9 Relationships with Children and Ensuring Their Voices in Decision-Making

Karen Ron-Li Liaw, Becky Lois, Julia McBee, and Erin Collins

Child Development: Considerations for Engagement and Communication

Diagnostic disclosure to children matters because it improves overall understanding and cooperation with procedures as well as adherence to treatment.¹ Furthermore, disclosure may decrease uncertainty, improve quality of life, and set the course for active participation and advocacy in care decisions.¹ However, when engaging children in medical decision-making, consideration should be paid to several important factors: developmental level, cognitive and language development, and emotional development and capacity for coping.

Developmental Level

Children’s understanding of illness and death changes as they progress through normal developmental stages, moving from concrete understanding to grasping more abstract, nuanced ideas. Children under the age of 5 experience distress when separated from primary caregivers; the concept of separation is an important first step in the eventual understanding of death as a permanent form of separation. By the age of 5, children can understand that death is final and irreversible.² Later stages involve an awareness that death can apply to oneself and that death can be unpredictable. Research and clinical consensus indicate that by the age of 9, children can fully comprehend the complex nature and idea of death.¹

Understanding of what causes illness is also related to developmental level, as children between the ages of 4 and 7 may rely on magical thinking (e.g., my thoughts or wishes can “cause” illness in myself or others) and subsequently develop a sense of guilt or blame. This type of thinking leads to a misunderstanding of how illness is spread and requires clarification and developmentally appropriate, concrete teaching on the part of the treatment team to ensure that information about diagnosis and treatment is appropriately conveyed. Children become more capable of understanding key biological concepts and utilizing reasoning skills as they age. For instance, children between the ages of 7 and 11 can understand changes related to their illness, like weight gain or hair loss, as these changes are easily observable and tangible. Over time, more abstract concepts (e.g., the effect of chemotherapy on my internal system; how my medication works inside my body to help me, the long-term side effects of my medication regimen) can be understood.³ Last, while these age “norms” may be true for children in general, seriously ill children often demonstrate understanding of the concepts of illness and death at a much earlier time.

The ability to understand proposed medical treatment options and the choice at hand requires the interrelated skills of attention, orientation, intelligence, language, and memory to take in and integrate relevant information. The foundational brain architecture for these skills and neurocircuits are laid down during early childhood and mature from age 6–12 and then through adolescence and young adulthood.⁴ Similarly, the ability to logically reason and weigh risks, benefits, and consequences of treatment options develops between the ages of 8 to 11 and accelerates in accuracy, speed, and complexity during adolescence.⁴ Yet many adolescents still struggle to understand the long-term nature of decision-making and thus may make choices that can appear short-sighted or more focused on instant gratification or avoidance of significant consequences. The executive functioning system, which controls our ability to plan, self-regulate, multitask, and focus attention, is not fully developed until the mid-20s.⁵ Thus, the appreciation of the nature of a situation and personal relevance of the decision at hand requires abstract, higher order thinking, which develops through adolescence and at different rates and potential for different people even into adulthood.

Cognitive and Language Development

Regardless of developmental level, children’s ability to process information and communicate effectively about their emotions, concerns, and questions may vary and requires assessment. For instance, young children commonly engage in magical thinking (e.g., “I got cancer because I was bad”). To understand complex and at times confusing information and conversations, treatment teams need to engage children with concrete, clear language when discussing diagnosis, causes, physical symptoms, and physical consequences to the external body and internal systems.

It is crucial that the treatment team find innovative ways to communicate information that accommodates for and builds on children’s cognitive strengths and limitations. Consultation with the family as “experts” can be invaluable in understanding what works best when communicating with their child. Partnership with interdisciplinary psychosocial team members can also help ensure that communication is clear and that the child is processing the information correctly. Cognitive limitations, challenges, or differences are not an excuse to refrain from informing; rather, they should be assessed, understood, and factored in when engaging children’s voices in decision-making.

Emotional Development and Capacity for Coping

Emotional challenges may complicate processing and reception of information, regardless of clarity of content. Furthermore, patients may struggle to share their concerns in a clear or appropriate way due to a sense of overwhelming panic or distress. Emotionality that is externalized (e.g., crying, irritability, excessive anxiety) is often easiest to see and adjust for; however, an apparent lack of an emotional response does not necessarily indicate a lack of distress. Instead, these patients may be emotionally numb, withdrawn, or not fully aware of the significance of their prognosis or treatment plan. In these instances, the need to assess their emotional state and understanding of their medical status is extremely important.

Mental health issues frequently emerge during adolescence: 50% percent of adults who present with a mental health condition had that condition first emerge during adolescence.⁶ Assessment of emotional distress and normalization of the emotional challenges that seriously ill patients face are important in order to address these concerns head-on and manage their impact on quality-of-life, engagement in care, and adherence.

The team should check in with the patient and family about the child’s baseline level of coping and typical strategies that might be employed around any challenging or upsetting communication during treatment. Psychosocial team members (e.g., clinical social workers. child psychologists and psychiatrists, child life specialists) have expertise in conducting assessments that can aid the interdisciplinary team in understanding whether the level of coping in a patient is adequate, effective, or not adaptive to their current environment. Patients may benefit from creative strategies to come to terms with their current physical limitations while approximating their favorite activity. For example, a patient who typically goes for a run to reduce stress is not able to employ that strategy during a medical admission or during periods of physical deconditioning. Alternatives could include walking around the medical unit to “get the body moving” or listening to a favorite running music mix while engaging in guided imagery of running through the woods by their house.

Last, the coping of close and extended family should be included in any assessment. The family’s overall coping style and capabilities, as well as each individual’s, are important considerations.⁷ One person’s struggle can impact the coping of everyone in the family. Factors that may influence family coping include socioeconomic status and financial stressors, level of education and health literacy, degree of social support, and general emotional health and well-being. See Figure 9.1 for an illustration of these factors and how the medical team, children, and families may communicate with one another when children are faced with a life-threatening condition.¹ Of note, healthcare professional factors also have an influence on patient and family coping and will be discussed further later.

Children and Relationships

When a child is diagnosed with a life-threatening illness, it is important to consider the impact of their relationships with family and their medical team on medical decision-making. Parents may be anxious or fearful about sharing prognostic information with their child and may experience a strong urge to protect them from upsetting information. Medical teams can provide education to parents on how disclosure is associated with improved outcomes¹ and can reassure parents that interdisciplinary team supports can be in place to support the family through the disclosure process and beyond. Parents may be eager to serve as communicators to their children but may need coaching and education from the team to serve that role well. Furthermore, consideration should be paid to the multiple and complex roles that parents may play in the communication process: “facilitators of conversation; go-between for the child and the medical team; human database for all incoming information; buffer or filter for upsetting questions or updates; communication broker to repeat or clarify potentially confusing communication; confidante for the child’s private opinions or fears; ally to support expression of child preferences; and general emotional safety and support.”¹ Siblings can also play an important role, with literature indicating a preference for involvement in decision-making.^7,8 Last, friends, same-aged peers, and school staff benefit from communication and sharing of information because it can increase compassion and decrease the likelihood of future bullying of the ill child or anxiety about their own health.⁹

In addition to the child’s family, friends, and community members, the medical team undoubtedly plays a transactional role in a child’s and family’s engagement and partnership in medical decision making. Pediatric palliative care (PPC) may be delivered by a specialty PPC team or by the child’s primary medical team. The interdisciplinary PPC team is uniquely suited to work with families and children when discussing prognosis, medical decision-making, and end-of-life care. Early involvement in care alongside the primary team ensures time to build rapport, address goals, and provide support throughout the disease trajectory.

Clinicians’ beliefs about disclosure to children, anxiety about how to present difficult or upsetting information, management of their own distress as care providers, and challenges when children and their parents desire differing levels of information are only a few of the factors that can lead to complication. They may take comfort in knowing that families prefer open communication; families have rated trust, honesty, and empathy as the most important traits in their medical providers when their child has been diagnosed with a life-threatening condition.¹

Children’s Voices, Families, and Decision-Making: Ethical and Practical Considerations

Children’s decision-making capacity is a dynamic construct. How might we develop strategies and practices to best incorporate children’s voices, perspectives, and what matters most to them throughout the process of healthcare decision-making? How might we tailor our approach to engagement, information sharing, decisional scaffolding and coaching based on our understanding of human development and emerging, maturing capabilities?

The United Nations Convention on the Rights of the Child recognizes children’s rights to protection, the promotion of their well-being, and participation in matters that affect their lives.¹⁰ In 2001, the National Academy of Medicine defined patient-centered care as “care that is respectful of and responsive to individual patient preferences, needs, and values” and that ensures “that patient values guide all clinical decisions.”¹¹ International laws and guidelines emphasize the importance of respecting the evolving capabilities and autonomy of children. Bartholome stated, “the experience, perspective and power of children” in collaboration with pediatric interdisciplinary teams and families remains a foundational guide for pediatric care.¹² Decision-making science and practice continue to evolve in response to technology, discovery, and legal rulings.¹² However, an evidence base to guide best practices in engaging children, adolescents, and young adults and integrating their voices and values in healthcare decision-making is scarce.

The Clinician-Patient-Parent Relationship and Ethical Principles

The clinician-patient-parent triadic relationship is a unique aspect of pediatric care. This triadic relationship impacts the application of foundational, universally accepted principles of medical ethics: autonomy, beneficence, nonmaleficence, and justice. The principle of autonomy refers to an individual’s right to make decisions and act on them freely and without interference.¹³ A person has a right to control what is done to his or her body and to refuse treatment, and healthcare teams have an obligation to respect patient integrity and wishes. The term capacity refers to the “degree to which an individual has the ability to understand a proposed therapy or procedure, including its risks, benefits, and alternatives; to communicate relevant questions; and to arrive at a decision consistent with his or her values.”¹⁴ In general, children are not believed to have capacity to make significant medical decisions, such as undergoing surgery or starting medication. However, depending on developmental stage and the particular situation, children should be invited to participate in discussions about their health and care, “recognizing and respecting the child’s developing ability to participate and where appropriate, to assent.”¹⁴ Assent should be offered in situations when a child will truly have a choice in what is being proposed as all too often their opinion is solicited yet not followed. Assent includes the following components: helping patients achieve a developmentally appropriate awareness of the nature of his or her condition, what can be expected with tests or treatments, assessing understanding of the situation and influencing factors, and soliciting an expression of willingness to accept proposed care.¹²

The principle of beneficence refers to a healthcare team’s obligation to act in the patient’s best interest to maximize benefits and minimize burdens, such as pain and suffering. Within pediatrics, beneficence applies to both pediatric patients and their families. The principle of nonmaleficence holds that there is an obligation for healthcare teams to not inflict harm on others and is closely associated with the maxim primum non nocere (“first do no harm”). The principle of justice obligates us to equitably distribute healthcare-related benefits, risks, costs, and resources.¹³ Within PPC, there are circumstances when the principles of beneficence, nonmaleficence, and autonomy can come into conflict.

The provider-patient-parent triadic relationship means that surrogate decision-making is generally the rule in pediatrics. The role of surrogate decision-maker nearly always falls to parents (or legal guardians) based on an understanding of their right to speak for and determine what is done to their child. Parental decision-making is best understood as parents’ responsibility to support the interests and well-being of their child and preserve family relationships. ¹² In pediatric care, the best-interest standard is most commonly applied and refers to a surrogate’s aim to maximize benefits and minimize harms to the patient while using a holistic view of the patient’s interests. The words of Jen, mother of a child with leukodystrophy, portray the complexity of parental surrogate decision-making, with the overarching goal of optimizing a child’s quality of life.

Based on ethical theory and the law, the current concept of informed consent in medical practice consists of three duties: (1) providing information about the nature of the illness or condition, proposed diagnostic steps and/or treatments, and potential risks, benefits, uncertainties, and alternatives to patients and their surrogates; (2) assessment of understanding and capacity for medical decision-making, assuring time for questions by patient and surrogate; and (3) obtaining informed consent and ensuring voluntary agreement with the plan.¹² An individual must be deemed to have decision-making capacity to be able to provide informed consent for diagnostic assessments, interventions, and treatment.

Shared Decision-Making in Pediatric Care

Shared decision-making (SDM) is foundational to patient- and family-centered care and improves knowledge, experience, adherence, and, outcomes.^15,16 Within pediatric care, SDM has been defined as a process in which patients, families, and interdisciplinary healthcare teams “simultaneously participate in all phases of the decision-making process and together arrive at a treatment plan to be implemented.”¹⁶ The SDM process is particularly challenging in pediatric care given the dynamic, complex relationship triad that “encompasses the autonomy of the patient, legal authority of the parent, and beneficence,” the clinical expertise of the interdisciplinary team, and the evolving nature of these relationships as children grow and mature.¹⁷ Eliciting, navigating, and integrating the at times conflicting perspectives and priorities of the child, parent, and clinician can be difficult, especially when few established effective, practical frameworks, tools, and interventions exist to include children and family voices within medical decision-making. (See Chapter 16, “Resolving Conflicts,” for further discussion.)

A qualitative study on child and parental perspectives on communication and decision-making in pediatric chronic kidney disease (CKD) revealed four themes: (1) feeling disempowered by knowledge imbalance (unprepared and ill-informed, suspicion of censorship), (2) recognizing one’s own expertise (intuition and instinct unique to parental bond, emerging wisdom and confidence, identifying opportunities for control and inclusion, and empowering participation in children), (3) striving to assert one’s own priorities (negotiating broader life impacts, choosing to defer decisional burden, overprotected and overruled, and struggling to voice own preferences), and (4) managing child’s involvement (respecting child’s expertise, attributing “risky” behaviors to rebellion, and protecting children from illness burden) (see Figure 9.2).¹⁷

Fostering children’s involvement in decision-making encompasses sharing information about choices and their potential impact, eliciting their voices and priorities, respecting their experience and expertise, and supporting and scaffolding their incremental involvement in decision-making as they mature. Younger children wanted to be involved in their care and decisions, particularly when choices had the potential to constrain their social freedoms and participating in normal childhood activities.¹⁷ Adolescents and young adults had better clinical understanding and could take on more responsibilities, independence, and autonomy.¹⁷

There continues to be a lag in developing effective strategies and frameworks to elicit and integrate the child’s perspective in decision-making. Decision aids and coaching, which refers to individualized facilitated discussion to prepare the patient for upcoming decision-making, have had moderate effects in improving the decision process, alignment, and satisfaction regarding information shared about options.^18,19 Visual aids, role playing, and journaling, and online and mobile applications all show promise in better engaging children in expressing their preferences, reporting symptoms, describing their feelings, accessing decision supports, and sharing information with their parents and healthcare team.¹⁷ Snaman et al.²⁰ developed the MyPref tool for adolescents and young adult (AYA) patients with cancer to facilitate decision-making and optimize communication among stakeholders to ensure delivery of goal-concordant care. MyPref tool, which factors in treatment considerations, quality of life, symptoms and side effects, and survival, provides an opportunity for AYA patients and their parents/trusted persons to “clarify their preferences in an objective way and empowers them to actively participate in decision-making.” Children, adolescents, young adults, parents, families, and interdisciplinary healthcare teams must come together to design the next generation of innovative, effective SDM strategies, frameworks, and tools.

Families’ core values, beliefs, communication, relational dynamics, and other aspects of culture influence the decision-making process. Culture can be defined as “a dynamic, adaptive, ecologically based multilevel and multidimensional system for a population group that creates a social structure, which provides its members a set of beliefs, expectations, and tangible means to achieve a sense of safety, identity, and meaning of and for life.”²¹ Through an integrative review of palliative care literature, Cain et al. demonstrate how culture matters in the provision of high-quality palliative care in four areas: (1) preferences for care, (2) communication patterns, (3) meanings of suffering, and (4) decision-making processes.²¹ With respect to decision-making, differences arise across cultures in their orientation toward individualism or communalism and how individuals express or suppress their autonomy. US laws concerning decision-making prioritize autonomy as the most important principle. Yong’s clinical vignette highlights how cultural and family factors impact preferences, communication patterns, and decision-making.

Differences in decision-making processes and preferences are seen in the completion of formal advance directives. However, some families prefer to communicate their wishes verbally, are reluctant to discuss advance directives, and place their trust in caring relationships with clinicians. Religious and spiritual beliefs also affect decision-making through the belief that a higher power makes the ultimate decisions. Clinicians should be aware of implicit bias and become skilled in eliciting diverse beliefs, values, and having difficult conversations with an emphasis on humility and openness rather than on overgeneralizations and stereotypes.²¹ From a societal health disparities perspective, research indicates that racial and ethnic minorities are less likely than non-Hispanic whites to have access to quality care, including standard medical, experimental, and palliative care, and suffer higher morbidity and lower quality of life in comparison.^22,23

Yong’s story illustrates how medical decision-making is impacted by the critical role of culture, a child or adolescent’s emotional state, and the family system.

Related posts:

Quality in Pediatric Palliative Care Program Development The Language of Pediatric Palliative Care Practical Aspects of Palliative Care Communication Advanced Heart Disease Children’s Voices: The Experience of Patients and Their Siblings

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