A Frequent Flyer without a Plane to Catch
Sam usually comes to the ER or clinic by ambulance, often because a good Samaritan thought he wasn't breathing as he lay in a soiled pouf of tangled blankets on a downtown sidewalk. (I've changed Sam's name to protect his identity.)
Sam's head is a mass of bruises, lumps, and scabs in various states of healing. No one knows how many times he's been hit in the head, but his electronic chart shows an expensive scan about once a year. And there's no telling how many scans he's had in other ERs. The fact is that at any random point in time, Sam fits the criteria for an emergency scan. He's in a constant state of "altered mental status plus recent head trauma." He's had jaw fractures and a blowout fracture of the bony circle of skull around his eye.
He also has wildly out of control diabetes. For days at a time, it's not clear when, if ever, he eats.
Because of zero oral hygiene, he had to have a gum abscess drained surgically. Most of his teeth have already fallen out, one after the other, after pus-pockets burrowed into his gums. (He says he took one or two of his "back teeth" out with a friend's pliers.) He often has dried blood on his skin and clothes. You stare at the blotches, trying to figure out what injury they might represent. Nosebleed? Pulled tooth? Bit tongue?
Sometimes he seizes, sometimes he's in congestive heart failure. He gets chest pain when he uses crack, but staff are convinced he's learned to "fake" it purely to jump the queue. His EKG is never normal. He's got ulcers on his legs, whose smell clears the room when they're unwrapped. When he seizes, his pants become encrusted with a thick flaky icing of stool, which saturates the bandages.
He's never kept an appointment and has no idea what medicines he's supposed to take (he always says they were stolen). When he's admitted to the hospital for whatever reason-- pneumonia, his ulcers, his seizures, his chest pain --his withdrawal from alcohol is so difficult that he generally spends the first three or four days in a treatment-induced semi-coma, after which he wakes up and leaves against medical advice (usually with his EKG pads still stuck to his chest). He's been in the sobering center multiple times in the same day.
Sam has been kept on an involuntary hold in the psych emergency service twice in the past year. He plans eventually to kill himself by stepping into traffic. He has an assortment of pastel-colored hospital wristbands fraying on his arm. No one cuts them off because those bands are the only way his unconscious body will be identified the next time he's brought in.
Sam is the ultimate difficult patient. At no point can anyone just blow off his symptoms. He is literally dying in front of you.
In fact, his chances of dying when he goes into untreated alcohol withdrawal --from that alone -- are as high as 15 percent. Each time. He evokes tremendous amounts of emotional turmoil in almost every health care provider who deals with him. Anger, frustration, overtly manipulative attempts to bargain with him, and threats of death and abandonment are the norm. Obviously, Sam needs health care. But for some staff, it's hard not to wish he just would go away.
When Sam's cleaned up and sober, beard neatly trimmed after a couple of hospital days, he looks like any one of 100 men you've known, if you can ignore the shakiness of his hands. He can be funny, self-deprecating, sullen, and/or hostile. And he can clearly tell you when he's about to leave against medical advice (again) that he knows what he's doing, and he knows he's likely to die from it.
Neat, competent, coherent, maybe a little paranoid-- this is how a sober Sam would look if he ever ended up in front of a judge in a conservatorship hearing. Even IF Sam were held against his will as a danger to himself, as when he's admitted on a psych hold, the medical problems most likely to kill him aren't changed. His chronic health problems (congestive heart failure, skin ulcers, rampant substance abuse) would take prolonged periods of time to adequately address. And none alone is a "crisis" per se. You cannot force someone into sobriety, any more than you can take away his right to medical care purely because he won't take medications or change bandages.
Each of us in America has an absolute right to make bad health care decisions. It is one of our most iron-clad and treasured liberties. Anyone can refuse anything, however extreme, as long as you are competent. What "competent" means in practical terms is that you, as a patient, must be able to clearly express an understanding of the ramifications for refusing care, and that you are assuming that risk. You also should, optimally, be able to say the date, who you are, and where you are. While Sam is in the throes of his addiction, you might argue that he'd not competent. But once he's sobered up, he has an absolute right to refuse anything, just like any of us. Even if he's costing you and me tens of thousands -- – maybe hundreds of thousands -- of dollars a year. Without paying a penny of his own.
In the most brutal terms, Sam is a combination of a) truly sick, b) non-compliant, c) legally competent, AND d) he won't stop showing up. As such, Sam will likely die, after tremendous suffering, an early, preventable, staggeringly expensive death at taxpayer expense.
We are only recently becoming aware of both the enormous cost, and shocking mortality, of patients like Sam. Electronic medical records are enabling local systems to identify subsets of patients and quantify their outcomes and services. Sam is what a novel working group, led by Maria X. Martinez in the San Francisco Department of Public Health, calls a High Utilizer of Urgent/Emergent Services in Multiple Systems (HUMS). The top 100 people designated as HUMS used more than $8 million worth of urgent/emergent services in one year.
Atul Gawande wrote an article in the New Yorker about people he called "hot spotters." Both HUMS and hot spotters are patients that medical staff across America call "frequent flyers." But there are important differences between Martinez's HUMS and Gawande's hot spotters. Gawande's article dealt almost exclusively with people who are housed, in benefit programs, and even employed. In other words, people very different from the Sams of this world. The interventions Gawande described are designed for people who have a demonstrable ability to manage their lives -- a skill that can be leveraged through targeted interventions.
But what do you do with a cohort of Sams? How do you even track where Sam is at any given time? As soon as you try to manage or limit his access to services in one system, he jumps to another.
The Sams of this world raise profound ethical and moral issues. In order to receive care, is there an as-yet-undefined obligation that each of us owes to make a good faith effort regarding our own health? Is substance abuse a special form of incompetence? Does Sam have a right to die on the sidewalk in your neighborhood, after you or your neighbors have called an ambulance four times in one day? Are we willing, as a society, to say enough? If so, who decides? Under what criteria?
Are you, personally, willing to risk ever being labeled an outlier like Sam and have your access to care cut, too? If not you, then what about your uncle who drinks too much at family gatherings and just lost his job? If he spirals into a Sam, should he be cut off, too? What is a life worth, and is there a limit to how many chances a person gets?
Maybe you don't believe the Sams of the world can be saved. If you feel that way, check out this article.
The increasing use of databases to spot patterns in health care is going to force us to confront these issues. Once we have the cold hard numbers staring us in the face, it's going to be harder and harder to ignore the complexities – and costs -- of dealing with patients like Sam. There are probably pooled databases already being used to find high utilizers in your area.
Keep an eye out for future articles in this series to find out more about HUMS and innovative approaches to address this issue in San Francisco.
Photo credit: R. Jan Gurley