TABLE 1.
Fundamental Processes (and Subprocesses) of Pediatric SDM for Both Simple and Complex Decisions
| The Expert Panel Recommendations |
|---|
| Determine if SDM is appropriate |
| Determine the ethically permissible treatment options |
| Possible ways to do this: |
| Use clinical judgement (if the options are obvious or standard) |
| Review the medical literature |
| Consult colleagues at the institute |
| Hold an interprofessional team meeting |
| Become familiar with the treatment options that will be offered to be able to answer the family’s questions |
| Reflect on personal biases and employ strategies to mitigate them |
| Establish a trusting relationship with the family |
| Provide an opportunity for the family to share pertinent clinical information (eg, past medical history, response to previous therapy, overall wellbeing before visit) |
| Identify the problem (diagnosis or signs and symptoms) |
| Assess the family’s current understanding of the clinical situation |
| Assess what the family wants to know (eg, more information, a second opinion, a recommendation) |
| Make clear that there are multiple treatment options |
| Make clear that there is a decision to be made |
| Explicitly invite the family (including the child, if possible and appropriate) to participate in the decision-making process |
| Determine the child’s role in the decision-making process |
| Factors that should be considered: |
| Child’s desired role |
| Child’s decision-making capacity |
| Child’s required participation in the treatment plan |
| Child’s familiarity with their illness |
| Relevant laws |
| Determine what type of information the family desires (eg, big picture or details) |
| Assess the family’s health literacy and tailor information to their individual levels of understanding |
| Determine the appropriate level of clinician directiveness |
| Factors that should be considered: |
| Parents’ desired level of directiveness |
| Clinical uncertainty |
| Preference sensitivity |
| Degree of clinical equipoise |
| Urgency |
| Present the range of ethically permissible treatment options (which may include the option of no treatment, if appropriate) |
| Discuss the benefits and burdens of each treatment option |
| Present data in a way that is useful and meaningful to the family |
| Elicit and clarify the family’s values, preferences, and goals |
| The depth of the process will vary based on: |
| Complexity of the decision |
| Family’s willingness to discuss these topics |
| Family’s needs |
| Provide the family with a recommendation (if appropriate) |
| Reflect on how personal biases may influence making a recommendation |
| For more difficult cases, consider holding an interprofessional team meeting to determine if what recommendation should be made |
| If possible, choose a recommendation that is in alignment with the family’s values, goals, and preferences |
| Discuss all ethically permissible treatment options with the family |
| If >1 ethically permissible option, give the family permission to choose alternative option |
| Ask the family what questions they have |
| Assess the family’s understanding and address any misconceptions or gaps in knowledge |
| Discuss the family’s ability to revisit the decision and change their minds at a later time (if possible) |
| If the family chooses an option that does not seem in line with their previously stated preferences, reassess their understanding |
| Clearly state the final decision (or plan if a discrete decision was not made) and confirm that the family agrees |
| Ensure the family feels supported in the decision |
| Create a feasible care plan that can be implemented and sustained |
The processes above are listed in what may be the most typical sequential order in which they might occur.