“I feel like my health is not her first priority…so I have to make it mine.”
“For a quadriplegic like myself, your muscles aren’t working correctly….your body doesn’t allow you to pick up a fork the way you used to pick up a fork.
“Four grand was cheaper than me getting health insurance.”
These are just a few quotes from Patient Translations, a multi-faceted art project that will be shown at TEDMED 2013.
The work includes a visual art installation, recording studio and voices of people talking about the experience of being a patient, supporting a patient, or managing health. Public users can use an iOS app and website to hear patients’ voices as well as to share their own stories.
“It was a confluence of interests,” Sherman says. “I’ve made a lot of artwork that tells stories through language and both of us are really interested in slightly taboo subjects, things that are a little bit more laden emotionally.”
Burgund agreed that the topic of health lends itself to poignant storytelling.
“There is anxiety and fear for what’s going to happen to yourself or people you love. It’s these sort of moments where people are really to express a lot about who they are as individuals,” he says.
The work also gave the artists a chance to portray a universal though often hidden experience, they say.
“Health is so connected to everything we do daily. A lot of people say, ‘I don’t have any healthcare stories,’ but as soon as you start talking with them, they remember, ‘Oh, there was this time I had to bring my kid to the hospital, and it was so nerve-wracking,’ ” Burgund says.
Conversely, patients who have had traumatic experiences or are dealing with a chronic disease may be less likely to discuss its pervasive life influences, Burgund says.
“It was something that was different about these patients’ lives, but they couldn’t talk about it at work, for example. There was this kind of social veneer preventing it. So being able to share what that experience felt like was probably cathartic,” he says.
To share a health story, download the Patient Translations app or visit the website.
I remember the first story. It was my first day of eight months working in an HIV clinic in Trinidad; I was unsure of where to go, when a young woman sat beside me. She looked to be in her late 30s. HIV had begun to ravage her body, her bones eerily visible, her teeth chattering with fever. She simply started talking, as if she had been waiting for this moment to tell her story. I listened. This woman taught me volumes about HIV and a person’s experience with a disease that carries such stigma. What I remember most though, is when she told me about her boyfriend. “He loved me,” she said. “He knew he was sick and he kept telling me, ‘Don’t be like me. Don’t you be like me.'”
The ideas of narrative medicine enlivened me from the moment I heard them at a conference nearly five years ago. I had recently “converted” from my fourteen-year dream of veterinary medicine to “people medicine” because I simply wanted to do more to help, and with human medicine, I could save lives, heal, or be present and fight for patients who needed it. I was filled with ideals. I still am. Naomi Shihab Nye told me once that without idealists in the world, no good would ever happen, and I try to live by that. I felt elated and affirmed that these ideals of how I wanted to practice medicine—to be present, to listen, to work the person’s story into the standard history and physical—could be reality. From that point, I read as much as I could by physician-writers like Danielle Ofri and Abraham Verghese, and read Narrative Medicine; Honoring the Stories of Illness by Rita Charon, a pioneer of the narrative medicine movement from Columbia University. I wanted to learn how to listen, how to carve out time, how to maintain compassion.
Everywhere I turn, there are stories. In Trinidad, part of my job as a clinic volunteer was simply to sit and listen to patients share their experiences, their fears, their hopes. I could borrow an office, sit beside a hospital bed, and just be present. These patients told me of stigma and strength, of abandonment and suffering and the things that kept them alive. They gave me Winnie the Pooh stickers, mangoes, and perspective.
As a medical student, perhaps one of the greatest blessings is the gift of time. We are only expected to carry only three or so patients on any clinical rotation, and so have the ability to spend the extra ten minutes just to listen. In these moments, I have heard sources of strength in the patient who told me of her developmentally delayed 12-year-old, or the man who told me that he had just got married in the hospital a month ago, after coming out of a coma. I have picked up on idiosyncrasies that indicated cognitive decline and felt edges of fear in questions about a recent diagnosis.
Rita Charon once wrote, “I was thinking of receiving the stories as gifts.” There truly is no greater privilege then to be allowed to bear witness to someone, particularly in the place of vulnerability that is a medical setting. It is a chance to see the individual behind the illness. As a future physician, it is my duty to take those extra few minutes and listen, notice; healing is not simply eradication of the physical maladies but, as is present in Georgetown University’s motto, cura personalis, care of the whole person.
Nichole Boisvert is a third-year medical student at Georgetown University. For more from our narrative medicine series, click here.
We all want to die quickly and easily, and old. But now that everyone has a cell phone in his pocket and transport to a hospital is rapid, the sudden heart attack, massive stroke, hard fall, or even pneumonia that would have swiftly ended a life a couple of generations ago is less likely to kill you and more likely to get you admitted to a hospital and intubated. At that point, decisions must be made.
Intensive care is the place where we hold back death after an acute illness or injury, largely by breathing for patients with machines and by stabilizing their vital signs with a host of powerful drugs. Some patients do well and recover, others can’t, and sometimes a patient’s family realizes that his health won’t meaningfully improve, or that he would not want to live in his condition, and decides to withdraw care.
The first time I saw this was haunting. I was a brand new nurse, and I knew the patient because I’d cared for her previously. She’d had a devastating stroke, and almost no visitors in over a month. Her body had deteriorated in many ways, and we were juggling treatments, fighting a losing battle. The family made the decision to withdraw care from afar. Her eyes were always open, and it was possible that she was conscious but unable to respond with any type of movement. There was no way to tell.
She’d been taken off the ventilator and given morphine to ease her discomfort from air hunger. At the end of my shift I walked by her room and saw it darkened, the monitor off, the whites of her eyes the only pops of light. I was shocked to see her left alone in her last hours. I snuck in and squeezed her hand, talked to her a little, told her she would be okay soon.
The second time I saw care withdrawn was almost joyful. The patient was elderly and his wife was confident that he didn’t want to live on life support. Now off of the vent and breathing insufficiently but independently, his nurse said he seemed so much better. He looked comfortable, his arms free from the restraints he’d been struggling against, and his blood pressure, which had been high enough to require pushes of IV labetelol, was now normal. “He was fighting it so much,” she said. His wife stood at the foot of the bed while I helped my friend bathe him. “Give his bottom another wipe,” she said. “This is probably the last time.”
Last week my own patient had care withdrawn. He was in his nineties and had broken his spine in a fall, going overnight from independent to intubated and on vasopressors, to keep him breathing and to maintain viable blood pressure. His aging children were scared to enter his room. They peered through the glass door, asking me, “What’s his prognosis? What’s going on? He wouldn’t even know if we went in there now, right?”
I explained what they were seeing and told them that now he was stable, but without the treatment and the ventilator, he wouldn’t be. And I told them that for the last few hours he’d been responding to me by sticking out his tongue when I asked, so I thought he would know that they were there. Did they want me to go in with them? No. They went to the waiting room.
Talking with the surgeon, our ICU fellow, and me, the family easily understood that a major operation, at his age and with his underlying health conditions, wasn’t a good option. Without surgery, we could continue to care for him and hope that he would become stable enough to leave. Given his injury, leaving the ICU would mean moving to a nursing home and having a feeding tube, perhaps being dependent on a ventilator, and certainly being unable to walk. The likelihood of complications in the ICU was high—he was susceptible to infections, he already had heart disease, and his blood pressure, dangerously low due to his injury and now maintained medically with an aggressive, titratable IV drip, might not stabilize. There was a real possibility that he would never become healthy enough to leave.
Otherwise, we could cease intensive management and let the natural effects of his injury take their course, focusing on his comfort.
They asked about thinking it over for a day or so. This is always an option, but I hoped they wouldn’t take it. I was the one tightening the man’s restraints to keep his hands away from the tube and talking close to his ear, telling him we would keep him as safe and comfortable as we could. But after asking us to step out and talking briefly, they’d decided. Under these circumstances, their father would prefer to have medical care withdrawn.
The doctor explained that we didn’t know if the patient would breathe on his without the ventilator, but that we would give him morphine and make sure he was comfortable. I had a Catholic priest come to perform last rites, and stood with the family as they prayed and wept.
The doctor said now that he knew what their father wanted, it was his job to carry it out, trying to absolve them of the sense of responsibility. I don’t think that was what upset them though—and I told them it was okay to be sad that he was dying. “It’s better not to be sick for a long time,” I said. “I don’t disagree,” said the patient’s son. “I just can’t believe it.” His daughter noted the musical tone of our ventilator alarms, and said that he would have told them about it, that he loved music and dancing.
They wanted to leave before we took their father off the ventilator and stopped the medications. I reminded them that he had been responsive, and since he’d had his last rites, probably knew what was going on. But they chose not to say goodbye, telling him they were getting lunch and would see him later.
I wanted to get it right. I wanted to catch up on my other patient so I wouldn’t have to leave this one alone while he was dying. The doctor put in orders to withdraw care and discontinue the medications, but I wanted to wait until the tube was actually out before stopping those, because I didn’t want him to die while he still had a plastic tube taped to his face and snaking down his throat, pushing air into his lungs.
When everybody was ready, the respiratory therapist, doctor and I gathered in the room. I was hushing people when they said something too bluntly or matter-of-factly, reminding them that the patient, though sedated and not alert, had been able to follow commands. I held his hand and said, “Don’t worry, it’s okay, we’re going to take this tube out because we want you to be comfortable.” That was the best thing I can think of to say—it was true.
With the tube out he didn’t struggle at all, and with the meds off, his blood pressure was dropping. He didn’t need the morphine. He was comfortable. He took a few breaths. While the doctor and I stood by him, his daughter called. I told her that we’d just taken out the tube and he was passing very quickly, that it wasn’t going to take hours or days. He was going now, as we spoke.
In an ICU, the monitor displaying vital signs in a patient’s room is connected to a central system. Alarms for asystole—no heart beat—or other problematic values flash across every monitor on the unit to alert us. When this happens, nurses will stop by the room to see what’s up. Under normal ICU circumstances, the bright lights are on, many people are moving quickly in the room, and we gather, watching to learn, to step in if another person is needed to push a drug, do CPR, or keep track of the interventions, and to be available as a runner for supplies. When care is withdrawn, the monitor in the patient’s room will be off, or silenced, but alarming values are still displayed throughout the unit. But in the room, there’s no drama—just one patient, sometimes the family, one nurse, a doctor.
An intensive care unit is not the ideal place to try to let a life end peacefully, but there’s not always the opportunity to arrange something else. When a decision is made to withdraw care, stop interventions, and let someone die, we do our best. This is what it looks like.
Kristen McConnell, R.N., works in a specialized intensive care unit in a large academic hospital. Read more of her work here.
For more about the Great Challenge of coming to grips with end-of-life care, click here.