“Tell me,” my patient’s daughter asked at the other end of the phone line. “Is she stable?”
I wasn’t sure how to answer.
My patient hadn’t been home in nearly three months. It had all started to come apart in the fall. Until then, she’d been a healthy 90-year-old who lived alone and cooked all her own meals, played tennis in the summer, binged on movies in the winter. But then there was a strange pain in her back, a visit to an urgent clinic and a harrowing ambulance ride to the emergency room. A tear had developed in the wall of her aorta, one of the main vessels carrying blood from the heart. In a windowless conference room, the doctors told my patient’s family that without emergency surgery, she would most likely die.
To her family’s relief, the surgery went well. But there were complications – first pneumonia, then kidney failure, delirium, profound weakness. After two weeks she hadn’t died, but she hadn’t recovered, either. Because she was still dependent on the ventilator, her doctors took her back down to the operating room for another procedure, a tracheotomy, cutting a small hole in her neck to serve as a more permanent connection for the ventilator. Because patients with tracheotomies can’t eat using their mouths, at least not at first, she returned from the O.R. with another new tube, a feeding tube in her stomach.
Another few weeks passed in the I.C.U. It seemed that as soon as one infection got under control, another developed. From time to time, my patient’s delirium seemed to clear – when she was strong enough to breathe through the tracheotomy without the ventilator, she could speak with her family and offer one-word answers to questions. Her whisper was so soft they could barely hear her. On other days she was scared and wild-eyed, hands bound with soft “mitten” restraints to keep her from pulling out the feeding tube that delivered the thick white liquid slurry pumping from a bag on an IV pole above her head directly into her stomach.
One day, her family learned that she had a bed at another facility, called a long-term acute care hospital. This was good news, her doctors told the family. It meant that this weak, intermittently delirious woman who looked nothing like the spry 90-year-old who’d come to urgent clinic some months before didn’t need the I.C.U. any longer. They were cautiously optimistic.
In this new hospital, she did get better. Some days she managed to stay off the ventilator for eight hours, then 12, then a day, then two. Her tracheotomy was removed and the hole in her neck started to heal. Her delirium lifted, replaced by a dull, lifeless gaze. Her kidneys improved. And then, things stopped getting better. Time slowed. There she was – neither dead nor truly alive – stuck, it seemed, in limbo.
One Saturday, she spiked a fever. Her breathing grew ragged. Back in the E.D. she was intubated once again, then sent up to the I.C.U., where her daughter called us to ask, “Is she stable?”
I debated about how to respond. The ventilator was delivering sufficient oxygen. Intravenous med drips were acting directly on her heart to keep her blood pressure at an acceptable level. Her kidneys were functioning to make urine.
But behind the façade of stability was a more dire truth: she might never get better. With her constellation of ventilation dependence, infections and delirium, she had what doctors call “chronic critical illness.”
Her story isn’t unique; there are about 100,000 chronically critically ill patients in the United States at any one time, and with an aging population and improving medical technologies, this number is only expected to grow. The outcomes of these patients are staggeringly poor. Half of the chronically critically ill will die within a year, and only around 10 percent will ever return to independent life at home.
Chronic critical illness is not something I learned about in medical school, or something that many doctors even talk about. One reason might be that the care for the chronically critically ill quite literally takes these patients out of our view – they move, as my patient did, from hospital to long-term care and back again, accompanied by a growing stack of medical records as things slowly fall apart.
In the early moments of critical illness, the choices seem relatively simple, the stakes high – you live or you die. But the chronically critically ill inhabit a kind of in-between purgatory state, all uncertainty and lingering. How do we explain this to families just as they breathe a sigh of relief that their loved one hasn’t died? Should we use the words “chronic critical illness”? Would it change any decisions if we were to do so? Here, I find that I am often at a loss.
I was quiet on the other end of the phone line that night. Was my patient stable? For the moment, she was. But with each event like this one, and there would be more, my patient would move further from the hope of ever reclaiming that life she had had in the fall: living in her own home, watching movies, cooking. I felt that I could see the weeks and months spooling out, a moment of calm, a new emergency. But this wasn’t the time to tell her daughter, not on the phone, not tonight.
And so I told her the truth – one truth, at least. Her mother was critically ill, but stable for the night.
Dra. Daniela J. Lamas
Pulmonary and Critical Care Fellow at Brigham & Women’s Hospital de Boston
Intensive Care Physician (SATI / UBA)
Hospital Italiano de Buenos Aires