PE R S PE C T IV E
ing the program’s structure to achieve a purpose (shielding the federal government from health care costs) that was not part of the deal 50 years ago. The proposal would predicate ongoing federal funding on the states’ agreement to a new budgeting arrangement that forced them to accept and absorb enormous financial risk by altering their obligations to pregnant women, children, and parents, while reducing long-term care commitments to elderly and disabled beneficiaries. By radically restructuring federal Medicaid financing, the Patient CARE Act becomes a legal “gun to the head”: a state that wished to receive continued federal Medicaid funding would be comAn audio interview with Prof. Rosenbaum pelled to conform is available at NEJM.org to a new compact without the requisite advance notice of how Medicaid would ultimately be profoundly altered. Perhaps Congress could give states the option of a block grant as an alternative to open-ended
Restructuring Medicaid as Block Grants
funding. Some states might take such an option — but they’d be foolish to do so, since children and families are the least costly beneficiaries, and Medicaid funding for long-term care is politically popular. States would forgo billions of dollars in federal funding while inflicting terrible pain and generating virtually no savings. They could attempt to replace lost funding with state tax funds, but state tax hikes are even less popular than federal taxes. Congress could repeal Medicaid altogether and replace it with a new program. Such a strategy might avert the constitutional problems associated with fundamentally altering Medicaid. But in our view that would be a terrible idea. Furthermore, achieving any sensible alternative program would be impossible in such a politically riven atmosphere. Before 2012, Congress’s power to redesign Medicaid seemed a legal given. After NFIB, that’s no longer the case. Legislation that would radically transform the
federal–state Medicaid bargain without states’ consent may no longer pass the Tenth Amendment test. Disclosure forms provided by the authors are available with the full text of this article at NEJM.org. From the Milken Institute School of Public Health, George Washington University (S.R.), and the Georgetown University Law Center (T.W.) — both in Washington, DC. This article was published on April 22, 2015, at NEJM.org. 1. The Patient Choice, Affordability, Responsibility, and Empowerment Act. Washington, DC: House Energy and Commerce Committee (http://energycommerce.house.gov/sites/ republicans.energycommerce.house.gov/ files/114/20150205-PCARE-Act-Plan.pdf). 2. Park E. Proposed Medicaid block grant would add millions to uninsured and underinsured. Washington, DC: Center on Budget and Policy Priorities. March 17, 2015 (http:// www.offthechartsblog.org/proposed -medicaid-block-grant-would-add-millions -to-uninsured-and-underinsured). 3. Lambrew JM. Making Medicaid a block grant program: an analysis of the implications of past proposals. Milbank Q 2005;83: 41-63. 4. Holahan J, McMorrow S. Medicare and Medicaid spending trends and the deficit debate. N Engl J Med 2012;367:393-5. 5. 567 U.S. ___, 132 S. Ct. 2566 (2012). DOI: 10.1056/NEJMp1503455 Copyright © 2015 Massachusetts Medical Society.
Lessons in Medicine, Mortality, and Reflexive Verbs Robin Schoenthaler, M.D.
E
verywhere I turned during my clerkships and internship at a county hospital in southern California, I heard Spanish. My classmates and I came from places like Long Island and Kentucky and often had terrible pronunciation, but we spent entire days speaking only Spanish: Spanish on rounds, Spanish to nurses, Spanish with patients. We learned much of our Spanish from patients who were hospitalized for long periods, espe-
cially those who had a high tolerance for bumbling med students with pitiful accents. My own best teacher was a young woman named Julia Gonzalez, who was admitted in October of my internship year with acute myeloid leukemia. Younger than I was, she insisted that I call her Julia, and during several months of chemotherapy, she taught me considerably more than Spanish nouns and verbs. The oncology team showed
me how to manage her treatment and its toxic effects. When side effects bloomed, the team taught me what orders to write and how to use my new medical language, while I told Julia in Spanish what the medications were called and what they did. I’d often add that the doctors promised she would rally (“se mejoraría”), even when neither of us believed it. And she did get better. In December, after four rounds of chemo and what I’d learned we
n engl j med 372;19 nejm.org may 7, 2015
The New England Journal of Medicine Downloaded from nejm.org at Fudan University on May 7, 2015. For personal use only. No other uses without permission. Copyright © 2015 Massachusetts Medical Society. All rights reserved.
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PERS PE C T IV E
called “a stormy hospitalization,” Julia left the hospital, bald and beaming, without a single leukemic cell in her marrow. I felt fantastic about Julia — and really good about my Spanish. Back in med school, I’d gradually gotten better at using various past tenses while taking histories, and I’d begun to fall in love with, of all things, reflexive verbs. I loved the concept of a verb that made the self the object of its action. In my primitive understanding of this new language, I routinely translated every word into English in my head, and it somehow pleased me to hear patients include themselves in their activities. A young man might say, “Yo me lavé la llaga,” and I would hear, “I myself washed my wound,” or when an elderly woman said, “Me caí de la silla,” I would translate, “I myself fell out of the chair.” The Spanish felt so warm, somehow, so whole-person. Reflexive verbs also gave me what I perceived as a kinder, gentler way of speaking to patients in those early, awkward days of training. It felt so much more graceful to say to a stranger, “You can redress yourself” rather than “Put your clothes back on.” And I much preferred asking a rumpled patient, “How did you yourself sleep?” rather than “How was your night?” I doubt any patient ever noted the difference, but reflexive verbs gave me comfort in an uncomfortable time. But the cancer ward had brought me up against the limits of my high school Spanish. I’d often found myself at a loss for words, even in English — what was this myelosuppression? Apoptosis? Pyridines? And patients’ questions became so much more complex or loaded: once when a
1788
Lessons in Medicine, Mortality, and Reflexive Verbs
tiny Argentinian grandmother asked about her cancer, “Va a matarme?” (Is it going to kill me?), all my Spanish vanished. So in my last summer of med school, I’d enrolled in a language-immersion school in Queretaro, Mexico. I had taken formal Spanish classes in the mornings and learned slang from my host family at night. I’d learned more Spanish in that month than in an entire semester at school and was ridiculously proud of myself for saying, “Me voy a vomitar” (I am myself going to vomit) seconds before I threw up, mid-migraine, on my host mother’s feet. In May of my internship year, Julia was readmitted, and I read her blood smear. I blinked in astonishment at the wide blue field of distorted cells; the slide itself looked incompatible with life. “This is a classic example of a blast crisis, a really bad leukemic relapse,” the pathologist commented and then added, “It’s a death sentence: maybe a week or two.” I went to Julia’s room and found her feverish and sobbing. She kept mumbling, “Me voy a morir” (I am myself going to die) until her Ativan kicked in, at which point I paced the halls, helpless and horrified. Finally, I called my old mentor, Bob Figlin, an oncologist I’d shadowed in med school. I told him Julia’s story and asked him how the hell this could be. How could our treatment have failed so completely and so fast? “It’s the biology of these tumors,” he said. “It gets around us; we don’t know why.” I feel bad for him now; I know how hard it is to watch a young doctor get smacked by the realities of the failures of medicine,
but at the time I felt only fury. I couldn’t bear to let him tell me about tumor resistance or chemosensitivity. I kept thinking, “It is Julia herself who is dying, not a mass of cells.” I could almost hear him shrug his shoulders; he could sense me wringing my hands — both of us feeling helpless in the face of this horrid disease. I stood in the hallway trying not to weep. Then something Bob said broke through: “Now, you concentrate solely on her comfort.” I automatically translated it into Spanish, with its reflexive verb: “Ahora nos concentramos en su comodidad” (Now we concentrate ourselves on her comfort). We, ourselves, all of us. So every day, we concentrated entirely on her comfort. On morning rounds, we juggled her pain meds with her sedatives and antiemetics, and Julia’s eyes began to clear. I started spending my evenings with her. I was her only visitor; her family lived deep in Mexico, almost to Guatemala, in tiny houses with no phones, on dirt roads, “muy pobre,” she explained. I can’t know what it meant to her, but to me it felt soothing to sit and speak Spanish in this quiet space with this dying patient. I consciously endeavored to bring me myself into the room as we sat murmuring outside the normal flow of procedures and results and the hot, crowded hallways. Sometimes I tried to describe what had happened to her, how the marrow in her bones had filled with cells that couldn’t function, though we didn’t know why. Mostly she spoke of family and her life, always in the past tense, sometimes weeping. I held her hand and rubbed her wrists
n engl j med 372;19 nejm.org may 7, 2015
The New England Journal of Medicine Downloaded from nejm.org at Fudan University on May 7, 2015. For personal use only. No other uses without permission. Copyright © 2015 Massachusetts Medical Society. All rights reserved.
PE R S PE C T IV E
and used my reflexive verbs. We were both speaking a foreign language. I promised her and myself that I would be with her until the end. But one broiling June day, I arrived at 6:15 a.m., hot and distracted, and learned Julia had died at 5:30, alone, before the California red-wine dawn. In her bed, I found the ex-Julia; Julia herself had evaporated. I gazed at her, thinking of her suffering, her loneliness, the orders I’d learned to write, thinking about all the distorted white cells that had poured in and out of her marrow, thinking about the phone call I would have to make to her mother, sleeping somewhere deep in southern Mexico. I tried to figure out what to say. I’d never told a family about a loss. How do you tell someone
Lessons in Medicine, Mortality, and Reflexive Verbs
a life is gone, and how do you do it in Spanish? I pictured my Spanish teacher in Queretaro, standing in front of us on the hot July day when she’d taught us to conjugate the reflexive verb “to die” — morirse. “I myself died, you yourself died,” we’d intoned in desultory unison. But suddenly the word’s import had clicked, and I’d sat straight up, red hot and alert, whispering fiercely, “He himself died, she herself died . . . .” I will need to know this verb someday, I remember thinking, this needs to stick. It took most of the day to reach Julia’s mother. When she finally called from the shared village phone, her “Hola?” was questioning and guarded. I explained that I was one of Julia’s doctors, and then I stood stock still, unable to speak, choking on
images: Julia’s blasts, our chats, her mouth sores, my orders, her wrists on the bed in the dawn. Finally, I pulled myself back to the hospital hallway and just said it. I said it as I’d been taught in Queretaro, with grammatical perfection but no true preparation: “Se murio” — “She herself has died.” And then I listened to the wailing of a woman in a village deep in Mexico who sounded as if her own marrow was being ripped from her bones, and it needed no translation at all. The patient’s name and identifying characteristics have been changed to protect her privacy. Disclosure forms provided by the author are available with the full text of this article at NEJM.org. From the Department of Radiation Oncology, Massachusetts General Hospital, Boston. DOI: 10.1056/NEJMp1413815 Copyright © 2015 Massachusetts Medical Society.
n engl j med 372;19 nejm.org may 7, 2015
The New England Journal of Medicine Downloaded from nejm.org at Fudan University on May 7, 2015. For personal use only. No other uses without permission. Copyright © 2015 Massachusetts Medical Society. All rights reserved.
1789
ing the program’s structure to achieve a purpose (shielding the federal government from health care costs) that was not part of the deal 50 years ago. The proposal would predicate ongoing federal funding on the states’ agreement to a new budgeting arrangement that forced them to accept and absorb enormous financial risk by altering their obligations to pregnant women, children, and parents, while reducing long-term care commitments to elderly and disabled beneficiaries. By radically restructuring federal Medicaid financing, the Patient CARE Act becomes a legal “gun to the head”: a state that wished to receive continued federal Medicaid funding would be comAn audio interview with Prof. Rosenbaum pelled to conform is available at NEJM.org to a new compact without the requisite advance notice of how Medicaid would ultimately be profoundly altered. Perhaps Congress could give states the option of a block grant as an alternative to open-ended
Restructuring Medicaid as Block Grants
funding. Some states might take such an option — but they’d be foolish to do so, since children and families are the least costly beneficiaries, and Medicaid funding for long-term care is politically popular. States would forgo billions of dollars in federal funding while inflicting terrible pain and generating virtually no savings. They could attempt to replace lost funding with state tax funds, but state tax hikes are even less popular than federal taxes. Congress could repeal Medicaid altogether and replace it with a new program. Such a strategy might avert the constitutional problems associated with fundamentally altering Medicaid. But in our view that would be a terrible idea. Furthermore, achieving any sensible alternative program would be impossible in such a politically riven atmosphere. Before 2012, Congress’s power to redesign Medicaid seemed a legal given. After NFIB, that’s no longer the case. Legislation that would radically transform the
federal–state Medicaid bargain without states’ consent may no longer pass the Tenth Amendment test. Disclosure forms provided by the authors are available with the full text of this article at NEJM.org. From the Milken Institute School of Public Health, George Washington University (S.R.), and the Georgetown University Law Center (T.W.) — both in Washington, DC. This article was published on April 22, 2015, at NEJM.org. 1. The Patient Choice, Affordability, Responsibility, and Empowerment Act. Washington, DC: House Energy and Commerce Committee (http://energycommerce.house.gov/sites/ republicans.energycommerce.house.gov/ files/114/20150205-PCARE-Act-Plan.pdf). 2. Park E. Proposed Medicaid block grant would add millions to uninsured and underinsured. Washington, DC: Center on Budget and Policy Priorities. March 17, 2015 (http:// www.offthechartsblog.org/proposed -medicaid-block-grant-would-add-millions -to-uninsured-and-underinsured). 3. Lambrew JM. Making Medicaid a block grant program: an analysis of the implications of past proposals. Milbank Q 2005;83: 41-63. 4. Holahan J, McMorrow S. Medicare and Medicaid spending trends and the deficit debate. N Engl J Med 2012;367:393-5. 5. 567 U.S. ___, 132 S. Ct. 2566 (2012). DOI: 10.1056/NEJMp1503455 Copyright © 2015 Massachusetts Medical Society.
Lessons in Medicine, Mortality, and Reflexive Verbs Robin Schoenthaler, M.D.
E
verywhere I turned during my clerkships and internship at a county hospital in southern California, I heard Spanish. My classmates and I came from places like Long Island and Kentucky and often had terrible pronunciation, but we spent entire days speaking only Spanish: Spanish on rounds, Spanish to nurses, Spanish with patients. We learned much of our Spanish from patients who were hospitalized for long periods, espe-
cially those who had a high tolerance for bumbling med students with pitiful accents. My own best teacher was a young woman named Julia Gonzalez, who was admitted in October of my internship year with acute myeloid leukemia. Younger than I was, she insisted that I call her Julia, and during several months of chemotherapy, she taught me considerably more than Spanish nouns and verbs. The oncology team showed
me how to manage her treatment and its toxic effects. When side effects bloomed, the team taught me what orders to write and how to use my new medical language, while I told Julia in Spanish what the medications were called and what they did. I’d often add that the doctors promised she would rally (“se mejoraría”), even when neither of us believed it. And she did get better. In December, after four rounds of chemo and what I’d learned we
n engl j med 372;19 nejm.org may 7, 2015
The New England Journal of Medicine Downloaded from nejm.org at Fudan University on May 7, 2015. For personal use only. No other uses without permission. Copyright © 2015 Massachusetts Medical Society. All rights reserved.
1787
PERS PE C T IV E
called “a stormy hospitalization,” Julia left the hospital, bald and beaming, without a single leukemic cell in her marrow. I felt fantastic about Julia — and really good about my Spanish. Back in med school, I’d gradually gotten better at using various past tenses while taking histories, and I’d begun to fall in love with, of all things, reflexive verbs. I loved the concept of a verb that made the self the object of its action. In my primitive understanding of this new language, I routinely translated every word into English in my head, and it somehow pleased me to hear patients include themselves in their activities. A young man might say, “Yo me lavé la llaga,” and I would hear, “I myself washed my wound,” or when an elderly woman said, “Me caí de la silla,” I would translate, “I myself fell out of the chair.” The Spanish felt so warm, somehow, so whole-person. Reflexive verbs also gave me what I perceived as a kinder, gentler way of speaking to patients in those early, awkward days of training. It felt so much more graceful to say to a stranger, “You can redress yourself” rather than “Put your clothes back on.” And I much preferred asking a rumpled patient, “How did you yourself sleep?” rather than “How was your night?” I doubt any patient ever noted the difference, but reflexive verbs gave me comfort in an uncomfortable time. But the cancer ward had brought me up against the limits of my high school Spanish. I’d often found myself at a loss for words, even in English — what was this myelosuppression? Apoptosis? Pyridines? And patients’ questions became so much more complex or loaded: once when a
1788
Lessons in Medicine, Mortality, and Reflexive Verbs
tiny Argentinian grandmother asked about her cancer, “Va a matarme?” (Is it going to kill me?), all my Spanish vanished. So in my last summer of med school, I’d enrolled in a language-immersion school in Queretaro, Mexico. I had taken formal Spanish classes in the mornings and learned slang from my host family at night. I’d learned more Spanish in that month than in an entire semester at school and was ridiculously proud of myself for saying, “Me voy a vomitar” (I am myself going to vomit) seconds before I threw up, mid-migraine, on my host mother’s feet. In May of my internship year, Julia was readmitted, and I read her blood smear. I blinked in astonishment at the wide blue field of distorted cells; the slide itself looked incompatible with life. “This is a classic example of a blast crisis, a really bad leukemic relapse,” the pathologist commented and then added, “It’s a death sentence: maybe a week or two.” I went to Julia’s room and found her feverish and sobbing. She kept mumbling, “Me voy a morir” (I am myself going to die) until her Ativan kicked in, at which point I paced the halls, helpless and horrified. Finally, I called my old mentor, Bob Figlin, an oncologist I’d shadowed in med school. I told him Julia’s story and asked him how the hell this could be. How could our treatment have failed so completely and so fast? “It’s the biology of these tumors,” he said. “It gets around us; we don’t know why.” I feel bad for him now; I know how hard it is to watch a young doctor get smacked by the realities of the failures of medicine,
but at the time I felt only fury. I couldn’t bear to let him tell me about tumor resistance or chemosensitivity. I kept thinking, “It is Julia herself who is dying, not a mass of cells.” I could almost hear him shrug his shoulders; he could sense me wringing my hands — both of us feeling helpless in the face of this horrid disease. I stood in the hallway trying not to weep. Then something Bob said broke through: “Now, you concentrate solely on her comfort.” I automatically translated it into Spanish, with its reflexive verb: “Ahora nos concentramos en su comodidad” (Now we concentrate ourselves on her comfort). We, ourselves, all of us. So every day, we concentrated entirely on her comfort. On morning rounds, we juggled her pain meds with her sedatives and antiemetics, and Julia’s eyes began to clear. I started spending my evenings with her. I was her only visitor; her family lived deep in Mexico, almost to Guatemala, in tiny houses with no phones, on dirt roads, “muy pobre,” she explained. I can’t know what it meant to her, but to me it felt soothing to sit and speak Spanish in this quiet space with this dying patient. I consciously endeavored to bring me myself into the room as we sat murmuring outside the normal flow of procedures and results and the hot, crowded hallways. Sometimes I tried to describe what had happened to her, how the marrow in her bones had filled with cells that couldn’t function, though we didn’t know why. Mostly she spoke of family and her life, always in the past tense, sometimes weeping. I held her hand and rubbed her wrists
n engl j med 372;19 nejm.org may 7, 2015
The New England Journal of Medicine Downloaded from nejm.org at Fudan University on May 7, 2015. For personal use only. No other uses without permission. Copyright © 2015 Massachusetts Medical Society. All rights reserved.
PE R S PE C T IV E
and used my reflexive verbs. We were both speaking a foreign language. I promised her and myself that I would be with her until the end. But one broiling June day, I arrived at 6:15 a.m., hot and distracted, and learned Julia had died at 5:30, alone, before the California red-wine dawn. In her bed, I found the ex-Julia; Julia herself had evaporated. I gazed at her, thinking of her suffering, her loneliness, the orders I’d learned to write, thinking about all the distorted white cells that had poured in and out of her marrow, thinking about the phone call I would have to make to her mother, sleeping somewhere deep in southern Mexico. I tried to figure out what to say. I’d never told a family about a loss. How do you tell someone
Lessons in Medicine, Mortality, and Reflexive Verbs
a life is gone, and how do you do it in Spanish? I pictured my Spanish teacher in Queretaro, standing in front of us on the hot July day when she’d taught us to conjugate the reflexive verb “to die” — morirse. “I myself died, you yourself died,” we’d intoned in desultory unison. But suddenly the word’s import had clicked, and I’d sat straight up, red hot and alert, whispering fiercely, “He himself died, she herself died . . . .” I will need to know this verb someday, I remember thinking, this needs to stick. It took most of the day to reach Julia’s mother. When she finally called from the shared village phone, her “Hola?” was questioning and guarded. I explained that I was one of Julia’s doctors, and then I stood stock still, unable to speak, choking on
images: Julia’s blasts, our chats, her mouth sores, my orders, her wrists on the bed in the dawn. Finally, I pulled myself back to the hospital hallway and just said it. I said it as I’d been taught in Queretaro, with grammatical perfection but no true preparation: “Se murio” — “She herself has died.” And then I listened to the wailing of a woman in a village deep in Mexico who sounded as if her own marrow was being ripped from her bones, and it needed no translation at all. The patient’s name and identifying characteristics have been changed to protect her privacy. Disclosure forms provided by the author are available with the full text of this article at NEJM.org. From the Department of Radiation Oncology, Massachusetts General Hospital, Boston. DOI: 10.1056/NEJMp1413815 Copyright © 2015 Massachusetts Medical Society.
n engl j med 372;19 nejm.org may 7, 2015
The New England Journal of Medicine Downloaded from nejm.org at Fudan University on May 7, 2015. For personal use only. No other uses without permission. Copyright © 2015 Massachusetts Medical Society. All rights reserved.
1789
