Suffering, Personhood, and Bio-medicine: Reflections from Across Disciplines
Panelists: Julie Kutac, MA, PhD, Professional Education and Research Specialist for the Alzheimer’s Association-Houston & Southeast Texas Chapter.
Peggy Determeyer, MBA, MDiv, PhD, BCC, McGee Fellow in Bioethics and Aging, Hope and Healing Center and Institute (HHCI).
Rimma Osipov, MD, PhD, third year resident in Internal Medicine, University of North Carolina Chapel Hill.
Jerome Crowder, PhD, Associate Professor, Institute for the Medical Humanities, University of Texas Medical Branch - Galveston.
Moderator: Peggy Determeyer, MBA, MDiv, PhD, BCC.
Broadly speaking, American medicine names the alleviation of suffering as one of its moral ends. What does the amelioration of suffering look like? What does it mean to suffer? This panel broadens the concept of suffering-- moving beyond its conflation with pain as well as expanding the awareness of whose suffering has meaning in the medical encounter. This panel proposes to examine the various aspects of suffering. Starting with the philosophical base by a medical humanist who works with aging populations, the panel will then consider the response of various practitioners of world religions from a chaplain/ethicist who also works with aging populations. A physician/humanist will interrogate the ways that the concept of suffering gets integrated into medical education by offering a critical reflection of her own experience as a medical trainee. The final speaker, a medical anthropologist, will use photographs and narratives that chronicle his father’s illness and reveal times when suffering was and was not apparent.
The first panelist will give a conceptual analysis and topography of suffering. The panelist will question why the concept of suffering is particularly difficult for practitioners to address. Practitioners are not totally without a vocabulary for talking about suffering, but that vocabulary may be inconsistent or impoverished, and may not match with the patient's understanding of the concept. These inconsistencies, the panelist will argue, arise out of the compartmentalization of academic study, which has led to various literatures on suffering that have developed in relative isolation from one another. Perhaps the most widely accepted definition of suffering within medicine comes from Eric Cassell's 1982 NEJM article on sources of suffering. That article is powerful and important, but other definitions from religious studies and philosophy also warrant examination.
Various world religions offer different perspectives on suffering: in some cases, it is to be embraced; in others, avoided. At the bedside, this can create challenges for the family who works to understand and make meaning of the illness experience. As a former critical care chaplain, this panelist will use the segment to explore some of the approaches to suffering and ameliorating strategies.
Understandably, the multiple ways of thinking about suffering make it all the more difficult for health-care workers to address suffering in robust ways. The isolating, silencing nature of suffering further complicates communication. Without a shared framework, easy responses emerge: one response is to conflate suffering with pain alone, another is to simply use suffering as a catch all word used to describe anything that is unpleasant.
Cassell declares that “suffering can include physical pain, but is by no means limited to it.” He goes on to describe suffering as something experienced by the whole person, as a physical, moral, spiritual and social being. In this segment of the panel, the physician/medical humanist will focus on medical education’s engagement with suffering, drawing on her own experiences as a medical trainee.
Since Cassell wrote his classic paper in 1982, it has hardly become commonplace for physicians to talk about suffering or discuss the wholeness of the person they are treating. Partly this may be because the concept of suffering is introduced and discussed too early in medical training, before medical students have really engaged with patients. This panelist first read Cassell’s work as a pre-clinical medical student, before she had seen many patients. By the time she cared for suffering patients as a clinical medical student and later as a resident, Cassell’s insights were long buried under a growing pile of clinical minutiae. Medical students and residents, do not necessarily lack a concept of suffering, but feel cut off from a vocabulary to engage with it as such—falling back on an impoverished clinical language of “pain,” “psychological distress,” and “complex social situations."
In two important ways, however, movements within medicine have drawn upon Cassell's conceptualization of suffering, legitimating a holistic awareness of suffering and personhood . On the one hand, the mainstreaming of the palliative care movement offers an avenue through which physicians can offer hope and care to patients who cannot benefit from biological cure. Training with palliative care physicians as a resident reawakened this panelist’s ability to engage with her patients as the whole persons that they are. Unexpectedly, medicine has also assimilated the concept of suffering through the physician wellness movement. Begun as a response the epidemic of burnout and suicide among healthcare professionals, this movement has made a seemingly self-evident, yet radical claim: that healthcare professionals are whole persons and suffer deeply when there is a lack of satisfaction and balance in their lives. Now enshrined in the Institute for Healthcare Improvement’s “quadruple aim,” the physician wellness movement claims that the first step to recognizing and attending to the suffering of patients is to recognize our own.
The final panelist will explore his father’s narrative. Over the past fifteen years, the panelist’s father underwent procedures for chronic heart failure as well as chemotherapy and radiation therapy for salivary gland cancer. He had the highest regard for his doctors, for the care teams who treated him, for the nurses who cared for him in the ICU, and for his family and friends who tended to him. Rarely throughout his enduring illnesses did he ever show any of the family he was suffering, instead he accepted his issues and “fought on.”
This segment is developed from visual autoethnography the panelist conducted with his father throughout his various illness episodes and recoveries, his visits to clinics, labs, hospitals, offices and therapy centers. In it, the panelist’s father reflects upon his approach to illness and determination to live, his will to “be there” for his family, and the strength he found in his faith, friends and caregivers. As an attorney and retired naval commander, he had excellent health insurance and access to care, he studied his illnesses and regularly consulted his physicians to understand best practices. The panelist uses images and first-hand participation to interrogate the suffering his father denied and the suffering his family endured while learning to care for him. His family had not anticipated the burden of care that would inevitably lead to his further suffering, nor were they prepared medically, psychologically, or financially to take on the level of care that could help him heal. Each month brought with it “new normals”, different expectations for his prognosis, and an inherent worry about the future. This panelist refracts the concept of suffering through the lens of family care of a chronically ill patient.
This interdisciplinary approach is designed to frame various aspects of suffering, and invite further reflections from the audience.
The first panelist will give a conceptual analysis and topography of suffering. The panelist will question why the concept of suffering is particularly difficult for practitioners to address. Practitioners are not totally without a vocabulary for talking about suffering, but that vocabulary may be inconsistent or impoverished, and may not match with the patient's understanding of the concept. These inconsistencies, the panelist will argue, arise out of the compartmentalization of academic study, which has led to various literatures on suffering that have developed in relative isolation from one another. Perhaps the most widely accepted definition of suffering within medicine comes from Eric Cassell's 1982 NEJM article on sources of suffering. That article is powerful and important, but other definitions from religious studies and philosophy also warrant examination.
Various world religions offer different perspectives on suffering: in some cases, it is to be embraced; in others, avoided. At the bedside, this can create challenges for the family who works to understand and make meaning of the illness experience. As a former critical care chaplain, this panelist will use the segment to explore some of the approaches to suffering and ameliorating strategies.
Understandably, the multiple ways of thinking about suffering make it all the more difficult for health-care workers to address suffering in robust ways. The isolating, silencing nature of suffering further complicates communication. Without a shared framework, easy responses emerge: one response is to conflate suffering with pain alone, another is to simply use suffering as a catch all word used to describe anything that is unpleasant.
Cassell declares that “suffering can include physical pain, but is by no means limited to it.” He goes on to describe suffering as something experienced by the whole person, as a physical, moral, spiritual and social being. In this segment of the panel, the physician/medical humanist will focus on medical education’s engagement with suffering, drawing on her own experiences as a medical trainee.
Since Cassell wrote his classic paper in 1982, it has hardly become commonplace for physicians to talk about suffering or discuss the wholeness of the person they are treating. Partly this may be because the concept of suffering is introduced and discussed too early in medical training, before medical students have really engaged with patients. This panelist first read Cassell’s work as a pre-clinical medical student, before she had seen many patients. By the time she cared for suffering patients as a clinical medical student and later as a resident, Cassell’s insights were long buried under a growing pile of clinical minutiae. Medical students and residents, do not necessarily lack a concept of suffering, but feel cut off from a vocabulary to engage with it as such—falling back on an impoverished clinical language of “pain,” “psychological distress,” and “complex social situations."
In two important ways, however, movements within medicine have drawn upon Cassell's conceptualization of suffering, legitimating a holistic awareness of suffering and personhood . On the one hand, the mainstreaming of the palliative care movement offers an avenue through which physicians can offer hope and care to patients who cannot benefit from biological cure. Training with palliative care physicians as a resident reawakened this panelist’s ability to engage with her patients as the whole persons that they are. Unexpectedly, medicine has also assimilated the concept of suffering through the physician wellness movement. Begun as a response the epidemic of burnout and suicide among healthcare professionals, this movement has made a seemingly self-evident, yet radical claim: that healthcare professionals are whole persons and suffer deeply when there is a lack of satisfaction and balance in their lives. Now enshrined in the Institute for Healthcare Improvement’s “quadruple aim,” the physician wellness movement claims that the first step to recognizing and attending to the suffering of patients is to recognize our own.
The final panelist will explore his father’s narrative. Over the past fifteen years, the panelist’s father underwent procedures for chronic heart failure as well as chemotherapy and radiation therapy for salivary gland cancer. He had the highest regard for his doctors, for the care teams who treated him, for the nurses who cared for him in the ICU, and for his family and friends who tended to him. Rarely throughout his enduring illnesses did he ever show any of the family he was suffering, instead he accepted his issues and “fought on.”
This segment is developed from visual autoethnography the panelist conducted with his father throughout his various illness episodes and recoveries, his visits to clinics, labs, hospitals, offices and therapy centers. In it, the panelist’s father reflects upon his approach to illness and determination to live, his will to “be there” for his family, and the strength he found in his faith, friends and caregivers. As an attorney and retired naval commander, he had excellent health insurance and access to care, he studied his illnesses and regularly consulted his physicians to understand best practices. The panelist uses images and first-hand participation to interrogate the suffering his father denied and the suffering his family endured while learning to care for him. His family had not anticipated the burden of care that would inevitably lead to his further suffering, nor were they prepared medically, psychologically, or financially to take on the level of care that could help him heal. Each month brought with it “new normals”, different expectations for his prognosis, and an inherent worry about the future. This panelist refracts the concept of suffering through the lens of family care of a chronically ill patient.
This interdisciplinary approach is designed to frame various aspects of suffering, and invite further reflections from the audience.