Editors' Introduction to the Special Issue on Ethics

We are very excited to bring you this special issue of ACLP Bulletin, focusing on ethics in the profession of child life. This issue addresses an extensive variety of topics that impact child life professionals at all phases of their careers. Please note that the study and application of ethical principals may be defined in a number of different ways by various authors, and no one particular overview is universally accepted as the only correct or acceptable description of ethics. For example, some ethical theorists assign three major components to ethics, some list four, and some include even more. We hope you will appreciate the diversity of approaches to this topic as presented by our various authors.

Ethical decision making is complex and multifaceted. Ethical principles can often come into direct conflict with each other, presenting unique challenges for healthcare clinicians. When supporting children, families, and colleagues during the hospital experience, it is imperative that all child life professionals understand the basic principles of ethics and how to apply them, not only to significant decisions, but also to daily healthcare scenarios.

An introduction to ethical principles includes identifying the four fundamental principles of autonomy, beneficence, non-maleficence, and justice. In addition to these principles, the concept of veracity and fidelity are integral components to providing balanced delivery of care. The following scenarios will demonstrate each of these principles, how they interact with each other, and how ethically-motivated clinicians can utilize these concepts to distribute clinical intervention, promote resilience in patients and families, and engage in practices to develop healthy professional relationships and work balance.

The principle of autonomy focuses on the concept of respect for persons. With regards to children, this includes evaluating developmental capacity for assent, creating an environment that supports realistic and consistent choices, and facilitating a balance between the child’s preferences and those of the parents, guardians, and caregivers. Regardless of age and developmental capacity, children should be active participants in their healthcare experience, and the child life specialist can promote this participation through careful assessment and creative intervention.

When engaging in the delivery of healthcare interventions, each goal contains a component of beneficence: the promotion of good. While there are differing approaches to the philosophy of this concept, ultimately the intention of a child’s plan of care is to maintain or improve the current state from a physical, physiological, psychosocial, emotional, and spiritual perspective.

The quintessential tenant of the Hippocratic Oath is “First, do no harm.” Non-maleficence is the proactive identification of potential harm and active mitigation of this harm. Due to the invasive nature of healthcare intervention, elimination of all harm is impossible. For example, life-saving medications and fluids are delivered by a process of venous puncture, which inevitably causes physical pain and the potential for emotional distress related to the child’s perception of the procedure. This process is considered a “harm.” To proactively decrease the negative impact of such an intervention, a child life specialist can prepare a child for the impact of an IV placement through developmentally-sensitive preparation and active engagement during and after the procedure to assess physical pain and emotional distress.

The concept of justice in healthcare includes not only the provision of services but also the manner in which each service is provided, including the frequency and intensity of each intervention. Child life support is a valuable resource which is limited by external factors, including the balance between the availability of clinicians and the volume of patients in need. This ethical principle is demonstrated during each healthcare decision and creates the greatest opportunity for dissatisfaction for patients, their families, and providers. Each decision in the clinical treatment process leads to a situation of “have” and “have not.” When a child life specialist intervenes with one patient, another child may not receive service at that time. A clinical decision to triage one procedure over another creates a hardship for the physician or nurse left to conduct a treatment intervention without child life support.

These dichotomous situations lead to conflict between health- care professionals, caregivers, and patients, which elevates two secondary ethical principles of veracity and fidelity. Veracity explores the concept of truth telling within the healthcare context. Truth telling must occur in two realms to achieve ethical decision-making practices: truth telling related to self, and truth telling related to others. Healthcare professionals are mandated to provide patients and their caregivers with unbiased and complete information about their condition and treatment options. The ability for children to comprehend information about their healthcare experience is impacted by chronological age, developmental needs, emotional development, past healthcare experiences, and personal coping mechanisms. Each child’s qualities are intensified by their caregivers’ personal history and healthcare literacy. 

Objective truth telling is compounded by a clinician’s ability and willingness to engage in self truth telling. This includes a continuous process of self-evaluation of one’s clinical abilities and personal and professional values. A singular focus on objective truth telling with others can lead to a lack of awareness of how one’s own healthcare experience and balance of values influences the therapeutic relationship.

Engaging in the principle of veracity leads to the development of fidelity of relationships. When engaging in professional relationships, healthcare clinicians find commonalities in practice and processes and enter into partnership to care for patients and families. Simultaneously, clinicians develop rapport with these patients and families throughout the therapeutic process. The commitment to these relationships reflects the principle of fidelity because ethically motivated clinicians will want to honor implicit and explicit promises made to all individuals engaged in the relationship. As with the previous ethical principles, clinicians may experience conflict when competing needs arise in professional relationships. At any given time, the need of a nurse for procedural support during a challenging acute intervention for one patient may be in direct conflict with the need for extended medical play and exploration of a different patient with a chronic condition prior to an impending surgical intervention. Additionally, clinicians may pose differing opinions about the best course of treatment for a patient, creating potential conflict among team members and between the family and the healthcare team. 

When this conflict arises, child life specialists may find themselves deliberating between these two sets of relationships as they also explore the concept of truth telling between colleagues and between the family and professional team. While the concept of paternalistic medicine has been predominantly replaced by family-centered care in pediatric hospitals, healthcare teams may inadvertently or purposefully withhold information about treatment options if they hold strong opinions about the validity or feasibility of a specific option. Likewise, families may choose to withhold information from a child regarding his or her treatment process out of fear of reaction from the child. The child life specialist will naturally engage in a process of sorting out the complexities of maintaining a stance of truth telling while meeting the unique needs of each clinical and therapeutic relationship.

As child life professionals explore these ethical principles and how they relate to their current service delivery, they will benefit from opportunities to practice these concepts prior to making acute decisions. Some methods of practice include debriefing significant cases with a peer or supervisor, actively reviewing professional decisions, and writing a descriptive response weighing the values and limitations of a specific chosen course of action. In order to honor the relationships one develops with clinicians, families, and patients, child life specialists may benefit from completing a personal values assessment or character strengths assessment (see online resources, below). The results of this type of questionnaire will help clinicians identify potential blind spots or personal triggers that may preclude objective delivery of information, services, and compassionate care. Clinicians can also review their own code and guidelines for professional conduct and ethical codes from related clinical fields to gain deeper understanding of how they are expected to respond to challenging situations and how others may be interpreting a specific situation. Finally, most hospital systems provide at least a basic ethics consultation service, and their professionals are specially trained to engage their colleagues in conversations to explore these ethical concepts with the goal of providing holistic patient care.

The evaluation of child life service delivery from an ethical framework will not create simple answers or concrete justifications for decisions. Instead, this framework provides a tool for clinicians to develop methods to evaluate the complex and competing needs of children, their families, and other healthcare professionals when decisions need to be made quickly in a high-intensity environment with significant emotional, physical, and spiritual implications.

---

Acknowledgment: This author receives ongoing mentorship and support from the Charles Warren Fairbanks Center for Medical Ethics in Indianapolis, Indiana.