Why isn’t my patient getting better? The answer may lie outside the clinic
by Heidi Berthoud, MPH, staff writer at the MacColl Center for Health Care Innovation
Dr. Alan Glaseroff knows a thing or two about complex patients. As a longtime family medicine doctor in a rural practice and the co-founder of the Stanford Coordinated Care Ambulatory Intensive Care Unit (AICU), he’s worked with many patients and clinical teams to develop and implement new ways to support people with multiple chronic conditions.
It all started with a question: “Why would a person with chronic disease not do everything in their power to live long and feel well?” That question led Dr. Glaseroff to look beyond the clinic. What he found was that the key to better health was often more about addressing social and behavioral factors than providing traditional health care.
Social determinants of health and the ACE study
The World Health Organization defines social determinants as “the circumstances in which people are born, grow up, live, work and age, and the systems put in place to deal with illness.” These circumstances are in turn shaped by a wider set of forces: economics, social policies, and politics. According to an issue brief from the Kaiser Family Foundation, social determinants, along with personal behaviors and genetics, impact health more than access to health care.
Dr. Glaseroff agrees. Although he prefers not to use the word “determinant” because it sounds like a “death sentence,” Dr. Glaseroff has observed that “part of the causality of health inequity isn’t the difference in health care received, it’s the difference in the lives of the people suffering from the disease.” Factors beyond his patients’ control—like poverty, racism, food insecurity, homelessness, or a history of abuse—affect health in more profound and long-lasting ways than many clinicians previously understood.
This is where the Adverse Childhood Experience (ACE) study enters the picture. Developed in the mid-90s by Vincent Felitti of Kaiser Permanente, ACE aimed to better understand if childhood exposure to violence, abuse, and neglect could impact adult health. The findings were dramatic: As the number of negative childhood experiences increased, so too did the number of adulthood health risks such as alcoholism, depression, liver and heart disease, smoking, and suicide attempts, among others. The 2012 urban ACE study in Philadelphia showed similar results.
An ACE-inspired innovation in primary care
The Stanford Coordinated Care AICU opened in 2012 as a primary care clinic that addressed the needs of Stanford employees with multiple chronic conditions (the 5% of the population that consumes 50% of a system’s overall health care spending annually). The overall goal was to see if a person-centered focus would help patients better control their conditions by improving treatment adherence. To achieve this the team focused on embedding licensed clinical social workers in the practice, training staff to utilize motivational interviewing, and provided dedicated care coordinators for close follow up. Additional supports included targeted care from a physical therapist, dietary instructions, and information therapy with a local librarian.
This approach worked wonderfully with about 60% of clinic patients. But the other roughly 40% still could not get their conditions under control, and this puzzled Dr. Glaseroff. In search of answers, he and his team decided to ask their patients questions that broadly mirrored some of the ACE questions, such as “How was your childhood?” The results were telling: Patients who were inconsistent with their treatment or unable to adhere to a treatment plan frequently had troubling stories to tell about their childhoods, closely reflecting what a high ACE score would demonstrate. Because of their terrible childhood experiences, the very behaviors the AICU team was helping them to adopt (e.g. eat better, stop smoking, control drinking, take their meds) were hindered by their return to the self-destructive behaviors adopted in childhood to manage their challenging circumstances.
These patients clearly needed interventions that had little to do with the medical aspects of their disease and everything to do with the social and behavioral aspects. So the AICU took several specific steps to better support these patients:
- Implemented an urgent referral system to a licensed social worker on staff
- Introduced a trauma-informed approach, which focuses on building a sense of safety and mutuality while not re-traumatizing patients during a patient care interaction
- Worked hard to build additional trust with these patients and encouraged patient-focused care
Patients who received this focused care demonstrated dramatic improvements in their ability to adhere to their treatment plans. The AICU team’s approach not only changed health outcomes for these patients, it also uncovered behavioral health factors that might have remained hidden otherwise.
How to address adverse childhood experiences with your patients
Dr. Glaseroff insists the conversation needs to shift from asking “What’s wrong with you?” to “What happened to you?” While the former is stigmatizing, the latter opens up a dialogue for patients to engage with their clinical team. This, in turn, helps patients begin to understand that their childhood experience is shaping their adult health—but that it doesn’t need to define them forever.
To get started with this approach in your clinic, Dr. Glaseroff recommends a few key steps:
- Focus on the patient’s self-identified goals and continue to ask “What happened to you?” instead of “What’s wrong with you?”
- Hire more MAs so you have time to do this work. Allow the MAs to take on more of the protocol-driven work of population management.
- Learn about motivational interviewing and trauma-informed care, and consider providing trainings for yourself and your staff.
Dr. Glaseroff notes that the AICU team doesn’t put any ACE questions or scores into the patient medial record. Because they are an employer-based health care provider, they don’t want patients to worry that this information could be accessed by their employer. Other practices may consider doing so if it seems helpful for long-term patient care and won’t be accessed by insurance providers.
Learn more about ACE and motivational interviewing
Here are some resources to get you started: