Shared Decision-Making for Children with Medical Complexity and Their Caregivers in the Perioperative Time

CORE ELEMENTS OF SHARED DECISION-MAKING

Health care providers for children with medical complexity (CMC) often find themselves making treatment decisions without clear evidence and clinical guidelines. Well-intended providers and parents may feel compelled to do something, as the alternative can be uncomfortable. This all-too-familiar scenario can lead to overmedicalization, driven by parental worry and provider distress.¹

Shared decision-making (SDM) is a communication process whereby patients, caregivers, and providers share knowledge, preferences, and values to reach an agreement on a treatment plan.² SDM is particularly important for CMC, as limited evidence restricts clinicians’ ability to identify a best treatment option. In these situations of clinical equipoise, SDM is critical to ensure that the decisions made by health care providers and families align with the family’s preferences and values. Crucially, SDM is not a strategy to persuade families to select a particular treatment option. The core elements of SDM are described in Fig. 1, which brings together the essential elements of SDM under the different conversational processes of information gathering, deliberation, and decision-making, and can be used as a checklist.^3,4

Fig. 1.

Model of shared decision-making for children with medical complexity. (Adapted from Elwyn G, Durand MA, Song J, et al. A three-talk model for shared decision making: multistage consultation process. BMJ (Clinical research ed). 2017;359:j4891. https://doi.org/10.1136/bmj.j4891.)

SDM is composed of the exchange of information around decision-related knowledge, preferences, and values.² To facilitate successful SDM, families and providers should also address decisional self-efficacy and decision ownership.³ Later, we discuss each component and explore approaches to optimize each of these components within SDM.

Decision-Related Knowledge

Each decision-maker contributes their unique knowledge and experience to the SDM process. Providers bring the evidence base supporting why a decision is needed, including the definitions of treatment options, as well as the rationale, risks, and benefits, and the anticipated outcomes of each treatment option. When appropriate, the option to continue care without intervening should be explicitly explored with all stakeholders. Parents bring their lived experiences, historical and current knowledge about their child, such as temperament, tolerance of pain, effects of anesthesia, and outside considerations around timing. Together, clinicians and families should identify the urgency and timeline for implementing a decision.⁵ There is evidence that in urgent situations, caregivers primarily struggle with considerations of longevity over quality of life. By contrast, less urgent, long-term decisions such as whether to pursue gastrotomy tube placement or scoliosis surgery tend to be driven by different core values.^6–8

Decision support tools have been successful at improving decision-related knowledge.⁹ One such tool is the Option Grid (Table 1).¹⁰ In OPTION grids, information is laid out in table format where at least 2 treatment options are compared based on frequently asked questions. While this format is not comprehensive, it captures the key information about treatment differences and thus can be used as a resource to generate discussion topics between families and clinicians. To communicate quantitative estimates of risks and benefits, icon arrays (Fig. 2) are the gold standard for helping patients of various levels of literacy, education, and language preference better understand risks and benefits.¹¹ Web sites exist that can help generate personalized icon arrays.¹² When precise estimates of risks and benefits do not exist, clinicians should acknowledge the uncertainty surrounding this information. Families often are already aware of these uncertainties and have endorsed that acknowledgment of this uncertainty makes them feel more prepared to make a decision.⁵ No clear evidence base exists to guide these conversations around decision-related uncertainty.

Table 1.

OPTION grid

	Treatment a	Treatment B
What are the benefits?
What are the risks?
What is the survival?
How long is the recovery?
How painful is the procedure?
How long will I be in the hospital?

Fig. 2.

Icon array.

Families often seek to learn from other patients’ families’ experiences to help guide their decisions. These connections are frequently made through social media platforms and can potentially spread misinformation, such as the misconception that bracing stops curve progression in children with neuromuscular scoliosis.⁸ Therefore, narratives from other patient families should be approached with caution. Prior studies suggest that informational narratives can be more effective educational tools than informational brochures.¹³ Narratives that discuss the process by which a family made their decision could be helpful to guide other families faced with the same decision. However, narratives that focus on the treatment outcomes experienced by a family may be detrimental as they often become persuasive to families even though outcomes may differ significantly by patient.¹³

Preferences and Values

Understanding patient and family preferences and values is another core element of the provision of SDM. While these terms are often used interchangeably, values refer to what matters most to an individual when they are considering a decision.¹⁴ In contrast, preferences are the degree to which an individual favors a particular treatment option.¹⁴ By helping patients and families explore their values during decision-making, clinicians can support them in choosing a treatment that aligns with what matters most to them. Due to power dynamics within encounters, families may struggle to share their values and preferences. Particularly for CMC, inclusion of patient preferences is often overlooked.⁵ Although many CMC have neurodevelopmental conditions that may preclude their active involvement in decision-making conversations, caregivers usually have their own way of discerning child preferences and also have extensive historical knowledge of how the child might react to various aspects of a treatment process that could inform decision-making conversations.⁵

A child’s medical complexity and coexisting influence families’ preferences and values. Caregivers often wonder how coexisting affect expected treatment outcomes, but sometimes this information is unknown.⁸ Communicating this uncertainty can help caregivers better understand how to interpret population-level risks and benefits for their child. In children with neuromuscular scoliosis, caregivers are focused on reducing the impact of coexisting on their child’s life, which affects how they perceive each treatment option.⁸ Additionally, caregivers worry about potential higher risks of surgical complications due to a child’s underlying coexisting.⁸

Values clarification and preference elicitation exercises are structured tools designed to help clarify family values and preferences. For individual values clarification and preference elicitation, information-focused tools such as brochures and the previously mentioned OPTION grids can assist patients in understanding their values and preferences by comparing features of different treatment options. Additionally, more interactive tools, such as ranking and rating exercises, can help individuals identify their values and preferences by prioritizing or assigning weights to them.¹⁴ More complex forms of values clarification and preference elicitation also exist that are based on sophisticated mathematical models, typically developed through research, from which values and preferences are indirectly derived.¹⁵

Decisional Self-Efficacy

Decisional self-efficacy is the ability of the decision-maker to follow through with the steps to adhere to their decision.¹⁶ The care needs of their child profoundly impact caregivers’ lives. Thus, it is essential to evaluate how surgical choices affect both the caregivers and the patient. For instance, caregivers of children who selected tracheostomy tube placement describe how the care needs of tracheostomy tubes have led to more intensive home care responsibilities.⁶ Similarly, children with neuromuscular scoliosis may have mobility limitations during recovery that make transfers difficult and affect their ability to maneuver around the home.⁸ Decision-making conversations should include an assessment of potential barriers to treatment adherence that the family may face.

Preference for the Degree of Decision Sharing

Providers should evaluate how much families want to participate in decision-making. Factors like the urgency and stakes of the decision can influence family preferences. While decision-making control ranges from fully provider-led to fully patient-led, SDM can happen anywhere along that spectrum. Some families prefer clear, expert guidance from their providers, while others want information that supports more independent decisions. Families and providers consider various goals, such as maximizing function, quality of life, family and community experiences, or future independence. For some, the main goal may be minimizing trauma for the patient’s family, including their preferences about contact with the medical system. The control preference scale is a standard tool used to evaluate the desired level of control in decision-making.¹⁷

MULTIDISCIPLINARY CONSIDERATIONS FOR PERIOPERATIVE SHARED DECISION-MAKING

To navigate care decisions for CMC, parents and providers prefer SDM as a way to consider evidence, experience, knowledge, and values to reach clear treatment choices.¹⁸ This often involves forming multidisciplinary care teams that include family, social support systems, medical and nonmedical providers, and outpatient and inpatient care providers. The input from each team member should be considered and then combined into a shared decision that all stakeholders will support. This process can reduce the biasing effects of the disability paradox, in which able-bodied persons underestimate the quality of life of persons with disabilities.¹⁹ Individual biases can be minimized by maintaining the team’s focus on the child’s best interests (beneficence and nonmaleficence), the family’s autonomy, and the broader construct of justice.

CMC have extensive networks of people who are part of the care team.²⁰ CMC are often cared for by health care teams that include multiple subspecialists and health care systems. In addition to the provider teams, families usually seek input and decision support from other entrusted stakeholders, including clergy, teachers, parent partners, and others. There may be multiple family members, often parents, siblings, and extended relatives with multigenerational perspectives, who differ on what they consider the best treatment decision for the child’s care. For CMC, these individuals often span multiple generations and include parents, siblings, and extended families.²¹ It is essential to identify the roles of the primary decision-makers (parents/guardians) from those who are present to support or guide the decisions with the health care provider team.

Involving all stakeholders in the SDM process provides a strong foundation of deliberate cross-organizational care coordination among families, providers, facilities, and community resources.²² An example of collaborative care for CMC is convening multidisciplinary preoperative planning committees for perioperative care for CMC who are being considered for major surgeries. Participants may include surgical subspecialties, complex care, pulmonology, anesthesiology, hospital medicine, pediatric physical medicine and rehabilitation, pediatric intensive care, palliative care, and the patient’s family. Topics discussed may include each child’s medical conditions, goals of care, surgical risks and anticipated benefits, and family needs and preferences. These committees serve to minimize risk, optimize outcomes, and support SDM. How families prefer to be involved with this process may vary. Some families prefer the consensus recommendation of the clinical team and subsequent discussion in a more personal setting with a smaller group, while others opt for formal team conferences with all stakeholders present.

Coordination, communication, and collaboration among multiple subspecialists are critical parts of SDM for CMC. For many health care organizations, shared electronic medical records, informal conversations, and patient portals can accelerate and streamline the sharing of information asynchronously. In other settings, these communications can only be accomplished synchronously with direct conversations among all stakeholders. The Courageous Parents Network, an online hub that supports collaboration between families and medical providers with medical information, decision-making guides, care pathways, and lived experiences, can support teams and families when making complex decisions amid uncertainty.²³

Central to decision-making for CMC is the provider’s understanding of the priorities, values, culture, and perceptions of quality of life of CMC and their families. These care priorities vary across families based on the child’s condition, prognosis, family system, culture, values, faith, knowledge, experience, emotional state, and social factors.²⁴ Even within a single family, priorities may shift based on decision urgency and the child’s current state of health. Some families may value maximizing function, quality of life, family and community experiences, or future independence. Others may prefer to minimize hospitalizations and surgeries. Parents’ decisions may also be influenced by external factors, including external supports, social disparities, and health literacy. Personal experiences of prior treatments and experience with serious illness and death are additional influences on the decision-making process.²⁵ Together, these decision-making factors make parents of CMC the experts in their own child, with unique and personal perspectives regarding the personhood of their children, their approaches to uncertainty, and levels of health care trust and awareness.²⁶ The overarching goals of care or priorities in care should be reviewed often, deciding on each individual’s ideal balance of quality and quantity of life. Interventions can then be evaluated in the context of what each person values most.

Additionally, providers need a comprehensive understanding of the child’s functional abilities, limitations, and developmental prognoses to support each child’s best interests in the decision-making process as described in Fig. 3. For example, decisions regarding interventions that alter the body’s structure should include an understanding of the functional impact of that decision (eg, Will a hip osteotomy help my nonambulatory child to walk? Will my child eat by mouth if he gets a gastrostomy tube?) The World Health Organization’s International Classification of Function, Disability and Health clarifies the dynamic interaction of personal and environmental factors that contribute to function.²⁷ When creatively applied to children with disabilities, the “F-words” of function, family, fitness, fun, friends, and future can guide decisions that uniquely support each child’s participation in the activities that are of greatest importance to them and their families.²⁸

Fig. 3.

Framework for comprehensive understanding of child’s functioning. (From Organization WH. Towards a common language for functioning, disability, and health: the international classification of functioning, disability and health. 2002 and Rosenbaum P, Gorter JW. The ‘F-words’ in childhood disability: I swear this is how we should think! Child Care Health Dev. Jul 2012;38(4):457-63. https://doi.org/10.1111/j.1365-2214.2011.01338.x.)

An example of where perioperative SDM is critical is in neuromuscular scoliosis. This condition is a common and progressive condition in CMC and severe neurologic impairments such as complex cerebral palsy. Surgery remains the standard treatment, yet it is associated with moderately high complication rates. Both parents and providers anticipate postoperative improvements in each child’s sitting and positioning, pulmonary function, skin integrity, feeding tolerance and gut motility, comfort, and quality of life.²⁹ However, there is limited evidence regarding the functional, caregiver, and quality of life outcomes of surgery for neuromuscular scoliosis.³⁰ Therefore, surgical risk assessments and shared decisions are essential for all stakeholders who find themselves making decisions in the face of uncertainty.

CMC are at high risk for complications after surgery for neuromuscular scoliosis and utilize significant hospital resources in the preoperative and perioperative periods. In one program of preoperative evaluation, 100% of the CMC needed 1 or more assessments/interventions to address respiratory, hematologic, cardiac, and neurologic conditions before proceeding to surgery.³¹ Wound-related (13%) and respiratory complications (12%) remain the most common postoperative complications.³²

ETHICAL PERIOPERATIVE DECISION-MAKING

Providers should integrate several ethical considerations during perioperative SDM.

First, as is true for all of pediatrics, medical decision-making differs from the adult context because pediatric patients generally do not make their own medical decisions. In the United States, surrogate decision-makers—usually parents—have the authority and the responsibility to make decisions on behalf of their children until their children reach the age of 18 years. For decisions pertaining to surgery and anesthesia, parental authorization is formally obtained through the process of “informed consent.” However, a more accurate term is “informed permission,” given that consent is something one can truly only provide for oneself. Let us again compare adult and pediatric settings.³³ For adults, the ethical rationale for obtaining informed consent is the principle of respect for autonomy—that is, a patient’s right to make their own decisions based upon their preferences and values. Autonomy is predicated upon the patient being able to make decisions, free from the controlling influence of others and the limitations that prevent meaningful choice (such as inadequate understanding).³⁴ By contrast, decision-making, and therefore informed “consent” in pediatric care, is more complex both in theory and in practice.

Many pediatric bioethicists argue that the primary guiding standard for parental decisions should be the “best interest standard.” Surrogates are expected to choose “what promotes [the child’s] interests or is most conducive to his or her good.”³⁵ The primary ethical principles at play are beneficence—the duty to act for the benefit of another—and nonmaleficence—the duty to abstain from causing harm. Surrogates and clinicians (to some extent) must engage in a weighing of the relative benefits and risks of the intervention when deciding whether or not to proceed. Recognizing the complexities of family life and the competing demands that are placed on parents (eg, the need to earn an income and raise multiple children), some ethicists advocate for a standard of “constrained parental autonomy” instead of “best interests” for pediatric decision-making. One interpretation of this model is that it “recognizes the wide scope of parental authority, but constrains this autonomy to protect children from parental exploitation, abuse, and neglect, as well as to ensure that parents provide children with the basic interests or needs necessary to create and implement their own life plan.”³⁶ Potential benefits of this standard include that it does not require parents to “deny/ignore their own interests, thereby promoting the family as a valuable institution for child rearing and self-fulfillment. [And], it allows parents to make intrafamilial trade-offs, provided that their decision does not sacrifice the basic needs of any child member of the family.” In this way, parents who choose a path for their CMC that meets the child’s basic needs and avoids causing harm can be considered ethically acceptable, even if another option exists that clinicians feel would be better for the child. Such disagreement can cause tension, but clinicians need to practice perspective-taking and seek to understand the challenges parents face before concluding that a parent’s decision is unethical.

Although children cannot provide valid informed consent (due to legal requirements), as they mature, their ability to provide meaningful assent usually increases. Assent refers to a minor patient’s active agreement to participate in a treatment or intervention.³⁷ Two important requirements for assent are that (1) the child has the capacity to participate in the decision-making and (2) the clinician has engaged in several steps to ensure the assent is meaningful.³³ Capacity involves understanding, appreciation of implications, ability to weigh information, and ability to communicate a choice.³⁸ Capacity is also decision-specific. For example, a 10 year old child with left hemiplegia might have the capacity to indicate that she does not want intravenous catheters (IVs) placed in the dominant arm, as it interferes with her ability to use her tablet with her most functional hand. However, she probably does not have the capacity to decide whether or not to proceed with a spinal fusion. In another example, a teen with neuromuscular scoliosis, a tracheostomy, and a gastrostomy tube may have the capacity to decide when certain cares are provided but may not have the capacity to decide whether to undergo a posterior spinal fusion. A checklist of core elements to engage patients in assent for decision-making is provided in Fig. 4 based on the guidance of the American Academy of Pediatrics Committee on Bioethics.³⁹

Fig. 4.

Checklist to assess for child involvement in decision-making.

The degree to which CMC can participate in decision-making will vary significantly based on their cognitive capabilities and age. In studies of adolescents and young adults with advanced heart disease and cancer, many adolescents prefer patientled decision-making, while their parents tend to prefer a shared approach.^40,41 Parents of CMC may become accustomed to making a great deal of decisions and having significant authority over their child’s care. If or when their children develop greater capacity, it can sometimes be challenging for them to renegotiate who has decision-making authority. Clinicians may make a practice of speaking directly to the patient to allow space for explicitly soliciting the child’s input to facilitate a natural renegotiation of roles during a clinical encounter. Communicating with the child/adolescent without the parents present may help them be more comfortable sharing their preferences. Palliative Care clinicians, social workers, or counselors may provide additional support and amplify the patient’s voice. Clinicians should periodically facilitate frank conversations about the shifting of decisional authority and how both parents and the patient will remain supported by the team.

PALLIATIVE CARE INVOLVEMENT DURING DECISION-MAKING

Given the overall medical fragility of CMC, early introduction of palliative care is often recommended, even though it is commonly thought of as something to discuss near the end of life. When considering complex surgical procedures, palliative care involvement can play a crucial role in treatment decision-making. There are many opportunities to bring up the topic of palliative care with families of CMC.

One approach to introducing the value of palliative care is to partner with families in the understanding that CMC often have unpredictable journeys with unavoidable coexisting that necessitate significant treatment decisions. Therefore, it can be helpful to have the longitudinal support of a team whose expertise is in helping patients and families clarify their goals, values, and preferences. This ongoing process of considering and articulating goals, beliefs, and preferences can help families make decisions that are aligned with their values. A palliative care team can also provide families with a safe space to voice concerns or uncertainties that they may not feel ready to discuss with their child’s primary team.

The purpose of pediatric health care is to support the best interests of the child, including their functioning, comfort, longevity, and participation in activities most meaningful to the child and family. Yet as medical and surgical technologies advance, pediatricians, parents, and other family caregivers may need to consider when it is ethically supportable or advisable to use available interventions to sustain the life of a child who is severely ill.⁴² Because so much of the focus and momentum in medical care is directed at intervention and cure, families can sometimes find themselves swept along on a path of care with which they are uncomfortable. However, in some instances, the available treatment options may pose more risks than benefits for CMC and their families, and decisions are made to forego treatment. In such cases, it is recommended that the entire care team and family support the decision to minimize regret and guilt as the condition naturally progresses and becomes life-limiting. Respectful, thorough, and open conversations are essential, and may include palliative care providers and ethicists.

Children with pre-existing limitations of resuscitation may still be candidates for various interventions that require anesthesia or sedation. Such options may include the placement of long-term vascular access, gastrostomy or tracheostomy tubes, devices to manage seizures or treat spasticity, or other procedures that are aimed at improving the child’s comfort and quality of life.

Historically, clinicians often believed that “Do Not Resuscitate” (DNR) orders had to be suspended during the perioperative period, given that the provision of anesthesia can precipitate hemodynamic instability and/or cause respiratory depression, and routine anesthetic care involves intervening to maintain airway, breathing, and circulation. Is it practical or possible to honor a patient’s wishes to avoid elements of a resuscitation while still proceeding with a procedure under anesthesia? The American Society of Anesthesiologists statement on the handling of “Do Not Resuscitate” orders in the perioperative period advises “required reconsideration” of a patient’s code status in the context of the proposed intervention. This statement recommends that clinicians spend time learning about the patient’s values, goals, and the reasoning behind the current limitations placed on resuscitation. From there, clinicians and patients can choose 1 of 3 potential avenues: (1) full attempt at resuscitation (suspension of the DNR orders), (2) limited attempt at resuscitation defined with regard to specific procedures, or (3) limited attempt at resuscitation defined with regard to the patient’s goals and values.⁴³ Anesthesiologists and surgeons are obligated to be clear with patients about what components of the procedure are nonnegotiable. For instance, a specific procedure may require that the patient be intubated, and the patient may not be able to be quickly weaned from respiratory support following the operation. However, if a patient becomes hemodynamically unstable during a case, it may be reasonable to ask the team to employ vasopressors such as epinephrine and not perform chest compressions if a patient’s primary goal is to avoid rib fractures and a painful intensive care unit course.

DECISION-MAKING FOR VULNERABLE POPULATIONS

Health literacy is critically important to supporting SDM. Healthy People 2030 defines individual-level health literacy as the degree to which individuals can find, understand, and use information and services to inform health-related decisions and actions for themselves and others.⁴⁴ Health literacy has been associated with various health outcomes and with health disparities.^45–48 One potential mechanism underlying these associations is that individuals with higher levels of health literacy have stronger patient–provider communication, enhanced SDM, and greater involvement in their medical care compared to those with lower levels of health literacy.^49–51 For example, one study found that adult primary care patients with adequate health literacy were significantly more likely to prefer patient-involved decision making, controlling for age, race, ethnicity, and gender, than those with limited health literacy.⁵¹ Health literacy has also been identified as a potential barrier to SDM in the pediatric context.⁵² In one study among parents presenting with their child to an urban public hospital, those with lower health literacy were more likely to report preferences for relying on the doctor’s knowledge and for leaving decisions up to the doctor.⁵³

Based on this existing literature, a number of strategies have been developed for providers and health care systems to support SDM with patients with limited health literacy. An expanded model of SDM incorporates health literacy concepts, highlighting the points of intersection between these constructs.⁴⁹ This model highlights 2 tiers of interventions to support meaningful patient engagement in SDM for those with limited health literacy. The first tier includes a number of design features that can improve patient decision-related knowledge needed for SDM: reducing the amount of text and medical jargon; presenting essential information either by itself or first; presenting numerical information in ways that make sense to patients; and adding video to verbal narratives.⁴⁹ Additional guidance on presenting numbers has been provided by a systematic review of risk communication strategies within SDM that showed the importance of including visual strategies, such as icon arrays described earlier, rather than verbal communication of risk alone.⁵⁴ The second intervention tier in the model highlights the integration of health literacy into SDM training programs for health professionals, as training in health literacy and training in SDM are often not integrated. To enhance the usefulness of SDM strategies for patients across levels of health literacy, others have highlighted the importance of including patients with limited health literacy in the development of decision aids and related tools.⁵⁵

In examining the impact of health literacy on SDM, the intersection of health literacy, language proficiency, and culture is also critical to consider.^56,57 Although limited research has been conducted in the context of SDM, synergistic effects between health literacy and English proficiency have been observed on outcomes such as attending follow-up appointments and meeting cancer screening guidelines.^58,59 In the contexts of patient engagement and patient–provider communication, a study among English-speaking and Spanish-speaking primary care patients showed that low health literacy and limited English proficiency were each associated with worse patient-reported communication with providers, and that the impact of limited health literacy varied by language concordance between patient and physician.⁶⁰ A systematic review that examined the interrelationships between health literacy and patient engagement in health care communication highlighted the need for empirical studies to examine these relationships among immigrant populations.⁶¹ While research to date is limited, this existing literature suggests that patients with limited health literacy and limited English proficiency may struggle most with engagement in SDM, and may benefit from additional support from care teams and other supports such as interpreters trained in SDM.

Most efforts to improve SDM have focused on English-speaking populations. With the language diversity within the United States, this can widen gaps in care quality between families who prefer English and those who prefer languages other than English.⁶² Thus, future research should purposefully examine how to improve SDM for families who prefer languages other than English.

In developing interventions to address these intersectional issues of health literacy and English language proficiency, changes at the level of the health care organization have been recommended to develop culturally suitable, health literate health care organizations.^63,64 Such changes will likely benefit patient engagement in SDM across levels of health literacy and language proficiency. These organizational strategies include increasing the diversity of the health workforce to better reflect the characteristics of the patients served, and providing adequate time for interpretation.⁶³ Other attributes of health literate health care organizations that may benefit SDM include strategies for providers and staff, including using health literacy strategies such as teach-back in patient–provider communication to confirm understanding at multiple steps; designing print and audiovisual content that is easy to understand and act on; and providing easy access to quality health information.⁶⁵ Inclusion of patients with limited health literacy and limited English proficiency in all of these processes is critical to developing effective SDM approaches.⁴⁹

SUMMARY

Perioperative decision-making for CMC is complex but should involve a multidisciplinary group of caregivers and providers to reach a treatment plan that is best for the families values and preferences. Opportunities for tools to facilitate higher quality SDM for CMC should be further explored for use in clinical practice.

KEY POINTS.

• Shared decision-making can help families and providers select treatment options that consider the child’s best interests.

• Core elements of shared decision-making include decision-related knowledge, preferences and values, family decisional self-efficacy, and preference for degree of decision sharing.

• Families face unique challenges in shared decision-making, such as surrogate decision-making, complex health systems and teams, and uncertain outcomes for each treatment option.

CLINICS CARE POINTS.

• Ask families how much they want to participate in decision-making.

• Assess for barriers families may have to meet the care needs during recovery for each treatment option.

• Explicitly ask for the child’s and caregivers’ preferences and values.

• Clearly identify all viable treatment options, including explicitly stating that watchful waiting is an option.

Abbreviations

CMC

children with medical complexity

DNR

Do Not Resuscitate

SDM

shared decision-making