A Piece Of My Mind | June 27, 2012
To Isaiah
Thank you for letting me share this glorious day with you and your loved ones. Feel good. Feel proud. You’ve earned it.
In preparation for today, I asked your dean of students what she thinks is on your mind. So, she asked you. The word you used—many of you—was this one: Worried. You're worried about the constant change around you, uncertain about the future of medicine and dentistry. Worried about whether you can make a decent living. You’ve boarded a boat, and you don't know where it's going.
I can reassure you. You’ve made a good choice—a spectacularly good choice. The career you’ve chosen is going to give you many moments of poetry. My favorite is the moment when the door closes—the click of the catch that leaves you and the patient together in the privacy—the sanctity—of the helping relationship. Doors will open too. You’ll find ways to contribute to progress that you cannot possibly anticipate now, any more than I could have dreamed of standing here when I was sitting where you are 40 years ago.
But look, I won't lie; I’m worried too. I went to Washington to lead the Centers for Medicare & Medicaid Services, full of hope for our nation's long-overdue journey toward making health care a human right here, at last. In lots of ways, I wasn't disappointed. I often saw good government and the grandeur of democracy—both alive, even if not at the moment entirely well.
But, like you, I also found much that I could not control—a context torn apart by antagonisms—too many people in leadership, from whom we ought to be able to expect more, willing to bend the truth and rewrite facts for their own convenience. I heard irresponsible, cruel, baseless rhetoric about death panels silence mature, compassionate, scientific inquiry into the care we all need and want in the last stages of our lives. I heard meaningless, cynical accusations about rationing repeated over and over again by the same people who then unsheathed their knives to cut Medicaid. I watched fear grow on both sides of the political aisle—fear of authentic questions, fear of reasoned debate, and fear of tomorrow morning's headlines—fear that stifled the respectful, civil, shared inquiry upon which the health of democracy depends.
And so, HSDM and HMS Class of 2012, I’m worried too. I too wonder where this boat is going.
There is a way to get our bearings. When you're in a fog, get a compass. I have one—and you do too. We got our compass the day we decided to be healers. Our compass is a question, and it will point us true north: How will it help the patient?
This patient has a name. It is “Isaiah.” He once lived. He was my patient. I dedicate this lecture to him.
You will soon learn a lovely lesson about doctoring; I guarantee it. You will learn that in a professional life that will fly by fast and hard, a hectic life in which thousands of people will honor you by bringing to you their pain and confusion, a few of them will stand out. For reasons you will not control and may never understand, a few will hug your heart, and they will become for you touch points—signposts—like that big boulder on that favorite hike that, when you spot it, tells you exactly where you are. If you allow it—and you should allow it—these patients will enter your soul, and you will, in a way entirely right and proper, love them. These people will be your teachers.
Isaiah taught me. He was 15 when I met him. It was 1984, and I was the officer of the day—the duty doctor in my pediatric practice at the old Harvard Community Health Plan. My nurse practitioner partner pointed to an exam room. “You better get in there,” she said. “That kid is in pain.”
He was in pain. Isaiah was a tough-looking, inner-city kid. I would have crossed the street to avoid meeting him alone on a Roxbury corner at night. I’m not proud of that fact, but I admit it. But here on my examining table he was writhing, sweating in pain. He was yelling obscenities at the air, and, when I tried to examine him, he yelled them at me. “Don't you f-----g touch me! Do something!”
I didn't figure out what was going on that afternoon. Nothing made sense. I diagnosed, illogically, a back sprain, and I sent him home on analgesics. Then, that evening, the report came: an urgent call from the lab. Isaiah didn't have a back sprain; he had acute lymphoblastic leukemia. And we didn't have his phone number.
The police helped track him down that night, to a lonely three-decker, third floor, a solitary house in a weedy lot on Sheldon Street in the heart of Roxbury. Isaiah lived there with his mother, brothers, and his mother's foster children.
What followed was the best of care . . . the glory of biomedical science came to Isaiah's service. Chemotherapy started, and he went predictably into remission. But we knew that ALL in a black teenager behaves badly. Unlike in younger kids, cure was unlikely. He would go into remission for a while, but the cancer would come back and it would kill him. Three years later, he relapsed.
I drove to his apartment one evening in 1987 and sat with Isaiah and his graceful, dignified mother around a table with a plastic red-checkered tablecloth and explained the only option we knew for possible cure—a bone marrow transplant, not when he felt sick, but now, at the first sign of relapse, when he was still feeling fine. He was feeling fine, and I was there to propose treatment that might kill him.
They didn't hesitate. Isaiah wanted to live. He got his transplant, from his brother. His course was stormy, admission after admission followed, then chronic complications of his transplant—diabetes and asthma. His Children's Hospital medical record that year took up five four-inch-thick volumes. But he got through. Isaiah was cured.
We became very close, Isaiah and I, through this time and for years after—long conversations about his life, his hopes, his worries. He always asked me about my kids. And his mother, close, as well. An angel—a tough angel raised by her sharecropper grandfather on a North Carolina farm, who read Isaiah the riot act when she had to and who fiercely protected him—and who, during the darkest times of his course, continued to tend her ten foster children, as well as her own.
I came to know Isaiah well, but it wouldn't be quite right to call us friends—our worlds were too far apart—different galaxies. But my respect and affection for Isaiah grew and grew. His courage. His insight. His generosity.
But there is more to tell.
Isaiah smoked his first dope at age 5. He got his first gun before 10, and, by 12, he had committed his first armed robbery; he was on crack at 14. Even on chemotherapy, he was in and out of police custody. For months after his transplant he tricked me into extra prescriptions for narcotics, which he hoarded and probably sold. Two of his five brothers were in jail—one for murder; and, two years into Isaiah's treatment, a third brother was shot dead—a gun blast through the front door—in a drug dispute.
Isaiah didn't finish school, and he had no idea of what to do for legitimate work. He got and lost job after job for not showing up or being careless. His world was the street corner and his horizon was only one day away. He saw no way out. He hated it, but he saw no way out. He once told me that he thought his leukemia was a blessing, because at least while he was in the hospital, he couldn't be on the streets.
And Isaiah died. One night, 18 years after his leukemia was cured, at 37 years of age, they found him on a street corner, breathing but brain-dead from a prolonged convulsion from uncontrolled diabetes and even more uncontrolled despair.
Isaiah tried to phone me just before that fatal convulsion. He had my home number, and I still have the slip of paper on which my daughter wrote, “Isaiah called. Please call him back.” I never did. He would have said, “Hi, Dr Berwick. It's Isaiah. I’m really sick. I can't take it. I don't know what to do. Please help me.” Because that is what he often said.
Isaiah spent the last two years of his life in a vegetative state in a nursing home where I sometimes visited him. At his funeral, his family asked me to speak, and I could think of nothing to talk about except his courage.
Isaiah, my patient. Cured of leukemia. Killed by hopelessness.
I bring Isaiah today as my witness to two duties; you have both. It's where your compass points.
First, you will cure his leukemia. You will bring the benefits of biomedical science to him, no less than to anyone else. Isaiah's poverty, his race, his troubled life-line—not one of these facts or any other fact should stand in the way of his right to care—his human right to care. Let the Supreme Court have its day. Let the erratics and vicissitudes of politics play out their careless games. No matter. Health care is a human right; it must be made so in our nation; and it is your duty to make it so. Therefore, for your patients, you will go to the mat, and you will not lose your way. You are a physician, and you have a compass, and it points true north to what the patient needs. You will put the patient first.
But that is not enough. Isaiah's life and death testify to a further duty, one more subtle—but no less important. Maybe this second is not a duty that you meant to embrace; you may not welcome it. It is to cure, not only the killer leukemia; it is to cure the killer injustice.
Antoine de Saint-Exupéry wrote, “To become a man is to be responsible; to be ashamed of miseries that you did not cause.” I say this: To profess to be a healer, that is, to take the oath you take today, is to be responsible; to be ashamed of miseries that you did not cause. That is a heavy burden, and you did not ask for it. But look at the facts.
In our nation—in our great and wealthy nation—the wages of poverty are enormous. The proportion of our people living below the official poverty line has grown from its low point of 11% in 1973 to more than 15% today; among children, it is 22%—16.4 million; among black Americans, it is 27%. In 2010, more than 46 million Americans were living in poverty; 20 million, in extreme poverty—incomes below $11 000 per year for a family of four. One million American children are homeless. More people are poor in the United States today than at any other time in our nation's history; 1.5 million American households, with 2.8 million children, live here on less than $2 per person per day. And 50 million more Americans live between the poverty line and just 50% above it—the near-poor, for whom, in the words of the Urban Institute, “The loss of a job, a cut in work hours, a serious health problem, or a rise in housing costs can quickly push them into greater debt, bankruptcy's brink, or even homelessness.” For the undocumented immigrants within our borders, it's even worse.
For all of these people, our nation's commitment to the social safety net—the portion of our policy and national investment that reaches help to the disadvantaged—is life's blood. And today that net is fraying—badly. In 2010, 20 states eliminated optional Medicaid benefits or decreased coverage. State Social Services Block Grants and Food Stamps are under the gun. Enrollment in the TANF program—Temporary Assistance to Needy Families—has lagged far behind the need. Let me be clear: the will to eradicate poverty in the United States is wavering—it is in serious jeopardy.
In the great entrance hall of the building where I worked at CMS—the Hubert Humphrey Building, headquarters of the Department of Health and Human Services—are chiseled in massive letters the words of the late Senator Humphrey at the dedication of the building in his name. He said, “The moral test of government is how it treats people in the dawn of life, the children, in the twilight of life, the aged, and in the shadows of life, the sick, the needy, and the handicapped.”
This is also, I believe, the moral test of professions. Those among us in the shadows—they do not speak, not loudly. They do not often vote. They do not contribute to political campaigns or PACs. They employ no lobbyists. They write no op-eds. We pass by their coin cups outstretched, as if invisible, on the corner as we head for Starbucks; and Congress may pass them by too, because they don't vote, and, hey, campaigns cost money. And if those in power do not choose of their own free will to speak for them, the silence descends.
Isaiah was born into the shadows of life. Leukemia could not overtake him, but the shadows could, and they did.
I am not blind to Isaiah's responsibilities; nor was he. He was embarrassed by his failures; he fought against his addictions, his disorganization, and his temptations. He tried. I know that he tried. To say that the cards were stacked against him is too glib; others might have been able to play his hand better. I know that; and he knew that.
But to ignore Isaiah's condition not of his choosing, the harvest of racism, the frailty of the safety net, the vulnerability of the poor, is simply wrong. His survival depended not just on proper chemotherapy, but, equally, on a compassionate society.
I am not sure when the moral test was put on hold; when it became negotiable; when our nation in its political discourse decided that it was uncool to make its ethics explicit and its moral commitments clear—to the people in the dawn, the twilight, and the shadows. But those commitments have never in my lifetime been both so vulnerable and so important.
You are not confused; the world is. You need not forget your purpose, even if the world does. Leaders are not leaders who permit pragmatics to quench purpose. Your purpose is to heal, and what needs to be healed is more than Isaiah's bone marrow; it is our moral marrow—that of a nation founded on our common humanity. My brother, a retired schoolteacher, tells me that he always gets goose bumps when he reads this phrase: “We, the people . . . ” We—you, and me, and Isaiah—inclusive.
It is time to recover and celebrate a moral vocabulary in our nation—one that speaks without apology or hesitation of the right to health care—the human right—and, without apology or hesitation, of the absolute unacceptability of the vestiges of racism, the violence of poverty, and blindness to the needs of the least powerful among us.
Now you don your white coats, and you enter a career of privilege. Society gives you rights and license it gives to no one else, in return for which you promise to put the interests of those for whom you care ahead of your own. That promise and that obligation give you voice in public discourse simply because of the oath you have sworn. Use that voice. If you do not speak, who will?
If Isaiah needs a bone marrow transplant, then, by the oath you swear, you will get it for him. But Isaiah needs more. He needs the compassion of a nation, the generosity of a commonwealth. He needs justice. He needs a nation to recall that, no matter what the polls say, and no matter what happens to be temporarily convenient at a time of political combat and economic stress, that the moral test transcends convenience. Isaiah, in his legions, needs those in power—you—to say to others in power that a nation that fails to attend to the needs of those less fortunate among us risks its soul. That is your duty too.
This is my message from Isaiah's life and from his death. Be worried, but do not for one moment be confused. You are healers, every one, healers ashamed of miseries you did not cause. And your voice—every one—can be loud, and forceful, and confident, and your voice will be trusted. In his honor—in Isaiah's honor—please, use it.
AUTHOR INFORMATION
Conflict of Interest Disclosures: The author has completed and submitted the ICMJE Form for Disclosure of Potential Conflicts of Interest and none were reported.
Disclaimer: Dr Berwick is a member of the JAMA Editorial Board and was not involved in the editorial review of or the decision to publish this article.
Additional Contributions: Thanks to Clifford Marks for help with research on statistics. He was not compensated for this work.
Editor's Note: This speech was given at the Harvard Medical School Class Day, Boston, Massachusetts, May 24, 2012.
A Piece of My Mind Section Editor: Roxanne K. Young, Associate Senior Editor.
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