Shared decision-making (SDM) is a process that brings together clinical expertise and families’ values to arrive at a treatment choice. The process is especially useful for situations with >1 reasonable option, a condition of equipoise. However, for pediatricians who want to adhere to SDM best practices, there is limited practical guidance regarding how to communicate with parents and patients. With the following text, we describe pragmatic strategies to support SDM around both high-stakes decisions in the acute setting as well as in the ongoing management of chronic conditions in settings such as primary care.

Pediatricians are frequently encouraged to use shared decision-making (SDM) in supporting parents and patients as they make important decisions.1 However, there is limited practical guidance regarding how to communicate with parents and patients using SDM. With this article, we offer 2 case studies (1 in a primary care setting and 1 largely in the inpatient setting) to demonstrate how the specific elements of SDM can be employed in both kinds of high-stakes decisions.

During 8-year-old Billy’s well visit, his mother expressed concern about his school performance. His second-grade teacher had commented on his inability to focus during the first month of school and suggested the family contact the pediatrician to get “medication.” His mother reluctantly brought up these concerns, so you explored what she thought was going on. From her perspective, he was just a “typical boy,” but she also did not want him to do poorly in school. You suggested that both his mother and the teacher complete attention-deficit/hyperactivity disorder (ADHD) rating scales. You see Billy in follow-up 2 weeks later and find that he meets the American Academy of Pediatrics guidelines for a diagnosis of ADHD. How would you discuss treatment options with his mother?

Lacey is a 14-year-old girl born at 26 weeks’ gestation with spastic quadriplegia, severe cognitive impairment, chronic lung disease, epilepsy, scoliosis, and gastric tube dependence. She lives with her parents and brother and until recently has had a social smile. She has used bilevel positive airway pressure at night since age 11 when she had a severe influenza infection requiring intubation and a 2-month hospitalization. In the last year, she has had 4 hospitalizations for respiratory infections, with 2 that were complicated by status epilepticus, and has been intubated twice. During her last admission, the team in the ICU suggested that Lacey might benefit from a tracheostomy given her chronic respiratory insufficiency, frequent admissions, and need for escalating respiratory support over the past year. Her parents have not seen her smile for a month and feel she is progressively worse after every hospitalization. Lacey is coming to see you in clinic today. How will you discuss the possibility of a tracheostomy with her parents?

SDM has the promise of reducing costs and health care use for children with special health care needs2 and is structured to align patient values with treatment plans.3 However, with >30 different conceptual models for SDM,4 there is no clear consensus on which elements of physician behavior are central to SDM, although overlap exists among many theories.5 SDM research has largely been used to examine the effectiveness of decision aids (ie, tools used to inform patients about available treatments and their risks and benefits). Authors of only a small minority of these decision-aid studies directly observed physician behavior to determine if the elements of SDM were achieved in discussions between physicians and patients.6,11 For pediatricians who want to adhere to SDM best practices, limited practical guidance is available to advise physicians on how they should communicate with patients and their parents to achieve the goal of SDM, even when a decision aid is available to educate parents.12 The purpose of this article is to provide practical guidance regarding how to communicate with parents and patients to achieve the benefits of SDM.

The Agency for Healthcare Research and Quality states that the goals of SDM are to (1) ensure that patients understand their options and the pros and cons of those options and (2) ensure that the patient’s goals and preferences are used to guide health care decisions.13 Pediatricians encounter multiple challenges to achieving this ideal.14 Many worry that they do not have the time to engage in a values-based conversation or that this is not what their patients’ families want, whereas others may not have sufficient knowledge of alternative treatments to discuss the risks and benefits of a wide range of conditions.15 Additionally, SDM requires a commitment by pediatricians to adopt equipoise about treatment options and allow the values and concerns of parents to drive the prioritization of treatments. Whereas parents of children with ADHD believe SDM about treatments is done between equal partners, pediatricians often perceive SDM in this context as an opportunity to encourage families to adopt the physician’s preferred treatment, which can undermine trust in the physician.16 SDM is applied when >1 acceptable decision exists, allowing family values to drive the chosen treatment plan. Drawing on the work of several experts in SDM,4,12,13,17 we offer a mental model for communication and specific language that might be useful in discussing with parents decisions such as those described in the cases above (Table 1). In the following, we will describe 11 steps for engaging in SDM conversations and use the 2 previous cases to demonstrate the language that might be used.

TABLE 1

SDM Process for ADHD

SDM ElementExample Phrase
Ask “What do you think is going on with your child?” 
Tell “Your son has ADHD.” 
Ask “What questions do you have about what I’ve shared so far?” 
Make clear that >1 option is acceptable “Loving parents make different decisions about where to go from here.” 
Describe different paths “One path would include using medications, while another path would include using talk therapy with a therapist.” 
Elicit concerns or questions about paths “What concerns you about those paths?” 
Ask how much physician input they want in making the decision “Some parents would like a recommendation from me, while others prefer to make the decision on their own. Where do you fall for this decision?” 
Elicit values “What worries you at this point? What are you hoping for your child?” 
Make a recommendation on the basis of values if asked “Based on your concern about using medications, I think seeing a psychologist at this time might be the next step.” 
Make a decision or defer the decision to later time “Because you agree with therapy, we’ll offer you resources that your insurance will cover.” 
Make plans for follow-up “In our next visit, we’ll discuss how the therapy is impacting his symptoms and any other concerns that have arisen. We can always update the treatment plan based on what you’re experiencing and how you’re feeling about it.” 
SDM ElementExample Phrase
Ask “What do you think is going on with your child?” 
Tell “Your son has ADHD.” 
Ask “What questions do you have about what I’ve shared so far?” 
Make clear that >1 option is acceptable “Loving parents make different decisions about where to go from here.” 
Describe different paths “One path would include using medications, while another path would include using talk therapy with a therapist.” 
Elicit concerns or questions about paths “What concerns you about those paths?” 
Ask how much physician input they want in making the decision “Some parents would like a recommendation from me, while others prefer to make the decision on their own. Where do you fall for this decision?” 
Elicit values “What worries you at this point? What are you hoping for your child?” 
Make a recommendation on the basis of values if asked “Based on your concern about using medications, I think seeing a psychologist at this time might be the next step.” 
Make a decision or defer the decision to later time “Because you agree with therapy, we’ll offer you resources that your insurance will cover.” 
Make plans for follow-up “In our next visit, we’ll discuss how the therapy is impacting his symptoms and any other concerns that have arisen. We can always update the treatment plan based on what you’re experiencing and how you’re feeling about it.” 

The initial recognition of a health problem like ADHD or a change in clinical status like an increasing need for respiratory support may trigger a discussion between pediatricians, parents, and children about potential treatment options. For many families, a new diagnosis or the worsening of a chronic condition will be perceived as serious news, and so any conversation about potential treatments should begin with a discussion of this news. After acknowledging that something important needs to be discussed, it is helpful to ask several questions. The first question should be, “Who, in addition to you, should hear this new information and help you make a decision about what comes next?” Second, inquire about the kind of information that will be most helpful in making a decision. Normalize for the parents that different families appreciate different kinds of information (eg, statistical information, a big picture summary, or many specific details) and that there is no right answer for the ideal kind of information to provide. Finally, ask the parents to tell you in their own words what they understand is happening.

For Billy, you already did an assessment of his mother’s perception when she first raised the concern about his school behavior. In Lacey’s case, in which she has been cared for by multiple providers in several different settings, you could say, “Tell me what the other doctors and nurses have told you about Lacey’s most significant health problems.”

With a better understanding of the family’s understanding of the problem, pediatricians are able to provide any new medical information, ideally in short, clear statements that do not contain jargon. Resources for communicating complicated concepts like risk and statistical probabilities and assessing understanding are available on the Agency for Healthcare Research and Quality’s Web site.13 

When giving serious news to a family, pediatricians should expect an emotional response. When emotionally flooded, families will not be able to appreciate further medical information or engage in discussions of treatment options.18 Appropriate responses to emotion include offering explicit expressions of empathy and allowing silence while the patient and parents are consumed with the emotional response.19 Billy’s mother may experience an emotional response when you share that he meets criteria for ADHD, particularly if she perceives that this diagnosis is stigmatizing or that this will be a lifelong challenge for him. If Billy’s mother asks, “Does this mean he’s going to struggle for the rest of his life with these things?” it may be helpful to respond, “Any parent would be worried about their child. What things are you worried about in particular?” Expressions of empathy that explore an emotional response, especially 1 that is surprising to you, can be important in building rapport and gaining a clearer understanding of what is worrying the parents. Lacey’s parents may appear tearful when they realize how fragile she has become. An empathic response that names their emotion might be, “Any parent hearing this information would be overwhelmed.”

Depending on the seriousness of the news and the parents’ emotional response, you may not be able to immediately continue with a conversation until the family signals that they are interested in engaging in a more cognitive conversation, either by reengaging eye contact or explicitly asking for more information. Asking what questions the family has or what they would tell a relative at this point is a good assessment of what they have understood so far. At this point, it is appropriate for you to ask permission to continue with the conversation by asking the following: “I know this is a very difficult conversation to have. Would it be okay if we talk about some of the options moving forward at this point, or would it be better if we waited until another time?”

A central element of most theories of SDM encourages the pediatrician to explicitly state that the decision has >1 acceptable option. For Billy’s mother, this might include explaining that there is evidence that his symptoms could be helped from either medications or talk therapy and that loving parents have different opinions about what is best for their child.

It is helpful to describe in more detail the different paths forward, detailing some of the benefits and risks of each of those paths. For example, for families who choose to use medications to manage ADHD symptoms, there may be side effects of the medications; however, there is the potential benefit of rapid reduction in symptoms and resulting improvement in school performance. Families should be told to expect that titration will be needed to achieve optimal results. On the other hand, if a family chooses to pursue psychological counseling, they may avoid the side effects of medications but instead worry about the stigma or costs of pursuing behavioral health treatment. Pediatricians should also discuss with parents the likelihood of any of the benefits or burdens of each treatment option. For situations in which there is significant prognostic uncertainty, or the timeline of progression of disease is uncertain, it might be helpful to speak about best case and worse case scenarios while offering your best estimation of the most likely scenario.20 In speaking to Lacey’s family, you might acknowledge that the best case scenario when pursuing a tracheostomy would mean fewer life-threatening events but that, in the worst case, having a tracheostomy would not reduce the frequency of infections, potentially requiring multiple future hospitalizations. Choosing to not pursue a tracheostomy but to prioritize Lacey’s comfort and time at home would result in a best case scenario of allowing her quality time in the setting where she is most comfortable but in the worst case may significantly shorten her life. How the pediatrician frames both of these options is central to how the parents will perceive their options. Ideally, pediatricians should focus both on the potential positive effects of all choices as well as the burdens. Framing the choice to forego a tracheostomy as a way the parents can protect Lacey from interventions that may do things “to her” rather than “for her” may help Lacey’s parents perceive this option as equally loving and acceptable as pursuing the tracheostomy.

When providing several treatment options, pediatricians should pause and explicitly elicit questions from parents about the different paths. One way of assessing parents’ understanding is to allow them to express their concerns or fears about what may happen if they choose 1 path over another. Using open-ended questions like, “Can you tell me what your concerns are if we go down path A?” is more effective at eliciting questions and concerns than just asking, “Does path A make sense?”

After outlining the potential paths forward, pediatricians can ask parents about their goals of care for their child and how they prioritize competing values. Because parents rarely think in these terms, we have found that asking parents, “What does it mean to you to be a good parent now that we have this new information?” or “What are you hoping for and what are you worried about?” may make it easier for them to articulate what is most important. In many circumstances, what families describe as their highest value may be in conflict with what we, their pediatricians, may choose for ourselves or what we believe may be in the child’s best interest. It is important to remember that pediatricians should acknowledge clinical situations with equipoise to respect parents’ values. If parents are allowed to drive decision-making, they will ultimately be more likely to persist with their chosen path without regret.21 A cognitive leap for many pediatricians is to acknowledge that SDM may lead to treatment choices that, respecting medical evidence, best align with families’ values but do not always lead to the outcome (eg, longevity) that a clinician might normally prioritize.

Before asking for a decision, pediatricians should explicitly ask parents what their preferred level of involvement is when making a decision like this. Pediatricians can normalize for families that some parents want physicians to guide them by making a recommendation, whereas other families already have an idea of what is best for their child and/or family and do not want a recommendation. A family may even defer the decision entirely to the pediatrician, which is within their rights in SDM. With prominent conceptualizations of SDM, it is a priority to give the patient or family, when clinically reasonable, the option to defer decision-making.22 

After ascertaining if parents want to participate in making the decision, it is appropriate to ask parents if they have a preference for a particular path at this time. If they have indicated that they welcome a recommendation or would like to defer the decision to you, then you should offer a recommendation on the basis of the parents’ values and your medical expertise. A relational approach to respecting parental decision-making autonomy highlights pediatricians’ responsibility to offering a recommendation if requested. A relational conception of autonomy acknowledges the central role of decision-makers’ relationships with others (including pediatricians) in making decisions and does not see their respectful guidance as paternalistic or undermining of their authority.23 

Some parents may express ambivalence about committing to a treatment plan, and in those circumstances, it may be helpful to employ motivational interviewing (MI) techniques to probe ambivalence and improve self-efficacy. With MI, it is assumed that behavior change is affected more by motivation than information.24 An MI approach might include asking a parent to describe what is difficult about each of the potential paths and what might be the benefit of following each of the paths. By “rolling with resistance” raised by a parent to choosing a path and not forcing a decision, the pediatrician can build essential trust and rapport needed to support the family through future difficulties. Although in medicine we frequently want to efficiently identify and treat any conditions that arise, families may need more time to adjust to new information and the consequences of choosing 1 path over another. Lacey’s family, now confronted with the decision of comfort care or tracheostomy, may need some time to determine how important it is to them to do “everything they can” to prolong her life while recognizing that these interventions are causing her suffering. It is not always immediately apparent to parents when the balance of quantity and quality of life has tipped from 1 to the other.

Before the conversation concludes, the pediatrician and the parents should either agree to a decision or agree to defer the decision until another time. In either circumstance, it is helpful to set a time for further discussion. Parents may want to pursue 1 treatment path but often will have other questions that arise or concerns that develop as a result of choosing a particular path. If the patient has a chronic condition, it is appropriate to revisit the decision at future points and to determine if other decisions need to be made or if barriers to conducting the decision need to be addressed.

Lessons emerging from research on SDM can inform how clinicians may best engage families in discussions. These approaches make use of best practices in communication including sharing serious news, responding to family emotions, describing treatment plans accurately to low health literacy and numeracy patients, indicating that there is >1 acceptable choice, eliciting the families’ values, and making recommendations on the basis of the families’ values.

     
  • ADHD

    attention-deficit/hyperactivity disorder

  •  
  • MI

    motivational interviewing

  •  
  • SDM

    shared decision-making

Dr Walter conceptualized and designed the article and drafted the initial manuscript; Drs Hwang and Fiks conceptualized and designed the article; and all authors reviewed and revised the manuscript, approved the final manuscript as submitted, and agree to be accountable for all aspects of the work.

FUNDING: Dr Walter has funding from the Cambia Health Foundation, and Dr Hwang has funding from the Milbank Foundation.

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Competing Interests

POTENTIAL CONFLICT OF INTEREST: Dr Fiks’ research team was supported by a Pfizer Independent Research Grant for work related to developing software to support shared decision-making in attention-deficit/hyperactivity disorder. He did not personally receive salary support; and Drs Walter and Hwang have indicated they have no potential conflicts of interest to disclose.

FINANCIAL DISCLOSURE: There are no financial relationships beyond what is already listed under the Potential Conflict of Interest; and Drs Walter and Hwang have indicated they have no financial relationships relevant to this article to disclose.