The Limbo Between A Life Worth Living And Death Posted by Daniela Lamas February 21, 2014 In 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 s ons 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 uri nary-tract infection. Worried that something more serious was amiss, however, At kinson 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 wa s sent to the hospital s intensive-care unit, where he eventually was diagnosed wi th 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 recogniz e 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 improv ement, a limbo known as chronic critical illness. The phrase was first coined in the nineteen-eighties to describe patients who su rvive a devastating illness or surgical procedure but who remain dependent on li fe support. It is the most profound example of a widening gap between merely sur viving the I.C.U. and fully recovering. While those who leave the I.C.U. alive o ften carry scars, the chronically critically ill typically cannot breathe withou t a ventilator, are prone to infection, and suffer from brain dysfunction that r anges 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 instit utionalized, 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 a n aging population. The chronically critically ill are often transferred from general hospitals to i nstitutions 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 phot os that show patients smiling in younger and healthier days, while the air smell s of talcum powder, antiseptics, and bodily fluids. The nurses, in cheerful yell ow disposable gowns, dispense dozens of daily medications against the steady bac kbeat of beeping cardiac monitors and whooshing ventilators. Families sit by bed s day after day, marking movement toward goals that are measured in weeks to mon ths, not days: getting off the ventilator, or regaining enough strength to sit u p 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 Ca mbridge, Massachusetts, others slowly come to the realization that they re not gett ing better. The facilities are little known to the public, and even poorly understood by man y physicians, since most doctors who work in acute care never have occasion to w ork 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 i n a conference room outside the I.C.U. The eighty-year-old man, whom I ll call Jam es 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 tub e, inserted through the mouth, past the vocal cords, and into the windpipe, is s

o 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 venti lator, Smith still couldn t breathe, so I talked to his wife about a tracheotomy a s urgical 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 percutaneou s endoscopic gastrostomy the insertion of a feeding tube that trickles liquid meal s 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 w ho 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 t he tools the language and the experience to explain chronic critical illness to my p atient s family, perhaps I could have better approximated what Smith s life might lo ok like if we went forward with the tracheotomy. But I.C.U. doctors are typicall y separated from their patients long-term outcomes, and prognostication itself is an imperfect science, making these types of conversations fairly routine. Judit h 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 fam ilies, explained to me that while we know people want more information and need m ore support, we don t know at what point people can absorb and integrate an unders tanding 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 gener al trajectory. Indeed, that was the information gap facing Charlie Atkinson and his family when he arrived at Spaulding in September of 2012. His wife, Jeannett e, remembers that she had little idea what lay ahead. I just felt relieved that h e d survived, she told me, when I first met her and her husband this past summer. Bu t 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 At kinson 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 phy sical 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 m osquito bite that caused his West Nile Virus, Atkinson returned to his home, whe re I visited him recently. On the day I stopped by, sitting up hurt more than us ual, 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 fif teen 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 su ctioned 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 ro om to a newly installed lift to carry Atkinson to the second floor. Slowly walki ng 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 tim e. When dinner was ready, we made our way back down to a table filled with roast ch icken, apple cobbler, and vanilla ice cream. Charlie s appetite isn t what it was be fore West Nile, but he still marvelled over how he had recently enjoyed his firs t tastes of solid food after months with a feeding tube. When we finished eating , the Atkinsons stepped away to the bathroom, where Jeannette suctioned secretio ns 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 th e lucky ones. Without tennis, he s found pleasure in playing piano. He recently re turned to M.G.H. to have his tracheotomy tube removed, which will allow the smal l hole in his neck to close and scar. But luck looks different here. I do not know what it will look like for James Sm ith, 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. Yo u gave us hope, she told me. And so we took that hope. Daniela Lamas is a fellow in critical-care medicine at Massachusetts General Hos pital, in Boston. 5 comments Sign in 18 people listening Newest | Oldest jeanjames6 days ago As an ICU nurse I am part of a healthcare system that creates the chronically c ritically ill. We all lament in our moral distress over the issue of helping so meone survive only to see them permanently impaired. It is distressing to see p atients who are overwhelmed by their medical issues kept alive when the outcome will not improve quality of life. I'm so happy for the patient you profiled her e in this piece, but we know this is not the norm. I am a strong proponent that the time to ask a family member to make a choice ab out their loved one is not at the bedside in the ICU. This conversation must ta ke place long before people become critically ill. Healthcare professionals nee d to be proactive in determining people's feelings about life sustaining care or a Do Not Resuscitate (DNR). These ideas should be a conversation with the pati ent and their family so everyone has a clear understanding of the wishes of thei r family member. If this has not been done then honesty is always the best poli cy here and families should have a crystal clear picture of the road ahead. Hopefully this piece will get the conversation started. cdatkinsFeb 26, 2014

To the readers of Daniela Lamas I the New Yorker Online Yes I am Charlie Atkinson whose story I am still living. She has done a wonderfu l job of capturing the perilous journey. I can add that, in the rear view mirror , there were so many junctures where it could have easily gone the other way. If I had not gotten home from my self drive from Peterborough Playhouse If my wife had not checked on me before driving back to Cambridge If my daughter has not been so insistent with the doc in New Hampshire that I di dn't have just a UTI If I had not gotten to th ICU and RACIat MGH If I had not worked with the pulmonologist to get me back on the vent after wean ing me from it If I did not get to stay at Spaulding with Blue Cross Blue Shield paying for it because of return to vent If Lauren, a PT Aide had not recommended me to Emese ...the PT who got me vertic al If Samdra had not provided the tough love that kept me in the rehabilitation gam e If Tricia had not recognized the in appropriateness of the C-PAP If the entire Camridge Spaulding team had not provided such wonderful caring car ....not perfect but enough to get me home If may friends from all parts of my life. Had not railed round with support If my family has not been there to solve every problem and turn our house into a home for the new me I am thrilled to share my story. I feel that I can offer a lot to others and I a m more available Last weekend was walking outdoors with a cane with Emese TheaKantorskaFeb 26, 2014 @cdatkins Carry on! TheaKantorskaFeb 24, 2014 I wish The New Yorker would find space, between its noisy tabs "Most Popular" an d "Most E-Mailed", for articles like this one. For a tab maybe titled "Most Thou ghtfully Open-Ended". Thank you for this simple, non-invasive, yet deep-probing piece. nathangatesFeb 24, 2014 Indeed. Perhaps something like an Editor's Pick for recent pieces that aren't ge tting the notice they deserve.