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Saturday, March 22, 2014

The Limbo Between a Life Worth Living and Death

ColinGray-290.jpgIn August, 2012, Charlie Atkinson was playing the best tennis of his life. With a newly perfected forehand, the seventy-six-year-old had recently trounced his sons in a doubles tournament. But one day, while travelling with his family from his home in Cambridge, Massachusetts, to New Hampshire, Atkinson came down with an intense fever. At a local emergency room, doctors suspected that he had a urinary-tract infection. Worried that  something more serious was amiss, however, Atkinson’s son had him transferred to Massachusetts General Hospital, back in Boston. By the time Atkinson arrived, he was paralyzed with polio-like symptoms. He was sent to the hospital’s intensive-care unit, where he eventually
was diagnosed with a severe case of West Nile Virus. He had been felled by a mosquito.

After a month in the I.C.U., Atkinson was well enough to leave the hospital. He had “made it.” But he remained dependent on a ventilator and confused—able to recognize his own name and little else. He didn’t know it, but he had crossed an invisible threshold into a territory of protracted sickness and uncertain hope  for improvement, a limbo known as “chronic critical illness.”

The phrase was first coined in the nineteen-eighties to describe patients who survive a devastating illness or surgical procedure but who remain dependent on life support. It is the most profound example of a widening  gap between merely surviving the I.C.U. and fully recovering. While those who leave the I.C.U. alive often  carry scars, the chronically critically ill typically cannot breathe without a ventilator, are prone to infection,  and suffer from brain dysfunction that ranges from intermittent agitation to a coma. Worse, they have dim  prospects for getting better. Half die within a year; those who press on tend to remain institutionalized, with only ten per cent ever returning to independence. At any given time, there are a hundred thousand or so such patients in the United States, a number that’s expected to grow with improvements in life-saving technologies and an aging population.

The chronically critically ill are often transferred from general hospitals to institutions known as long-term acute-care hospitals, which resemble an admixture of a nursing home and an I.C.U. Inside, the walls are often decorated with photos that show patients smiling in younger and healthier days, while the air smells of talcum powder, antiseptics, and bodily fluids. The nurses, in cheerful yellow disposable gowns, dispense dozens of daily medications against the steady backbeat of beeping cardiac monitors and whooshing  ventilators. Families sit by beds day after day, marking movement toward goals that are measured in weeks to months, not days: getting off the ventilator, or regaining enough strength to sit up on the side of the bed.  While some patients do improve, said R. Nicholas Nace, the associate medical director of Spaulding Hospital for Continuing Care, in Cambridge, Massachusetts, others “slowly come to the realization that they’re not getting better.”

The facilities are little known to the public, and even poorly understood by many physicians, since most  doctors who work in acute care never have occasion to work in a long-term acute-care hospital. I had never visited one until recently, and, when I did, I was driven by curiosity, not mandate. This means that doctors who take care of the sickest patients often do so without a clear understanding of what comes after the I.C.U.

Not long ago, I had faced this uncertainty when I sat down with a patient’s wife in a conference room outside the I.C.U. The eighty-year-old man, whom I’ll call James Smith, had been healthy until a virus severely exacerbated his emphysema. He was placed on a ventilator, which is a temporary solution: the thick plastic tube, inserted through the mouth, past the vocal cords, and into the windpipe, is so intrusive that patients often require painkillers and sedatives to tolerate it, Within weeks, the tube can damage the vocal cords. After two weeks, on a ventilator, Smith still couldn’t breathe, so I talked to his wife about a tracheotomy—a surgical procedure that creates a small hole in the neck, which serves as a more permanent entry point for the breathing tube. While patients with tracheotomies don’t always require breathing machines, many do at first, and, since most people can’t eat while connected to one, the procedure is often paired with a percutaneous endoscopic gastrostomy—the insertion of a feeding tube that trickles liquid meals directly into the patient’s stomach. The procedures occur as a set so frequently that in the medical field they’re often referred to by a nickname: the trach’-’n’-PEG.

“Do we have a choice?” Smith’s wife asked me. She told me that her husband was a man who danced on tables, and that she had promised he would never end up a “vegetable.”

“We could take him off the ventilator,” I told her.

“Will he die if we do that?”

“Maybe,” I replied. “Probably.”

“And the tracheotomy—will that come out?”

“We hope so,” I told them. “That’s the goal. But we don’t know.”

The next day, Smith’s family agreed to the tracheotomy.

Our conversation might seem inadequate, or my counsel uncertain. Indeed, had I the tools—the language and the experience—to explain chronic critical illness to my patient’s family, perhaps I could have better approximated what Smith’s life might look like if we went forward with the tracheotomy. But I.C.U. doctors are typically separated from their patients’ long-term outcomes, and prognostication itself is an imperfect science, making these types of conversations fairly routine. Judith Nelson, a critical-care physician at New York City’s Mount Sinai Medical Center who has studied how chronic critical illness is communicated to patients and families, explained to me that while “we know people want more information and need more support, we don’t know at what point people can absorb and integrate an understanding of all this in their decision-making. If we were to tell them in the I.C.U. how it might be, would that really make a difference? Would they be able to hear it? And if they did hear it, would they actually decide differently?”

Part of the problem when it comes to communicating possible outcomes of chronic critical illness is that it is sometimes not possible to offer more than a general trajectory. Indeed, that was the information gap facing Charlie Atkinson and his family when he arrived at Spaulding in September of 2012. His wife, Jeannette, remembers that she had little idea what lay ahead. “I just felt relieved that he’d survived,” she told me, when I first met her and her husband this past summer. “But then there were setbacks.” While Atkinson’s delirium cleared within a few months, he could not stand, despite months of physical therapy. The doctors said that Atkinson seemed to have gotten as far as he would get. “They pronounced me plateaued,” Atkinson remembered.

By this past July, though, thanks to the attention of a particularly skilled physical therapist, Atkinson walked two hundred yards with the aid of a walker, and was eating without a ventilator. In October, some four hundred days after the mosquito bite that caused his West Nile Virus, Atkinson returned to his home, where I visited him recently. On the day I stopped by, sitting up hurt more than usual, and nerve damage from the virus has left his hands and feet achingly cold, so Atkinson greeted me from a hospital bed that he had ordered from eBay for fifteen hundred dollars. (Such beds typically cost around sixteen thousand dollars.) Improved muscle strength had freed him from the nighttime ventilator, but his cough was still weak; secretions built up and still needed to be occasionally suctioned through his tracheotomy. Helpers rotate through his house, day and night, because he can’t be alone.

After his wife placed dinner in the oven, Charlie Atkinson wanted to take me on a tour. He swung his legs over the side of the bed, and used the strength of his arms to propel himself toward his walker. We moved
slowly through the living room to a newly installed lift to carry Atkinson to the second floor. Slowly walking up the stairs beside him, I asked Atkinson if this was all ever too much. He told me no. “I was a rower,” Atkinson said. “I know how to put the oar in one more time.”

When dinner was ready, we made our way back down to a table filled with roast chicken, apple cobbler, and vanilla ice cream. Charlie’s appetite isn’t what it was before West Nile, but he still marvelled over how he had recently enjoyed his first tastes of solid food after months with a feeding tube. When we finished  eating, the Atkinsons stepped away to the bathroom, where Jeannette suctioned secretions out of Charlie’s tracheotomy before they said goodnight to me. At home, with a clear mind and with the promise of further recovery ahead, Atkinson is one of the lucky ones. Without tennis, he’s found pleasure in playing piano. He recently returned to M.G.H. to have his tracheotomy tube removed, which will allow the small hole in his neck to close and scar.

But luck looks different here. I do not know what it will look like for James Smith, nor for the dozens of others I’ve ushered into chronic critical illness over the years. When I last saw Smith, a week after he transferred from the I.C.U. to a long-term acute-care hospital, he was still on the ventilator, in and out of dim wakefulness, fighting a new case of pneumonia. I asked his wife whether she had thought again about the decisions we’d made that day in the conference room. “You gave us hope,” she told me. “And so we took that hope.”

Daniela Lamas is a fellow in critical-care medicine at Massachusetts General Hospital, in Boston.

Photograph by Colin Gray.

Reblogged from The New Yorker

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