Directing the Narrative to Define and Present Standardization in Palliative Care

We have all been there. A dinner party, an Uber ride, a first date. Someone innocuously asks, “So, what do you do?” If you are anything like me, you immediately jump into a mental calculus about how to respond—a combination of sizing up the other person and their familiarity with health care, as well as how much conversation I am actually interested in having (particularly in that Uber ride). “I'm a researcher who studies how to improve healthcare.” Technically, not a lie, even if decidedly ambiguous. If I am open to a conversation, I might offer a bit more transparency and say, “I study how to improve healthcare systems so that they take better care of people with really serious illnesses and their families.” But sometimes, although infrequently, I will start off by labeling myself as a palliative care researcher.

Let me be clear, it is not that I am at all ashamed of what I do—quite the opposite. My work and my connection to palliative care and hospice are some of the greatest sources of pride and purpose in my life. As a beneficiary of palliative care myself, I have witnessed the power of attending to suffering and creating opportunity for beauty and meaning in the most difficult times of life. Whenever I encounter someone whose loved one might benefit from palliative care services, I never hesitate to suggest it as an option. Yet in day-to-day nonacademic life, I wonder—is it absolutely necessary to use the term “palliative care,” and what is the added value of doing so?

In this issue of the Journal of Palliative Medicine, Trivedi and colleagues report that 71% of the U.S. population is unfamiliar with the term “palliative care.” Some might argue that an individual with no serious health concerns need not know the term “palliative care,” whereas others might contend the general public ought to recognize our field's deep expertise, just as they recognize the highly specialized expertise of, for example, oncology or cardiology. Although important to know where we stand vis-à-vis the general population, I would suggest that this is perhaps a distal target, and that, first, our work remains to solidify ourselves within our professional arenas.

Within the health care community, we are all painfully aware of the persistent misconceptions that many of our colleagues have regarding who are and what we offer. We have been told that a patient or potential research participant is not yet “ready” for the “the grim reaper service,” ¹ despite evidence that palliative care services improve outcomes across the disease trajectory. Conversely, we find ourselves puzzled when a colleague refers a patient for nebulous reasons, and is unable to effectively discriminate between a need that is better addressed by a palliative care specialist versus another service, such as case management, social work, or psychiatry. And admittedly and understandably so, in our initial fervor to build relationships, we oftentimes accept(ed) such vague undefined consults. Yet, with many palliative care programs now increasingly overstretched, it is imperative that we assist health care systems to adopt structures and policies that recognize palliative care specialists as an important resource to address suffering, rather than the resource of default or convenience. ²

We often are frustrated when others fail to recognize us, to leverage our talents effectively, and to integrate us into the fabric of health care delivery and policy. Yet, is that a fair expectation when we ourselves have trouble defining and presenting ourselves in a consistent, explicit, and uniform manner?

Our clinical programs lack standardization across many domains such as services offered, clinical composition, and indications. The composition of palliative care services varies widely between institutions, yet we implicitly argue that “palliative care” has uniform benefits, as would a carefully compounded drug, even if we have evidence for individual components of palliative care (e.g., symptom management). Similarly, the variability between clinical services regarding what they consider an “appropriate” indication for palliative care consultation may perpetuate ambiguity regarding who we are and what we do. For example, some programs (perhaps due to bandwidth and resources) restrict their efforts to more end-of-life management; in contrast, other programs offer to manage chronic noncancer pain. With such variability, can we blame our colleagues for not knowing when and why to reach out to us?

Furthermore, our evidence base is heterogeneous, and our published interventions often lack a clear explication of how each of their components interacts to yield hypothesized outcomes. In an effort to put our best foot forward, we often use disparate evidence to make the case that palliative care “works.” When a new study of “palliative care” is positive, we excitedly rush to disseminate it, oftentimes without the nuanced messaging of what the intervention actually was, and whether it is relevant to argument we are trying to make. Was it an inpatient or an outpatient intervention? What were the critical and essential components that “moved the needle?” Who delivered the intervention and what was their training? Admittedly, when we represent palliative care with such imprecision, we conveniently fall back on the notion that we are promoting palliative care as an approach or philosophy of care. Yet, one would hope that in 2019, we can all agree upon a palliative approach to care as synonymous with and a mandatory component of high-quality health care. Given the variability in our research interventions and in our clinical programs, instead of continuing to justify palliative care as a broad philosophy of care, perhaps it is time to consider a more fine-grained agenda of focusing on what we specifically do and how we do it, to maximize the efficiency and effectiveness by which palliative care is implemented. By directing the narrative around what specific services we deliver, we can accomplish two goals. First, we can enable nonpalliative care colleagues to precisely identify appropriate reasons to integrate our expertise (vs. other services), allowing us to target our efforts for maximal effect. Second, improving our understanding of the mechanisms of our work will allow us to isolate specific components of our “palliative toolkit” that can be refined and disseminated in population health-style approaches.

Early on, our eagerness to legitimize our field has earned us our much-deserved seat at the table. Yet, what has brought us to this point today is likely insufficient to afford us the nuance to be able to continue to advocate for ourselves to sustain and expand our presence and impact. Unless we define ourselves strongly and consistently (while still allowing flexibility to meet our patients' needs), we invite others to misrepresent us in a way that restricts our potential. Now, more than ever, our messaging requires specificity, and our field requires us to be in command of that message.