Discussion
Our study is the first to systematically analyze the complex ecosystem
in which SDM occurred in a cohort of children with chronic respiratory
failure. Prior research on this population has addressed interactions
among and opinions of stakeholders in SDM. Hebert et al reviewed 19
transcripts of family-physician conferences regarding tracheostomy
placement and concluded that physicians emphasized benefits while
minimizing risks14. Nageswaran et al interviewed 56
caregivers of 41 children who received tracheostomies and found that
decisional satisfaction was high15. A study that
elicited the informational needs of caregivers from 43 families who had
faced a decision regarding tracheostomy placement demonstrated that
families wanted comprehensive information, including what life would be
like at home with a child with a tracheostomy. It also demonstrated that
being presented with the option not to perform a tracheostomy was
reasonable16. Other studies asked physicians to
describe how they go about a shared decision making
process17,18.
Two articles allude to how systems in place do not serve the needs of
the SDM process18,19. In a Lancet editorial Fine-Gould
writes: “For children in ICUs, the health-care professionals involved
in making decisions about initiating long-term ventilation are usually
not involved in ongoing care once children leave the ICU so a
dissociation can appear between the short-term goals of discharge from
ICU or hospital and the long-term care goals19.”
Large teams with frequently changing members were noted to complicate
decision making18,19. Most respondents in a survey of
neonatal and pediatric ICU physicians agreed that current ICU systems do
not meet the needs of chronically critically ill
children18. Fine-Gould recommends reevaluation of the
process of initiating long-term ventilation and suggests focusing on the
child’s care goals and an ethical framework19.
This current study has several limitations. It is a retrospective chart
review with descriptive data. Patients were not screened systematically
for the protocol, but rather identified by the members of the working
group as they conducted their usual clinical duties. Due to limited
available evidence in 2016 when the protocol started, the “12 key
questions” were designed by the working group based upon their own
clinical experience. Of note, numerous elements of these 12 questions
were consistent with recommendations in subsequently published clinical
SDM guidelines5,20. Some parts of the protocol may
have been accomplished in real time, but not found on chart review and
therefore not counted as accomplished.
The patients in this cohort were medically complex, and heterogeneous
both medically and psychosocially, which is similar to prior studies of
children with CRF. Two prior studies included a greater proportion of
patients who received tracheostomy or long-term
ventilation15,16. This is attributable to differing
methods of patient recruitment. Neither this study nor prior studies
prospectively recruited patients from the point where SDM started.
To our knowledge, this is the first study to document the number of
services encountered by each child with CRF during a single hospital
stay. Our finding that each patient encountered a mean of 17.1 services
was striking, but not surprising. Although this number could be
overwhelming for any family, counting the number of services grossly
underestimates the number of individuals encountered by a patient during
a hospital stay. Physician-led services often function in teams
comprised of an attending, residents and students, all of whom rotate
weekly or monthly. Nurses, respiratory therapists, physicians and other
personnel all change shifts at least once per day.
Another striking finding in this study was the challenge of locating
documentation of information specific to the needs of SDM. This
information was seldom found in one easy to review location, but rather
was documented by different providers at different times in different
ways. This point is illustrated by the need to eliminate 2 of the 12 key
questions from chart review. Overall, the fragmentation and lack of
clarity of the information specific to the SDM process found on chart
review paralleled the barriers to clear communication of this
information in real time among health care professionals.
Taken together, these findings demonstrate a medically complex
heterogeneous population cared for by a large number of health care
professionals with no clear or standardized means of communicating with
each other regarding the information deemed integral to reaching a
decision. Such a complex and important decision clearly requires
teamwork and “Communication is the essential foundation of an effective
team21.” Examination of the PICU through the lens of
a microsystem model sheds light on the systems in place which can make
it challenging to form an effective SDM team around each child.
A clinical microsystem is defined as “a small group of people
(including health professionals and care-receiving patients and
families) who work together in a defined setting on a regular basis (or
as needed) to create care for discrete subpopulations of
patients9.” The anatomy and physiology of a
microsystem is often described through the 5 Ps: purpose, patients,
professionals, processes, and patterns9. Figure 3
compares the 5Ps of a typical PICU to those observed in 2 of the cases
in this cohort. The pediatric intensive care unit has the broad mission
of treating acute, life-threatening problems, in a relatively discrete
timeframe. By contrast the shared decision making process has the
narrower goal of reaching a single decision, typically in a longitudinal
manner. Case 1 and case 2 illustrate the heterogeneity of this cohort
psychosocially as well as medically. One child initially had no health
insurance and hailed from a single parent, non-English speaking family
with an unstable living situation. The other child lived in an
economically stable home with two English-speaking parents, and
consistent health insurance.
The PICU is staffed by a core multidisciplinary team with clearly
defined members and roles. Communication patterns are built into daily
routines through patient-centered rounds, structured EMR notes,
multidisciplinary rounds and sign-outs with shift changes. This pilot
program for SDM was undertaken without any change in roles or work-flow.
At the end of the first year, the SDM process had only occurred in one
case, a problem the investigators attributed to lack of a team leader.
Palliative care was then recruited to shepherd the process with a
subsequent increase to an average of 9 patients/year for whom the SDM
protocol was pursued. Beyond the informal designation of “quarterback”
assigned to the palliative care physician, no specific roles were
assigned to the health care professionals participating in the SDM
process. The limitations of this approach are evident in the finding
that the patient decision aide included in the protocol was only given
to 7/29 patients.