It is a ghost disease.
More than 2 million Americans are haunted every year by postoperative delirium, a strange, creeping state of confusion that the medical profession admits it neither understands nor can cure.
It is a problem that affects the brain, divorces its victims from reality and plunges them into a state of derangement — and few doctors can tell them why. Indeed, physicians usually cannot even see the symptoms of this disease until the patient already is in its grip.
I know about this harrowing syndrome because it overtook me last summer after I was sent to the hospital following a fall in my apartment building. I had surgery to repair my hip as a result of the fall, but the greater injury was the delirium associated with that hospitalization. It turned my life upside down, leaving me in a lingering state of confusion, anxiety and befuddlement, flailing for answers.
I am a retired journalist and, in the months it took me to recover, I began to research the persistent, unsettling symptoms I had experienced. I learned that I was not alone.
Up to 46 percent of all surgery patients are struck annually by “postoperative delirium,” a little-known, little-appreciated condition in hospitalized patients that is marked by confused thinking, disruption of mental faculties and anxiety.
The syndrome hits elderly patients particularly hard. An article published in the New England Journal of Medicine in 2006 by Sharon K. Inouye found that up to 53 percent of patients over 65 who undergo surgery experience delirium. In the intensive care unit setting, delirium has been reported in up to 87 percent of patients. A best practices statement in 2015 by the American Geriatrics Society identified delirium as the most common post-surgical complication in aging adults.
An expert panel of the Geriatrics Society estimated that the annual cost of delirium is $150 billion. But it called the syndrome a “particularly compelling quality improvement target, because it is preventable in up to 40 percent of patients.” The panel said it was “imperative that clinicians caring for surgical patients understand optimal delirium care.”
This quiet epidemic has alarmed researchers, but hospitals and caregivers are only beginning to understand it. Meanwhile, the disease terrifies and bewilders patients and their families: It strikes with no warning, plunging its victims from reality into a near-psychotic state, characterized by incoherent thoughts, restlessness and anxiety. It did that to me — and I did not see it coming.
My encounter with this disease began last August when I was struck by a heavy metal utility door while emptying the trash in my Washington apartment building. The blow knocked me to the floor with pain so severe I couldn’t get up. I was eventually rescued by concerned neighbors who managed to get me to my apartment and call an ambulance.
At George Washington University Hospital, an X-ray revealed I had broken my hip, and I was immediately dispatched to surgery to set the broken bone.
I remember little else, until I awoke in a rehabilitation facility where I would be confined for five weeks, racking up $16,000 in bills that were not covered by Medicare. Throughout that period, and for weeks after, I behaved erratically, imagining things, unduly suspicious of the medical staff and worrying my friends.
That’s what post-surgery delirium is like. After you get out of the operating room, you simply aren’t there. You don’t recall the surgery, and your memory of key aspects of your life is wobbly. You have difficulty framing words and even simple sentences. The doctors call this cognitive loss. It can last from a few days to a few months or years.
Besides memory loss, there were also hallucinations. You imagine things that never happened, and you probably behave erratically. I had imagined overhearing nursing facility staff engaged in ominous conversations and demanded that management call the police so they could be arrested.
I was genuinely scared. I thought the staff were engaged in an opioid conspiracy and remember thinking that the walls of my room were dissolving as I heard screams around me. The terror lingered.
This irascible behavior prompted the head nurse at the rehabilitation facility to decree that I was very, very sick and should be placed on a mattress on the floor and provided with a round-the-clock minder — shifts of nurses’ aides who sat in my room to watch me so that I wouldn’t hurt myself or the rehab facility’s personnel.
Horrible as it was, experts tell me it could have been worse.
Christina Prather, a geriatric specialist at George Washington University Hospital, said it is not uncommon for delirious elderly patients to be strapped to their beds. This approach — still standard practice at many medical centers — is inappropriate in dealing with delirium, which requires close observation.
The first step, according to Inouye, director of the Aging Brain Center in Boston and a professor of medicine at Harvard University, is getting doctors to recognize delirium as an issue. The problem is severe, she wrote in the New England Journal of Medicine article, noting that delirium “often initiates a cascade of events culminating in the loss of independence, increased risk of mortality, and increased health-care costs.”
The problem complicates hospital stays for at least 20 percent of the 12.5 million patients 65 years or older who undergo surgery each year, boosting hospital costs by about $2,500 per patient.
Delirium, she wrote, “is a state that causes severe results and is characterized by loss of orientation and impairment of attention and memory.” Despite the severity of the symptoms, she reported 33 to 66 percent of patients remain undiagnosed. Rates of delirium were highest among hospitalized older patients, hitting 70 to 87 percent of elderly patients in intensive care.
“Determining the change in [a person’s] mental status is the essential first step,” Inouye wrote, noting that drug reactions are thought to be the source of the problems.
I learned from my primary care physician that my problems may have been tied to an allergic reaction to the anesthesia used during my surgery. It was probably exacerbated by the opioid painkiller that the rehab facility continued to use in heavy doses. When the drugs were stopped, I began to return to normal, but the damage hung over me for weeks. Even months later I felt I had not fully recovered.
My friends had to join me in coping with what we were told were “cognitive problems.”
For weeks after leaving the rehabilitation facility, I would find myself racking my brain to recall my home address or use a familiar word. Often, I thought about death. The worst thing was that I had no clear idea what was wrong.
I had help from two important places.
The first was from my primary care doctor, Nicholas Kohlerman. He first recognized my symptoms. He recalls how I walked into his office several weeks after having been released by the rehab facility and asked, “Please, can you help me?”
He looked at the several dozen vials of medicines that I had been taking and threw away about 20 of them. And he sent me for a magnetic resonance imaging (MRI) test to determine whether my condition had affected my brain. Since Kohlerman had been my physician for several years, he had known me when I was well, and that I had been healthy for virtually all of my life — an important element in being able to spot signs of delirium and put things into perspective.
When the tests came back, Kohlerman provided a cogent explanation.
“You were out of it,” he wrote in an 11-page report. “You did not and could not respond in an intelligent way. Your speech was slurred at times. You lost words. You were not sleeping or eating. You told me you thought you were dying. You were grossly overmedicated, in my opinion.”
His assessment was that I had been suffering from psychosis agitation caused by delirium, which he diagnosed as an insult, an injury to the body caused when transient blood flows into the brain. He said he found little wrong with me physically, apart from arthritis in my left knee, which I assumed resulted from the hip surgery. Psychologically, however, I was a mess.
The second source of help was Mark Ohnmacht, executive director of the Cleveland & Woodley Park Village, a D.C. nonprofit, aging-in-place organization that sends volunteers to assist with everything from folding laundry to providing rudimentary computer advice.
He advised me — and other elderly people — to formally designate a friend or relative as an outside “advocate,” empowered to deal with financial and medical questions when the patient is in the hospital, especially in cases where delirium appears.
The advocate can also assist medical professionals with determining that there has been a change in the patient’s mental status.