In the label ‘adult failure to thrive,’ medicine reveals its own failures

The death certificate made everything worse. Seth Fischer was already angry: a physical feeling, an overwhelming internal buzz. He would go for runs, only to find himself passing the white bulk of mobile morgues, refrigeration whirring — and his mind would end up back on his dad, in respiratory distress, dying of Covid or Alzheimer’s, he’d never know which. He’d requested a post-mortem coronavirus test, and had been told there weren’t enough. I don’t want to be offensive, someone from the health department had said, but he’s already dead, what good’s it going to do?

The death certificate conveyed the same sentiment, a kind of official shrug. Fischer is an essayist. He was sitting in his Los Angeles apartment, trying to put his loss into words when the document arrived from his stepmom. It was May 2020, a month after his father’s burial. There, among the contributing causes of death, was “adult failure to thrive.”

You’ve got to be kidding me, Fischer thought. His first reaction was to laugh. Those words made it sound like the illness had been his dad’s fault. As if old age were a test his father had failed.

His dad had been a developmental psychologist. He’d encouraged kids to act as little scientists, collecting evidence about the world. As a graduate student, he’d raised a rhesus monkey in his cramped apartment, naming her Frodi, taking careful notes. He’d jotted down similar observations about his own son, a black binder that would end up packed away with Seth’s childhood artwork. “Adult failure to thrive” brushed those sorts of stories aside. It reduced him to an old man in a memory care home, no longer able to do anything of value. To say he’d died of probable aspiration was one thing. It sounded mechanical, biological — a body giving out, as everyone’s eventually would. To say he’d failed to thrive sounded judgmental.

What did it even mean? Fischer looked it up, only to find that it could mean a whole bunch of different things — a slippery phrase in a realm where things were supposed to be definite, measurable.

It wasn’t reserved for the dead. The term is official enough to have a code in the American version of the International Classification of Diseases — R62.7 — and common enough for medical coders to know that code by heart. Some physicians say they haven’t heard the phrase in years. But in a dataset from health-records giant Epic, among 65 million U.S. patients seen in 2021, some 126,000 of them had “adult failure to thrive.” Look only at hospitalizations, and the fraction gets larger: 1.5% had been assigned this code. It tends to be written into the medical charts of older adults, sometimes without the patient or family being told.

“Just say you have no f—ing clue what happened,” Fischer said. “Don’t make up some BS phrase that also weirdly blames the victim.” It turned out plenty of doctors have had the same thought.

Martha Spencer first noticed it when she started rotations as a medical student: Doctors were diagnosing older adults with what she’d thought was a condition of newborns. If babies aren’t meeting certain milestones — not gaining the expected amount of weight, or showing the expected increase in head circumference, or learning to roll over in the expected timeframe — a pediatrician will say they’re failing to thrive. But her teachers were using the term for octogenarians.

Eventually, her surprise turned to alarm. She was a geriatrician by then, at St. Paul’s Hospital, in Vancouver — a specialist in untangling the overlapping issues of older adults — and at least once a week, she’d see this label being given to patients when a doctor couldn’t figure out exactly what was wrong. It was a kind of placeholder, a shrug, a fancy way of saying, “I don’t know, they’re just old.” Sometimes it came with an eye roll, real or implied. “You know, ‘He’s probably fine, take your time, but we have to see him,’” Spencer recalled.

The trouble was, often the patient wasn’t fine. She remembers people with “adult failure to thrive” who turned out to have all sorts of acute issues, from pus-filled wounds in the lung to joints burgeoning with bacteria. “I’ve definitely seen multiple cases where I’ve gone down and the person has actually had a heart attack, or they have an active infection, or they have a broken bone — and not been fully investigated because of this label,” Spencer said. Often, these people had conditions that looked different in older adults, that didn’t match the classic presentation. Sometimes, they’d been waiting 10 or 12 hours since seeing the doctor who’d described them as having “FTT.”

This wasn’t just a Canadian issue. In 2017, doctors in Pennsylvania wrote a case report about an abdominal mass “masquerading” as adult failure to thrive in a 91-year-old; she’d spent months with little appetite, and then developed intermittent nausea and vomiting.

“When an older adult is called ‘failure to thrive,’ we see a lot of ageism come in, and we see the health care system start to ignore their problems,” said Sharon Brangman, chair of geriatrics at the State University of New York Upstate. “It’s used to totally disregard a person. That’s kind of the ageist approach. You lump everybody in one basket, and then you don’t take care of them.”

To Spencer, it was derogatory too, infantilizing on the one hand, blame-slinging on the other. Among internal medicine residents, she became known as the crazy supervisor who’d start every ER shift by erasing “FTT” from the physicians’ whiteboard. We don’t call people that when I’m around, she’d tell them. Those patients tended to have a cloud of symptoms. They might be losing weight, physically unable to do activities that had recently been quotidian. They might be depressed, cognitively impaired, confused, weak. Some physicians might think of them as “bed-blockers” or “gomers,” short for “get out of my emergency room,” or “dreaded social admissions” — people without a diagnosis that required the hospital, but not well enough to care for themselves at home.

Spencer wanted her trainees to look beyond that kind of dismissiveness, to sort out what the problem was and how they could help. She proposed scrapping the term entirely, and with her mentee Clara Tsui, began collecting data on the medical frame of mind in which it was used. As Tsui put it, “Underdiagnosis and undertreatment are a big part of this attitude.”

But the opposite is also true. Hospitals often reflexively test and treat, scanning and biopsying and blood-drawing their way to a diagnosis that can be managed with prescriptions, or yet more procedures. If “adult failure to thrive” is sometimes a license to disregard, it can also be an invitation to endlessly, fruitlessly intervene. “I hate the term. It’s a way of overly medicalizing a human need,” said Laura Perry, a geriatrician at the University of California, San Francisco. That’s the balancing act of elder care. You could think of it as neither too little nor too much, or you could just think of it as paying careful attention.

That was why Catherine Sarkisian had, way back in 1996, made the same proposal Spencer and Tsui made in 2020, to scrap “adult failure to thrive”: It obscured the patient’s story rather than illuminating it. She was just starting her residency in New York City, and the term was everywhere, used for older patients, used for emaciated AIDS patients her own age, for whom there weren’t yet good medications. It was used for her own grandmother, one Thanksgiving, when she was confused and had to be brought to the hospital instead of their family dinner.

Sarkisian’s task as a geriatrician was figuring out what the patient wanted and needed — and that meant clearly articulating what was going on: “If someone is not eating enough, say they’re not eating enough! If they can’t take a shower anymore by themselves, say they can’t take a shower anymore by themselves!” But the term stuck. She still hears it in her work at the University of California, Los Angeles. Whenever trainees tell her someone has “adult failure to thrive,” she wonders whether to tell them she’d tried to get the phrase abolished over 25 years ago.

It was supposed to be an improvement. “When I was starting out as an intern, we called it the dwindles,” said John Morley, a geriatrician at St. Louis University. “These were the old people who had a million things going wrong, we didn’t know what it was, we paid no attention to them, did as little as possible.” The label sounded more folksy than scientific, more of a curse than a documentable symptom. “Pre-death” wasn’t much more palatable.

Failure to thrive, at least, had a clinical ring to it, if only because clinicians were writing about it as early as 1915. Medical papers have linked it to all kinds of issues in infants, including neglect, poverty, and diseases as varied as cerebral palsy, cleft palate, cystic fibrosis, and gastroesophageal reflux. For babies, too, it isn’t a diagnosis per se, but more of a descriptor, a way of saying that something’s not right and needs figuring out. And for pediatricians, too, it’s been a source of controversy, most memorably summarized in the title of a 2007 paper: “Failure to think about failure to thrive.” Some have suggested replacing it with something more specific.

An unspecific term, though, turned out to be useful. In the 1970s, it migrated from infancy to old age, creating a new sign or symptom for adults, first in the International Classification of Diseases, and then in the American adaptation of it. Those texts act as doctors’ dictionaries, a tool for translating bodies into words, and words into billable codes. Their contents are crowdsourced but also formalized, the language doctors use generating the linguistic rules, which are then enforced by whoever’s paying the bills.

As it became part of the medical vocabulary, “adult failure to thrive” took on a peculiar role: a translation for what in an older patient wasn’t immediately, precisely translatable. Linda Fried, dean of Columbia’s Mailman School of Public Health, described it as “a downward spiral” — a confluence of chronic illnesses and other issues, a syndrome that is more than the sum of its parts, a way to communicate to another physician that a patient is doing poorly without necessarily knowing the cause. In the U.S., that idea was taken up by insurers, and deemed an acceptable reason for admitting a patient to the hospital.

Such reasons aren’t always easy to come by, especially as insurance companies have become stricter about reviewing and rejecting claims. Figuring out what might qualify someone for an inpatient bed can be tricky. “It’s not like there’s a magic list somewhere,” said Sue Bowman, senior director at the American Health Information Management Association.

As doctors noticed that adult failure to thrive could be a key, that made it more ingrained. “My colleagues in emergency medicine are using the term when they’re worried about someone. They don’t think they are OK to go back to the setting from whence they came,” said Kevin Biese, an associate professor of emergency and geriatric medicine at the University of North Carolina. “But frankly, they don’t really have a clear, concrete diagnosis.” A question mark doesn’t cut it when hospitals or insurers ask why a patient needs a bed. “If there’s no answer to that, they’ll say, don’t admit the patient, send them home.”

Fisher wasn’t wrong, when he figured that his dad’s death certificate contained a vague suite of words masquerading as an explanation. The vagueness was part of the point. It wasn’t just doctors who sometimes found it helpful for navigating a byzantine system. Outside of the hospital, caregivers sometimes reported something similar. Elizabeth Costle spent 20 years caring for her husband, Douglas, after he had a stroke in 1999. “He had only a few words left, and they were mostly swear-words,” Costle said, laughing.

It was frustrating for him. He’d been an architect of the Environmental Protection Agency. It was hard on her. She was working as the insurance commissioner for the state of Vermont while looking after him, getting guidance and support from a caregiving nonprofit called the Well Spouse Association. About 11 years after his stroke, he stopped seeming like himself. He wouldn’t eat, wouldn’t get up, wouldn’t take his meds. A visiting nurse diagnosed him with failure to thrive. Depression might’ve been another word for it. Costle called her the ice-cream-for-breakfast nurse: She gave her husband ice cream first-thing, with his meds surreptitiously crushed into it, and he started to get better.

As someone who’d worked as a nursing home ombudsman, Costle didn’t see failure to thrive as a comment on the care she was providing. Rather, it was a way to secure insurance coverage for at least a tiny sliver of her husband’s vast, exorbitant need. “It will allow the visiting nurse to get paid,” was how she thought about it.

The scenarios might be different at home or in the primary care clinic than in the hospital, but the same idea often applied. Other words could fit the bill — confusion, for instance, or disorientation, or altered mental status, or poor nutrition. But in the world of billing, “failure to thrive says more,” explained Lee Williams, of the American Academy of Professional Coders, and it increases the chances of a patient being admitted in the moment. She empathized with Biese’s fear: Take away the term, Biese said, and “you’re taking away the ability for the doctor to say, ‘I’m worried about her but I don’t really have a better answer.’”

That happened, on a smaller scale, in 2014, when U.S. government insurers stopped accepting “adult failure to thrive” as the primary reason to give hospice care. A few years earlier, it had been among the top five diagnoses that clinicians used for that purpose. That wasn’t a real diagnosis, officials said; they wanted the paperwork to show the underlying disease, not just the sign or symptom.

BJ Miller missed it once it was gone. As a palliative care physician, he looked at patients as people, not as clusters of illnesses. Their needs didn’t necessarily map onto the Cartesian grid of diagnosis codes. He wished medicine weren’t structured that way, but it was. “A lot of people can really benefit from hospice services, but if you don’t have a diagnosis code, you can’t get them,” he said. “That code was there to catch folks whose bodies weren’t playing by the rules.”

Sally Brown’s body wasn’t playing by the rules. She was 86. She’d recently had a heart attack. She’d had vertigo for a long time. Sometimes she drooled. She’d just lost her son to a sudden cardiac event. She didn’t have much appetite. She’d spent her entire life trying not to eat too much and now, in September 2021, her family doctor was telling her she wasn’t eating enough. He said this was called failure to thrive.

She told him she was in mourning, she was grieving her son. He said he was sorry for her loss. He referred her to a neurologist, who diagnosed her with Parkinson’s, and put her on medication. That helped with the drooling and the shaky handwriting, but she was still losing weight. Her doctor told her to eat, told her children to give her anything she wanted. But of course they’d been giving her anything she wanted. She just didn’t have the taste for it. Even the sweets, which she used to love. She’d been famous for her chocolate chip cookies. She used to love Snickers ice cream bars, and her daughter, Denise Brown, would buy them for her every other week. And then suddenly in April she said, “I cannot eat them, get them out of the house. Get them out!”

There was also the issue with her gallbladder, which sometimes made her nauseous. The doctor told her to avoid fatty foods. But the doctor also wanted her to eat more. She said she’d just give up pizza and gravy. Her kids didn’t want her to give up anything she had the taste for. Her kids would try to coax her onto the scale, and she’d say, maybe a little later. When they insisted, she’d just get discouraged. How was it possible that she was losing this much weight? She’d become resigned and say maybe she’d try one of those nutrition-supplement drinks. But she hated the taste, and what kind of a life was that?

Ask Denise about her mother’s failure to thrive and she’ll let out a sigh. “It’s just such a sad thing to hear,” she said. “As her adult daughter, really committed to her quality of life, you just feel like a failure. All these conversations about her weight, and then looking at us, my sister and my brother and I, as if we are withholding food. You just feel like this failure. That you’re not doing everything within your power, that somehow the weight loss is because of your irresponsibility, or your lack of concern.”

To Denise, whose job involves creating training materials for other family caregivers, what was missing, in that moment in the doctor’s office, was a compassionate conversation about what her mom needed to be comfortable. The health problem that bothered Sally most was her tiredness. She wished she had the energy to go out to play bridge more. As it was, she had to force herself to go to her monthly church guild meetings. The words failure to thrive hadn’t offended Sally the way they had her daughter. She hadn’t remembered them. “It’s just depressing,” she said, when reminded. Why? “End of life,” was all she said.

It’s something people don’t like to talk about: not just the end of life, but old age in general. That’s true even among the unsqueamish ranks of medical professionals. Martha Spencer tries to warn her trainees. Tell people you’re heading toward cardiology and they’ll say that’s wonderful. Tell them you’re heading toward geriatrics and they’ll ask why. There’s often an implicit nose-wrinkle, as if you’d just told your MBA classmate you’re hoping to work in urinals.

That distaste is statistically visible, too. The pool of old-age specialists has shrunk while the number of patients who need them booms. The U.S. geriatrician workforce was 10,270 strong in 2000, 8,502 in 2010, and 7,300 in 2020. It’s expected to rebound a bit, but not by nearly enough. It would have to jump nearly fivefold by 2025 in order to meet projected demand. The shortage can’t be pinned on individual doctors-to-be. Instead, it’s wound into the culture of medicine, part of the hidden curriculum absorbed while watching and emulating mentors in the hospital. Students are nudged to want what they want by the work itself, but also by shrugs and eye rolls, by differences in prestige and pay.

The dearth of geriatricians and the use of “adult failure to thrive” are linked, both symptoms of an ageist system, one that has traditionally devalued elder care of all stripes, leaving hospitals and their staffs ill-equipped for some of the patients who need them most. When Spencer and Tsui analyzed the medical charts of 60 people admitted with failure to thrive between 2016 and 2017 and compared them to 60 people with similar ages and comorbidities but different diagnoses, they found that the first group tended to spend longer in the emergency room, stay longer in the hospital, and leave with a different diagnosis than the one used when they’d become inpatients in the first place. “Notably, 88% of the ‘failure to thrive’ cohort had an acute medical diagnosis at the time of discharge,” they wrote in a paper in 2020.

Spencer and Tsui see that as an alarming sign of older adults not getting adequate care. Some specialists take a different view. “There’s a risk of Monday-morning quarterbacking,” said Biese, the emergency doctor in North Carolina. If a correct diagnosis is tricky, he explained, it’s bound to take longer to get to, and might seem obvious in retrospect. Both visions could be true at once. There can be cases where “FTT” is used to dismiss older adults and others where it’s used to get them services that might otherwise be inaccessible. What everyone agrees on, though, is the problem underlying all of these scenarios: a medical system that isn’t set up for older adults.

Emergency rooms can be especially tough; the more time older patients spend there, the worse their outcomes and the higher the likelihood they’ll become delirious. Biese has worked on a program to make improvements, and a central element is to give staff the training — about falls, delirium, dementia, the complex drug regimens of older adulthood — they may not have gotten when they were starting out.

Spencer is an outlier. She knew she wanted to be a geriatrician even before medical school. She’d grown up an only child in Corner Brook, Newfoundland. Her grandparents were like siblings to her, the people she sat in the back of the car with on interminable road trips. She remembers her family arriving at a highway-side hotel and the four grandparents immediately starting up a game of cards, gambling for quarters and dimes, a settling-in ritual. She remembers watching one grandpa become disoriented with dementia and forget how to swallow.

Tsui is now a staff geriatrician at Richmond Hospital, but she started out with a more Cartesian approach. “I was actually the kind of kid who watched ‘Grey’s Anatomy’ and went to medical school thinking I’m going to be a surgeon or neurosurgeon. Because I guess that was the sexy thing to do. Like, I’m going to go in there and rip out disease with a scalpel,” she said. But she hated surgery, and loved older people’s stories.

They reminded her of her own grandma, who’d cared for her when the family first moved from Hong Kong to Richmond, British Columbia. Her grandmother was born in the province of Fujian, had lived through two wars in mainland China. She’d studied literature in Taiwan, then kept that quiet to get through the Cultural Revolution. She’d tell Clara to eat all her rice, down to the last grain. “If you leave rice behind, it will bring misfortune,” she’d say. Eventually, all she’d have to do to make her point was click her chopsticks on her granddaughter’s bowl.

In geriatrics, those kinds of stories could turn out to be essential. Tsui remembered one patient with dementia who could only be coaxed into physical therapy with the help of a toy cat — a stand-in for the animal who’d kept her company for years.

“You really have to be a detective, because people don’t come and give you the information on a silver platter,” Spencer said. Patients might remember their childhood but not what happened a few hours ago. They might’ve fallen, but may not be able to reconstruct how they ended up on the floor. “They come and say, ‘My elevator’s broken and I can’t make it up the stairs.’ So it’s called a ‘social admission.’ But when you dig a little deeper, two weeks ago, they could make it up the stairs,” Spencer said. “So why can’t they make it up the stairs now?” If you’re not trained to dig in that way, though, and you’re pressed for time, you might think the patient is just old.

Ask geriatricians about this kind of case, and they’ll invariably bring up the elder care disasters of Covid-19. The culture of labeling patients “bed-blockers”  or “gomers” is the same one that spurred politicians to suggest sacrificing grandma for the sake of the economy.

That flashed across Fischer’s mind, too, when he saw his father’s death certificate. He’s a writer, not a doctor. He didn’t have years of training during which he’d come to recognize the various presentations that might be called an “FTT,” didn’t know how it could function as a key to unlock insurance approval for an inpatient bed. He’s an expert in words, but not in how they can shape someone’s trajectory through the medical system. Still, in “failure to thrive,” he couldn’t help but see echoes of other failures: Elders left to soil themselves during nursing home staffing crises, memory care facilities where workers couldn’t access personal protective equipment or Covid-19 vaccines. In fact, he’d scrambled to find tests and masks himself for the place where his father was living, in the spring of 2020, but the institution wouldn’t take them. To him, his father wasn’t the one who’d failed.