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.