Shared Decision-Making and Children With Disabilities: Pathways to Consensus

Background

Concepts of SDM have been described in publications over the past 2 decades. Although multiple definitions of SDM have been offered,^1–3 key features 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. For this clinical report, the following working definition is used: SDM is an interactive process in which patients (families and children, especially more cognitively able children) and physicians (and other involved professionals) simultaneously participate in all phases of the decision-making process and together arrive at a treatment plan to be implementated.^2,4,5

SDM is best characterized as a process that actively uses words or phrases such as “collaborative,” “patients and health professionals,” “together,” “informed,” “best scientific evidence available,” “patient’s values and preferences,” “family/patient centered,” “options,” and “supports needed.” The construct of SDM is founded in ethics, law, clinical care, cultural tenets, and standards within public and private health care delivery systems¹ and is the basis of patient-centered care.⁶ This process sets the stage for consensus about routine decisions building up to more significant decisions.

Too often, in the discussion of treatment plans, gaps exist between the child’s/family’s values, priorities, and understanding of perceived “best choices” and those of the clinician. An “either-or” approach to decision-making supposes 1 approach “wins out” with acquiescence of the other. However, when conducted well, SDM affords an appropriate balance incorporating all voices, ultimately supporting both the child/family and clinician⁷ (Fig 1).

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FIGURE 1

Continuum of decision-making.

Much of the evidence for SDM comes from adult medicine, with fewer pediatric studies available. Nonetheless, there are many opportunities for its application in pediatric care, particularly for children with disabilities. SDM is applicable for chronic and acute care encounters. Added complexity occurs in the SDM process in children who have made developmental progress and have the skills to become an active participant.⁸ Presenting children with information (appropriate for their developmental age) can help their understanding of their condition and treatments, reduce fear, and enhance self-confidence.⁹ A recent review underscores the need for studies that support active participation of the child, along with the family and clinician,¹⁰ and that assist in decisions focused on acute or long-term concerns and future planning.

The timing of SDM is important, because it must be implemented for routine decisions and well in advance of predictable (or unpredictable) crises, such as those requiring intensive care or do-not-resuscitate decisions. Crisis and emergency situations change the process to accomplish SDM. In children who require complex care management, such as those with chronic illness requiring teams of professionals, additional complexity exists where teams must integrate SDM among all members.¹¹

Research About SDM

Research in pediatric SDM is in its early stages.^12–19 Most published studies are observational and/or qualitative in nature. Descriptive studies have focused on the evolution of commonly accepted definitions of SDM, facilitators or barriers to the use of SDM, and the impact on families. Few studies exist on efficacy and effectiveness of decision aids or other SDM interventions.²⁰

Studies of parental decision-making on behalf of their child reveal a diversity of influences. Parental or family factors include cultural norms, community standards, impact on siblings or extended family, previous experiences, religious faith, and impact of acuity and stability of the child’s health status.^21–23 Descriptions of cultural influences on the physician-patient interaction continue to inform the process of decision-making.^6,24–29

Barriers and facilitators may be divided into categories of knowledge, attitudes, agreement, lack of expectancy/hope, and behaviors.³⁰ Barriers to SDM include patient (family) characteristics, health system constraints (time for consultation, lack of continuity of care with physician, reimbursement issues, inadequate environmental conditions), power imbalance in a relationship, language barriers between families and clinicians, lack of availability of evidence and tools for decision support, attitudinal biases, knowledge deficits of clinicians,³¹ and lack of applicability (eg, patient characteristics or situations of unusual life-threatening events requiring intensive emergency intervention).³²

Common facilitators for the use of SDM include provider motivation, positive impact on the clinical process, and patient outcomes.³³ Pediatric clinician motivation may include the consideration of cost-effectiveness of the additional time. To address cost-effectiveness, American Academy of Pediatrics’ resources on coding/billing are available and continually updated. Information on face-to-face and time-based billing and other avenues of support can be found at https://www.aap.org/en-us/professionalresources/practice-support/Coding-at-the-AAP/Pages/Evaluation-and-Management.aspx. Data from the National Survey of Children with Special Healthcare Needs and the Medical Expenditure Panel Survey describe the frequency of SDM, associations with the likelihood of its use, characteristics of providers using SDM, and impact on quality and satisfaction with care.^34,35 Studies of effectiveness have been rare and have examined the impact of different tools to implement SDM. Standardized tools available for clinical use and/or research are listed in Supplemental Table 5. Tools included in Supplemental Table 5 and Supplemental Fig 2 might be useful to inform clinicians of the anticipated components by which they are likely to be measured and to use as a template for designing the SDM conversation(s) needed.

Decision aids have been designed to provide education about specific disorder(s), outline treatment options, exchange evidence about treatment risks and benefits, and support families’ values and priorities. A 2014 Cochrane review reported that decision aids improve patients’ knowledge of options, expectations of benefits and harms, and participation in SDM.³⁶ Other benefits include reduced decisional conflict, increased active participation by families, and fewer undecided patients.³⁷

Clinical tools to measure patient preferences, clinician behaviors, frequency of use of decision aids and/or patient educational materials, and satisfaction and comfort (family or clinician) with decisions³⁸ have been studied. A Cochrane Collaboration review of interventions to improve the adoption of SDM by clinicians described 2 studies meeting strict criteria for quality and effect size.²⁰ No studies have reported measures related to medical/surgical outcomes.

As interest in SDM has increased, tools to promote its use, such as decision aids, have been constructed. Historically, these tools were related to specific conditions (acne, diabetes medication regimen, prostate cancer, and others) and were for adult patients/conditions. Some tools focus on patients’ perceptions of physicians’ performance in support of the decision-making process. Others encompass theory, practical guidance, and clinical use.^39,40 Toolkits are available online through the Agency for Healthcare Research and Quality and the Dartmouth-Hitchcock Center for Shared Decision Making. See Supplemental Table 5 for examples of tools and toolkits.

The 9-item Shared Decision Making Questionnaire (SDM-Q-9) was developed by Kriston et al.³ This tool can be used (1) to investigate the effectiveness of interventions aimed at the implementation of SDM, (2) as a quality indicator in health services assessments (eg, for Maintenance of Certification projects), and (3) as a guide for use in the “real world” clinical setting for structuring the “practical steps” in support of SDM. A copy of the SDM-Q-9 is included in Supplemental Fig 2.

Pediatricians and the SDM Process

For children with disabilities and their families, issues of health-related quality of life occur at different and repeating periods. Variables such as developmental stage and the ability of the child or adolescent and timing, context, severity, acuity or chronicity of primary conditions, and comorbidities present unique challenges to child/family-physician interaction. Family-centered care is a valuable construct for all children, but especially for those with special health care needs. Family-centered care serves as a good foundation when questions arise and the application of an SDM process is needed.⁴¹

As difficult decisions need to be made (such as those in the case examples described later), focused leadership by the clinician will assist the family’s arrival at a confident decision. Too often, as the clinician engages in conversation about options for care, the efforts are met with a lack of decisional closure, a “stalling out” of the process. Table 1 outlines needed steps and components of SDM.^42,43 Items bulleted in Table 1 also offer potential “sticking points.” If there appears to be a lack of consensus for action, the answer may be found at any of several “sticking points.” For example, if the family’s understanding of the underlying diagnosis (or potential complications) is unclear, if financial stressors are not addressed, if cultural traditions are not acknowledged, or if the adequacy of support systems for the child/family is not explored, the decisional process may feel “stuck.” Although conversations with a specific child/family may not require a point-by-point inclusion of all components of Table 1, the clinician’s access to such an outline may help direct the decisional discussions.

“Practical steps”³ that are common to any SDM process are outlined in Table 2. Awareness of these steps improves the clinician’s efficient use of consultation time and effective leadership and support to the family. At times, the process will seem smooth and natural, with a relatively quick consensus. Other times, the complexities of the individual situation may require that the steps in Table 2 be explored more deeply. Elwyn et al^44,45 have outlined 3 types of “talks” that might help clinicians: “choice talk,” “options talk,” and “decisions talk.” This model works well alongside that of Kriston et al,³ discussed previously. Table 3 provides an outline of the 3 talks with an example narrative to serve as a guide for the clinician. These components support the steps of prioritization, negotiation, and finalization of the SDM process. If the family perceives “too many options” are in play, this can cause stagnation of the decision-making process.⁴⁶ The component talks can allow a natural but more gradual progression over time. As an example, a detailed discussion of SDM related to gastrostomy tube placement was central to a recent American Academy of Pediatrics’ clinical report, “Nonoral Feeding for Children and Youth With Developmental or Acquired Disabilities.”⁴² Specific SDM guidance for the pediatrician was outlined in that report.

Additional resources for clinicians and their partnering families are provided in Supplemental Information 1. The SDM-Q-9 (Supplemental Fig 2) is a tool adapted for use in clinical practice; other measures may be better applied to outcomes review or research within a practice.³ For potentially unique considerations for SDM in specific cohorts, see Table 4.

Not uncommonly, the process of SDM requires more than 1 critical conversation. Notes can be entered into the medical record to assist with the “next step” meeting if one is needed. This process can either incorporate actual decision aid measures or can be documented by narrative summary. Summarization might include the following: people present, issues and concerns brought forward, pertinent comments and concerns expressed, perceived joint understanding, and status of the plan.

Finally, children with disabilities may be hospitalized for acute or chronic medical issues. Fox et al⁴⁷ outlined a structure for “family care conferences” to discuss treatment decisions. Depending on the clinical situation, the SDM process should be used to help in the process. Unfortunately, time and circumstances can present constraints. But, as Fox et al⁴⁷ suggested, the primary care clinician (who knows the family and has been a part of the larger, longer SDM process) should be an invited participant to provide ongoing support to the family/child and to the hospitalist/specialists.

Lead Authors

Richard C. Adams, MD, FAAP

Susan E. Levy, MD, MPH, FAAP

Council on Children With Disabilities Executive Committee, 2016–2017

Kenneth W. Norwood Jr, MD, FAAP, Chairperson

Timothy Brei, MD, FAAP

Lynn F. Davidson, MD, FAAP

Beth E. Davis, MD, MPH, FAAP

Kathryn A. Ellerbeck, MD, FAAP

Amy J. Houtrow, MD, PhD, MPH, FAAP

Susan L. Hyman, MD, FAAP

Dennis Z. Kuo, MD, MHS, FAAP

Garey H. Noritz, MD, FAAP

Mary O’Connor Leppert, MD, FAAP

Larry Yin, MD, MSPH, FAAP

Susan E. Levy, MD, MPH, FAAP, Autism Subcommittee Chairperson

Nancy A. Murphy, MD, FAAP, Immediate Past Chairperson

Sandra L. Friedman, MD, MPH, FAAP, Immediate Past Member

Richard C. Adams, MD, FAAP, Immediate Past Member

Liaisons

Peter J. Smith, MD, MA, FAAP – Section on Developmental and Behavioral Pediatrics

Georgina Peacock, MD, MPH, FAAP – Centers for Disease Control and Prevention

Marie Mann, MD, MPH, FAAP – Maternal and Child Health Bureau

Jennifer B. Pitre, MA, JD – Family Voices

Staff

Stephanie Mucha, MPH