryo and fetus. But science cannot address that meta-physical—or spiritual—reality. The question of “why?” is never too far away from the minds of expectant parents. Why now? Why me? Why did my baby develop these terrible problems? Why is my life being challenged (...) in this way? Maternal-fetal “cross-talk” is a reality that cannot be denied. It occurs both when the fetus is quiet and when the fetus is active. It may be facilitated by fetal imaging—an ultrasound of... (shrink)

ArgumentsPhysicians who counsel expectant parents about the needs for resuscitation and intensive care for an extremely preterm infant must be able to address many clinical facts and be prepared to face several ethical considerations. Such counseling is generally more than an acquisition of informed consent. It must be guided by ethical principles, values held dear by parents, relational priorities and directed toward an informed and shared decision-making process. Parents may come with a need for clinical facts, a desire that they (...) be heard as they express their values, and to help physicians realize that many are determined to follow a certain path well before such counseling occurs. They may well not be moved by counseling of the physician but still desire to be heard, respected, and allowed to contribute to their newborn’s care plans.ConclusionsRealizing this, the physician can be accepting and develop a trusting relationship with the parents that will be of value throughout the hospitalization regardless of outcome. (shrink)

For a minority of children managed in the NICU, there is a need for more complex technologic assistance in order to sustain life, mitigate a more chronic debilitation from a pervasive life-limiting condition, or provide a bridge from life-sustaining therapy to a more semi-permanent treatment such as organ transplantation. This chapter will address two major types of technology assistance for infants and children—tracheostomy and assisted home ventilation, and dialysis—and the myriad complications and considerations that they raise. Some attention to why (...) clinicians may be so inclined to impose technology as a solution to life-limiting conditions will be noted, as well as why some parents may seem to insist on pursuing technology. (shrink)

The Spring 1999 issue of CambridgeQuarterly adds to the growing body of academic inquiry into the goals of neonatal intensive care practices. Muraskas and colleagues thoughtfully presented the possibility of nontreatment for neonates born at or under 24 weeks gestation. Jain, Thomasma, and Ragas explained that quality of future life must not be ignored in clinical deliberation. And Hefferman and Heilig described once again the dilemmas nurses face when caring for potentially devastated neonates kept alive by technology. These authors take (...) brave steps by publicly questioning the trend of intensive medical support for most every American-born product of conception. But many questions addressing the goals of neonatal intensive care remain, and few authors have actually tried to distill these goals. (shrink)