The day I showed up at the hospital, Pat’s nightmare had been running almost ceaselessly for several weeks.
I found him tossing in bed, sweat pouring from his face, as he strained against the cloth ties tethering his wrists to the bed rail. A hulking man in life, Pat was diminished by illness, swallowed up by the bed on which he lay. His wife Ellen, clad in a black kaftan, scurried around his bed, pleading with Pat to calm down, lie still. She recognized me and her voice cracked as she blurted out: “Oh, thank goodness you’re here.”
“Hello, Pat,” I told him, giving Ellen’s bicep a little squeeze. Pat turned his eyes and gazed at me, from the corners of his eyes, showing the whites, like a caged wild dog encountering his jailer.
“Pat, it’s Jennifer. Jennifer Brokaw” I said.
“Why don’t you just kill me?” he yelled.
“Oh!” gasped Ellen. I put my arm around her.
“I’m just here to help you Pat” I murmured.
“Let’s go find a nurse to see if some medication might help. I suggested to Ellen. She nodded wordlessly, reached for Pat’s hand and covered it in both of hers.
Pat and Ellen led a colorful life. They owned and operated a popular nightclub. They were also political activists and local celebrities, bon vivants to be sure. Especially Pat. Although they had no children of their own, they were considered family by many people in town, they knew everybody. Pat liked to brag “My primary care doctor is chief of staff!” However, in this instance, his doctor was nowhere to be found.
At 81, Pat still had plenty of energy but he was starting to have little falls. A month before I showed up at the hospital, Pat had tripped down his steep front stairs. He’d recovered his balance at the bottom, but tested his leg and said, “It hurts like hell to put weight on it.”
Ellen made an appointment for him with the doctor.
The x-ray showed a crack in Pat’s smaller leg bone, the fibula. Pat was sent to an orthopedist, who said, “We need to do surgery,” explaining that while the fracture itself wasn’t too bad, Pat would need a screw inserted because the ligament beneath the bone had been torn.
The surgery went well and, within a day, Pat was home — but three days later, he was back in the hospital, his wound inflamed, and infected. Soon, he was running a fever.
“As soon as we got back in the hospital,” Ellen told me “everything started to go down the drain.” Antibiotics were poured in, and dressing changes and wound debridement carried out by younger doctors, the surgeons in training. Still, Pat’s wound wouldn’t heal.
Soon, he had fevers and low blood pressure, signs that the bacteria had invaded his blood. When he was sent back to the operating room for a deeper cleaning, the nightmares started. In and out of consciousness, his ramblings were unmoored from reality. In one reverie, he re-lived a trip to Paris that he and Ellen had taken over a decade before. Most of the time, he seemed to be caught up in the fray. When the nurses came in to put him on a bed pan, wash him or change his IV bag, he’d rage: “Get the hell away from me! I don’t give a goddamn what you want.”
But, every once in a while, the old Pat would emerge. On my second visit, as I approached his bed, he was quiet, his stare fixed up at the ceiling. I said: “Pat, it’s Jennifer Brokaw. You know, Tom and Meredith’s daughter …?”
I braced myself for his fury but he looked me square in the eyes, his face crinkling into a smile and declared: “Well, I’ll be damned! How’s Tom?” That was the last coherent thing he said to me, before slipping back to the abyss of mumbling, tossing, straining and then sleeping.
Pat was suffering from the upsetting condition called delirium. It’s marked by waxing and waning consciousness, disorientation and agitation. It often looks like its cousin, dementia. But there’s a major difference between the two. While dementia is a progressive and irreversible condition, delirium can come on swiftly, and can be prevented — even reversed.
Delirium is shockingly common; it’s a post-operative complication in one quarter of older adults! One third of all general medicine patients over the age of 70 show signs of delirium in the hospital. (http://www.nejm.org/doi/full/10.1056/NEJMcp1605501 )
While dementia is a progressive and irreversible condition, delirium can come on swiftly, and can be prevented — even reversed.
Delirium hits dementia sufferers more often than those with normal cognition, but during an illness, it can strike anyone, at any age. Think of the feverish child with delirious dreams, or someone you knew with a “psychotic” reaction to a drug, recreational or therapeutic. That’s delirium. It’s not fun and it’s downright dangerous for older folks.
One third of all general medicine patients over the age of 70 show signs of delirium in the hospital.
In one well-known study, patients with prolonged delirium were found to be three times more likely to be dead within a year than similar patients whose delirium resolved. (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2744464 ) And a study of ICU patients with even brief periods of delirium showed that delirious patients were almost twice as likely to die in the hospital than similar patients without delirium. (http://www.bmj.com/content/350/bmj.h2538 ) That’s why, in many hospitals, preventing, identifying and treating delirium has become a focus of quality improvement.
In one well-known study, patients with prolonged delirium were found to be three times more likely to be dead within a year than similar patients whose delirium resolved.
The risk of long-term cognitive decline after delirium has resolved has also been shown, as has the association between prior cognitive decline and delirium during an acute illness. Alzheimer’s and delirium are closely linked.
For that reason, I asked Ellen if she had noticed any confusion in Pat before the fall. “Oh, yes,” she muttered. “He was starting to forget things… He wasn’t himself.” I warned that his confusion might be worse, even if the delirium resolved. She said: “He would NOT want that!”
The treatment for delirium is multi-faceted. First, we can address the underlying medical issue that may have caused it. In Pat’s case, that was the infection. As far as I could tell, everything that could be done was being done on that front, and then some.
Second, we can do a thorough inventory of medications and possible drug interactions. Non-essential medications should be stopped.
Third, we try to help the patient find a normal sleep-wake cycle — not always easy in a hospital.
As a last resort, we can give anti-psychotic medications to calm the hyperactive symptoms Pat was showing. It also helps to keep the patient’s surroundings familiar by involving their family in their care. But being at Pat’s bedside while he was a prisoner of the restraints and his own mind was taking a toll on Ellen. She looked haggard.
The fourth day I was involved with Pat’s care was the start of the fourth week for Pat and Ellen. Ellen told me in a plaintive voice: “He would want me to let him go… but the doctors will not allow him to go peacefully.”
I wondered if the efforts of the medical team to get the infection under control were helping at all. I queried every doctor on his team; not one of them thought his chances were good. His body seemed to be not rallying, but shutting down.
After a dramatic confrontation with his surgical team, Ellen and I prevailed in getting Pat onto “comfort care”, a hospital designation that mimics hospice. Now all the attention given to Pat would be to maintain his comfort, not to treat the infection.
Calming his delirium was first on the list. We placed Pat in a dark, quiet room with minimal monitors and beeping machines. We stopped most of his medications and added some light sedation and opiate medication. Pat soon slipped into a coma. Ellen sat vigil, talking to him about their life together and reassuring him that she would be okay.
Just 12 hours later, Pat passed away.
The ordeal in the hospital was almost as traumatic for Ellen as losing Pat. She told me she would never wish that on anyone, and quickly took steps to minimize her own chances of suffering the same fate. She revised her Advance Directive making it clear to her friends and family that the hospital was NOT where she wanted to die.
Because delirium in the context of Alzheimer’s is so common, some researchers now think of dementia or Alzheimer’s as an “organizing diagnosis”, much like pregnancy. Once the diagnosis is established, certain medical treatments, like hospital stays or multiple medication regimens, can be considered dangerous, and to be avoided whenever possible, because they increase the risk of delirium.
I brought my memory of Pat, and other patients I’d known in my medical career, to the care of my uncle Bill, who suffered from early onset Alzheimer’s. My main goal in directing Bill’s medical care was to keep him out of the hospital. The very last thing I wanted for him was delirium.
With some planning, including an Advance Directive, a POLST form and on-going talks with his doctor, I succeeded. I know we were lucky, though. One bad fall with a broken bone or an appendicitis could have caused the same scenario I’d seen play out with Pat.
Older adults and adults with pre-existing dementia should stay away from hospitals or other care facilities unless it’s absolutely necessary, because delirium is a very bad trip.