PEDIATRICS Volume 142, number s3, November 2018:e20180516B SUPPLEMENT ARTICLE

Shared Decision-making in Pediatric Practice: A Broad ViewAlexander A. Kon, MD, a Wynne Morrison, MD, MBEb

aDepartment of Pediatrics, University of California, San Diego, La Jolla, California; and bDepartment of Anesthesiology and Critical Care Medicine, Children’s Hospital of Philadelphia and Perelman School of Medicine, University of Pennsylvania, Philadelphia, Pennsylvania

Drs Kon and Morrison conceptualized, drafted, and reviewed and revised the manuscript; and both authors approved the final manuscript as submitted and agree to be accountable for all aspects of the work.

DOI: https:// doi. org/ 10. 1542/ peds. 2018- 0516B

Accepted for publication Jul 3, 2018

Address correspondence to Alexander A. Kon, MD, Department of Pediatrics, University of California, San Diego, 9500 Gilman Dr, La Jolla, CA 92093. E-mail: kon.sandiego@gmail.com

PEDIATRICS (ISSN Numbers: Print, 0031-4005; Online, 1098-4275).

Copyright © 2018 by the American Academy of Pediatrics

FINANCIAL DISCLOSURE: The authors have indicated they have no financial relationships relevant to this article to disclose.

FUNDING: No external funding.

POTENTIAL CONFLICT OF INTEREST: The authors have indicated they have no potential conflicts of interest to disclose.

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.

abstract

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In 1982, the Presidential Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research published its seminal report, Making Health Care Decisions.1 The commission put forth a model of informed medical decision-making shared between the patient and health care providers that is sensitive to patient values and goals. This model was described as a collaborative and flexible process that requires patients to be provided with all relevant information regarding their condition and alternative treatments, including possible benefits, risks, costs, other consequences, and significant uncertainties, 1 and explicitly given the opportunity to accept or reject treatment.

The process of shared decision-making (SDM) is seen as a middle ground between the extremes of excess physician paternalism and unbridled patient autonomy, and SDM has become a significant focus in bioethics and clinical medicine over the past 2 decades. In 2001, the Institute of Medicine (now 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.” 2 In 2004, representatives from 5 major critical care organizations from the United States and Europe supported SDM in end-of-life care in the ICU.3 In 2008, the American Medical Association enacted policy supporting SDM.4 In 2011, representatives from 18 countries signed the Salzburg Statement supporting SDM.5 In 2016, the American College of Critical Care Medicine (ACCM) and the American Thoracic Society (ATS) issued a Joint Policy Statement on SDM in the ICU.6 As all of the authors in these publications note, there is no single, well-accepted definition of SDM. Furthermore, although the concept

of SDM sounds great in theory, it is more difficult to operationalize in practice.

In part, the lack of a unified definition of SDM stems from the diversity of clinical models and the history of decision-making in various settings. In outpatient adult medicine, SDM generally emphasizes informing patients of their options and supporting patient autonomy. This focus seems driven by a sense that some doctors are overly paternalistic and that many patients want more understandable information so that they can be empowered to make better, more informed choices in their own medical care. In contrast, ICU providers often focus on the many ICU physicians who shirk making difficult decisions and leave some families feeling abandoned when making what is often the most difficult choices they have ever made. As such, in their statement, the ACCM and ATS strongly support the involvement of both families and ICU team members in SDM and support physician-driven decision-making even for highly value-laden choices when appropriate.6

Much of the work on defining, facilitating, and supporting SDM has been focused on the adult setting; however, SDM is not restricted to adult medicine. In 2016, the American Academy of Pediatrics (AAP) issued a revised Policy Statement on informed consent, stating that “[s]hared decision-making is a central tenet of the family-centered medical home.” 7 Furthermore, in 2017, the AAP published a Policy Statement specifically discussing SDM in the care of children with disabilities.8 Although these statements are excellent resources, we believe that further consideration of many of the nuanced issues and a greater consideration of some of the issues that arise in the inpatient setting is necessary. Furthermore, although the ACCM-ATS statement was developed

for all ICU settings, including the PICU and NICU, 6 many pediatric-specific issues were not included because of the required breadth of the statement. For these reasons, we have assembled experts in pediatrics and decision-making to consider the most salient issues in SDM in the pediatric setting for inclusion in this supplement issue of Pediatrics.

WHAT IS SDM?

Although the AAP does not specifically define SDM, it notes that key features of SDM include the following: (1) at least 2 parties are involved, (2) information is exchanged in both directions, (3) all parties are aware of treatment options and what they are, and (4) all bring their knowledge and values-related priorities equally into the decision-making process.8 In contrast, the ACCM and ATS support the following definition: SDM is a collaborative process that allows patients, or their surrogates, and clinicians to make health care decisions together, taking into account the best scientific evidence available as well as the patient’s values, goals, and preferences.6

SDM may be viewed narrowly as requiring specific steps and processes.9, 10 Researchers using such models seek to ensure that all parties communicate effectively, understand the relevant information (both the medical information, which the doctor provides to the patient, and information regarding values, which the patient provides to the doctor), and jointly come to a decision. Alternatively, SDM may be viewed broadly as encompassing a wide array of decision-making models.11 At this time, there is no agreement regarding what forms of decision-making fit within SDM and which models represent a partnership in decision-making but are outside the bounds of SDM.

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SDM IN PEDIATRIC PRACTICE

SDM in pediatrics is necessarily different than SDM in adult medicine. Specifically, in pediatrics, the extent to which the patient is involved in decision-making varies significantly. Some patients (the young, the immature, those with severe cognitive difficulties, sedated patients in the ICU, etc) are wholly left out of decision-making, whereas other patients (older adolescents, those with chronic illness, the mature, etc) may be the primary decision-makers in their own care. With such a wide array of roles for pediatric patients in their own care, any conceptualization of SDM in pediatrics must be flexible enough to allow for such varied inclusion of the children in the decision-making team.

Because minors lack legal authority to provide informed consent for treatment (except in specific circumstances as defined by state law), SDM in pediatrics must necessarily include the parent or legal guardian. As such, when the child is included in the decision-making team, the team necessarily includes at least 3 individuals (the patient, the parent, and the physician), which may complicate the SDM structure as generally discussed in adult outpatient medicine. Furthermore, in some cases, the parents’ choices may overrule the patients’, whereas in other circumstances, the patients’ preferences may overrule those of the parents. As such, SDM with mature minors is different from, and generally more complicated than, SDM with an autonomous adult patient.12, 13

In both pediatric and adult medicine, family members often act as the surrogate decision-makers; however, there may be significant differences between how the surrogates of adult patients and how the parents of children make difficult choices with doctors. In general, substituted judgment is used when making

decisions for an adult patient who is incapacitated; however, we generally do not use substituted judgment in the care of children (note: the concept of substituted judgment was first introduced as a means to make decisions for a patient who had never had decision-making capacity14). In pediatrics, we generally use the best interest standard; however, there are significant limitations to the use of this standard, and debate continues regarding the weight that may be given to the interests of others (parents, siblings, etc).7

Because parents often self-identify as the children’s protectors, which is a normal parental role, they are often less willing to consider less aggressive goals of care than are surrogates of adult patients. Furthermore, because there is often a sense that children “have not yet really lived” or that they “still have so much life ahead, ” parents may be more focused on any chance of survival regardless of the cost (in terms of time, pain and suffering, money, etc) than are surrogates of adult patients. Furthermore, illness in a child may be seen by the parent (either consciously or subconsciously) as failure (failure to adequately protect the child, failure to adequately provide for the child, failure to pass along “good genes” to the child, etc), leading to a sense of guilt that may significantly impact the decision-making process. Indeed, the parent’s self-identity may be closely linked to his or her relationship with the child, and it may heavily influence the decisions they make.15

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. Readers will find that much of the work contained in this issue is grounded in the vast clinical experience and philosophical inquiry of the assembled authors. Although many of our authors pull

from empirical studies, the lack of empirical work in the area of SDM in pediatric practice leads to the diverse conceptual models presented. Indeed, we lack consensus even on what ought to be assessed as outcomes for such research. Researchers have considered an array of outcomes, including parental satisfaction, health care team satisfaction, decisional regret, lack of legal action, hospital length of stay, overall admission cost, adherence to predetermined communication guidelines, etc; however, there remains disagreement regarding the specific goals in SDM and how best to assess whether the goals were met in any given case. Much work in the adult arena has been focused on decision aids; however, this work has revealed questionable efficacy of such tools, and such tools are focused on empowering surrogates without supporting other aspects of SDM (building a trusting relationship, supporting clinicians in being directive when appropriate, facilitating team-based decision-making, etc). As such, there are not currently sufficient data to yield an evidence-based holistic conceptualization of SDM. We hope that the articles in this issue foster further conversation and spur research to improve SDM and the care we provide to children and families.

ABBREVIATIONS

AAP:  American Academy of Pediatrics

ACCM:  American College of Critical Care Medicine

ATS:  American Thoracic SocietySDM:  shared decision-making

REFERENCES

1. President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research. Making health care decisions: the

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ethical and legal implications of informed consent in the patient-practitioner relationship. 1982. Available at: https:// repository. library. georgetown. edu/ bitstream/ handle/ 10822/ 559354/ making_ health_ care_ decisions. pdf? sequence= 1& isAllowed= y. Accessed January 5, 2018

2. National Research Council. Crossing the Quality Chasm: A New Health System for the 21st Century. Washington, DC: National Academies Press; 2001

3. Carlet J, Thijs LG, Antonelli M, et al. Challenges in end-of-life care in the ICU. Statement of the 5th International Consensus Conference in Critical Care: Brussels, Belgium, April 2003. Intensive Care Med. 2004;30(5):770–784

4. American Medical Association. AMA Policy Database: Informed patient choice and shared decision making D-373.999. Available at: https:// policysearch. ama- assn. org/ policyfinder/ search/ Informed Patient

Choice and Shared Decision Making D-373.999/relevant/1/. Accessed January 5, 2018

5. Salzburg Global Seminar. Salzburg statement on shared decision making. BMJ. 2011;342:d1745

6. Kon AA, Davidson JE, Morrison W, Danis M, White DB; American College of Critical Care Medicine; American Thoracic Society. Shared decision making in ICUs: an American College of Critical Care Medicine and American Thoracic Society Policy Statement. Crit Care Med. 2016;44(1):188–201

7. Katz AL, Webb SA; Committee on Bioethics. Informed consent in decision-making in pediatric practice. Pediatrics. 2016;138(2):e20161485

8. Adams RC, Levy SE; Council on Children With Disabilities. Shared decision-making and children with disabilities: pathways to consensus. Pediatrics. 2017;139(6):e20170956

9. Charles C, Whelan T, Gafni A. What do we mean by partnership in making

decisions about treatment? BMJ. 1999;319(7212):780–782

10. Opel DJ. A 4-step framework for shared-decision making in pediatrics. Pediatrics. 2018;142(suppl 3):e20180516E

11. Kon AA. The shared decision-making continuum. JAMA. 2010;304(8):903–904

12. Halpern J. Creating the safety and respect necessary for “shared” decision-making. Pediatrics. 2018;142(suppl 3):e20180516G

13. Miller VA. Involving youth with a chronic illness in decision-making: highlighting the role of providers. Pediatrics. 2018;142(suppl 3):e20180516D

14. Superintendent of Belchertown State School v Saikewicz, 373 MA 728 (1977)

15. Feudtner C, Schall T, Hill D. Parental personal sense of duty as a foundation of pediatric medical decision- making. Pediatrics. 2018;142(suppl 3):e20180516C

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DOI: 10.1542/peds.2018-0516B2018;142;S129Pediatrics 

Alexander A. Kon and Wynne MorrisonShared Decision-making in Pediatric Practice: A Broad View

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