Pediatric Chronic Critical Illness: Let us focus on the big picture

“…for the test of a civilization is in the way that it cares for its helpless members”

– Pearl S. Buck

In this issue of Pediatric Critical Care Medicine, Hirschfeld et al [1] report the results of a mixed methods multidisciplinary survey across one large institution of health care providers (HCP). In the most comprehensive assessment in a single pediatric institution to date, providers shared their perception on communication challenges between team members when caring for chronically critically ill (CCI) children and further shed light on priorities for improvement.

When caring for this special population, providers perceived that inpatient teams did not collaborate well, handoffs were not comprehensive, and ownership of decisions (including goals of care) was lacking. They reported high levels of conflict and low levels of consensus. They were not confident of their communication abilities—not only with families, but even in some cases with their colleagues.

The qualitative piece explored providers’ perceptions on priority challenges and possible improvements for communication. These open-ended questions answered by an unusually large number of multidisciplinary respondents (>800) allowed for thick descriptions, innovative ideas, and clear themes on how to broaden our focus when caring for these patients. The greatest challenges identified were “absence of a meaningful team”, missing the “big picture,” and time (including timeliness of discussions). Team collaboration, continuity, and communication were the highest priorities for suggested improvements.

The populations seen in today’s ICUs are shifting. The successes of increased survivability and decreased mortality rate [2] are giving way to a steady increase in morbidity, complexity, and technology dependence for patients [3]. This trend is expected to continue, and is not unique to the ICU setting[4]. Acute care teams, ICUs, and training programs continue to be designed to take care of the briefly acutely ill, and are not adequately staffed or organized in a way that address the challenges of the CCI patient. What’s more, the appetite of hospital administration, leadership and policy-makers to allocate resources to this issue is anemic at best, unclear of effective interventions. This paper is a call to action for the healthcare system to confront the challenges that clinicians encounter when caring for this relatively new population. As we further examine three of the highest priorities for improvement from the respondent HCP’s perspective, we underscore the complexity of achieving each priority.

To improve team continuity, respondents suggest creation of a CCI team or primary attending system. While this may certainly improve continuity and perhaps better define who is “driving the ship” it would also require substantial additional resources to staff since these HCP would likely be in addition to the service team [5]. Institutions may expect to see financial benefits for these changes either by reduction in patient length of stay or reduced staff turnover. In the adult ICU literature, continuity has been trialed with nurses or social workers. Even when an intervention does seem to reduce patient length of stay, as it did in one study [6], non-physician clinicians often confront challenges given the hierarchical structure of HCP teams which limit their effectiveness unless attendings are in agreement with their bigger picture approach.

Collaboration is also an essential part of successful teamwork, but seems elusive, even when all the HCP are invited to the table. Physicians frequently perceive collaboration at higher levels than non-physicians [7] and often nurses do not participate in family meetings even if present [8]. Shifting the balance of whose contributions are welcome in interprofessional discussions will take more than the implementation of recommended meetings [9]. Meaningful participation from diverse team members will be necessary to achieve consensus on treatment plan options. If the logistical hurdles can be overcome to bring team members together, there are some promising educational programs to assist inter-specialty clinicians reach consensus on prognosis and treatment options [10] and examples of formalized multidisciplinary weekly discussion [11, 12].

Finally, optimal communication is essential when treating CCI patients, and HCPs are asking for more training. What is required, however, goes beyond the skills to communicate the complicated treatment options to families. HCPs must create a human connection, stop talking, actively listen and find common ground [13]. They must navigate complex human emotion and separate their own value judgments of “what I would want if this were my child” from the values the family is expressing. On the other hand, some families do not want the decision to solely rest on their shoulders and would benefit greatly from a recommendation based in their values; recognizing this requires nuanced assessment, and a variable approach [14]. To support families in this way requires the pragmatic communication skills of shared decision making[15] as well as training in the ethics of shared decision making. To listen for another’s values and prioritize them in guiding a treatment plan requires curiosity, humility, and compassion.

Hirschfeld et al set the stage nicely for further empirical investigation and rigorous examination into which interventions influence family and team experience. A necessary next step may be in reaching consensus on how we define this population (e.g., CCI, complex chronic conditions, long stay PICU patients, or medically complex children). Without research conducted on the same population of patients, we will hinder the efforts to advance the field. Future work must also examine the perspective of these families and their daily challenges and priorities for improvement. As a critical care community, we are morally responsible to adequately address this vulnerable population’s challenges, particularly because they are the unintended consequence of our success.