TEDMED has a new partner in improving health: The online publisher Big Think.
Like TEDMED, Big Think’s mission is to provide a window into multi-disciplinary views, to inspire conversation and breakthrough thinking. What will happen when the two combine brain power? We’ll find out soon: Big Think will co-curate special stage programming dedicated to transformational leaders inside and outside of health and medicine, and send a special delegation to the TEDMED gathering on April 16-19th, 2013.
Big Think’s goals are expanding, as their President Peter Hopkins says, to “focus on big ideas, and then, help you put the ideas into practice.” To that end, they’ll also be working with TEDMED on an upcoming series on how to apply emerging ideas in health and science to your own life, offering lessons from experts in the field of personal health.
They make peace with death – and incorporate it into life. They’re redefining cancer and launching a citizen science project to map our biomes; they’re inspiring with the spoken word and crowd-sourcing art. Presenting our latest group of speakers for the upcoming TEDMED 2013 program:
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.
In 1900, the leading causes of death in the U.S. were flu, tuberculosis and gastrointestinal infections. Today, they are heart disease, cancer, and chronic respiratory diseases, with stroke and diabetes in the top ten – largely preventable conditions.*
The problem is, our healthcare system, devoted as it is to acute, curative care, still thinks it’s 1900, with disastrous results. As Ali Ansary, Sandeep “Sunny” Kishore and Jacob Scott, all TEDMED 2012 speakers, wrote in The Huffington Post,
“With increasingly tragic consequences, the reactionary medical paradigm has not provided the preventive care or chronic illness management that our culture needs. Healthcare spending currently consumes 17 percent of our GDP and without a radical shift in thinking, this number may grow even higher.”
Change begins with conversation. To that end, the three have launched a movement called Tomorrow’s Doctor, in which they call for ideas on how to reimagine medicine of the future, starting with med ed. We must re-align priorities, they say, and take advantage of gains already made in technology and public health.
“We need to stop the “imaginectomies” and help, collectively, step by step, to make creativity, imagination and compassion the 21st century standards of medical education.”
This year, the TEDMED Editorial Team received more than 1,600 nominations for speakers. What could the 50 or so who are speaking at TEDMED 2013 possibly have in common?
The Team answers with three words: Inspiration, insight and impact. The inspiration to take a novel, even provocative approach; insight that’s valuable across disciplines; and work that promises to have a broad impact in health and medicine.
Today, seven more speakers were added to the roster for TEDMED 2013 at the Kennedy Center in Washington, D.C.:
Visit www.tedmed.com for more information and to apply for the event.
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.
Anyone who has worked – or been a patient — in a large teaching hospital knows what a traditional third-year medical student clerkship can look like: Specialist sweeps in, accompanied by a gaggle of students; specialist has a few words with the patient; students nod and occasionally take notes; specialist leaves, accompanied by retinue. Students move on to next rotation and never see patient again.
A relatively new model, the longitudinal integrated clerkship (LIC), wants to change all that. It answers decades of increasing calls from the medical education community to revise the prevailing century-old current “block” model of clinical learning, which can present fragmented views of disease and allow only snips of caregiving in the current outpatient care-based healthcare system.
Within an LIC, students work with mentors in core specialties on their principal clinical year and follow cases from beginning to end — be that an hour, a day or a year — in a process that is patient- rather than program-oriented. It is designed to give students a broader and more empathetic view of healing, and lasting lessons in doctor-patient relationships and communication. Some 15 schools in the U.S., Australia, Canada and South Africa have large and established programs, but more than a 100 schools have joined an international consortium to discuss and explore the option.
“Students are there as things unfold for the patient. They are part of the team. They see the evolution of the disease. They follow patients long enough to see them recover, to see the denouement and the outcome of their decisions,” says David Hirsh, MD, director and co-founder of the Harvard Medical School-Cambridge Integrated Clerkship at Cambridge Health Alliance, assistant professor of Medicine at Harvard Medical School, and lead author of the most comprehensive study of program results to date.
In that study, published last March in Academic Medicine, LIC students performed at least as well as their peers on measures of content knowledge, and reported feeling much more prepared in patient-centered aspects of care, including handling ethical dilemmas, involving patients in decision-making, and relating well to a diverse population.
Patient Care With Context
Students also reported a higher level of satisfaction with their med school education. Not surprisingly, patients seem to like the arrangement, too.
“ ‘I have my own personal medical student,’ ” they’ll say. And to me, they’ll say, ‘Where’s your student today? Because you’re a much better doctor when your student is around.’ ” Hirsh says.
Students in an LIC are also ideally better able to understand a patient’s values and social context and to spot communications roadblocks. As one student wrote in a reflective narrative on the LIC experience:
“Without me I can confidently say this illiterate, non-English-speaking patient, even with his very supportive and involved family, would have fallen through the cracks. The number of appointments and communications and miscommunications would have been so numerous, and it would have taken so long, that he probably would have just stopped showing up.”
“It’s not the student just accomplishing some task. Nor are they seeing the patient as a case study. It’s not ‘the liver in room six’ – it’s ‘Mrs. So-and-So whom I have known many months, whom I know well,’ ” Hirsh says.
Though patient outcomes haven’t yet been studied, Hirsh believes an LIC, in which students navigate our complex healthcare system in tandem with their patients, can also give them a better vantage point from which to treat chronic disease.
“For example, say a diabetic patient has low blood sugar. You’re there for that, and you’re there for the treatment. Commitments are fostered. You might try harder to help with education and secondary prevention. There comes a stronger desire to learn, ‘Who is that person? Who is that patient?’ “ he says. As another student wrote,
“Each time we see Ms. O, attempting to understand her evolving health adds another piece to our medical repertoire. Each time we grow to understand a bit more about the toll that hospitalizations and chronically deteriorating health can have on a patient and her family.”
A Lasting Humanism
Perhaps most significantly, graduating from an LIC can give a future doctor a better grounding in the humanism necessary to her or his profession, Hirsh says.
Research suggests that as students progress through medical school, med students become more cynical, with a resulting decline in patient centeredness.
“Their moral development is shattered, their empathy is declining – how can that be? That’s the opposite of medicine’s goals. We want to sustain and nourish our students to be their best selves. Who they will be when they’re doing their life’s work?” Hirsh says.
In contrast, Hirsh’s research shows that students show an increase in patient-centeredness as they go through their training as compared to those doing a traditional clerkship.
From a student:
“I’ve heard traditional third- year students describe their horror at the sight and smell of the necrotic feet seen in vascular clinic. It had never occurred to me to be disgusted by F. When we noticed the first signs of an ulcer on her toe and when erythema gave way to necrosis, then osteomyelitis, I remember feeling concern, but not disgust. And when we finally had to serially amputate her forefoot, I remember thinking only that I wanted to do right by her—to find vital tissue. “
Hirsh says, “Ethics has to do with the students having meaningful roles. The student needs to matter to the patient, and the patient needs to matter to the student.
“Our students want to know the science because they want to help their patient.”
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.
TEDMED will host two live, online events today to discuss Great Challenges of health and medicine: Addressing Healthcare Costs and Payment Systems from 1-2pm EST; and Coming to Grips with End-of-Life Care from 3:30-4:30 EST.
Join us for an informal, moderated discussions on these Great Challenges. Share your thoughts and quiz the Team – we’ll answer selected questions on-air. You can also submit questions and share your perspective with the community via Twitter, tagging your tweets with #GreatChallenges. Follow TEDMED on Google Plus to get started, or join on TEDMED.com.
We’ve also announced three new speakers for TEDMED 2013: Victor Wang of GeriJoy, Inc., which creates virtual companions for seniors; Zubin Damania (aka ZDoggmd), Director of Healthcare Development for Downtown Project Las Vegas and a standup comedian who mercilessly pokes fun at the foibles of our medical system; and Sara Horowitz, founder and Executive Director of Freelancers Union.
Click here to see our speaker roster to date, and here to apply to TEDMED.
Kavita Patel, MD, is Managing Director for Clinical Transformation and Delivery, Engelberg Center for Health Care Reform and Economic Studies Fellow at the Brookings Institution. She’s also a practicing primary care internist at Johns Hopkins Medicine and served in the Obama administration as director of policy for the Office of Intergovernmental Affairs and Public Engagement in the White House.
What is the one thing all of the stakeholders have in common in the health care reform scenario?
No matter who you get in the room, everybody wants to know: How can we do the most to control spending, but also to miminize unintended consequences? That is universal. As a doctor, I was thinking, ‘How can I minimize unintended consequences to my patients?” Another common issue – participants were all willing to put their own personal agenda aside, because they realized they were part of a much bigger conversation. People felt there was a higher purpose to this.
Do people bring their own health experiences to the table, even unconsciously?
We have this common joke in D.C.: An ounce of information is not worth as much as a pound of anecdote. So the joke is always that anecdotes and stories carry more weight. Yet at the end of the day, we try to ask: If you had a personal experience that really motivated you, what can then can we learn from that is applicable to a lot of people?
You were part of the senior staff of the Health, Education, Labor and Pensions (HELP) Committee under Senator Ted Kennedy’s leadership. Looking at the healthcare system in Massachusetts now, what can we learn from it as a nation?
Massachusetts embraced the role of information dissemination broadly and put money aside for it. They knew that simply talking among themselves was not going to give state residents much information: How they could get insurance, what insurance means, why they should have it. That’s something that’s lacking on our national level.
I’m really concerned about adults who just don’t realize they have options. I think that wives and mothers who already shop for insurance will respond, but what about elderly men who have to sign up for Medicaid? It’s really hard to get outreach to those people. I’m a physician and employee, and the last time I chose plans, I found it’s not easy. We did all this work in health reform, and then there’s you, sitting in your house. How do we connect the two to go the final mile and make a difference?
I was saying to colleagues, ‘We should get Dr. Oz and Oprah to talk about health reform.’ That was a joke, but what if we could have some kind of informal spokesperson to help in the efforts?
Some employers are saving on healthcare costs by improving employee health with incentive programs. Everybody wins. However, do we run the risk of putting companies in the position of being a healthcare “Big Brother?”
I do think that having these things in place will help employers think of things more broadly. It will create more incentive for employees if the plans are structured around more than, say, ‘Get your flu shot.’ That’s great, but it’s certainly not going to change the dynamic. You also hope for some spillover effect. If all the Fortune 50 companies have health and wellness programs, that might open the way for health plans to offer some of these wellness incentives themselves to improve their ability to contain cost and improve care.
Will we see companies who strive to hire only the healthiest of employees at some point? Is it happening already?
That was a concern that a lot of labor and patients rights group expressed, but in order to mitigate that we have to be transparent about how people might change hiring practices. And so far we haven’t seen that happen. Even outside of tax incentives, employers are stepping up and doing things because it’s the right thing to do. We had very active conversations about making sure people don’t get lost in this process. If you are in a work environment where that’s happening, you need to be able to bring that forward without repercussion.
Why doesn’t the government have more healthy behavior incentives for its own employees?
One of the biggest sticking issues has been where and how we would roll it out. How do you do something that affects one of the biggest employers in the world? We didn’t have the access to the very things we would talk about. But we didn’t have a gym that we could use; the White House didn’t have a gym. The White House, with leadership from the First Lady’s efforts, helped to secure a farmers’ market for the community around the White House to promote healthier eating. But even that step took a lot of time and effort.
As a primary care internist, what were some of your own hopes as you observed the dialogue going into the construction of the ACA?
The hope I had was to get rid of the idea that the cost of treatment or insurance would prevent you from trying to be as healthy as possible. I saw it all the time; I saw that patients didn’t take their medicines or see a doctor because they couldn’t afford the co-pays. To me, that was where the reform hit reality. I thought, ‘There’s got to be a better way to do this. Can we make the system cost less and still be patient centric?’
Do you talk to your patients about cost?
I do. If someone comes in and wants a certain test or prescription that I know that is not necessarily the best treatment for what they’re asking, and it’s the more expensive one, I ask them, ‘What made you think about wanting this?’ 99.9 percent of the time they say, ‘I had a friend…’ or ‘I saw it on the television.’ We usually end up choosing another course, something better. But that takes time. It’s far easier for a doctor like me to write the prescription or order the tests. That’s the tension with controlling costs.
How did a family doctor end up in policy?
I had been doing research in mental illness and veterans, and my work caught the attention of Ted Kennedy, and one thing led to another. D.C. seemed a very foreign place — I think it does to most of the country — but I’m tapping into my physician roots more and more each day, which gives me great insight that I’ve spent decades trying to gain. So I’m coming full circle.