Concerns about ethics in the care of children have been central to modern bioethics since its inception over 50 years ago. Key milestones in pediatric bioethics include the controversy over the Willowbrook hepatitis experiments in the 1960s, acknowledgment of the importance of “assent” for children participating in research by the National Commission in the 1970s, and the Baby Doe regulations regarding the treatment of neonates in the 1980s. Despite the prominence of pediatric cases and issues, development of bioethical reasoning during the first 30 years was heavily focused on issues surrounding adults with decisional capacity and the principle of respect for autonomy. In fact, most of the groundbreaking judicial opinions about end-of-life decisions prior to the year 2000 focused on protecting the rights of adults to make autonomous decisions about their own medical care (Menikoff, 2002).

Case narrative

A pediatric resident is seeing a 4-month-old female who is post-op from pyloric stenosis repair. The child presents with a high fever and no obvious signs of infection. Because of her post-op status, the general surgery resident is seeing the patient along with the pediatric resident in the emergency department. Both of the residents believe the child needs to have a catheterized urine specimen collected, but have been unsuccessful at performing the procedure because the child has labial adhesions. As both residents stand over the child, the surgical resident looks at the pediatric resident and says, “We need the urine sample, and there is an easy way to fix this.” He grasps the labia and pulls them apart, leaving a raw, bleeding labial surface. He then walks out of the room. When the pediatric resident asks her attending physician for advice, she is told to make no mention of the event in the chart and to say nothing to the family.

Introduction

Responding to other physicians whose behavior or clinical practice appears incompetent or unethical presents many difficult challenges. Many physicians feel some duty of loyalty to their peers. Minimally, this duty requires that physicians not take action that may harm a colleague’s career unless there is sufficient evidence to justify that action. At the same time, clinicians have an independent obligation to protect patients who may be receiving substandard care.

Case narrative

A 4-month-old boy is brought in by his mother for his well-child check. The child’s health care provider asks how he has been since his 2-month check-up, and his mother says he’s been generally healthy. Since the mother had been a little hesitant in agreeing to have him receive his 2-month immunizations, the provider makes sure to also ask her how things went with the immunizations after the last visit. “Terrible,” she says, “he cried for about 4 hours straight, and this is a baby who doesn’t cry. Then he was fussy for 18 to 24 hours. I am thinking it is better for him to get one shot from now on instead of three.” The provider discusses the common side effects of immunizations and reassures the mother that the self-limited symptoms her son experienced were nothing serious. She is not convinced and states that she doesn’t want to take the chance that he will have a similar experience. The boy’s physical exam is unremarkable and he appears to be happy, healthy, and thriving. The provider tries to have a further discussion with the mother about the benefits of timely immunization for her son, yet he is met with continued resistance. “I don’t want to do any vaccinations,” she says with decisiveness. “None?” the provider says somewhat surprised, since he thought she felt that one shot was acceptable. “I don’t want to take any chances,” the boy’s mother replies. The provider decides to drop the issue, and asks her to return for the 6-month visit or earlier if it’s convenient for her. She agrees, but the provider leaves the room feeling defeated.

Introduction

Provider discussions with parents who are hesitant about childhood immunizations are difficult conversations. Consequently, they do not always go well (Bryant et al., 2009). Parents report difficulty in openly discussing their concerns about vaccines with their child’s provider and feeling alienated when vaccines are discussed. Providers often provide little information to parents about immunizations, rarely validate parental concerns, and discredit parental sources of immunization information. Too much information and a lack of time, resources, and knowledge constrain a provider’s ability to effectively communicate with concerned parents during health supervision visits.

Case narrative

A city police league asked a children’s hospital pediatrician to provide ringside medical supervision at a community amateur youth boxing event for at-risk urban boys. Amateur youth boxing is a legal sport performed in a controlled fashion with protective headgear. A licensed provider is required at the ringside in order for all boxing events to occur. The ringside physician provides pre-match assessments of the participants, monitors the boxing bouts, and has the authority to stop matches if they decide that doing so is in the participants’ best interests. The ringside physician may also prevent an individual from participating in future matches because of injury, illegal hits, or poor sportsmanship if deemed necessary. Neither professional boxing nor amateur martial arts events give such wide discretion to the ringside physician. Unlike professional boxing, the goal in amateur boxing is to score points rather than to “knock someone out.” The police league’s at-risk youth program upholds values such as diversity, equal opportunity, and self-confidence.

In the past, this pediatrician has provided assistance at other youth events sponsored by the police league, including football and soccer games. While checking her malpractice coverage to participate, she found herself mired in a larger controversy when several staff in her department expressed vehement opposition to her participation. The pediatrician’s colleagues cited the American Academy of Pediatrics (AAP) policy statement “vigorously opposing” youth boxing (Committee on Sports Medicine and Fitness, 1997). The AAP policy does not directly mention ringside assistance; however, the physician’s colleagues felt that participating in this program was inconsistent with the hospital’s commitment to injury prevention and programs designed to reduce concussions. Some individuals opined that boxing was nothing more than a “brutal sport” masquerading as “legalized violence,” and that the sport did not promote a healthy lifestyle.

Preface

Douglas S. Diekema, Mark R. Mercurio, and Mary B. Adam

This is a book for individuals who struggle with the ethical issues that inevitably arise when providing medical care to children. The contributing authors possess expertise in clinical ethics and experience in the clinical world. Most of the authors are clinicians, intimately familiar with the issues they discuss in their chapters. Those who are not clinicians serve as ethics consultants in clinical settings. All of the authors have struggled with difficult ethical situations involving children.

The three of us have been teaching clinical ethics to undergraduates, medical students, and residents for a combined total of over 50 years. Because our clinical practice is pediatrics, most of our teaching involves clinical ethics as it relates to the care of children and their families. Twenty years ago, one of us (DSD) developed a structured curriculum for teaching clinical ethics to the pediatric residents at Seattle Children’s Hospital. A description of that curriculum was published in Archives of Pediatrics and Adolescent Medicine in 1997 (Diekema & Shugerman, 1997). That article generated significant interest, including pleas from residency programs around the country for resources to help teach the topics outlined in that paper. At the same time physicians and trainees frequently ask whether we can recommend a book that provides a good overview of pediatric ethics. But while there are some terrific books that deal with specific areas within the field (research ethics, neonatal ethics, decision-making on behalf of children), we find ourselves at a loss in identifying a volume that provides a comprehensive overview of the rich array of issues faced by those who care for children in the medical context. This volume is an attempt to provide such a resource.

Case narrative

A 3-year-old child is brought to the emergency department by his parents who have concerns about a head injury. The day before, the child had been playing on the monkey bars when he fell about 4 feet and hit his head on the ground. He did not lose consciousness, and after about 15 minutes of crying, appeared to be fine. Today, however, he has been complaining that his head hurts and has been vomiting. He has vomited three times since arriving in the emergency department and continues to complain of a headache. The emergency department physician tells the parents that he is concerned about the possibility of intracranial bleeding and feels a CT scan of the head is essential to make a timely diagnosis and intervene if necessary. The parents are convinced that previous X-rays gave their son some learning problems, and refuse to consent to the CT scan.

Introduction

Responding to a parent who has refused a recommended diagnostic study or treatment modality presents a difficult challenge for clinicians. Clinicians must balance their assessment of the child’s well-being with respect for the parent’s wishes and legal rights. What are the limitations on a parent’s right to refuse diagnostic testing or treatment for a child? How does a clinician resolve conflicts between the parent’s values and his or her own as a medical professional? At what point should a clinician consider interfering with a parental decision to ignore the clinician’s recommended course of diagnosis and/or treatment? What are the steps a clinician must take in order to justify involving state agencies to compel testing or treatment over parental objections?