perspective
Officers of The Center – 2014
field notes Hashtag bioethics. Since August, my work as a research assistant at The Hastings Center has provided an inculcation in bioethics and, surprisingly, the twitteratti. Although this field often grapples with balancing tradition and innovation, involvement in social media is second nature for my generation, the “millennials.” Therefore, when I first started at the Center, I approached our public affairs and communications manager to see if I could help bolster our Twitter presence. I suggested tweeting about more of the scholars’ work and to promote our journals. I saw social media as having a potential to reach people in a way academic papers and conferences never could. My own desire to see knowledge of bioethical issues seep into the general public’s consciousness fueled this optimistic view. Twitter seemed to be an especially effective method of widening the reach of bioethics. It would help create a wider Hastings Center community by spreading knowledge and creating a new forum for discussion. But Twitter has its limits. I believe new media provides more fluid ways of communicating, but can 140 characters inspire anyone to read and think more about the value of a family’s wishes against the costs of keeping a legally dead person on a ventilator? The two tragic cases this winter concerning brain death and futile care, the Jahi McMath and Marlise Muñoz cases, brought this problem to the fore. The Center wanted to use Twitter to highlight a piece on our website clarifying some common misconceptions about brain death. However, no individual tweet could ever convey the complexity of the cases or that the Center is a plurality where individual scholars may differ on ethical issues, let alone engage the painful deliberation on an issue such as indirectly killing a fetus by removing the mother’s body from life support. More than once I have wondered if my actions were simply watering complex issues down to their factual bases. I have worried, too, that my messages were effective only when they reached people already familiar with the ethical problems at stake. Is exposure helpful if it may never lead to deeper discussion? I remain convinced that engaging those who are not usually part of these conversations should happen as a matter of principle and that the field of bioethics is in the midst of discovering how to accomplish that. Bioethics as a whole will need to examine more closely the value of transforming its content for the masses. In a race to stay relevant, it would be impossible to abandon social media, and finding a balance between making bioethical topics accessible and covering their real complexity is a deep, familiar problem. To me, values discussions on health care, age, disease, science, and nature must grow with the changing ways of communicating. This requires keeping a keen eye on new media as an actual tool of engagement, staying vigilant with comments, and responding to inquiry even if it is not fully formed. While scholarly discussion of these topics remains important, informal bioethics dialogue warrants greater appreciation. —Mohini Banerjee Research Assistant
David L. Roscoe
Chair Mildred Z. Solomon
President and Chief Executive Officer Harriet S. Rabb
Secretary
Physician Assistance in Dying: A Subtler Slippery Slope
Andrew S. Adelson
Treasurer Board of Directors – 2014 Andrew S. Adelson Liza Bailey Joshua S. Boger Vertex Pharmaceuticals 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 Barbra Rothschild Columbia University and the University of North Carolina at Chapel Hill Blair L. Sadler Institute for Healthcare Improvement Mildred Z. Solomon (ex officio) Francis H. Trainer, Jr.
BY THOMAS P. DUFFY
M
y patient was a sixty-four-year-old woman who And she could always stockpile her drugs to achieve the had been successfully treated with chemotherapy same purpose. for multiple myeloma. While traveling in her naIn the midst of the ongoing contretemps surrounding tive Netherlands, she developed symptoms of bone pain, the legality of physician-assisted death (PAD), there is a a classic manifestation of active relapsed disease. On her grey zone of physician complicity. My action in providing return to the United States, she was hospitalized for treatmy patient with a potentially lethal quantity of narcotics ment of her bony lesions and the accompanying biochemicertainly marks me as an assistant, albeit at a remove, in cal abnormalities. After her condition stabilized and she her suicide. I could have voiced my presentiment about was put on a new therapeutic plan, she was scheduled for the path she might follow. She was not terminally ill, and discharge and outpatient follow-up. her new treatments might well have provided another rePrior to discharge, the patient stated that she did not mission. But I did not challenge her. She was quite clear wish to return home; she requested asthat immobility would vitiate the life n sistance in dying, an option that was she desired to live. She did not appear available in the Netherlands and that depressed. In fact, her passion for life she believed was also an option in the seemed to be a motivating, paradoxiUnited States. She described her life as cal factor in her decision to die. I knew one that had mainly involved outdoor what to expect, but I did not pursue activities such as skiing and hiking; she the subject with my patient or her husn anticipated a future of pain and inband. creasing immobility. Her husband supported her wishes. My behavior would be questionable or troublesome for There were no children to weigh in. When I informed her some. In retrospect, it has proven burdensome for me as that such assistance in dying was not legal and could not be well. My quiet acceptance of a woman’s request to premaperformed, she accepted this denial with seeming equanimturely end her life represents a worrisome evolution for me ity, but she asked for reassurance that she would be providin my professional responsibility for my patients. I never ed with enough narcotics to handle her pain. I assured her “leaned against” her choices. In fact, I was comfortable in that her pain would be attended to while she awaited the my complicity with the act. possible beneficial effects of her new therapy. I prescribed Critics of the Oregon Death with Dignity initiative have narcotics to cover the interval before her next appointment been somewhat appeased by the apparent absence of any in ten days’ time. slippery slope in the ten years following the introduction Shortly after discharge, her husband called to inform me of PAD. The number of patients who have sought their that his wife had died suddenly the previous evening. The doctors’ aid in dying appears to have remained low with call was not a surprise. I felt she had silently communicated no gathering momentum. However, the slippery slope may to me that she was taking matters into her own hands, and be subtler and even more insidious and dangerous for the the quantity of narcotics I prescribed was enough to be leprofession. A shift in how we care for patients is occurring thal if ingested as a single dose. I was aware that this was in an environment where an enthusiastic embrace of death a possible and perhaps even likely outcome. I could have with dignity may cause some patients to die prematurely. limited the drug amount, but this would have required that We may acquiesce too easily and quickly when we sense she return frequently to the clinic. I believed that such rethat patients intend to end their lives. We ought to focus, I strictions were an affront to her dignity and her autonomy. think, on guaranteeing that we will attend to their suffering on the way to possible recovery and on attempting to help Thomas P. Duffy is a professor of medicine and hematology at Yale them redefine their reasons for living.
Troubling complicity in early patient death
University School of Medicine. DOI: 10.1002/hast.290
Officers of The Center – 2014
field notes Hashtag bioethics. Since August, my work as a research assistant at The Hastings Center has provided an inculcation in bioethics and, surprisingly, the twitteratti. Although this field often grapples with balancing tradition and innovation, involvement in social media is second nature for my generation, the “millennials.” Therefore, when I first started at the Center, I approached our public affairs and communications manager to see if I could help bolster our Twitter presence. I suggested tweeting about more of the scholars’ work and to promote our journals. I saw social media as having a potential to reach people in a way academic papers and conferences never could. My own desire to see knowledge of bioethical issues seep into the general public’s consciousness fueled this optimistic view. Twitter seemed to be an especially effective method of widening the reach of bioethics. It would help create a wider Hastings Center community by spreading knowledge and creating a new forum for discussion. But Twitter has its limits. I believe new media provides more fluid ways of communicating, but can 140 characters inspire anyone to read and think more about the value of a family’s wishes against the costs of keeping a legally dead person on a ventilator? The two tragic cases this winter concerning brain death and futile care, the Jahi McMath and Marlise Muñoz cases, brought this problem to the fore. The Center wanted to use Twitter to highlight a piece on our website clarifying some common misconceptions about brain death. However, no individual tweet could ever convey the complexity of the cases or that the Center is a plurality where individual scholars may differ on ethical issues, let alone engage the painful deliberation on an issue such as indirectly killing a fetus by removing the mother’s body from life support. More than once I have wondered if my actions were simply watering complex issues down to their factual bases. I have worried, too, that my messages were effective only when they reached people already familiar with the ethical problems at stake. Is exposure helpful if it may never lead to deeper discussion? I remain convinced that engaging those who are not usually part of these conversations should happen as a matter of principle and that the field of bioethics is in the midst of discovering how to accomplish that. Bioethics as a whole will need to examine more closely the value of transforming its content for the masses. In a race to stay relevant, it would be impossible to abandon social media, and finding a balance between making bioethical topics accessible and covering their real complexity is a deep, familiar problem. To me, values discussions on health care, age, disease, science, and nature must grow with the changing ways of communicating. This requires keeping a keen eye on new media as an actual tool of engagement, staying vigilant with comments, and responding to inquiry even if it is not fully formed. While scholarly discussion of these topics remains important, informal bioethics dialogue warrants greater appreciation. —Mohini Banerjee Research Assistant
David L. Roscoe
Chair Mildred Z. Solomon
President and Chief Executive Officer Harriet S. Rabb
Secretary
Physician Assistance in Dying: A Subtler Slippery Slope
Andrew S. Adelson
Treasurer Board of Directors – 2014 Andrew S. Adelson Liza Bailey Joshua S. Boger Vertex Pharmaceuticals 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 Barbra Rothschild Columbia University and the University of North Carolina at Chapel Hill Blair L. Sadler Institute for Healthcare Improvement Mildred Z. Solomon (ex officio) Francis H. Trainer, Jr.
BY THOMAS P. DUFFY
M
y patient was a sixty-four-year-old woman who And she could always stockpile her drugs to achieve the had been successfully treated with chemotherapy same purpose. for multiple myeloma. While traveling in her naIn the midst of the ongoing contretemps surrounding tive Netherlands, she developed symptoms of bone pain, the legality of physician-assisted death (PAD), there is a a classic manifestation of active relapsed disease. On her grey zone of physician complicity. My action in providing return to the United States, she was hospitalized for treatmy patient with a potentially lethal quantity of narcotics ment of her bony lesions and the accompanying biochemicertainly marks me as an assistant, albeit at a remove, in cal abnormalities. After her condition stabilized and she her suicide. I could have voiced my presentiment about was put on a new therapeutic plan, she was scheduled for the path she might follow. She was not terminally ill, and discharge and outpatient follow-up. her new treatments might well have provided another rePrior to discharge, the patient stated that she did not mission. But I did not challenge her. She was quite clear wish to return home; she requested asthat immobility would vitiate the life n sistance in dying, an option that was she desired to live. She did not appear available in the Netherlands and that depressed. In fact, her passion for life she believed was also an option in the seemed to be a motivating, paradoxiUnited States. She described her life as cal factor in her decision to die. I knew one that had mainly involved outdoor what to expect, but I did not pursue activities such as skiing and hiking; she the subject with my patient or her husn anticipated a future of pain and inband. creasing immobility. Her husband supported her wishes. My behavior would be questionable or troublesome for There were no children to weigh in. When I informed her some. In retrospect, it has proven burdensome for me as that such assistance in dying was not legal and could not be well. My quiet acceptance of a woman’s request to premaperformed, she accepted this denial with seeming equanimturely end her life represents a worrisome evolution for me ity, but she asked for reassurance that she would be providin my professional responsibility for my patients. I never ed with enough narcotics to handle her pain. I assured her “leaned against” her choices. In fact, I was comfortable in that her pain would be attended to while she awaited the my complicity with the act. possible beneficial effects of her new therapy. I prescribed Critics of the Oregon Death with Dignity initiative have narcotics to cover the interval before her next appointment been somewhat appeased by the apparent absence of any in ten days’ time. slippery slope in the ten years following the introduction Shortly after discharge, her husband called to inform me of PAD. The number of patients who have sought their that his wife had died suddenly the previous evening. The doctors’ aid in dying appears to have remained low with call was not a surprise. I felt she had silently communicated no gathering momentum. However, the slippery slope may to me that she was taking matters into her own hands, and be subtler and even more insidious and dangerous for the the quantity of narcotics I prescribed was enough to be leprofession. A shift in how we care for patients is occurring thal if ingested as a single dose. I was aware that this was in an environment where an enthusiastic embrace of death a possible and perhaps even likely outcome. I could have with dignity may cause some patients to die prematurely. limited the drug amount, but this would have required that We may acquiesce too easily and quickly when we sense she return frequently to the clinic. I believed that such rethat patients intend to end their lives. We ought to focus, I strictions were an affront to her dignity and her autonomy. think, on guaranteeing that we will attend to their suffering on the way to possible recovery and on attempting to help Thomas P. Duffy is a professor of medicine and hematology at Yale them redefine their reasons for living.
Troubling complicity in early patient death
University School of Medicine. DOI: 10.1002/hast.290
