- Email: [email protected]
How is comorbidity lived?
Perspectives
The art of medicine How is comorbidity lived? I first met Beverly in 2002 after she agreed to be part of a study on the management of illness in low-income households in Baltimore, MD, USA. At the time she was 52 years old—although in fairness she told me she was 52 every year that I knew her. When the study ended, Beverly asked if we could continue our conversations as part of my ongoing research, and we remained in contact for years. Beverly shared a house with three grandchildren, the youngest of her three sons, and her mother. Her eldest son and his wife both had HIV and struggled with addiction. They were no longer allowed to visit the house once Beverly took custody of their children. Her middle son was also living with HIV and relied upon Beverly for financial and emotional support. There were moments when our conversations were intense and frequent, and others when I asked too much of her––oversteps resulting in periods of absence and avoidance. Some topics were always up for discussion (her grandchildren, their care), and others were off limits altogether (her history of heroin use in particular). Her diabetes, high blood pressure, hepatitis C, renal disease, depression, and chronic pain were, however, never off limits, and remained at the centre of our conversations. Research that seeks to appreciate the everyday reality of comorbidity––the contingent character of chronic, reoccurring illnesses––is faced with theoretical and methodological untidiness. The correspondence of symptom and root cause is muddled. Inside the clinic, the demand for an index disease to guide understanding and intervention is often answered only by the story or symptom presented during each clinical encounter. Outside the clinic, the daily negotiation of health and illness emerges in ways that are both precarious and pedestrian. Few would be surprised if the daily struggle with comorbidity wore a person down, eroding not only the meaning of illness but of life. And yet Beverly tried resolutely to direct the meaning of her many medical conditions in the everyday. Beverly’s is a story about the interlacing of economic, social, corporal, and ontological insecurities, with moments of reprieve, repair, and mutual aid. Beverly shows just how complicated transactions for health care are in an urban setting in the USA. What emerged in our encounters were the ways acts of care took shape between biomedical and domestic spheres––between the clinic and home––as the management of symptoms put pressure on otherwise supportive social arrangements, and remade relationships (to oneself, to others). My aim as an anthropologist has been to follow the uneven grain of these relationships. During 3 days one summer Beverly experienced episodes of acute distress related to her chronic conditions. These episodes can be called discrete only in terms of their 1128
presentation day to day, the actions taken by Beverly and her family, and the way outcomes came to be understood and managed. They are also discrete in the way Beverly described them to me. For her, each episode represented some compartmentalised aspect of her experience of illness and was to be understood only in its specific context. On the first day an ambulance arrived at Beverly’s house after her youngest son had reported that his mother had been fainting all afternoon. Each time she fainted, her son would move her to the couch where she would recover. But she refused to “stay put” and would faint again upon standing. Once at the hospital, the emergency room physician determined that Beverly was experiencing an acute diabetic crisis. In Beverly’s words, she had had “too much sugar”. After several hours in the emergency room, and once her erratic heart rate came under control, she went home against medical advice. She did not leave, however, before a social worker had told her about some free health education sessions at the hospital to help people manage their diabetes. The social worker’s business card sat in a pool of condensation from a glass of juice on Beverly’s coffee table as she recounted the story to me. The second day began much in the same way as the first: a cycle of standing and fainting. Beverly had recently been a patient in the pulmonary medicine inpatient unit of the university hospital not far from her home. For the past several years she had suffered the effects of chronic obstructive pulmonary disease. Her mother decided they should drive to the university hospital rather than calling an ambulance again: a different hospital, a different emergency room. Beverly’s mother drove her van, but had a breakdown before reaching the emergency room. Her youngest son was able to make the repair and they eventually made it to the hospital a couple of hours later (even with the breakdown, public transport from Beverly’s neighbourhood to the hospital would have taken much longer). Beverly explained to the intake nurse that she was being treated for emphysema at the hospital, and that perhaps the cause of her fainting was shortness of breath. She was given a bronchodilator inhaler, observed for a few hours, and sent home. I was told about the first 2 days on the third, when I visited Beverly at home. She wheezed and coughed through a cloud of cigarette smoke as she recounted the events. Now, she was certain her blood pressure was high because she was experiencing a blinding headache. She was also hungry but afraid to eat. She said her cousin was having a birthday party later that day at her father’s house, only a few blocks away in a nearby neighbourhood. I asked if I could do something to help her situation. “Could you pick up soda, paper plates, and plastic forks and spoons at the Save-A-Lot? And bring www.thelancet.com Vol 386 September 19, 2015
them over?” Beverly said that her mother might take her to the Catholic Hospital near her father’s house later that day. I returned from the grocery store to find the family ready to leave for the party. I followed Beverly’s mother as she drove her van to the party, in case it broke down again. There were a few family members at her father’s house already, who I had spoken with and interviewed during previous visits to Beverly’s house. After dropping off the groceries, I prepared to leave. I asked Beverly if she thought the events of the past 2 days were related, perhaps something underlying and connecting all her episodes. Her response was terse: “These are all different parts of diseases. I thought you was suppose to know about this kind of thing?” Beverly insisted that her episodes of illness were a series of separate events. Her tone made it clear that there was no room for a follow-up question. Weeks later I would try to raise the topic again only to have my efforts deflected. My questions steadily devolved (“Do you think you can only be one kind of sick at a time?”) until I gave up. Months later, these 3 days would be a memory that only I seemed invested in recovering. “I’ve got enough to worry about”, she would tell me. “You have a knack for making things bigger than they are.” Beverly’s experience as a patient of multiple chronic and acute conditions must be understood in and of time, in relation to the present moment, each one as potent as the next. She is a patient only in the single lens of the clinic or hospital or specialist who sees her in that moment. Strictly speaking, Beverly is saturated with symptoms; a life lived— yes—but one dampened by disorder and disability. And yet for all her compartmentalisation, these symptoms came to characterise a whole––her life––a life with “diseases” and not simply interwoven disease aetiologies or a pattern of symptomatology beyond her appreciation or understanding. The question “how is comorbidity lived?” is as much about illness as it is about living––and living for Beverly was bound up with illness each time it touched her. Comorbidity is a clinical and conceptual problem. It is simultaneously a problem of how to describe multiple morbidities—clinically or epidemiologically—and a problem of how individuals themselves conceptualise and wrestle with their polypathia. It is hard to find common ground between situations of comorbidity; a single definition ignores how episodes of distress come to shape the expression and management of other disorders for the individual in unique ways. Comorbidity is not terra incognita; it is terra nullius governed by no one. Over the years I knew her, the episodes of illness Beverly experienced dissolved into one another again and again, overtaking her memory of past crises by the crisis of the moment, and still she insisted on control, upon holding to her idea of “different parts of diseases”. Comorbidity complicates the clinical picture of a patient, and in doing so, complicates the intellectual labour of clinicians who are forced to contend with a conditional www.thelancet.com Vol 386 September 19, 2015
Courtesy of Nick van Woert
Perspectives
Nick van Woert, Untitled (2011)
form of presence found in the single clinical encounter. When I accompanied Beverly on her various doctor visits, I saw the way she could refashion her own priorities along the priorities she perceived to be held by clinicians, and clinicians engaged in a complementary labour of sharing her priorities in return. Through the play of disorder and circumstance (and presentation and expectation), to treat is to capture, to arrest symptoms in a particular moment, but rarely is there enough time or resource to discover where these symptoms fit within the complex lattice that makes up the individual experience of comorbidity. And just as there is no one picture of comorbidity in the clinical setting, there is no one experience outside these settings. Beverly’s story is singular and perplexing––it is a story about a contest for value and meaning in illness, on terms that are lived day-to-day, no matter where it leads.
Todd Meyers Department of Anthropology, Wayne State University, Detroit, MI 48202, USA [email protected] Names in the essay have been changed to protect privacy and the research was conducted in accordance with protocol approved by the Johns Hopkins University Institutional Review Board. This essays draws on research from Todd Meyers’ current book project Events Out of Sequence.
Further reading Biehl J. Vita: life in a zone of social abandonment, updated with a new afterword. Berkeley: University of California Press, 2013 Canguilhem G. Writings on medicine, translated by Stefanos Geroulanos and Todd Meyers. New York: Fordham University Press, 2012 Feinstein AR. The pre-therapeutic classification of co-morbidity in chronic disease. J Chronic Dis 1970; 23: 455–68 Meyers T. The clinic and elsewhere: addiction, adolescents, and the afterlife of therapy. Seattle: University of Washington Press, 2013 Starfield B. Threads and yarns: weaving the tapestry of comorbidity. Ann Fam Med 2006; 4: 101–04
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The art of medicine How is comorbidity lived? I first met Beverly in 2002 after she agreed to be part of a study on the management of illness in low-income households in Baltimore, MD, USA. At the time she was 52 years old—although in fairness she told me she was 52 every year that I knew her. When the study ended, Beverly asked if we could continue our conversations as part of my ongoing research, and we remained in contact for years. Beverly shared a house with three grandchildren, the youngest of her three sons, and her mother. Her eldest son and his wife both had HIV and struggled with addiction. They were no longer allowed to visit the house once Beverly took custody of their children. Her middle son was also living with HIV and relied upon Beverly for financial and emotional support. There were moments when our conversations were intense and frequent, and others when I asked too much of her––oversteps resulting in periods of absence and avoidance. Some topics were always up for discussion (her grandchildren, their care), and others were off limits altogether (her history of heroin use in particular). Her diabetes, high blood pressure, hepatitis C, renal disease, depression, and chronic pain were, however, never off limits, and remained at the centre of our conversations. Research that seeks to appreciate the everyday reality of comorbidity––the contingent character of chronic, reoccurring illnesses––is faced with theoretical and methodological untidiness. The correspondence of symptom and root cause is muddled. Inside the clinic, the demand for an index disease to guide understanding and intervention is often answered only by the story or symptom presented during each clinical encounter. Outside the clinic, the daily negotiation of health and illness emerges in ways that are both precarious and pedestrian. Few would be surprised if the daily struggle with comorbidity wore a person down, eroding not only the meaning of illness but of life. And yet Beverly tried resolutely to direct the meaning of her many medical conditions in the everyday. Beverly’s is a story about the interlacing of economic, social, corporal, and ontological insecurities, with moments of reprieve, repair, and mutual aid. Beverly shows just how complicated transactions for health care are in an urban setting in the USA. What emerged in our encounters were the ways acts of care took shape between biomedical and domestic spheres––between the clinic and home––as the management of symptoms put pressure on otherwise supportive social arrangements, and remade relationships (to oneself, to others). My aim as an anthropologist has been to follow the uneven grain of these relationships. During 3 days one summer Beverly experienced episodes of acute distress related to her chronic conditions. These episodes can be called discrete only in terms of their 1128
presentation day to day, the actions taken by Beverly and her family, and the way outcomes came to be understood and managed. They are also discrete in the way Beverly described them to me. For her, each episode represented some compartmentalised aspect of her experience of illness and was to be understood only in its specific context. On the first day an ambulance arrived at Beverly’s house after her youngest son had reported that his mother had been fainting all afternoon. Each time she fainted, her son would move her to the couch where she would recover. But she refused to “stay put” and would faint again upon standing. Once at the hospital, the emergency room physician determined that Beverly was experiencing an acute diabetic crisis. In Beverly’s words, she had had “too much sugar”. After several hours in the emergency room, and once her erratic heart rate came under control, she went home against medical advice. She did not leave, however, before a social worker had told her about some free health education sessions at the hospital to help people manage their diabetes. The social worker’s business card sat in a pool of condensation from a glass of juice on Beverly’s coffee table as she recounted the story to me. The second day began much in the same way as the first: a cycle of standing and fainting. Beverly had recently been a patient in the pulmonary medicine inpatient unit of the university hospital not far from her home. For the past several years she had suffered the effects of chronic obstructive pulmonary disease. Her mother decided they should drive to the university hospital rather than calling an ambulance again: a different hospital, a different emergency room. Beverly’s mother drove her van, but had a breakdown before reaching the emergency room. Her youngest son was able to make the repair and they eventually made it to the hospital a couple of hours later (even with the breakdown, public transport from Beverly’s neighbourhood to the hospital would have taken much longer). Beverly explained to the intake nurse that she was being treated for emphysema at the hospital, and that perhaps the cause of her fainting was shortness of breath. She was given a bronchodilator inhaler, observed for a few hours, and sent home. I was told about the first 2 days on the third, when I visited Beverly at home. She wheezed and coughed through a cloud of cigarette smoke as she recounted the events. Now, she was certain her blood pressure was high because she was experiencing a blinding headache. She was also hungry but afraid to eat. She said her cousin was having a birthday party later that day at her father’s house, only a few blocks away in a nearby neighbourhood. I asked if I could do something to help her situation. “Could you pick up soda, paper plates, and plastic forks and spoons at the Save-A-Lot? And bring www.thelancet.com Vol 386 September 19, 2015
them over?” Beverly said that her mother might take her to the Catholic Hospital near her father’s house later that day. I returned from the grocery store to find the family ready to leave for the party. I followed Beverly’s mother as she drove her van to the party, in case it broke down again. There were a few family members at her father’s house already, who I had spoken with and interviewed during previous visits to Beverly’s house. After dropping off the groceries, I prepared to leave. I asked Beverly if she thought the events of the past 2 days were related, perhaps something underlying and connecting all her episodes. Her response was terse: “These are all different parts of diseases. I thought you was suppose to know about this kind of thing?” Beverly insisted that her episodes of illness were a series of separate events. Her tone made it clear that there was no room for a follow-up question. Weeks later I would try to raise the topic again only to have my efforts deflected. My questions steadily devolved (“Do you think you can only be one kind of sick at a time?”) until I gave up. Months later, these 3 days would be a memory that only I seemed invested in recovering. “I’ve got enough to worry about”, she would tell me. “You have a knack for making things bigger than they are.” Beverly’s experience as a patient of multiple chronic and acute conditions must be understood in and of time, in relation to the present moment, each one as potent as the next. She is a patient only in the single lens of the clinic or hospital or specialist who sees her in that moment. Strictly speaking, Beverly is saturated with symptoms; a life lived— yes—but one dampened by disorder and disability. And yet for all her compartmentalisation, these symptoms came to characterise a whole––her life––a life with “diseases” and not simply interwoven disease aetiologies or a pattern of symptomatology beyond her appreciation or understanding. The question “how is comorbidity lived?” is as much about illness as it is about living––and living for Beverly was bound up with illness each time it touched her. Comorbidity is a clinical and conceptual problem. It is simultaneously a problem of how to describe multiple morbidities—clinically or epidemiologically—and a problem of how individuals themselves conceptualise and wrestle with their polypathia. It is hard to find common ground between situations of comorbidity; a single definition ignores how episodes of distress come to shape the expression and management of other disorders for the individual in unique ways. Comorbidity is not terra incognita; it is terra nullius governed by no one. Over the years I knew her, the episodes of illness Beverly experienced dissolved into one another again and again, overtaking her memory of past crises by the crisis of the moment, and still she insisted on control, upon holding to her idea of “different parts of diseases”. Comorbidity complicates the clinical picture of a patient, and in doing so, complicates the intellectual labour of clinicians who are forced to contend with a conditional www.thelancet.com Vol 386 September 19, 2015
Courtesy of Nick van Woert
Perspectives
Nick van Woert, Untitled (2011)
form of presence found in the single clinical encounter. When I accompanied Beverly on her various doctor visits, I saw the way she could refashion her own priorities along the priorities she perceived to be held by clinicians, and clinicians engaged in a complementary labour of sharing her priorities in return. Through the play of disorder and circumstance (and presentation and expectation), to treat is to capture, to arrest symptoms in a particular moment, but rarely is there enough time or resource to discover where these symptoms fit within the complex lattice that makes up the individual experience of comorbidity. And just as there is no one picture of comorbidity in the clinical setting, there is no one experience outside these settings. Beverly’s story is singular and perplexing––it is a story about a contest for value and meaning in illness, on terms that are lived day-to-day, no matter where it leads.
Todd Meyers Department of Anthropology, Wayne State University, Detroit, MI 48202, USA [email protected] Names in the essay have been changed to protect privacy and the research was conducted in accordance with protocol approved by the Johns Hopkins University Institutional Review Board. This essays draws on research from Todd Meyers’ current book project Events Out of Sequence.
Further reading Biehl J. Vita: life in a zone of social abandonment, updated with a new afterword. Berkeley: University of California Press, 2013 Canguilhem G. Writings on medicine, translated by Stefanos Geroulanos and Todd Meyers. New York: Fordham University Press, 2012 Feinstein AR. The pre-therapeutic classification of co-morbidity in chronic disease. J Chronic Dis 1970; 23: 455–68 Meyers T. The clinic and elsewhere: addiction, adolescents, and the afterlife of therapy. Seattle: University of Washington Press, 2013 Starfield B. Threads and yarns: weaving the tapestry of comorbidity. Ann Fam Med 2006; 4: 101–04
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