What is in the palliative care 'syringe'? A systems perspective.

ABSTRACT

The diffusion of palliative care has been rapid, yet uncertainty remains regarding palliative care's "active ingredients." The National Consensus Project Guidelines for Quality Palliative Care identified eight domains of palliative care. Despite these identified domains, when pressed to describe the specific maneuvers used in clinical encounters, palliative care providers acknowledge that "it's complex." The field of systems has been used to explain complexity across many different types of systems. Specifically, engineering systems develop a representation of a system that helps manage complexity to help humans better understand the system. Our goal was to develop a system model of what palliative care providers do such that the elements of the model can be described concretely and sequentially, aggregated to describe the high-level domains currently described by palliative care, and connected to the complexity described by providers and the literature. Our study design combined methodological elements from both qualitative research and systems engineering modeling. The model drew on participant observation and debriefing semi-structured interviews with interdisciplinary palliative care team members by a systems engineer. The setting was an interdisciplinary palliative care service in a US rural academic medical center. In the developed system model, we identified 59 functions provided to patients, families, non-palliative care provider(s), and palliative care provider(s). The high-level functions related to measurement, decision-making, and treatment address up to 8 states of an individual, including an overall holistic state, physical state, psychological state, spiritual state, cultural state, personal environment state, and clinical environment state. In contrast to previously described expert consensus domain-based descriptions of palliative care, this model more directly connects palliative care provider functions to emergent behaviors that may explain system-level mechanisms of action for palliative care. Thus, a systems modeling approach provides insights into the challenges surrounding the recurring question of what is in the palliative care "syringe."