Pediatric Shared Decision-Making for Simple and Complex Decisions: Findings From a Delphi Panel.

OBJECTIVE: To develop recommendations for pediatric shared decision-making (SDM). METHODS: We conducted a Delphi method study from 2020 to 2021 with an international panel (n = 21) of clinicians, researchers, and parents with expertise in pediatric SDM. We conducted semistructured interviews to identify the key processes of pediatric SDM. We coded the interviews using content analysis and developed a questionnaire on the potential processes of pediatric SDM. Using a Likert scale, panelists evaluated each process twice, once for simple decisions and once for complex decisions. Panelists were provided with a summary of the results and evaluated each process again. The processes that were agreed on for simple and complex decisions were reported as "fundamental processes." The processes that were agreed on for complex decisions were reported as "additional processes." RESULTS: A total of 79 recommendations were developed, including 29 fundamental processes and 14 additional processes for complex decisions. A recurring theme was the importance of personalizing the decision-making process. For example, the panel recommended that physicians should assess the family and child's desired roles in the decision-making process, assess their desired level of directiveness, and elicit and clarify their values, preferences, and goals. The panel also disagreed on several subprocesses, such as how to determine the child's role and the appropriate level of directiveness. CONCLUSIONS: An international expert panel developed recommendations for pediatric SDM for both simple and complex decisions. The recommendations highlight the importance of personalizing the decision-making process.

An American's Experience with End-of-Life Care in Japan: Comparing Brain Death, Limiting and Withdrawing Life-Prolonging Interventions, and Healthcare Ethics Consultation Practices in Japan and the United States.

American and Japanese laws, customs, and practices in end-of-life decision-making differ significantly. We present a case with which one of the authors was involved to illustrate some of the key legal and cultural differences in the declaration of brain death, limiting and withdrawing life-prolonging interventions, and healthcare ethics consultation practices. The analysis presented facilitates understanding of similarities and differences between Japanese and American healthcare ethics specifically in regards to end-of-life care. Further, the analysis provides insights that can aid in developing policies and practices in regions where multiple cultures coexist.

Severe muscle pain and stiffness due to dexmethylphenidate.

Dexmethylphenidate, and potentially other methylphenidates used in the treatment of attention deficit hyperactivity disorder (ADHD), may cause severe muscle pain and stiffness. Medication side effects should be considered as the possible cause if a patient with ADHD develops severe symptoms.

Shared Decision-making in Pediatric Practice: A Broad View.

In 1982, the Presidential Commission published its seminal report, Making Health Care Decisions, advocating for informed medical decision-making shared between the patient and health care providers that is sensitive to patient values and goals. Over the past 2 decades, multiple professional organizations have officially supported shared decision-making (SDM); however, there remains no unified, well-accepted definition of the term. One reason for the lack of consensus is the wide array of clinical settings and patient populations. SDM in pediatric practice can be complicated because of the inclusion of the child in the decision-making team and the duties and limits of parental decision-making authority. The authors in this supplement provide a broad view of SDM in the pediatric setting. Many of the authors raise important questions and delineate some of the challenges that lie ahead. We hope that the articles foster further conversation and spur research to improve SDM and the care we provide to children and families.

Titrating Clinician Directiveness in Serious Pediatric Illness.

Shared decision-making in pediatrics is based on a trusting partnership between parents, clinicians, and sometimes patients, wherein all stakeholders explore values and weigh options. Within that framework, clinicians often have an obligation to provide guidance. We describe a range of ethically justifiable clinician directiveness that could be appropriate in helping families navigate serious pediatric illness. The presentation of "default" options and informed nondissent as potential strategies are discussed. The degree of clinician directiveness may vary even for decisions that are equally "shared." A myriad of factors affect how directive a clinician can or should be. Some of the most important factors are the degree of prognostic certainty and the family's desire for guidance, but others are important as well, such as the urgency of the decision; the relationship between the clinician, patient, and family; the degree of team consensus; and the burdens and benefits of therapy. Directiveness should be considered an important tool in a clinician's armamentarium and is one that can be used to support families in stressful and emotionally difficult situations.

Futile and Potentially Inappropriate Interventions: Semantics Matter.

In 1997, the Society for Critical Care Medicine (SCCM) published a statement regarding futile and inadvisable treatments. Recently, five critical care organizations published a consensus statement supporting and expanding upon the 1997 SCCM statement, and the SCCM issued a companion statement defining futile and potentially inappropriate interventions. In all of these statements, there is agreement that the term futile should be used only when an intervention cannot accomplish the intended physiologic goal. The organizations provide recommendations for optimizing communication, however even when clinicians use excellent communication techniques, there are times when competing ethical considerations mean that a surrogate persists in requesting an intervention that the clinician does not believe is justified. In such cases, clinicians should not label the requested intervention as futile, because doing so is disrespectful to patients and families, overly empowers clinicians, and stifles communication. When clinicians believe that they are justified in declining such a request due to differences in values or beliefs, they should refer to the requested treatment as "potentially inappropriate," indicating that the disagreement is based on values, and that any decision to withhold the requested intervention is preliminary until reviewed through a fair process.