Patient Engagement 2017
Talk
The Difference Between Noncompliance and Defiance (09:55)

My thinking about building and supporting teams that foster patient engagement comes from the front lines of a clinical world where engagement can mean the difference between life and death — between attending a life-saving dialysis appointment, and leaving the hospital against medical advice. My experience comes from work in the service of a very specific population of patients. These are folks with limited economic means, with disabilities, both physical and psychiatric. And most importantly, whose experiences with the health system have very often been marked by fragmentation, chaos, mistrust, and dissatisfaction. Notably, it’s these patients who are far and away the hardest to engage — and the hardest to predict. Some of these folks will form the deepest bonds that I’ve experienced as a clinician, and others will push us away. They’ll cuss and spit and threaten, test the bounds of our caregiver’s perseverance and patience.

First off, kudos to all of us in the health care system. We’ve come a long way in reframing our delivery of health care: away from the notion of the doctor as the center of the universe, and toward high-functioning, interdisciplinary care teams. This is vitally important progress. Much of it is grounded in science, a lot of which we’ve heard today. It’s been codified in policy. It moves us toward a world where clinical and non-clinical professionals collaborate to share care, to drive toward well-defined outcomes for patients.

But most of this transformation has been focused on us. Our health care workers, the spaces that we occupy, and the teams that we are a part of. What remains a critical gap is our understanding about what it takes to bring the patient into the circle, as an active team member, with a shared sense of purpose, a clear role to play, and an equal voice at the table. But without their true engagement, we cannot meaningfully change outcomes for the patients who need us the most.

This important point was driven home to me through an encounter with a patient who is now in my practice. This woman — I’ll call her Mary Beth — has a major psychiatric diagnosis and a number of chronic medical conditions. She was new to my practice, but the timing of her visit happened to follow yet another hospitalization for a medical complication that could very easily have been avoided through appropriate utilization of her prescribed medications. It happened that day to be a really warm spring afternoon, and those of you who know New England know how long a wait for those types of days can be. So instead of conducting the visit in my office, I decided to take her for a short walk around the neighborhood. We stepped out of that space — my space — and into the sunshine. And Mary Beth started to talk. She talked about her childhood, her relationships, her hospitalizations, the many facets of our health and social systems that she had touched. And just as we turned to go back to the clinic, she said to me: “Look, I want you to understand. I’m not noncompliant. I’m defiant.”

Those words were so rich in insight and meaning, they just stopped me in my tracks. My world, the clinical world, had read her behavior as apparent, as misguided; she was to be blamed. Her frame was the opposite. She was seizing control.

I returned to Mary Beth and her words many times since, as I think about what they actually mean. For health care providers to truly engage patients, in their care and their well-being, to listen to their perspectives and voices and craft collaborative care plans. Before joining my practice, Mary Beth, like many other patients with multiple chronic conditions, was no stranger to team-based medical and psychiatric care. She and people like her are often described as frequent flyers in the health care system: high utilizers, high-cost, high-need patients. They are the first targets to be enrolled in every form of care management, care coordination, or care navigation, designed to curtail their high utilization, and steer their behaviors toward what we call compliance, or adherence to medical dictums. But for Mary Beth, and for so many others like her, it just wasn’t working. Her experience with team-based care was that at best: there were two teams. There were health professionals on one side. (Although, if we’re frank with ourselves, most of the time there were multiple teams there, too, battling each other.) But she was alone. She was a team of one, fighting equally hard to be heard, to be understood, included, valued. And so here she was, standing in front me of me, rejecting the health care system’s assessment of her and telling her own version of the truth. I’m not noncompliant. I’m defiant.

What does it actually take to equip patients with the power, the resources, and the agency to be an effective team member? What does it take to break down the silos between us, the clinical team, and them, the patients, who are actually the most critical agents within the system? I have three suggestions:

  1. The design of care teams has to be focused on fostering and sustaining a longitudinal trusting relationship between the patient and at least one member of the care team. It’s incredibly tantalizing, as we continue on this journey toward team-based care, to think about the efficiencies that we can gain through spreading care out across a larger number of individuals at the practice level, everyone practicing at the top of their licensure. We should do well at those things, but we cannot do them at the expense of diluting the dose-dependent power of meaningful, trusting connections with patients and at least one person in the system. And we’ve got to be able to meet those patients where they’re at. I’m not suggesting that every patient needs home-based care; I’m not suggesting that every primary care practitioner take her patient on a walk through the neighborhood. But I will tell you that what happened when I stepped outside with Mary Beth created the space for an honest dialogue, as we faced each other on equal footing outside of the charged environment that for her recalled memories of distrust and disempowerment. Every person with complex care needs must have a person. A named, identifiable, and readily accessible person who is a member of the care team they can rely on to be their ally, to be their entry point in our health care systems, and to guide them through systems that are so often chaotic, fragmented, and uncoordinated. I do believe that this relationship can be with any member of the team (licensure notwithstanding). And that does allow us to reap the benefits of so many of the inefficiencies we can see in team-based care. But I strongly believe the existence of at least one relationship is a necessary precondition for meaningful behavior change.
  2. Leaders and members of teams have to be mindful of language, both in public and private spaces. How did Mary Beth know that doctors and nurses often refer to patients who don’t take their medications as prescribed as noncompliant? How must that have felt to her when she first heard that term? Either on a discharge summary or overheard from her hospital bed, or worst still, potentially said to her face? When we describe patients as challenging, noncompliant, nonadherent, or we describe them by their disease states, we strip them of their humanity, and we establish an implicit opposition between the patient and the care team that undermines fundamentally the notion of partnership and collaboration. We found that a combination of purposefully establishing language norms, modeling by leadership, and empowering staff to call out breaches of our culture of caring is an effective way to build a vocabulary around care that reflects and reinforces the value of patient centeredness and compassion.
  3. Effective teams should make a point of identifying and prioritizing common goals, goals that the clinical team and the patient agree on. These goals actually may not be the most clinically important end points. But they’re important to the patient, which ultimately is key to effective engagement and collaboration. For clinicians, this is particularly hard. What it means in practice is that sometimes we have to consciously and knowingly accept poorly controlled high blood pressure, or accept those recurrent preventable hospitalizations, in order to focus on what matters to the patient. Maybe it’s housing, or food, or loneliness, or an upcoming life event. But if we fail to conquer common ground first, and instead forge ahead on our own agenda without being certain that aligns with the patient’s, we risk creating opposition. We risk fostering a situation where the patient stops taking her medications as an act of defiance, as a way to wrest power and control from a team that is driving toward a different goal.

I recognize that much of this might seem like common sense, or too simple. Focusing on enabling meaningful human relationships, build our trust, mutual respect, common goal setting — it is simple. But our health system is increasingly moving toward complex frameworks that drag us further away from these principles, despite the fact that they’re key to realizing meaningful outcomes for individuals whose lives most depend on it. So perhaps we should start by reframing the question: How do we build a system that is trustworthy, easy to access, and designed to meet patients on their terms, not ours?

From the NEJM Catalyst event Hardwiring Patient Engagement to Deliver Better Health at Kaiser Permanente Southern California, April 13, 2017.

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