Ethics for the Pediatrician

Objectives

After completing this article, readers should be able to:

1. Identify the goals of bioethics education.

2. Describe and contrast “tragic” versus “everyday” cases in bioethics education.

3. Distinguish moral confusion, moral distress, and moral sadness when identifying an ethical dilemma.

4. Explain two common methods of ethical analysis.

5. Describe several bioethics resources available to clinicians.

Case

A pediatric resident is seeing a 6-month-old patient whose parents continue to refuse all immunizations. The resident has tried to address this refusal at each of the last two visits by acknowledging their concerns and trying to build trust, but the parents are still refusing. When the resident precepts this patient with you, she begins by saying: “I don’t know if I can take care of this patient anymore.”

When pediatricians think of bioethics, many of us likely recall dramatic, headline-generating cases we have encountered during our training and practice. Although such cases certainly fall into the realm of bioethics, they constitute only a small fraction of the bioethical issues that arise in pediatric medicine. Unfortunately, bioethics education for medical students and residents has tended to focus on these “tragic” or “crisis” cases. (1) Although there is value in using these cases, such as citing the extreme example to extract the issues that apply broadly, this approach to ethics education nevertheless often neglects the day-to-day ethical issues that permeate primary care medical practice. Liaschenko et al (1) argue that a tragic case method for teaching ethics does not adequately prepare trainees to approach the majority of the ethical questions they will encounter, nor does it encourage trainees to reflect on what their own roles and responsibilities would be in ethically challenging situations. (1) Students and residents need the opportunity to explore their role as a moral agent, someone who is not just an observer but an active participant in a case with ethical dimensions.

Everyday Ethics

Ethics education based upon clinical cases that are familiar and frequent helps trainees to place themselves within an ethical dilemma in which they have an opportunity to consider how they will respond when they encounter a similar situation. Such an approach engages the learner as an active participant by focusing on some of the relationships and roles they encounter in medicine, as provider, learner, teacher, colleague, and friend. The case above is a good example of an “everyday” primary care encounter with inherent ethical issues; for example, (a) at what point, if ever, might it be ethically justifiable to intervene against a parent’s wishes to decline immunizations in order to protect the child’s and the public’s health? And (b) does a parent’s continued refusal of childhood immunization ever justify discharging the family from your practice? Such a case offers a ripe opportunity for ethics education. In fact, Moon et al (2) found five common ethical challenges encountered by pediatric residents in the outpatient setting: “promoting the child’s best interests in complex and resource-poor home and social settings, managing the therapeutic alliance with parents and caregivers, protecting patient privacy and confidentiality, balancing the dual roles of learner and health care provider, and using professional authority appropriately.” (2)

The frequency with which these ethical issues arise in the daily practice of medicine demands our attention and ability to address them, even if just through an informal conversation. Kesselheim et al (3) studied graduates of pediatric and medicine/pediatric residencies and found that more than 80% revealed that informal ethics discussions with attendings and resident colleagues had a significant impact on their ethics education during residency. Unstructured conversations about ethical issues when they occur may have a large and positive impact.

Bioethics Curricula

Formal teaching should remain an important part of ethics education. The Accreditation Council for Graduate Medical Education, for instance, requires that pediatric residency programs include a structured curriculum in bioethics and that graduating residents demonstrate “a commitment to carrying out professional responsibilities and an adherence to ethical principles.” (4) Although the Accreditation Council for Graduate Medical Education requires a curriculum in bioethics, they do not further delineate what it must include. The approach to bioethics education thus is widely varied among programs, and several examples of pediatric bioethics curricula are available in the literature. (5)(6)(7) However, the curriculum goals should be similar and include improving a learners’ ability to recognize the values that underlie moral beliefs, developing skills to identify and assess the ethical considerations in complex clinical situations, broadening perspective and increasing understanding of differing viewpoints, and increasing a learner’s capacity to deal with situations that challenge moral integrity. (6)

When designing a structured ethics curriculum, one way to ensure that teaching cases represent situations to which trainees can relate is to ask residents to generate the cases that will be used for discussion and education. When pediatric residents were asked whether they preferred an ethics curriculum based on resident-generated cases or instructor-generated cases, approximately one third preferred resident-generated cases, but the majority believed that a curriculum based on a mix of the two types of cases was ideal. (5)

More residents reported that resident-generated cases facilitated better learning, stimulated more interest and engagement, and provided the opportunity to apply what they had learned immediately. Overall, formal teaching conferences have been found to have a moderate effect. Approximately one half of recent pediatric residency graduates reported that formal ethics teaching during their residency had a moderate or major effect on their ethics education.

Teaching Ethics

For pediatric clinicians without advanced training in bioethics, the idea of facilitating discussion around ethics cases can be intimidating, especially in informal settings or with resident-generated cases when there may not be opportunity for advance preparation. However, it is important to remember that we all have experience being moral agents and navigating the ethical dimensions of medicine. Drawing upon our experiences with past ethical issues offers a good starting point for initiating a discussion about a current ethical dilemma. In addition, attention to the following three elements can help augment any bioethics teaching experience: (a) identifying the ethical dilemma; (b) describing methods of ethical analysis; and (c) acquiring knowledge of additional bioethics resources.

Identifying the Ethical Dilemma

Before understanding and resolving an ethical dilemma, it is necessary to identify clearly the relevant moral issues involved. This step requires sensitivity to the moral dimension of medicine and is a fundamental aspect of bioethics education. (6) Often, this analysis takes the form of a critical examination of one’s “gut feelings” or instincts to reveal the assumptions, values, and moral beliefs underlying the situation. This examination also can yield an understanding of the type of issue being faced and what type of response is required. For instance, is this a situation in which there is uncertainty about what is the right thing to do? If so, the uncertainty constitutes moral confusion and requires an ethical analysis.

Alternatively, it may be the case that the right thing to do is known but cannot be done. This situation can result in moral distress and necessitates the use of a systems perspective to understand and reduce constraints to acting ethically. (8) Finally, it may be that this examination reveals grief and frustration from being part of a morally tragic situation. A debriefing with the clinicians involved and a review of where things broke down can help address this moral sadness (S. Shannon, RN, PhD, personal communication, 2011). Although moral confusion and the ethical analysis it requires is the focus of this article, these other types of moral issues deserve equal attention.

The next step after identifying the ethical dilemma is to gather the facts. A prerequisite to any worthy deliberation about ethically justifiable options in an ethical dilemma is gathering and summarizing information from the appropriate sources, such as the patient or surrogate, the patient’s medical record, the published literature, case law, and ethics codes or guidelines. Good ethics begin with good facts; without accurate information, moral deliberation is constrained and can be flawed.

Methods of Analysis

Ethical analyses can be performed by using several different methodologies. Each analytic method has inherent strengths and limitations and all have value. Therefore, no one methodology is considered the preferred approach. However, it may be helpful to familiarize oneself with one methodology that seems most intuitive and then apply it consistently. The following provides a brief overview of two commonly used analytic methods used in ethics.

Principlism

Developed by Tom Beauchamp and James Childress (9), principlism refers to an ethical analysis that involves the application of four principles. These principles form the core of the ethical practice of medicine and include respect for autonomy, nonmaleficence, beneficence, and justice. The principles serve as a guide to moral decision making but often require further specification (range and scope) and balancing (relative strengths) when confronting a specific moral issue. The four principles offer a basic framework but demand additional judgment to determine how we ought to act.

By using a principlism-based approach, the case presented at the start of this article could be framed initially as how to balance the tension between autonomy and beneficence. Further specification and balancing can help explore this tension: should parental autonomy always be respected? If so, why? If not, why not? What factors might be important to the decision to prioritize the protection of the child’s and the public’s health over parental autonomy? The principle of justice is relevant to this case also; is it fair for parents who opt out of childhood immunizations to reap many of their benefits (through herd immunity) without assuming any of their risks? Is it fair to make the decision to fire parents for refusing immunizations at the individual provider or practice level, or should this decision be made at a policy or societal level?

Casuistry

Casuistry has a rich tradition in religion and the law and generally refers to case-based reasoning. (10) Essential to determining the right course of action in a medical ethical dilemma by using a casuistic approach is the set of circumstances involved in the specific case of interest. Because cases will vary based upon their specific features, determinations of the ethically justifiable action may vary also. Jonsen et al (11) offer a casuist approach to resolving ethical dilemmas by using their four topics technique. After identifying the particular features of the case grouped into four topics (medical considerations, patient preferences, quality of life, and contextual features), the case’s ethical issues become more recognizable, can be compared with other paradigmatic cases with similar features, and can be linked to ethical principles to help determine a justifiable course of action.

A casuistic approach to our case of immunization refusal might begin with clarifying questions: What are the risks to a 6-month-old child (and the child’s community) of being unimmunized? What are the risks to the doctor–parent relationship of initiating efforts to intervene against the parents’ wishes (such as by contacting child protective services)? What are the risks and benefits to firing the parent and child from one’s practice? What is the parents’ belief system and how is this affecting their decision making? Are there religious or cultural factors involved? Subsequently, it would be helpful to place this case of parental refusal of a recommended treatment within the context of other similar, oft-deliberated cases, such as parental refusal of a life-saving blood transfusion. How is this case similar to and different from other such paradigmatic cases? Do their different features demand different recommendations? If so, why?

Bioethics Resources

An increasing number of bioethics resources are available to clinicians. One important resource is clinical ethics consultation (CEC). CEC is a service similar in process to other clinical specialty consultations. Typically, CEC involves an individual (or group of individuals, such as an ethics committee) who has expertise in ethical analysis and who provides recommendations to clinicians regarding the ethically justifiable course of action in the setting of a clinical moral dilemma. The goal of CEC is to improve the quality of care by helping to resolve clinical ethical issues. CEC has become more established and prevalent over the last 30 years, with most hospitals in the United States now offering this service. (12)

There are also a number of print and Web-based bioethics resources. The Ethics for the Pediatrician series in this journal that includes this article is an excellent resource for pediatric ethical issues. See the below “Additional Resources” sidebar for more information.

Summary.

• Ethics education based upon everyday ethical dilemmas can help trainees place themselves within the situation and encourage them to reflect on their role and responsibility in reaching its resolution.

• Three elements can help augment the bioethics teaching experience: (a) identifying the ethical dilemma, (b) employing methods of ethical analysis, and (c) having knowledge of additional bioethics resources.

• An increasing number of bioethics resources are available to clinicians, including clinical ethics consultation (CEC) and print and Web-based resources.