perspective
Officers of The Center – 2014
field notes Dying and multiplying life. It was only after James P. Lovette’s death, in 2006, that I discovered that the twenty-four-year-old colleague and friend with whom I had spent so many afternoons in Paris and Cleveland debating issues in organ transplantation had been the first successful child heart transplantee in the world and one of the longest-living survivors of a second transplant. During the years we met, he never even hinted at the fact that three different hearts had beaten in his chest. Not even in the middle of many a heated discussion in which an argument from experience could have crushed my theoretical approach. The revelation that his life had been an almost uninterrupted chain of medical challenges suddenly made me appreciate his quirkiness in a whole new light. In 2004, during my first visit to the United States, he took me in his Saturn on a Sunday morning to visit The Hastings Center, fulfilling one of my dreams. Nobody was there, but I ventured onto the lawn over the Hudson to take a picture. James did not talk to me for the rest of the day for having ignored the private property sign. Little did I know at that time that I would become a frequent visiting scholar at the Center to study the ethics of organ transplantation. During my most recent visit to the Center, the scholars and I had the opportunity to discuss with James Bernat, a Dartmouth professor of neuroscience and the author of “On Noncongruence between the Concept and Determination of Death” (in the Report’s November-December 2013 issue), contemporary controversies about the declaration of death for potential organ donors. Organ transplantation crudely exemplifies a traditional moral dilemma between means and ends: in order to save a life, someone else has to die. Bioethicists involved in this field have the role of identifying the ethical issues surrounding organ donation and helping others to argue in an intelligible and convincing way. Sometimes, this makes bioethicists look like a threat to the good reputation of organ transplantation. Some people from the transplant community find them particularly upsetting when they suggest that donors might not be dead at the moment of organ retrieval. Raising public doubts about the status of organ donors can certainly decrease societal willingness to donate. But would public trust be better protected if scholars and physicians hid their scientific and normative doubts from laypeople? I have this sort of dilemma in mind since I work in this field. In my view, bioethicists have the obligation to foster a discussion as open and transparent as possible on these matters. Still, I sometimes fear that I may be helping to cause unnecessary harms to potential recipients who are desperately waiting for a vital organ. Scholars would be chillingly cold if their quest for truth systematically came at the cost of lives lost. Every life can be meaningful and provide meaning to many others. This is true even with organ recipients, who often have short lives full of considerable suffering. James Lovette, who was born with a congenital heart disease, who underwent his first heart transplant when he was four years old and his second when he was ten, exemplifies this. Some may wonder whether it was all worth it. For those of us who were fortunate enough to witness James’s intellectual openness, and for those even more fortunate who are still influenced by him, there is no doubt it was. —David Rodríguez-Arias Spanish National Research Council Visiting Scholar at The Hastings Center
David L. Roscoe
Chair Mildred Z. Solomon
President and Chief Executive Officer Harriet S. Rabb
Secretary Andrew S. Adelson
Treasurer Board of Directors – 2014 Andrew S. Adelson Liza Bailey Daniel Callahan (ex officio) Edgar Cheng The World-Wide Investment Co., Ltd. Rebecca Dresser (ex officio) Washington University School of Law Joseph J. Fins (ex officio) Weill Cornell Medical College Alan R. Fleischman Albert Einstein College of Medicine Willard Gaylin (ex officio) Francis H. Geer St. Philip’s Church in the Highlands Thomas B. Hakes C/S Group Geoffrey R. Hoguet GRH Holdings, LLC Kim Kamdar Domain Associates Patricia Klingenstein Ilene Sackler Lefcourt Sackler Lefcourt Center for Child Development Robert Michels Weill Cornell Medical College Michele Moody-Adams Columbia College Gilbert S. Omenn University of Michigan Michael E. Patterson Richard Payne Duke Divinity School Harriet S. Rabb Rockefeller University Eve Hart Rice David L. Roscoe Michael Roth Wesleyan University Blair L. Sadler Institute for Healthcare Improvement Mildred Z. Solomon (ex officio) Francis H. Trainer, Jr.
Affordable Access to Care for the Undocumented BY DENNIS ROSEN
H
ow do you tell a sick kid that nobody cares if he and stroke had diminished. gets better? That’s an exaggeration, of course, but One major shortcoming of the Affordable Care Act is it is the fundamental message our society sends its specific exclusion of the almost twelve million undocuwhen we tell him that, because he and his family are unmented immigrants—including millions of children—in documented immigrants, we are unwilling to extend them this country from access to the state and federal insurance access to affordable and reliable health insurance that would exchanges where coverage can be purchased. Because of the provide him with a medical device he literally can’t breathe public health problems this causes, as well as the financial without. strain on hospitals providing unreimbursed care to this W is a high-school sophomore with obstructive sleep appopulation, initiatives such as a bill recently approved by nea, a condition in which the throat relaxes until it closes a state senate subcommittee in California to extend uncompletely, leading to repeated choking and abrupt awakdocumented immigrants access to Medi-Cal are gaining enings. In clinic, W could barely keep his eyes open, and traction. This needs to happen nationally, though, ideally his blood pressure was abnormally elby changing the relevant sections of n evated. A sleep study showed that he the ACA and independent of the larger stopped breathing an average of once questions of immigration reform or, every ninety seconds, as his oxygen levfor that matter, of Obamacare. Had els plummeted and his carbon dioxide W been covered by MassHealth, for levels climbed. The nurse practitioner example, either machine would have and I brought him back to the sleep lab been supplied free of charge. n to start him on positive airway pressure It is true that providing undocutreatment with machines that blow air mented immigrants access to the through a mask into the throat, preventing its collapse. A exchanges and subsidies mandated by the ACA would recontinuous positive airway pressure (CPAP) machine did quire additional funding. However, a recent analysis by the an okay job but didn’t completely eliminate his apnea. With University of California, Los Angeles, and the University a bi-level positive airway pressure (BiPAP) machine, the obof California, Berkeley, found that the costs of expanding struction disappeared. Medi-Cal to include undocumented immigrants would But with the resolution of W’s medical problem began largely be offset by the increased state sales tax revenue paid the insurance problems. The only health insurance his parby managed care organizations and by reduced spending at ents could buy wouldn’t pay for either machine. Out of the county level on emergency-room and hospital care of pocket, BiPAP costs sixteen hundred dollars. Even though the uninsured. Notably, this analysis did not include the his parents each work at two jobs, this was far beyond what long-term costs to individuals and to society of chronic disthey could afford. ease that is allowed to develop and to progress unchecked— Ultimately, we prescribed CPAP—which cost eight huninvariably greater than the costs of prevention. dred dollars—and recommended that W sleep on his side It is also true that many of the lower-priced insurance at a forty-five-degree angle. By his next appointment, he products on the exchanges come with high deductibles that was no longer falling asleep in school and was exercising pose difficulties for those in need of medical care, regardless more. Moreover, a host of invisible yet insidious processes of their immigration status and that, therefore, even with were no longer undermining his health. His blood pressure better insurance, W’s family may have struggled with the was better, and his risk of developing diabetes, heart disease, cost of his CPAP. However, it seems obvious that barring children like W from affordable treatment of chronic medical conditions is indefensible, not just morally, but from Dennis Rosen, a pediatric pulmonologist, is author of Vital Conversations: Improving Communication between Doctors and Pahealth-systems and public health perspectives as well.
Insurance for the person and the public
tients (forthcoming, 2014). DOI: 10.1002/hast.360
Officers of The Center – 2014
field notes Dying and multiplying life. It was only after James P. Lovette’s death, in 2006, that I discovered that the twenty-four-year-old colleague and friend with whom I had spent so many afternoons in Paris and Cleveland debating issues in organ transplantation had been the first successful child heart transplantee in the world and one of the longest-living survivors of a second transplant. During the years we met, he never even hinted at the fact that three different hearts had beaten in his chest. Not even in the middle of many a heated discussion in which an argument from experience could have crushed my theoretical approach. The revelation that his life had been an almost uninterrupted chain of medical challenges suddenly made me appreciate his quirkiness in a whole new light. In 2004, during my first visit to the United States, he took me in his Saturn on a Sunday morning to visit The Hastings Center, fulfilling one of my dreams. Nobody was there, but I ventured onto the lawn over the Hudson to take a picture. James did not talk to me for the rest of the day for having ignored the private property sign. Little did I know at that time that I would become a frequent visiting scholar at the Center to study the ethics of organ transplantation. During my most recent visit to the Center, the scholars and I had the opportunity to discuss with James Bernat, a Dartmouth professor of neuroscience and the author of “On Noncongruence between the Concept and Determination of Death” (in the Report’s November-December 2013 issue), contemporary controversies about the declaration of death for potential organ donors. Organ transplantation crudely exemplifies a traditional moral dilemma between means and ends: in order to save a life, someone else has to die. Bioethicists involved in this field have the role of identifying the ethical issues surrounding organ donation and helping others to argue in an intelligible and convincing way. Sometimes, this makes bioethicists look like a threat to the good reputation of organ transplantation. Some people from the transplant community find them particularly upsetting when they suggest that donors might not be dead at the moment of organ retrieval. Raising public doubts about the status of organ donors can certainly decrease societal willingness to donate. But would public trust be better protected if scholars and physicians hid their scientific and normative doubts from laypeople? I have this sort of dilemma in mind since I work in this field. In my view, bioethicists have the obligation to foster a discussion as open and transparent as possible on these matters. Still, I sometimes fear that I may be helping to cause unnecessary harms to potential recipients who are desperately waiting for a vital organ. Scholars would be chillingly cold if their quest for truth systematically came at the cost of lives lost. Every life can be meaningful and provide meaning to many others. This is true even with organ recipients, who often have short lives full of considerable suffering. James Lovette, who was born with a congenital heart disease, who underwent his first heart transplant when he was four years old and his second when he was ten, exemplifies this. Some may wonder whether it was all worth it. For those of us who were fortunate enough to witness James’s intellectual openness, and for those even more fortunate who are still influenced by him, there is no doubt it was. —David Rodríguez-Arias Spanish National Research Council Visiting Scholar at The Hastings Center
David L. Roscoe
Chair Mildred Z. Solomon
President and Chief Executive Officer Harriet S. Rabb
Secretary Andrew S. Adelson
Treasurer Board of Directors – 2014 Andrew S. Adelson Liza Bailey Daniel Callahan (ex officio) Edgar Cheng The World-Wide Investment Co., Ltd. Rebecca Dresser (ex officio) Washington University School of Law Joseph J. Fins (ex officio) Weill Cornell Medical College Alan R. Fleischman Albert Einstein College of Medicine Willard Gaylin (ex officio) Francis H. Geer St. Philip’s Church in the Highlands Thomas B. Hakes C/S Group Geoffrey R. Hoguet GRH Holdings, LLC Kim Kamdar Domain Associates Patricia Klingenstein Ilene Sackler Lefcourt Sackler Lefcourt Center for Child Development Robert Michels Weill Cornell Medical College Michele Moody-Adams Columbia College Gilbert S. Omenn University of Michigan Michael E. Patterson Richard Payne Duke Divinity School Harriet S. Rabb Rockefeller University Eve Hart Rice David L. Roscoe Michael Roth Wesleyan University Blair L. Sadler Institute for Healthcare Improvement Mildred Z. Solomon (ex officio) Francis H. Trainer, Jr.
Affordable Access to Care for the Undocumented BY DENNIS ROSEN
H
ow do you tell a sick kid that nobody cares if he and stroke had diminished. gets better? That’s an exaggeration, of course, but One major shortcoming of the Affordable Care Act is it is the fundamental message our society sends its specific exclusion of the almost twelve million undocuwhen we tell him that, because he and his family are unmented immigrants—including millions of children—in documented immigrants, we are unwilling to extend them this country from access to the state and federal insurance access to affordable and reliable health insurance that would exchanges where coverage can be purchased. Because of the provide him with a medical device he literally can’t breathe public health problems this causes, as well as the financial without. strain on hospitals providing unreimbursed care to this W is a high-school sophomore with obstructive sleep appopulation, initiatives such as a bill recently approved by nea, a condition in which the throat relaxes until it closes a state senate subcommittee in California to extend uncompletely, leading to repeated choking and abrupt awakdocumented immigrants access to Medi-Cal are gaining enings. In clinic, W could barely keep his eyes open, and traction. This needs to happen nationally, though, ideally his blood pressure was abnormally elby changing the relevant sections of n evated. A sleep study showed that he the ACA and independent of the larger stopped breathing an average of once questions of immigration reform or, every ninety seconds, as his oxygen levfor that matter, of Obamacare. Had els plummeted and his carbon dioxide W been covered by MassHealth, for levels climbed. The nurse practitioner example, either machine would have and I brought him back to the sleep lab been supplied free of charge. n to start him on positive airway pressure It is true that providing undocutreatment with machines that blow air mented immigrants access to the through a mask into the throat, preventing its collapse. A exchanges and subsidies mandated by the ACA would recontinuous positive airway pressure (CPAP) machine did quire additional funding. However, a recent analysis by the an okay job but didn’t completely eliminate his apnea. With University of California, Los Angeles, and the University a bi-level positive airway pressure (BiPAP) machine, the obof California, Berkeley, found that the costs of expanding struction disappeared. Medi-Cal to include undocumented immigrants would But with the resolution of W’s medical problem began largely be offset by the increased state sales tax revenue paid the insurance problems. The only health insurance his parby managed care organizations and by reduced spending at ents could buy wouldn’t pay for either machine. Out of the county level on emergency-room and hospital care of pocket, BiPAP costs sixteen hundred dollars. Even though the uninsured. Notably, this analysis did not include the his parents each work at two jobs, this was far beyond what long-term costs to individuals and to society of chronic disthey could afford. ease that is allowed to develop and to progress unchecked— Ultimately, we prescribed CPAP—which cost eight huninvariably greater than the costs of prevention. dred dollars—and recommended that W sleep on his side It is also true that many of the lower-priced insurance at a forty-five-degree angle. By his next appointment, he products on the exchanges come with high deductibles that was no longer falling asleep in school and was exercising pose difficulties for those in need of medical care, regardless more. Moreover, a host of invisible yet insidious processes of their immigration status and that, therefore, even with were no longer undermining his health. His blood pressure better insurance, W’s family may have struggled with the was better, and his risk of developing diabetes, heart disease, cost of his CPAP. However, it seems obvious that barring children like W from affordable treatment of chronic medical conditions is indefensible, not just morally, but from Dennis Rosen, a pediatric pulmonologist, is author of Vital Conversations: Improving Communication between Doctors and Pahealth-systems and public health perspectives as well.
Insurance for the person and the public
tients (forthcoming, 2014). DOI: 10.1002/hast.360
