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.
My mother was diagnosed with frontal lobe dementia at the age of 63. Cause: unknown. The symptoms crept up over years, in retrospect, but really got our attention following surgery to repair a broken wrist. Mom became moody and withdrawn. She had trouble speaking in complete sentences. She baked a cake and forgot the sugar. When driving, she felt compelled to pass whomever was in front of her — a white-knuckle experience for her passengers, particularly on a highway.
Later, though, she had more falls and began to walk with slow, birdlike steps, suggesting another fiendish disease at work. She was undiagnosed for quite a while, until her thoughtful gerontologist looked between the lines and found she had progressive supranuclear palsy (PSP), a neurodegenerative disease. Eventually, she would become completely rigid, and, at the end, lose her ability to swallow. Her dementia was one of the symptoms that particularly unlucky PSP patients face.
It didn’t manifest in forgetfulness. Rather, it was a series of behaviors that were off kilter at best and painfully embarrassing – and dangerous – at worst. Like wandering off holding my three-year-old at Disneyworld, swallowed by the enormous crowd as I frantically tried to follow. Eating off of a stranger’s plate at a nearby table while waiting for her dinner at the local tavern. Opening the passenger door on a highway.
Mom’s dementia was an especially startling, as she had previously been so capable in so many fundamental ways. She was a wizard with numbers and a top-performing saleswoman. She could wallpaper a room flawlessly. She sewed elaborate prom dresses, and stuffed animals and quilts that she donated to children’s hospitals. She grew and canned her own vegetables and baked, decorated and transported an elegant, three-tiered wedding cake for my cousin’s wedding. On her first trip outside the U.S., she made her way alone around Paris, not knowing the language, including a long Metro trip to return a train ticket. She got the refund. Then she drove us to Belgium – in a stick shift, of course.
Because she looked even younger than her age, and was otherwise healthy and fit, save for the blankness in her brown eyes, people she encountered were often taken aback by her behavior. But I was humbled by the kindness and humanity we encountered, especially once when Mom reached over and grabbed a pair of socks from a woman’s hands at a clothing store. The woman leaned over to me and whispered, “My dad was like that. I know. God bless you.”
She was able to express humor and love the longest. One day, two gents at the nursing home had a little shouting match, all up in each other’s faces – typical guy stuff, even though one was strapped to an oxygen tank and the other wobbled precariously behind a walker. Everyone in common area could hear their salvos:
“You talkin’ to me?”
“Yeah, you. I don’t like the way you look.”
“Well, I’m sick of your shit, too.”
“Get up! I’ll show you what for!”
I turned to see Mom soundlessly giggling. Our eyes met. Recognition.
And whenever I told her I loved her, her response came back, clear as a bell: “I love you, too, sweetheart.”
There was a lot that worked for us in the healthcare system. I was lucky to be able to take her to the one of the world’s top PSP specialists, Lawrence Golbe, who carefully examined Mom and gently confirmed the diagnosis. But much of our help came from outside the system. My parents had life insurance that kicked in when mom entered hospice and helped defray the enormous costs of nursing home care, which long-term care ombudsmen helped us find. Lawyers helped us have the necessary paperwork in place, which in turn spurred necessary talks about hard decisions; a friend who is a neurologist had given me frank advice as to what was in store for Mom. The CurePSP Foundation publishes information about the disease and organizes online discussions and local support groups. Knowledgeable and caring hospice nurses – brought in by our private nursing home – provided continuity and were our mainstay during those final weeks.
Dementia robs its victims of their chance to share their stories. But early on, I asked my mother for permission to tell hers, and she agreed. Like most patients I’ve interviewed, she wanted to help others, especially those who might follow in her unsteady footsteps.
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.
This is the first of a series exploring the impact of the Great Challenges through storytelling.
At least five days a week for the past four and a half years, 17-year-old Jimmy Braat has been traveling two miles to the home of his 73-year-old grandmother in Lake Worth, Fla. Along with his mother, Debbie, he usually stays a few hours, doing household chores, helping to change the wrappings on his grandmother’s legs that prevent swelling from lymphedema, giving her medicine.
Then, he and Debbie may take her grocery shopping. At least once a week he also accompanies her on one of her many doctor visits – to the endocrinologist, podiatrist, pulmonologist, cardiologist, or sleep specialist – lifting the wheelchair that’s too heavy for his mom to manage.
His “Grandma Del” suffers from a range of ailments that limit her mobility, including diabetes, neuropathy, and pulmonary hypertension. Jimmy’s dad passed away in 2008 from heart failure. Debbie, 52, has pulmonary hypertension and is easily winded. His family can’t afford private care, Del does not qualify for Medicaid, and Medicare covers home care only for limited situations and periods of time.
Del refuses to go to a nursing home and doesn’t want to move in with Debbie. So much of the work caring for her has fallen to Jimmy, who is an only child.
“He doesn’t mind. He never complains,” Del says. “I took care of him when he was a baby, and now he takes care of me.”
Jimmy is one of more than a million children providing some or all care for ill family members or special needs siblings. According to a survey by the National Alliance for Caregiving and the United Hospital Fund in 2005, at least 1.3 million children ages 8 to 18 help care for a sick or disabled relative, with 72 percent of these caring for a parent or grandparents.
A Growing Problem, Yet Largely Hidden
There are no recent national studies, though as many as several million youths could be caregivers now, says Connie Siskowski, Ph.D., president of the American Association of Caregiving Youth (AACY), an advocacy and resource organization. Demographics may be pushing more children into the role: People are living longer with chronic illness, and single-parent or multi-family households are increasingly common, as are grandparents raising grandchildren.
“It’s always been assumed that family cares for family, and that, of course, is true. But in the modern age when medical science performs miracles that help people live so much longer, it’s not just kids helping dad or helping grandma, it’s them actually doing medical procedures. And it’s not just for a couple of months, it’s for years and years,” she says.
A Born Helper
Jimmy’s caregiving journey began at the age of nine, when he began helping to care for his great grandmother, who suffered from dementia. He brought her newspapers, ground her pills into applesauce, and warmed meals in the microwave. She passed away when he was 13.
“He’s always been such a sweet little boy,” says Debbie Braat. “When he was real little, around six years old, I had to have surgery on my feet — one foot one year, one foot the other year. When I had the surgery I couldn’t walk around at all, but he would get up and he would do the laundry. He couldn’t even reach the washing machine, but he would pull himself up and sit on the machine.”
Of his grandmother, of whom he has always been close, Jimmy says, “She’s a difficult person. It’s not really her illness. She’s got a one-track mind. My trick is, when me and her start to argue, I just put my headphones on.”
Still, he says, ” I had a period of time when my grandmother was in the hospital for a few months and on life support for two of those months. The hardest thing for me was seeing her on life support for the first time.”
Jimmy is about three years behind in high school, he says; according to a 2006 report sponsored by the Bill & Melinda Gates Foundation, some 22 percent of high school dropouts surveyed left to take care of a family member. Now he takes high school classes through an online course offered by Palm Beach County. He is often so tired that, he says, “I end up passing out in at least one of my classes each day.” He also suffers from depression; research suggests caregiving raises the risk for depression and anxiety in child caregivers.
When he does have free time, Jimmy joins activities like camping, cooking classes and dinners sponsored by The Caregiving Youth Project in Palm Beach County, Fla., a pilot program that offers kids ages 10 and up who help family members care instruction, tutoring, home visits and activities. Though the AACY hopes to start a national network, to date it’s the only support program of its kind.
Jimmy will care for his grandmother, he says, “Up until the point where she passes away. There’s no exit strategy. Besides, there’s no one else to do it. “
As medicine and science enter the era of quantified self, a parallel movement is growing: A reflexive self, as revealed in the stories we tell to others.
In medicine, listening to stories may help clinicians better understand patient symptoms and needs, thereby giving them better clues as to how to treat. Narrative medicine encourages a holistic view, a “whole-patient” treatment that balances the disease-specific, specialty-centric mode of medicine that prevails in the U.S., and the formulaic task of updating electronic medical records that can erode the personal, intimate aspect of provider-patient relationships.
In science, narrative helps explain a language of details and theory that can seem all too arcane and abstract to a lay audience — even though they’re constructed in an effort to make sense of our existence and our universe.
An Aid to Learning and Healing
“Healthcare’s challenges will be met through relationships and through story, connecting all through the power of narrative,” says Margaret Cary, a physician who teaches personal essay and narrative medicine at Georgetown University School of Medicine.
Writing things down may be helpful for providers, she says. “What I find is that when my physician students write stories they have a way to process what previously might not have made sense to them,” she says. “When you write and tell a story, current neuroscience says that it uses more parts of your brain than reading or listening.”
And when it comes to patients, Cary says, “There’s a healing process to talk about illness. We want to be connected; we want to be heard. I know a woman who volunteers at an organization for Latina women who have cancer. A third of her support group is terminal. And the reason they’re there is they want to share their stories with others.
“It turns out that in terms of keeping us happy and to be satisfied, doing things for others works better than just going and buying something for ourselves.”
A Gathering to Explore Storytelling in Science
In the end, stories help us integrate the intricate workings of the physical world with our humanity. How do we apply these powers to the bigger picture, to understanding how science and medicine affect groups and systems?
On the afternoon of Friday, April 19th, TEDMED Delegates will explore the power of storytelling during the first Great Challenges Day at George Washington University. Delegates will explore how personal, anecdotal views can help us all come to grips with some of health and medicine’s most complex issues, revealing the holistic view needed to grapple with these widespread, systemic problems.
To preview the Day and move forward with our own conversations about the Challenges, TEDMED is beginning a new blog feature, Examined Lives: Stories from the Great Challenges. We’ll talk to patients, practitioners and those who have been directly affected by issues ranging from caregiving and sleep deprivation, to preventing childhood obesity and controlling medical costs.
Click here for more information on Great Challenges Day, and please watch for Examined Lives.