Meeting the Parents: Decisional Conflicts in Pediatric Encounters
July 2018 Issue
The movie Meet the Parents tells the story of Greg Focker, who wants to win the approval of his girlfriend's family before proposing marriage. Early in the movie, the girlfriend's father, Jack, cautions Greg about the importance of being part of the family's Circle of Trust. Greg's goal is to remain within the Circle of Trust and demonstrate that he is a worthy partner. But a series of unfortunate events and bad decisions combine to create awkward situations that make it increasingly clear how difficult it will be for Greg to win the approval of his future in-laws. As practitioners, it may seem we find ourselves in Greg's predicament as we navigate the family dynamics in encounters with our pediatric patients.
The inherent optimism and high activity levels of most children, and the potential to make a significant impact over the course of their lives cause most of us to look forward to these encounters. However, family systems can create obstacles to providing optimal care and make the experience less professionally rewarding. The functional limitations of pediatric patients often pale in comparison with challenges related to working with parents who we consider difficult. This article describes characteristics of difficult parents, discusses the challenges involved with navigating differences of opinions about treatment, and suggests ways of managing those situations.
What is a Difficult Parent?
In an article titled "The Difficult Parent: A Reflective Pediatrician's Response," Martin Stein, MD, FAAP, director of developmental-behavioral pediatrics at Children's Hospital San Diego, describes the feelings of competence and accomplishments that are a usual part of clinical encounters when practitioners use their knowledge and clinical skill to improve a child's life. He identifies parents who are "demanding of our time, never satisfied with their child's care, and often angry with us and our staff" as one of the most significant challenges to those feelings.1 In the same article, Robert Wells, MD, director of research and ethics at Children's Hospital Central California, identifies difficult parents as those who are "intense, demanding, dependent, irritable, and unpredictable."1 They may also be "negativistic, mistrusting, and chronically dissatisfied."1 According to Wells, "You will know that you have met such a parent when you feel frustrated, underappreciated, confused, and helpless."1 It is possible that difficult parents have some of the same characteristics that have been well documented in adult patients who are considered to be difficult, including higher incidence of depression and other mental disorders along with unreasonable expectations. Whatever the root cause, conflicts with parents regarding a child's care can contribute to feeling that we're well outside their circle of trust, even though we have done our professional best to earn it.
Disagreements about treatment can occur between any or all the individuals involved in an encounter. A common source of conflict with parents involves the question of who has authority to make treatment decisions. Disagreements of this type can escalate into angry demands for specific treatments or refusals to follow through with clinicians' recommendations. Guiding parents and pediatric patients through the decision-making process can improve the quality of care and increase the satisfaction of all the stakeholders in the encounter.
The Zone of Parental Discretion
In 2016, ethicist Lyn Gillam, PhD, the academic director of the Children's Bioethics Centre in Melbourne, Australia, published an article recommending consideration of the "zone of parental discretion" (ZPD) in cases when children are "too young to have a meaningful view of their own about treatment."2 She describes the ZPD as "a tool for ethical deliberation by clinicians and ethicists about all situations in which parents and doctors disagree about treatment of a child, whether parents are refusing medically recommended treatment, or requesting non-recommended treatment."2 She begins by describing the limitations of using the best interest of the child as the standard for how decisions should be made. Attempting to determine what is in the child's best interest in some absolute sense may not be possible in cases where "there are competing views, which cannot be adjudicated, or there is paralyzing uncertainty: evidence is lacking, equivocal, or not directly relevant, and there is no obvious way to resolve the question of what would be optimal for the child."2 Many O&P treatment options are not supported by conclusive evidence, making it difficult to determine the best option. Instead, when making recommendations, clinicians use clinical judgement informed by past experiences that can be called into question by a parent determined to pursue an alternative option. Gillam suggests that when defining the ZPD, the harm principle should be considered as "the ethically protected space where parents may legitimately make decisions for their children, even if the decisions are suboptimal for those children (i.e. not absolutely the best for them). The ethically acceptable zone for parents' decisions…extends down to the cut-off line, or threshold, where the child will be harmed if the parents' decision is followed."2 She suggests that "‘good enough' parental decisions should be tolerated, until the point where they would cause harm to the child."2 Harm must be understood, not just as suboptimal outcomes, but as "a serious set-back to interests," with interest referring to "various components of well-being" such as "continued life, freedom from pain, relationships with others, and experience of happiness."2
Objections have been raised to Gillam's position that "when parents disagree with doctors, the first question to ask is whether the parents' decision falls within the ZPD, not whether their decision is in the best interest of the child."2 One important objection is that this model minimizes or ignores the role of the child in the decision-making process. While it may not be problematic to affirm that parents of infants or cognitively impaired children have absolute decision-making authority, there is disagreement regarding the age when children become competent and should be involved in the process. Competence depends on a variety of factors, including "each child's experience and confidence, on the child-parents relationships and values, and whether or not they are used to sharing knowledge, risk-taking, and control over decisions."3 To complicate matters, children with chronic health conditions often demonstrate a more mature understanding of their illnesses and their consequences than other children their age, which may mean that their opinions should be given more weight. One critic of the ZPD claims that "Children…benefit when, instead of assuming incompetence, doctors start from a presumption of competence and work out with each child how willing and able they are to be informed and involved in decisions about their healthcare."3
What About Teenagers?
"Adolescents present a puzzle." Few parents of teenagers would disagree with this opening line of the article titled "Adolescent Pediatric Decision-Making."4 Preteens and teenagers are no longer little children but are not expected to function as autonomous adults in most areas of life. The legal doctrine of the mature minor "considers adolescents, as far as possible, as equivalent to adults for the purpose of medical decision-making. The movement to support independent decision-making by adolescents through providing information to them and securing their consent apart from their parents is encouraged by those legal understandings that hold that unemancipated minors should generally be considered as possessing effective decisional capacity…." Whatever the legal requirements are, clinicians recognize that successfully treating adolescent patients requires involving them in decisions related to their care. The likelihood that an orthosis or prosthesis is removed, or that the patient refuses to wear it at all, increases as the child's motor skills and independence increase. Without the patient's agreement, it is not likely that there will be adherence once the patient is no longer under the direct supervision of a parent or caretaker. However, the author cautions that "adolescents and younger children are different from adults in having faulty perceptions of risk, inadequate capacities to gauge the long-term outcomes of their decisions, and more limited control of their impulses…. These disparities in decision-making have been shown to reflect differences in the neurophysiological character of the adolescent brain…. These findings give grounds for discounting the authority, capacity, and prudence of decisions by persons under the age of 18."4 Clinicians are left with the difficult task of navigating with sensitivity the decisional conflicts in encounters with pediatric patients at a variety of age and maturity levels.
What's Below the Surface?
Parents come to encounters laden with a history of emotionally charged experiences. What we experience as personal attacks on our professional abilities may come after years of pressure and stress as parents have navigated difficult decisions related to their child's health. Few of the healthcare questions these parents have faced had easy solutions, and the outcomes of many of their decisions may not be known for years. Meanwhile, they must make specific decisions, often with serious implications for their child's immediate and long-term quality of life. Poor decisions that parents and previous healthcare providers have made about how to navigate differences of opinion can cause our disagreements with them to escalate. In addition to negative feelings and patterns of behavior rooted in their own childhood experiences, parents may be struggling with sadness, anxiety, guilt, and shame related to their child's condition and the care they are providing. A mother may be demanding and angry because she sees this as "the only path available to her in that it relieves the guilt, avoids the sadness, and confirms she is doing the best she can…."1 Parents are often aware of how healthcare decisions will affect the child receiving treatment as well as the other members the family system, and balancing these factors can add significantly to the pressure they feel. Sensitivity to the high demands placed on parents can go a long way toward establishing trust and resolving disagreements about treatment options.
Working Within the Circle of Trust
Difficult parental behaviors may indicate that the parent views us more as an enemy than an ally. Showing concern about the pressures they are experiencing and affirming their efforts to make the best decisions for their child can demonstrate that we are on the same side and help build trust. We have some room to accommodate parental requests or demands, allow the negative consequences we anticipated to become apparent (provided the patient is not harmed), and then address the problem in the manner that we initially recommended. The good faith and trust engendered by adjusting or remaking an orthosis or prosthesis according to our initial recommendations may be well worth the resources we invest in that process. Importantly, practitioners need to accept that parents have the right not to address a condition or to choose a treatment option that we believe is less effective. Practitioners should thoroughly document the options that were recommended, and that the risks and benefits of each option were explained. Sisk et al. describe three different models for addressing decisional conflicts between parents and patients in pediatric encounters.5 Clinicians can defer to parental authority, advocate for the preferences of the child, or serve as an arbitrator between the parents and the child. They recommend that "the arbitrative model should serve as the initial model in nearly all settings" because it "is likely to reach the most beneficial decision in a manner that maintains family cohesiveness by respecting the authority of parents and the developing autonomy of children."5 They recommend that clinicians "keep all three models available in their professional toolkit and develop the wisdom to deploy the right model for each particular clinical situation."5 Skillfully applying all these approaches can help practitioners provide appropriate care while encouraging adherence.
When there are disagreements about treatment options, clinicians can find themselves in the uncomfortable position of being outside the parental Circle of Trust. A confrontational parent/practitioner relationship decreases the satisfaction of everyone involved in the encounter, and more importantly, is likely to negatively impact the care provided. Efforts must be made to win the trust of and involve the parents and patients so that we can help resolve decisional conflicts rather than exacerbate them. Acknowledging that parents have the responsibility and right to make decisions that they believe are appropriate for their children (the ZPD) and recognizing each patient's ability to participate in the decision-making process are both important. We would do well to seriously consider William Bartholome's recommendation that "children and adolescents should always be included in healthcare decision-making to the extent of their capacity and willingness to do so."6
John T. Brinkmann, MA, CPO/L, FAAOP(D), is an assistant professor at Northwestern University Prosthetics-Orthotics Center. He has more than 20 years of experience treating a wide variety of patients.
1. Stein, M. T., M. S. Jellineck, and R. S. Wells. 2004. The difficult parent: A reflective pediatrician's response. Journal of Developmental & Behavioral Pediatrics 25:S93-6.
2. Gillam, L. 2016. The zone of parental discretion: an ethical tool for dealing with disagreement between parents and doctors about medical treatment for a child. Clinical Ethics 11(1):1-8.
3. Alderson, P. 2017. Children's consent and the zone of parental discretion. Clinical Ethics 12(2):55-62.
4. Partridge, B. 2014. Adolescent pediatric decision-making: a critical reconsideration in the light of the data. HEC Forum Vol. 26, No. 4, pp. 299-308). Springer Netherlands.
5. Sisk, B. A., J. DuBois, E. Kodish, J. Wolfe, and C. Feudtner. 2017. Navigating decisional discord: The pediatrician's role when child and parents disagree. Pediatrics May 12:e20170234.
6. Bartholome, W. G. 1995. Informed consent, parental permission, and assent in pediatric practice. Pediatrics 96(5):981-2.