What drives the 5% of patients who cost 50% of health care dollars? Why are we unable to move the needle on that percentage?
Imagine two mountains: One mountain is jagged, steep, with a few ragged trees holding onto it; the other is a low, rolling slope. Now set those mountains on fire and burn away the shrubbery — both will have a mudslide if it rains.
It’s the same with genetics, says Corey Waller, Senior Medical Director for Education and Policy at the National Center for Complex Health and Social Needs, Camden Coalition of Healthcare Providers. Some people are born with difficult genes, while others are solid. But, he says, “it doesn’t matter how good your genetics are if you have nothing holding that soil in; it’s still going to run away.”
Early life trauma affects the vast majority of patients in the 5%, according to Waller; it’s the brushfire that wipes away whatever genetic stability they had. These traumatic experiences could be adverse childhood events, sexual assault, being in a war zone, witnessing a loved one’s death, physical or emotional abuse, or neglect. “For this subset of patients, no matter what the genetic landscape looks like, they’re sliding down with the smallest amount of rain,” explains Waller. “They’ve lost the buffer, that capability to interact with people around them and feel safe in that interaction. They no longer have authentic healing relationships with people where they can trust and they can interact and feel like they have a place to be.”
Trauma often drives what Waller calls the sentinel syndromes, which in turn drive health care utilization for the 5%. Sentinel syndromes are addiction, mental health conditions, chronic pain, and cognitive disorders. If these syndromes are poorly treated, they significantly increase one’s risk of homelessness or incarceration. “If you have an untreated alcohol use disorder, you may drive a vehicle while you’re under the influence and crash, you may get in a fight, you might rob somewhere,” Waller says. “If you have a heroin use disorder, then you’re out trying to just survive with that disorder, and by doing so you will rob and you will cheat and you will steal as a basis of what that disease causes in [the brain].”
And if someone is homeless or incarcerated, unpredictable communication and inconsistent transportation increase their likelihood of not receiving care. “If my patient lives under a bridge, I can’t give them a call and be like, ‘Hey, you’re going to be a little late for your appointment today,’” says Waller. “What appointment? And they’re not on the phone because they’re not able to answer any of that.” Case management call centers for these patients do not work when they don’t have phone access.
Consider a hospitalized patient without sentinel syndromes who undergoes massive levels of care intervention and surgery, costing $50,000, who’s then transitioned to their primary care doctor who is unaware of what occurred in the hospital. Even if they can make the follow-up appointment, there still might be a struggle. Now add sentinel syndromes to that lack of care coordination, and incarceration or instability. We might label these patients as diabetic, having emphysema, having hypertension, etc., and throw nutritional programs at them — but it won’t help.
“I will tell you for sure that if a patient has uncontrolled alcohol use disorder, no amount of counting calories will fix their diabetes,” says Waller. “If a patient has no car to get to the appointment, they have no capability to stabilize their glucose because they can’t go buy the insulin. If they don’t have a telephone to call in their hemoglobin A1c and follow them up, they’re not going to be able to do that.”
“Disease-specific interventions for that 5% of the population is a waste of our time because until we start treating the cause rather than the effect, we’re not going to make a difference in these patients. If I treat COPD, it doesn’t give them a ride. It doesn’t give them better care coordination.”
We’ve started to improve on care coordination, provide transportation, and give people phones. But, argues Waller, “No matter how much of that we do, it’s still not going to treat their homelessness. It’s still not going to treat their three felonies on their record or the incarceration that they had.” Even if we provide housing and felony abatement programs, that still doesn’t treat addiction, behavioral health problems, chronic pain, or cognitive impairment. “What we’re doing is trying to basically take something that is a waterfall down to the bottom and somehow lift all that water back up the hill,” says Waller. “It does not work.”
We need to get to the basis of all this treatment, the main portion of prevention, which lives at early life trauma. That’s the thing that takes away all genetic protection and makes everyone equally at risk for addiction, and it’s what we see in the 5%. The reason patients become expensive is not from their diagnosis — it is from the underlying factors for which we have no good systems to treat.
Part of the problem is that there is no stable ecosystem of care for sentinel syndromes. Less than 25% of hospitals have medical staff privileges for an addiction medicine physician, and less than 10% of primary care physicians screen for addiction, according to Waller. For all the push to normalize and treat mental health conditions, people still don’t know how to handle basic depression or anxiety, and the solution for those with personality disorders is to blame them. Physicians don’t know how to handle chronic pain without opioids. And for cognitive impairment — a traumatic brain injury, low IQ, or someone on the spectrum — giving patients standard discharge instructions is a “surefire way to fail.”
“Before we go to the next shiny object, before we decide to build housing for everyone, I would like to make a pitch that the house of medicine is incomplete. It is without a roof. It is missing a living room. It does not have plumbing,” says Waller. “If we don’t somehow come back and build these ecosystems to complete the house of medicine, then quite honestly that 5% will always cost 50% of our health care dollars.” The soldier with PTSD will still commit suicide, the heroin addict will still OD, and the person with cognitive impairment will still live on the street. “We need to finish our house. If we don’t add the ecosystems of this treatment that have absolute solid evidence in it to be treating these patients, then we will fail.”
From the NEJM Catalyst event Expanding the Bounds of Care Delivery: Integrating Mental, Social, and Physical Health, held at Vanderbilt University Medical Center, January 25, 2018.