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.