DISCUSSION
In this single center cross-sectional survey, we found that the majority of pediatric pulmonologists believe that decision-making authority regarding pediatric lung transplantation rest with the parents rather than the child, irrespective of age and maturity level. There appeared to be a difference across the four scenarios with varying age and maturity level, but we could not fully determine the role that age and maturity played. When the parent and child disagreed, some physician respondents would try to convince parents to defer to the child, but a minority would try to convince the child to defer to the parents. The influences of age and maturity level warrant further inquiry. The respondents were divided on the utility of ethics and psychiatry consultations.
To our knowledge, this is one of the first studies exploring subspecialty physician attitudes towards involving children with chronic lung disease in decision-making in the United States. This is an important and understudied area. The lack of significant results is likely due to the small sample size and resulting underpowering. Nonetheless, it suggests a great need for further exploration and understanding. This study suggests the presence of several significant challenges to pediatric shared decision-making.
There is national and global consensus regarding the importance of involving children in decision-making, yet implementation lags far behind. Pediatric SDM is endorsed by regulatory organizations including the American Academy of Pediatrics.5,17,18 Use of SDM in pediatrics is understudied.19 The limited existing evidence suggests that pediatric involvement in decision-making is beneficial to patients, through facilitation of understanding and self-confidence, increased trust and decreased fear and anxiety, and improved care.5,20-23 Furthermore, utilizing parents as surrogate decision-makers can be flawed, as parental decision is subject to many external influences such as impact on other family members, religious or cultural views, and emotional state, hence furthering the importance of involving children in these decisions.5,24 Unfortunately, despite the evidence for and support of involving children in medical decision-making, neither the nature of participation nor the practical implementation is clear.23 SDM in pediatrics is even more complex than in adults, due to the triad of stakeholders (the physician, the patient, and the parents), variability in the child’s development, and legal stipulations.25,26 The net result is that children are minimally involved in decisions.18,27-30
This study addresses beliefs regarding pediatric SDM and barriers to it, from the perspective of one of the key stakeholders: the physician. This is an essential step in improving implementation. In this study, we identified three main barriers. First, despite the general consensus from regulatory boards to empower children to make decisions, many physicians feel conflicted and restricted by legal age-related constraints. The majority of respondents felt parents held decision-making authority because the child was under 18. Especially with younger children, physicians tended not to place significant weight on the viewpoints of children and viewed parents as the ultimate decision-makers. Second, age played some role in impacting views towards involving children in decisions, but maturity, as one important component of competency, played a very limited role. Third, physicians appeared to struggle with the process of shared decision-making, assessment of competence, and how to address conflict, yet despite this, many would not seek out assistance from ethics or psychiatry consultants.
The literature confirms these barriers. First, the legal framework renders involvement of children in decisions unclear and potentially problematic. Legally, children do not hold decisional authority under the age of 18, with the exception of emancipated minors. Furthermore, regulatory agencies reinforce the parental duties to protect children.17 Yet simultaneously, they recommend giving “due weight” to the child’s preferences.17 Many legal cases have granted prevailing rights to minors, particularly in instances of treatment refusal, suggesting the decision-making cutoff of 18 years of age may be less firm than perceived.31-33The legal context may cause many providers to feel conflicted about encouraging pediatric patients to make decisions.
The literature also demonstrates the undue weight placed on the age of the child, and the failure to appropriately take other factors into consideration such as maturity. It is commonly assumed that ability to participate in or make decisions is age-dependent in pediatrics, and yet age is an inaccurate predictor of capacity.23,26Furthermore, an age-based model fails to take into consideration many important factors such as the child’s clinical situation, developmental stage, cognitive ability, maturity level, preferences, and the family situation, despite recommendations to do so.9,11,22,23,28,34,35
Third, clinicians are not adequately equipped to assess competence or implement SDM. Clinicians are likely underestimating the competency of children, particularly of those with chronic disease.28 Furthermore, there is a false assumption that competency is directly dependent on age rather than being a fluid concept.26 Competency assessment is complex in children, and involvement of children in decisions requires adaptation to the child’s varying needs and developmental level.25,26 Tools to assist in this are lacking.21,23 Without the skills and training required to perform pediatric SDM, implementation will remain limited.25,28
Additional barriers to involving children in SDM reported in the literature include power concerns, concern for the child and parents’ emotional states, inadequate communication skills, and insufficient time to properly involve children in decisions.23,25,36,37
Children with cystic fibrosis serve as an important case study with which to assess pediatric shared decision-making and its barriers. First, their cognitive abilities are preserved, and studies have clearly shown increased competency in children with chronic disease, possibly due to their experience with illness and their interactions with parents and clinicians.7,12-14,38 As a result, children and adolescents with CF should have increased involvement in decisions. Second, from a physician standpoint, there is evidence that those caring for children with severe or chronic illness are more likely to involve them in decisions due to improved training in communication.39,40 Third, the relationships between physicians, patients, and families are often long-term, which can facilitate knowledge of the family’s goals and values and thereby facilitate shared decision-making (Barry).6 Fourth, care decisions such as whether or not to pursue lung transplantation, are value laden and would benefit from SDM the most. However, despite this, evidence suggests that clinicians are less likely to involve children in high stakes decisions.23,25 Lastly, given the increasing life expectancy in CF and other chronic diseases, there is an essential emphasis on promoting patient ownership of care and preparing for the transition to adulthood.41,42 Yet even in this population, ripe for pediatric involvement in shared decision-making, our study found that the majority of pulmonologists would grant decisional authority to the parents, even in the instance of an adolescent with signs of maturity and care ownership.
Interventions aimed at improving pediatric involvement in SDM are understudied.25 In fact, within the CF population, a 2019 Cochrane review attempting to evaluate interventions for promoting SDM in children with CF yielded zero randomized control trials.21 Decisional aids, which help to inform patients about their options and align decisions with values, have been quite effective in adult SDM but similar studies in pediatrics are lacking.6,34,43 The dearth of research in this area is staggering, and points to the desperate need for continued investigation of both the barriers to implementing pediatric SDM, and interventions to assist in the implementation.