When B. Paul Turpin was admitted to a Tennessee hospital in January, the biggest concern was whether the 69-year-old endocrinologist would survive. But as he battled a life-threatening infection, Turpin developed terrifying hallucinations, including one in which he was performing on a stage soaked with blood. Doctors tried to quell his delusions with increasingly large doses of sedatives, which only made him more disoriented.
Nearly five months later, Turpin’s infection has been routed, but his life is upended. Delirious and too weak to go home after his hospital discharge, he spent months in a rehab center, where he fell twice, once hitting his head. Until recently he did not remember where he lived and believed he had been in a car wreck. “I tell him it’s more like a train wreck,” said his wife, Marylou Turpin.
“They kept telling me in the hospital, ‘Everybody does this,’ and that his confusion would disappear,” she said. Instead, her once astute husband has had great difficulty “getting past the scramble.”
Turpin’s experience illustrates the consequences of delirium, a sudden disruption of consciousness and cognition marked by vivid hallucinations, delusions and an inability to focus that affects 7 million hospitalized Americans annually. The disorder can occur at any age — it has been seen in preschoolers — but disproportionately affects people older than 65 and is often misdiagnosed as dementia. While delirium and dementia can coexist, they are distinctly different illnesses. Dementia develops gradually and worsens progressively, while delirium occurs suddenly and typically fluctuates during the course of a day. Some patients with delirium are agitated and combative, while others are lethargic and inattentive.
Patients treated in intensive care units who are heavily sedated and on ventilators are particularly likely to become delirious; some studies place the rate as high as 85 percent. But the condition is common among patients recovering from surgery and in those with something as easily treated as a urinary tract infection. Regardless of its cause, delirium can persist for months after discharge.
Federal health authorities, who are seeking ways to reduce hospital-acquired complications, are pondering what actions to take to reduce the incidence of delirium, which is not among the complications for which Medicare withholds payment or for which it penalizes hospitals. Delirium is estimated to cost more than $143 billion annually, mostly in longer hospital stays and follow-up care in nursing homes.
“Delirium is very underrecognized and underdiagnosed,” said geriatrician Sharon Inouye, a professor of medicine at Harvard Medical School. As a young doctor in the 1980s, Inouye pioneered efforts to diagnose and prevent the condition, which was then called “ICU psychosis.” Its underlying physiological cause remains a mystery.
“Physicians and nurses often don’t know about it,” added Inouye, who directs the Aging Brain Center at Hebrew SeniorLife, a Harvard affiliate that provides elder care and conducts gerontology research. Preventing delirium is crucial, she said, because “there still aren’t good treatments for it once it occurs.”
Researchers estimate that about 40 percent of delirium cases are preventable. Many cases are triggered by the care patients receive — especially large doses of anti-anxiety drugs and narcotics to which the elderly are sensitive — or the environments of hospitals themselves: busy, noisy, brightly lit places where sleep is constantly disrupted and staff changes frequently.
Recent studies have linked delirium to longer hospital stays: 21 days for delirium patients compared with nine days for patients who don’t develop the condition. Other research has linked delirium to a greater risk of falls, an increased probability of developing dementia and an accelerated death rate.
“The biggest misconceptions are that delirium is inevitable and that it doesn’t matter,” said E. Wesley Ely, a professor of medicine at Vanderbilt University School of Medicine who founded its ICU Delirium and Cognitive Impairment Study Group.
In 2013, Ely and his colleagues published a study documenting delirium’s long-term cognitive toll. A year after discharge, 80 percent of 821 ICU patients ages 18 to 99 scored lower on cognitive tests than their age and education would have predicted, while nearly two-thirds had scores similar to patients with traumatic brain injury or mild Alzheimer’s disease. Only 6 percent were cognitively impaired before their hospitalization.
Cognitive and memory problems are not the only effects. Symptoms of post-traumatic stress disorder are also common in people who develop delirium. A recent meta-analysis by Johns Hopkins researchers found that 1 in 4 discharged ICU patients displayed PTSD symptoms, a rate similar to that of combat veterans or rape victims.
David Jones, a 37-year-old legal analyst in Chicago, said that he was entirely unprepared for persistent cognitive and psychological problems that followed the delirium that began during his six-week hospitalization for a life-threatening pancreatic disorder in 2012. Terrifying flashbacks, a hallmark of PTSD, were the worst. “They discharged me and didn’t tell me about this at all,” said Jones, whose many hallucinations included being burned alive.
Jones’s ordeal is typical, said psychologist James C. Jackson of Vanderbilt’s ICU Recovery Center, a multidisciplinary program that treats patients after discharge.
“They go home and don’t have the language to describe what has happened to them,” said Jackson, adding that such incidents are often mistaken for psychosis or dementia. “Some patients have very striking delusional memories that are very clear distortions of what happened: patients who were catheterized who think they were sexually assaulted and patients undergoing MRIs convinced that they were fed into a giant oven.”
Some hospitals are moving to prevent delirium through a more careful use of medications, particularly tranquilizers used to treat anxiety called benzodiazepines, which are known to trigger or exacerbate the problem. Others are trying to wean ICU patients off breathing machines sooner, to limit the use of restraints and to get patients out of bed and moving more quickly. Still others are trying to soften the environment by shutting off lights in patients’ rooms at night, installing large clocks and minimizing noisy alarms.
A recent meta-analysis led by Harvard researchers found that a variety of non-drug interventions — which included making sure patients’ sleep-wake cycles were preserved, that they had their eyeglasses and hearing aids and that were not dehydrated — reduced delirium by 53 percent. These simple fixes had an added benefit: They cut the rate of falls among hospitalized patients by 62 percent.
Inouye and other experts say that encouraging hospitals to recognize and treat delirium is paramount. They have vehemently argued that federal officials should not classify delirium as a “never” event for which Medicare payment will be denied, fearing that would only drive the problem further underground. (“Never” events include severe bedsores.)
Delirium “is not like pneumonia or a fracture” and lacks an obvious physical indicator, said Malaz Boustani, an associate professor of medicine at Indiana University. He proposes that Medicare create a bundle payment that would pay for treatment up to six months after delirium is detected.
Creating effective incentives is essential, said Ryan Greysen, an assistant professor of medicine at the University of California at San Francisco. Delirium, he said, suffers from a “pernicious know-do gap” — a disparity between knowledge and practice. Many proven interventions, he said, do not seem sufficiently medical. “There’s no gene therapy, no new drug,” Greysen said. “I think we need to put this in the realm of hospital protocol, which conveys the message that preventing and treating delirium is just as important as giving people their meds on time.”
Awareness that delirium is a significant problem, not a transitory complication, is recent, an outgrowth of growing expertise in the relatively new field of critical care medicine. The graying of the baby boom generation, whose oldest members are turning 69, is fueling interest in geriatrics. And many boomers are encountering delirium as they help care for their parents who are in their 80s and older.
“In the early 1990s, we thought it was a benevolent thing to protect people from their memories of having a tube down their throat, of being tied down, by using large doses of drugs to paralyze and deeply sedate patients,” Ely noted. “But by the late 1990s, I was just getting creamed by families and patients who told me, ‘I can’t balance my checkbook, I can’t find my car in the parking lot and I just got fired from my job.’ Their brains didn’t work anymore.”
Delirium “is now taught or at least mentioned in every medical and nursing school in the country. That’s a huge change from a decade ago,” said Inouye, adding that research has increased exponentially as well.
In some cases, delirium is the result of carelessness.
One woman said she was repeatedly rebuffed several years ago by nurses at a Washington area hospital after her mother started acting “stoned” after hip surgery. “She said things like ‘I’m having a dinner party tonight and I’ve invited a nice young man to meet you,’ ” recalled the daughter. She asked that her name be omitted to protect the privacy of her mother, now 96, who lives independently in Northern Virginia and “still has all her marbles — and then some.”
“The nurses kept telling me she was off all medication” and that her confusion was to be expected because of her age. “It was only when I insisted on talking to the doctor and going through her chart” that the doctor discovered that a motion sickness patch to prevent nausea had not been removed. “Within an hour, my mother was acting fine. It was very scary because if she hadn’t had an advocate, she might have been sent to a nursing home with dementia.”
Inouye, who developed the Confusion Assessment Method, or CAM scale, now used around the world to assess delirium, said that significant systemic obstacles to preventing delirium remain.
“We need to back up in our care of older patients so that we don’t treat every little symptom with a pill,” she said. Sometimes, she said, a hand rub or a conversation or a glass of herbal tea can be as effective as an anti-anxiety drug.
Two months ago, Inouye, who is in her 50s, was hospitalized overnight, an experience that underscored the ordeal that older, vulnerable patients face. “I was woken out of the deepest sleep every two hours to check my blood pressure,” she said. In addition, alarms in her room began shrieking because a machine was malfunctioning.
“Medical care,” she added, “has evolved to be absolutely inhumane to older people.”
In an effort to prevent or reduce delirium, Inouye created a program called HELP, short for Hospital Elder Life Program, currently operating in 200 hospitals around the country. While the core of the program remains the same, each hospital implements the program in different ways. Some enroll ICU patients, while others exclude them. A 2011 study found that HELP saved more than $7 million in one year at UPMC Shadyside Hospital in Pittsburgh.
At Maine Medical Center in Portland, HELP is a voluntary program open to patients older than 70 who have been in the hospital for 48 hours or less and do not show signs of delirium. ICU and psychiatric patients are excluded. The program relies on a cadre of 50 trained volunteers who visit patients up to three times daily for half-hour shifts, providing help and companionship and helping them stay oriented.
The CAM scale is built into the hospital’s electronic medical record, said geriatrician Heidi Wierman, who oversees the program and heads a medical team that sees patients regularly. HELP prevented delirium in 96 percent of patients seen last year, she said, adding that resistance by doctors and nurses to the 13-year-old program has been minimal because “we tied the incidence of falls to the prevention of delirium.”
Marylou Turpin, whose husband recently returned to their home outside Nashville, is planning to enroll him at Vanderbilt’s ICU Recovery Center as soon as possible. “I’m just hoping we can have some kind of life after this,” she said.
This article was produced by Kaiser Health News, an editorially independent program of the Kaiser Family Foundation.