Opinion
A PIECE OF MY MIND Scott D. Stonington, MD, PhD Department of Global Health and Social Medicine, Brigham and Women’s Hospital, Harvard Medical School, Boston, Massachusetts.
Corresponding Author: Scott D. Stonington, MD, PhD (scott.stonington @stanfordalumni.org). Section Editor: Roxanne K. Young, Associate Senior Editor. jama.com
Whose Autonomy? During my medical residency, I took care of a 64-year-old man, Ian (a pseudonym, as are all names in this essay). He had come to the emergency department for an exacerbation of his chronic obstructive pulmonary disease. He also had rheumatoid arthritis, and before I could take a history, his wife Sarah pulled me aside to say that he was in increasing pain from his arthritis. He never missed a dose of methotrexate, but refused to take nonsteroidal anti-inflammatory drugs. I asked if there was some ill effect from them, but she said, “No, it is just part of his self-image to be tough and not treat his pain. But he needs treatment, whether he will say so or not.” When I saw Ian, it was clear that he was in pain, and I inquired about his opposition to NSAIDs, expecting some adverse effect or fear of harm. But he simply said, “I don’t need them. My wife is just putting you up to this.” Sarah responded, “Ian, you’re being ridiculous. You’re in pain!” He rolled his eyes and said, “Fine, just this once, for her,” and acquiesced to a one-time dose. To me this seemed like progress, but in subsequent encounters when I met with Ian alone, he resisted any suggestion of a more stable regimen. I found myself uncomfortable in these interactions. Initially, I shared with a co-resident that I was caught in “family dynamics.” But on further reflection, I realized that it was more than this: it was a tension between autonomy and paternalism, between following my patient’s wishes and convincing him of what his wife and I thought best. It called to mind my anthropological fieldwork on end-of-life care in Northern Thailand, where I came to understand exactly how deeply biomedicine had taught me to view the world with an autonomy lens, and how problematic that lens could become in the midst of families and other social roles. This insight was the product of “rationality ethnography,” designed to systematically analyze conceptual differences in logic and decision making.1,2 Early in my fieldwork in Northern Thailand, a friend, a Thai nursing student, told me about a patient she had just cared for, an elderly man with colorectal cancer who had developed abdominal pain at home. He did not want to come into the hospital, instead saying, “I am fine. Don’t worry about me. I have had a good life and am reconciled to this.” But his son said, “No way. We’re taking you to the hospital, and we will do everything that medicine has to offer.” At the hospital, the old man said often, “I want to go home. I don’t need any of this treatment.” But his son always told the physicians, “We are treating until the very end.” One day, the old man’s heart faltered, and the medical staff gave him cardiopulmonary resuscitation. He regained consciousness and requested to go home. They decided instead to continue with the plan to take him to surgery to debulk his tumor in preparation for chemotherapy. After surgery, his heart
arrested again, and he received another round of CPR. He spent several days on mechanical ventilation in the intensive care unit. His physicians then informed the son that his father had little chance of recovery, that it was time to take him home to die, to assure that his spirit separate from the body in a metaphysically beneficial place.2 After my friend relayed this story, I was deeply perplexed. “This man clearly expressed his wishes,” I said, “and everyone went against what he wanted.” She rolled her eyes at me. “You think so like a foreigner! The role [sūan] of a father is to say ‘Don’t worry about me, I am fine, I am ready for whatever comes.’ And the role of a son is to say ‘We’re doing everything until the end.’ They both do the right thing, and they both get merit [bun].” She was right about my thinking like a foreigner— her logic was unfamiliar to me. And explaining it requires a brief tour of terms. “Merit” (bun) is a metaphysical principle based on the law of karma (kam), the concept that all actions have consequences. Positive actions generate positive consequences, known as “merit” (bun). Merit can be made, destroyed, and transferred, part of a moral and metaphysical economy. The word “role” or “part” (sūan) invokes a play—not to imply falseness, but to imply instead that there is a script, with each family member following his or her part in the play. Even though there is conflict, each individual is playing his part well, thus accruing “merit” (bun). In other words, the old man and son in my friend’s case were each “doing the right thing.” If, in contrast, the father had said, “Yes, please take me to the hospital,” it would have shown that he was clinging to life, willing to burden his family with his own selfish interests. Likewise, if the son had said, “Okay, Father, we’ll stay at home,” it would have shown a lack of caring, an unwillingness to pay back the debt that he owed his father for parentage and a life of caregiving. My friend’s story produced in me a wave of cultural dizziness. How can one respect the rights of patients, when part of the “right thing to do” in a family system is to go against one another’s wishes and to have one’s explicit wishes transgressed? I had encountered some of this in studying “role theory” in the social sciences, but the concept of role was conspicuously absent in the autonomy-dominant bioethics I had learned in my medical training. Medical care in Western countries has needed to find an ethical system able to appear universal enough to deal with a diversity of beliefs and cultures, and the approach to this diversity has been to rely ever-increasingly on individual rights and autonomy, so much that autonomy has come to seem universal. Edmund Pellegrino, after years of research on cultural differences in bioethics, was still driven to claim: Autonomy is still a valid and universal principle because it is based on what it is to be human. The patient JAMA September 17, 2014 Volume 312, Number 11
Copyright 2014 American Medical Association. All rights reserved.
Downloaded From: http://jama.jamanetwork.com/ by a Karolinska Institutet University Library User on 05/25/2015
1099
Opinion A Piece of My Mind
must decide how much autonomy he or she wishes to exercise, and this amount can vary from culture to culture. It seems probable that the democratic ideals that lie behind the contemporary North American concept of autonomy will spread and that something close to it will be the choice of many individuals in other countries.3 In opposition to this, some scholars have countered that individual autonomy does not apply to some societies, including “East Asian” societies, which instead function on a principle of “family determination,” with “family harmony” allowing distribution of decision making between patients and their family members.4 Ian, who acquiesced to treatment only because it was partly for his wife, hints that this phenomenon may be less of an “East Asian” reality and may instead be an axis of family dynamics for all families to a greater or lesser extent everywhere. Scholars advocating “family determination” would argue that perhaps we need to hold less tightly to individual autonomy and think more about how families make decisions as a whole. But the story of the old man in Northern Thailand also unsettles this idea of “family harmony.” What if disagreement, rather than harmony, is part of a family’s script? Love, care, and ethical decisions may not always be achieved through harmony. In my friend’s story, parts of the “roles” of the old man and his son were to disagree until the very end without ever reaching an explicit agreement on how to proceed. This was the “right thing to do” for both of them. This is a challenging concept. It is even more challenging to decide what to do with it. If the individual may not always be the unit of autonomy, and group autonomy may not always manifest as harmony, doesn’t that put us on a slippery slope? Why stop at the famConflict of Interest Disclosures: The author has completed and submitted the ICMJE Form for the Disclosure of Potential Conflicts of Interest and none were reported. 1. Stonington S. Facing death, gazing inward: end-of-life and the transformation of clinical subjectivity in Thailand. Cult Med Psychiatry. 2011; 35(2):113-133.
1100
ily? One could easily talk about patients’ many roles—relative to friends or physicians, governments, or religious institutions1—each playing a rightful “role” in contradicting patients’ expressed wishes. Aren’t these precisely the power relationships that medical ethicists have worked so hard to break, using autonomy as a concept? One need not reject autonomy completely to benefit from understanding its limitations. How might a respect for family roles help patient care without sliding into right-defying paternalism? Because of my fieldwork, and driven by this simple question, I began to explore the way that Ian’s and Sarah’s family roles were put together. I asked Ian about Sarah’s insistence on treating his pain. He said, “She thinks I’m trying to be tough, that I’m putting on an act, and that she needs to take care of me in spite of myself.” When I asked Sarah, she explained, “He is prideful. He can’t feel like he’s the one asking for help.” Similar to the old man in Thailand, it was Ian’s role not to need care and Sarah’s role to care for him in spite of this. Whenever I framed pain treatment as the best thing for him, he put up a wall; it was only when the treatment was framed as a reluctant acquiescence to her wishes that he would receive it. Ultimately, we agreed on a stable pain regimen for Ian “to satisfy his wife,” but we settled on lower doses than I would likely have used for others with the same disease, and he seemed satisfied with this arrangement. Ian’s treatment plan was not a product of his individual autonomy; it was a hybrid that satisfied both his and Sarah’s family roles. It was also not straightforward “family harmony,” since Ian and Sarah needed precisely to remain in conflict, in tension, over the management of his suffering. This tension preserved their places in their family system. It was only seeing the family as the patient, rife with its autonomy-violating internal role dynamics, that I was able to achieve a sustainable care plan for Ian’s pain.
2. Stonington SD. On ethical locations: the good death in Thailand, where ethics sit in places. Soc Sci Med. 2012;75(5):836-844.
autonomy: a report from East Asia. Bioethics. 1997; 11(3-4):309-322.
3. Pellegrino ED. Is truth telling to the patient a cultural artifact? JAMA. 1992;268(13):1734-1735. 4. Fan R. Self-determination vs. familydetermination: two incommensurable principles of
JAMA September 17, 2014 Volume 312, Number 11
Copyright 2014 American Medical Association. All rights reserved.
Downloaded From: http://jama.jamanetwork.com/ by a Karolinska Institutet University Library User on 05/25/2015
jama.com
A PIECE OF MY MIND Scott D. Stonington, MD, PhD Department of Global Health and Social Medicine, Brigham and Women’s Hospital, Harvard Medical School, Boston, Massachusetts.
Corresponding Author: Scott D. Stonington, MD, PhD (scott.stonington @stanfordalumni.org). Section Editor: Roxanne K. Young, Associate Senior Editor. jama.com
Whose Autonomy? During my medical residency, I took care of a 64-year-old man, Ian (a pseudonym, as are all names in this essay). He had come to the emergency department for an exacerbation of his chronic obstructive pulmonary disease. He also had rheumatoid arthritis, and before I could take a history, his wife Sarah pulled me aside to say that he was in increasing pain from his arthritis. He never missed a dose of methotrexate, but refused to take nonsteroidal anti-inflammatory drugs. I asked if there was some ill effect from them, but she said, “No, it is just part of his self-image to be tough and not treat his pain. But he needs treatment, whether he will say so or not.” When I saw Ian, it was clear that he was in pain, and I inquired about his opposition to NSAIDs, expecting some adverse effect or fear of harm. But he simply said, “I don’t need them. My wife is just putting you up to this.” Sarah responded, “Ian, you’re being ridiculous. You’re in pain!” He rolled his eyes and said, “Fine, just this once, for her,” and acquiesced to a one-time dose. To me this seemed like progress, but in subsequent encounters when I met with Ian alone, he resisted any suggestion of a more stable regimen. I found myself uncomfortable in these interactions. Initially, I shared with a co-resident that I was caught in “family dynamics.” But on further reflection, I realized that it was more than this: it was a tension between autonomy and paternalism, between following my patient’s wishes and convincing him of what his wife and I thought best. It called to mind my anthropological fieldwork on end-of-life care in Northern Thailand, where I came to understand exactly how deeply biomedicine had taught me to view the world with an autonomy lens, and how problematic that lens could become in the midst of families and other social roles. This insight was the product of “rationality ethnography,” designed to systematically analyze conceptual differences in logic and decision making.1,2 Early in my fieldwork in Northern Thailand, a friend, a Thai nursing student, told me about a patient she had just cared for, an elderly man with colorectal cancer who had developed abdominal pain at home. He did not want to come into the hospital, instead saying, “I am fine. Don’t worry about me. I have had a good life and am reconciled to this.” But his son said, “No way. We’re taking you to the hospital, and we will do everything that medicine has to offer.” At the hospital, the old man said often, “I want to go home. I don’t need any of this treatment.” But his son always told the physicians, “We are treating until the very end.” One day, the old man’s heart faltered, and the medical staff gave him cardiopulmonary resuscitation. He regained consciousness and requested to go home. They decided instead to continue with the plan to take him to surgery to debulk his tumor in preparation for chemotherapy. After surgery, his heart
arrested again, and he received another round of CPR. He spent several days on mechanical ventilation in the intensive care unit. His physicians then informed the son that his father had little chance of recovery, that it was time to take him home to die, to assure that his spirit separate from the body in a metaphysically beneficial place.2 After my friend relayed this story, I was deeply perplexed. “This man clearly expressed his wishes,” I said, “and everyone went against what he wanted.” She rolled her eyes at me. “You think so like a foreigner! The role [sūan] of a father is to say ‘Don’t worry about me, I am fine, I am ready for whatever comes.’ And the role of a son is to say ‘We’re doing everything until the end.’ They both do the right thing, and they both get merit [bun].” She was right about my thinking like a foreigner— her logic was unfamiliar to me. And explaining it requires a brief tour of terms. “Merit” (bun) is a metaphysical principle based on the law of karma (kam), the concept that all actions have consequences. Positive actions generate positive consequences, known as “merit” (bun). Merit can be made, destroyed, and transferred, part of a moral and metaphysical economy. The word “role” or “part” (sūan) invokes a play—not to imply falseness, but to imply instead that there is a script, with each family member following his or her part in the play. Even though there is conflict, each individual is playing his part well, thus accruing “merit” (bun). In other words, the old man and son in my friend’s case were each “doing the right thing.” If, in contrast, the father had said, “Yes, please take me to the hospital,” it would have shown that he was clinging to life, willing to burden his family with his own selfish interests. Likewise, if the son had said, “Okay, Father, we’ll stay at home,” it would have shown a lack of caring, an unwillingness to pay back the debt that he owed his father for parentage and a life of caregiving. My friend’s story produced in me a wave of cultural dizziness. How can one respect the rights of patients, when part of the “right thing to do” in a family system is to go against one another’s wishes and to have one’s explicit wishes transgressed? I had encountered some of this in studying “role theory” in the social sciences, but the concept of role was conspicuously absent in the autonomy-dominant bioethics I had learned in my medical training. Medical care in Western countries has needed to find an ethical system able to appear universal enough to deal with a diversity of beliefs and cultures, and the approach to this diversity has been to rely ever-increasingly on individual rights and autonomy, so much that autonomy has come to seem universal. Edmund Pellegrino, after years of research on cultural differences in bioethics, was still driven to claim: Autonomy is still a valid and universal principle because it is based on what it is to be human. The patient JAMA September 17, 2014 Volume 312, Number 11
Copyright 2014 American Medical Association. All rights reserved.
Downloaded From: http://jama.jamanetwork.com/ by a Karolinska Institutet University Library User on 05/25/2015
1099
Opinion A Piece of My Mind
must decide how much autonomy he or she wishes to exercise, and this amount can vary from culture to culture. It seems probable that the democratic ideals that lie behind the contemporary North American concept of autonomy will spread and that something close to it will be the choice of many individuals in other countries.3 In opposition to this, some scholars have countered that individual autonomy does not apply to some societies, including “East Asian” societies, which instead function on a principle of “family determination,” with “family harmony” allowing distribution of decision making between patients and their family members.4 Ian, who acquiesced to treatment only because it was partly for his wife, hints that this phenomenon may be less of an “East Asian” reality and may instead be an axis of family dynamics for all families to a greater or lesser extent everywhere. Scholars advocating “family determination” would argue that perhaps we need to hold less tightly to individual autonomy and think more about how families make decisions as a whole. But the story of the old man in Northern Thailand also unsettles this idea of “family harmony.” What if disagreement, rather than harmony, is part of a family’s script? Love, care, and ethical decisions may not always be achieved through harmony. In my friend’s story, parts of the “roles” of the old man and his son were to disagree until the very end without ever reaching an explicit agreement on how to proceed. This was the “right thing to do” for both of them. This is a challenging concept. It is even more challenging to decide what to do with it. If the individual may not always be the unit of autonomy, and group autonomy may not always manifest as harmony, doesn’t that put us on a slippery slope? Why stop at the famConflict of Interest Disclosures: The author has completed and submitted the ICMJE Form for the Disclosure of Potential Conflicts of Interest and none were reported. 1. Stonington S. Facing death, gazing inward: end-of-life and the transformation of clinical subjectivity in Thailand. Cult Med Psychiatry. 2011; 35(2):113-133.
1100
ily? One could easily talk about patients’ many roles—relative to friends or physicians, governments, or religious institutions1—each playing a rightful “role” in contradicting patients’ expressed wishes. Aren’t these precisely the power relationships that medical ethicists have worked so hard to break, using autonomy as a concept? One need not reject autonomy completely to benefit from understanding its limitations. How might a respect for family roles help patient care without sliding into right-defying paternalism? Because of my fieldwork, and driven by this simple question, I began to explore the way that Ian’s and Sarah’s family roles were put together. I asked Ian about Sarah’s insistence on treating his pain. He said, “She thinks I’m trying to be tough, that I’m putting on an act, and that she needs to take care of me in spite of myself.” When I asked Sarah, she explained, “He is prideful. He can’t feel like he’s the one asking for help.” Similar to the old man in Thailand, it was Ian’s role not to need care and Sarah’s role to care for him in spite of this. Whenever I framed pain treatment as the best thing for him, he put up a wall; it was only when the treatment was framed as a reluctant acquiescence to her wishes that he would receive it. Ultimately, we agreed on a stable pain regimen for Ian “to satisfy his wife,” but we settled on lower doses than I would likely have used for others with the same disease, and he seemed satisfied with this arrangement. Ian’s treatment plan was not a product of his individual autonomy; it was a hybrid that satisfied both his and Sarah’s family roles. It was also not straightforward “family harmony,” since Ian and Sarah needed precisely to remain in conflict, in tension, over the management of his suffering. This tension preserved their places in their family system. It was only seeing the family as the patient, rife with its autonomy-violating internal role dynamics, that I was able to achieve a sustainable care plan for Ian’s pain.
2. Stonington SD. On ethical locations: the good death in Thailand, where ethics sit in places. Soc Sci Med. 2012;75(5):836-844.
autonomy: a report from East Asia. Bioethics. 1997; 11(3-4):309-322.
3. Pellegrino ED. Is truth telling to the patient a cultural artifact? JAMA. 1992;268(13):1734-1735. 4. Fan R. Self-determination vs. familydetermination: two incommensurable principles of
JAMA September 17, 2014 Volume 312, Number 11
Copyright 2014 American Medical Association. All rights reserved.
Downloaded From: http://jama.jamanetwork.com/ by a Karolinska Institutet University Library User on 05/25/2015
jama.com
