Duke University Health System (DUHS) is changing the way it cares for seriously ill patients through a palliative care initiative that aligns the delivery of care with patients’ goals and treatment preferences.
More than 10,000 Duke patients die each year. Ideally, all of those patients should have the opportunity to discuss their goals in the last six months of life, a target that DUHS and palliative care leaders set in 2021 as part of the Goal Concordant Care Initiative.
Eighteen months later, the system is well on the way toward meeting target, and more than half of all Duke Health patients have a goals-of-care conversation documented in the last six months. It’s a win-win—for patients and providers.
“Making sure that patients’ goals are documented, and seen by health care providers, is a high priority for us,” said Professor David Casarett, MD, MA, chief of Palliative Care at Duke Health, at a recent Medicine Grand Rounds on the topic. “It’s not enough to encourage these conversations; we also need to make them readily visible and available to clinicians, so we can be sure that each patient’s goals and preferences are reflected in the care plan.”
Goals-of-Care Conversations
Goals-of-care conversations are an essential first step in ensuring that care that patients want is what they are receiving throughout their life.
“We really should be having those conversations throughout a patient’s illness,” Casarett said. “One big lesson in this initiative is that we shouldn’t wait until a patient is near the end of life to learn about their hopes and fears and priorities. If we’re going to take good care of a patient, we really need to know what's important to that person so we can help them make medical choices that are right for them. These conversations are an essential part of good health care, like hand hygiene.”
There is evidence that goals-of-care talks result in better care for patients, and they can significantly impact downstream health system costs. Research also shows that when these conversations happen, patient anxiety is reduced. Quality of life, mood and trust in the health care system improve, and costs and acute care utilization are reduced.
Although most patients generally get the care they want, a small minority—perhaps 10%—get treatment that they don’t want. That may be a minority, but scale figure across a health system that cares for hundreds of thousands of patients, and that translates into thousands—or tens of thousands—of patients who are receiving treatment that’s more aggressive and expensive than what they want, Casarett pointed out.
“That's huge for any intervention, especially if the intervention is a 15-minute conversation,” Casarett added. “This is exciting and innovative. Other health systems working on this issue are focusing on training or identifying these conversations via electronic health records. What is unique about Duke is that we have also done those things, but we’ve tried to think about this much more holistically.”
Design Thinking
Duke Health’s holistic approach to systemic behavioral change utilized out-of-the-box design thinking—a mindset for problem-solving and innovation that puts real people and their experiences at the center of the design development process.
In promoting goal-concordant care, the palliative team looked first to a core tenet of design thinking: good products put knowledge about how to use them in the world. For instance, universal goals of care templates were developed that walk providers through the conversation and documentation process. That was supplemented by a video library that can be accessed in the moment via a Badge Buddy QR code, making it easy for clinicians to get just-in-time training right before initiating a conversation.
Duke assumed its physicians already possessed a good idea of how to have goals-of-care conversations and encouraged them to first have more of them based on the information that was put out, then document it through a robust data reporting system that was built into Maestro Care (Epic), Duke Health’s unified electronic medical record and clinical care application. A scale of care via an advanced care planning tab was added to Epic that changes color when new content is entered, putting that relevant and timely data at providers’ fingertips.
Most of the conversations were attributed to Department of Medicine (DOM) clinicians, who have been key in driving the Goal of Concordant Care initiative across the health system. About 80% of goals-of-care conversations in the last six months of life were documented by DOM clinicians, and a little less than half of these were documented by house staff.
Providers were also given feedback to try to improve the frequency and timing of their patient conversations and a feedback loop was created that allows any clinician in the health system to see answers to a number of prompted questions on the clinician’s experience.
Ideas on addressing the quality of the conversations were crowdsourced using a grant from Bass Connections, a Duke program that pairs students with researchers on health system initiatives. Researchers also focused on identifying workarounds and Band-Aids to help identify problems hidden in plain sight, such as the way health care clinicians communicate with each other about patients’ goals, a gap that was identified, along with others, with the help of BASS Connections students and the focus groups they conducted.
Patient-initiated opportunities for goals of care conversations using Duke MyChart are also being piloted using the Duke PING (Patient Initiated Note about Goals). Patients fill out a series of questions that take about three minutes, identifying aspects of their care that is important to them, such as dignity, comfort, avoiding in-person visits, and minimizing out-of-pocket costs. These notes, a mix of end-of-life and every day practical priorities, can be sent directly to providers’ inboxes.
In addition to scaling the conversations to reach more patients, the palliative care team has looked closely at disparities that may impact the process, a concern they have had from the outset of initiative given the disproportionate burden of serious illnesses borne by people of color and those who are disadvantaged by geography or social determinants of health. So far, the goal of care initiative has increased conversations at similar rates across gender, race, and ethnicity.
Concordant Care: Quantity and Quality
Using a dataset of the last year of health care utilization for all Duke Health patients who have died over the last three years, researchers plan to take a deeper dive into the issue of goals of care conversation quality. However, much remains still to be understood about the data. The key will be to find a reliable, robust and scalable way to determine the content of the conversations in the data that has been collected.
While researchers know whether the conversations happen, they are exploring some natural language processing approaches to understanding the context of the conversations and how the talks evolve over the course of a patient’s illness.
To help them get there, the team has created the Goal Concordant Care Lab, an innovation ecosystem that brings together clinicians, researchers and health system leaders under two overarching goals. One is to bring in research expertise to accelerate what the health system is doing. The second is to give researchers access to a laboratory to learn about how system change happens and how to change behaviors.
“In academic health systems, although we try to break down silos that separate researchers and clinicians, we're not nearly as connected as we should be,” Casarett said. “But I'm hoping that by focusing on a very specific area of goals communication, and by bringing people around the table who are passionate about that issue, we’ll be able to leverage synergies and build productive collaborations that lead to game-changing innovation.”
The Patient Perspectives
