A Proposal for Revised Conceptual Model (Figure 4)
Based upon these findings we propose a new conceptual model for SDM in this population, which would unfold in three, sometimes overlapping stages. Stage I, pre-SDM, would include usual care of the child and start well before the point at which a choice is needed. In some cases, such as in children with progressive neuromuscular weakness, the potential future need of a choice regarding tracheostomy placement may be raised in routine clinical encounters.
Stage 2, SDM, would start with screening followed by consultation with pediatric pulmonary and palliative care to determine if a formal SDM process is merited at that time. If so, a team formation process would ensue in which the unique combination of people and information necessary for SDM in each case is gathered. Finally, the team would enter a deliberation process that includes the three core elements cited by the AAP and ATS guidelines: information exchange, deliberation, and decision5,20.
The final stage would be a multi-dimensional evaluation of the SDM process. Patient centered measures such as “CollaboRATE” developed by at the Dartmouth Center for Shared Decision Making22would evaluate how effective the SDM process was from the family perspective. Breaking down the process into discrete but flexible steps enables measurement of the process. For example, one could measure if and when a SDM team was formed, number of days that the team was in existence and the composition of its members. Formal team formation enables evaluation of the efficiency and efficacy of team functions such as communication. Health outcomes and health care utilization would also be measured.