TABLE 2.

Additional Processes (and Subprocesses) of Pediatric SDM for Complex Decisions

The Expert Panel Recommendations
Hold an interprofessional team meeting
This can be used to:
Determine which treatment options should be offered
Determine the recommendation (if one is being provided)
Ensure the clinical team understands the reasoning for a decision
Ensure the clinical team is on the same page so their communications to the family are consistent
Manage moral distress by debriefing with the care team after a difficult case
Establish an appropriate setting
Use a quiet room that ensures privacy
Ensure other clinical responsibilities are covered
Silence phone/pager
Be seated
Have tissues available for the family
Face the family (not a computer)
Use the child’s name
Discuss what the clinician and the family each consider to be the main problem
Assess the parents’ desired roles in decision-making
Determine if family wishes to include additional stakeholders in the decision-making process (eg, grandparents, religious elders)
Invite additional stakeholders to participate in the decision-making process
Regularly reassess the processes of SDM that can be personalized (eg, the family’s desired level of directiveness, their desired roles, their desired type of information)
Explicitly acknowledge uncertainties and the limitations of data (eg, center–center variability, generalizability)
Discuss how each treatment option aligns with the family’s values, goals, and preferences
Offer the family additional multidisciplinary supports for deliberation (eg, clergy, psychological counseling, social worker, written information)
Assess the family’s interest in a family care conference and use, if desired
Offer the family time to reflect on the decision (if possible)
Offer a follow up conversation with the family
Offer moral distress management for involved clinicians

The processes above are listed in what may be the most typical sequential order in which they might occur.