Leikin Lecture: On Suffering

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A Narrative Approach to Understanding Suffering in Our Personal and Professional Lives

Tomas J Silber, Ariel K Silber, Irina C Silber, Daniel K Silber

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The obligation of physicians to relieve human suffering stretches back into antiquity. Despite this fact, little attention is explicitly given to the problem of suffering in medical education, research, or practice… The relief of suffering, it would appear, is considered one of the primary ends of medicine by patients and laypersons, but not by the medical profession… patients and their friends and families do not make a distinction between physical and nonphysical sources of suffering in the same way that doctors do.

—Eric J. Cassell (1972)

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The Leikin Memorial Lecture

Tomas Silber, MD, MASS

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Introduction

Let us start by recalling the meaning of the word “patient.” The word derives from the Latin “patiens,” which in turn derives from the word “patior,” which means “I am suffering.”

So why is it that we clinicians are so often uneasy when talking about patient suffering? One simple explanation would be that, in our era of the most extraordinary scientific discoveries, this topic has been neglected because it is so profoundly subjective, impossible to measure, quantify or compare. I propose an additional explanation; entering the world of suffering compels a response that we are not sure we can deliver. Our doubts originate in shortcomings of the health care system itself, neglect by the educational system, and from the burden of our own suffering.

I’ll start with a story from my own life.

It was 1960.

I was in my first year of internship. She was only twelve years old. Maria was in status asthmaticus, her face expressed vividly the anxiety of her “air hunger” and her despair. She had nasal flaring, intercostal retractions, loud wheezing, and was gasping for air. All day long, her family surrounded her hospital bed. She was not responding to treatment.

The family left in the evening and her uncle, a physician, stayed next to her all night long. She was receiving nebulization’s and I started her on an aminophylline drip. I checked her frequently during the night; her respiratory rate had diminished, and she looked calm and beautiful with her rosy cheeks and her long black hair. Her uncle described to me that after an initial state of agitation she had calmed down and fallen asleep.

Her vital signs while sleeping afebrile, respiratory rate 10x’, HR 142x’, and moderately hypertensive. As we rounded in the morning the uncle gave me the thumbs up sign—but then we could not rouse her. The attending physician immediately determined that she was in CO² narcosis and arranged for her intubation. She died later that morning.

My thoughts raced from the suffering child, to the terrible suffering of the parents losing their only child, to the distress of the physician uncle at not being able to protect his niece in the hospital, to finally my torturing realization: maybe, I could have saved this child if I would have recognized on time that her “improved” respiratory rate, her rubicund cheeks, her decreased wheezing and altered vital signs indicated impending respiratory failure.

I was devastated, and upon returning home I broke down in tears. I told my wife that I was going to leave the residency and give up being a doctor. She helped me through this crisis and reminded me of the time I told her why I wanted to be a doctor in the first place.

I remembered.

It was 1950.

I was 7 years old. My mother had been hospitalized for an acute complication (seizures) of her widely metastatic breast cancer. It was a beautiful day in June and with my father we had bought flowers for her. When we arrived at her room her bed was empty. We inquired whether she was taken away for some test, only to learn that she had died during the night and had been taken to the morgue. I was a child, but I knew that what had happened was wrong.

That is when I knew I had to be a doctor.

Stories speak to us. They call for us to explore of the nature of suffering, and the goals of medicine.

The Nature of Suffering and the Goals of Medicine

The question of suffering and its relationship to illness and pain was addressed by Eric Cassel in his landmark 1982 New England Journal of Medicine article, “The Nature of Suffering and the Goals of Medicine.” [1] In his narrative he described how suffering is experienced by persons, not solely by bodies. The source of suffering is the threat to the intactness of the person as a complex social and psychological entity. Of course suffering may include physical pain, but it is not limited to it. Cassel stressed how a clinician’s failure to understand the nature of suffering can result in interventions that may be scientifically adequate but not only fail to relieve suffering, but can even become a source of suffering. The goals of medicine hence, Cassel proposes, are “twin obligations”: to treat, and to relieve suffering.

How can a doctor become able to relieve suffering—to heal?

Healing and the Wounded Healer

Healing requires an attunement to suffering, and here enters the experience of the wounded healer. At a time when modern medicine is moving towards ever-increasing sophistication and specialization, it may seem quaint to search in mythology for the roots and origins of the healing process. Yet I invite you to enter the world of mythology.

Asclepius is the son of Adonis and Coronis. Coronis, while pregnant with Asclepius, has an affair. Adonis finds out and is so enraged that he kills her. He then saves his son by doing a C-section. Asclepius is sent to Chiron, a centaur who is versed in the art of healing. Chiron is an unusual character: he is a Greek god dwelling in a cave and he suffers from an incurable wound. Thus Asclepius will bring to medicine the thinking side of his father Apollo and the emotional side of Chiron, his adoptive father and teacher.

There is a strange power in that image of the mythological physician, our precursor, whose primordial source of knowledge is nothing other than the presence of a wound in which the healer forever partakes. This notion of the “wounded healer” is the idea that all of us contribute to help other people and ourselves by virtue of our own wounds. This is so because it is by virtue of our own wounds that we have compassion and empathy for the suffering of others.

Patients Seek Empathy from their Physicians

Before modern medicine, empathy was really all a good doctor had to offer. Later on, the gigantic leaps in medical knowledge, coupled to the reduction in face time between doctors and their patients, led to an apparent tension between the physician’s striving for scientific detachment, and the “old fashioned“ care for patients and their personal feelings. Yet the perception that empathy was important did not fade. Thus, a new definition of empathy arose among a leading group of twentieth-century physicians: empathy as the act of correctly acknowledging the emotional state of another without experiencing that state oneself.

Note how much this contrasts with the lay meaning of empathy, since for everybody else outside the field of medicine, empathy is clearly an essentially affective mode of understanding. It goes without saying that clinicians cannot fully experience the suffering of each patient, however the point that clinicians should not “experience the state oneself” emphasizes that this form of empathy is an intellectual rather than an emotional form of knowing. Implicit is the assumption that experiencing emotion is not important for an understanding what a patient is experiencing.

Indeed, the medical literature of the twentieth century, with which I grew up, presents professional empathy as purely cognitive, and contrasts this with sympathy. This was highlighted in book chapters such as “Training for Detached Concern,” describing how physicians need to maintain the same detachment in a clinical encounter that enables medical students to dissect a cadaver. The goal was to train doctors to listen empathically without becoming emotionally involved.

But there is a problem with merely labeling emotions. Detached concern postulates that knowing how a person feels is no different from knowing that a person is in a certain emotional state. The reality is that the function of empathy is to recognize what it feels like to experience something. In simple terms real empathy is the work of attunement.

In her seminal work on empathy Jodi Halpern [2] discusses ways that clinicians can harness their emotional responses to enhance the medical care of their patients. She shows how emotions help guide and hold our attention on what is humanly significant and how empathy can facilitate trust and disclosure, and thereby be directly therapeutic. Moreover, being able to provide an empathic response to suffering makes being a physician more meaningful and satisfying.

The Neurobiology of Suffering and Empathy

There is a biological basis for the human processing of another’s suffering. It is hardwired in our species and when utilized properly makes possible the alleviation of suffering. Neuroscience has identified neurons in the inferior frontal and posterior parietal regions that are active both when one is performing a task and when one is watching another person performing that same task. This capacity extends to communication; for example, Functional Magnetic Resonance Imaging (fMRI) scans show that when two people share an experience, the same regions of the brain get activated simultaneously in the teller and in the listener. The neurobiological basis for this human capacity has been appropriately named the mirror neuron system.

The mirror neuron system is at work when we are greeted by a friendly smile or when an outburst of yawning erupts during a presentation (Hopefully not this one). This hardwiring for the capture of other people’s emotions and their suffering is powerful, and has proven essential to the survival of the species. The utility of the mirror system is shown very early in human life. Psychological observations of young children have identified it in infants under a year of age while attempting to comfort a crying baby. [3] In mature adults this system is fully developed. Helen Riess has utilized advanced image technology to study dyads of physicians and their patients. [4] In this research, Riess has discovered detectable physiologic changes: the very regions of the brain that were activated in suffering patients were active, albeit less intensely, in the physicians that take care of them. This accurate experiencing of another person’s brain, by being milder, is probably what may enable clinicians to understand a person’s suffering without being overwhelmed by it. The mirror neuron system underlies our capacity for empathy.

The psychiatrist Richard Friedman has addressed the delicate balancing act of understanding patient suffering, and yet not being swept away by it. [5] As opposed to becoming insensitive or even callous towards this suffering, Friedman advocates for an education aimed at the development of empathic imagination. This idea has been best incorporated in the praxis of Narrative Medicine and is congruent with our everyday experience: we understand a friend’s distress about an impending divorce, we celebrate the promotion of a colleague, and we feel a child’s disappointment after losing a soccer game. The same type of empathy that is the glue that holds families together and is essential to social relationships is what needs to be systematically incorporated into the very core of health care.

I will end with an idea connecting to my origins: empathic care can be compared to dancing the tango in that one needs to pay attention to his or her partner, but needs to do it selectively. The tango dancer that pays attention to each of the partner’s steps will eventually lose a step, or will soon become exhausted. This analogy stresses that if clinicians attempt to “feel into” every emotion in every patient they see, then they would be unable to pick up all of them and would eventually become exhausted (or “burn out”). Similar to the tango dancer, the key ingredient is the ability for us to remain synchronous with each patient.

To illustrate this, a final story

John became my patient when he was 12 years old. Just prior to his eighteenth birthday this dynamic, bright athletic and handsome young man was executed by a bullet to the head. That week his mother brought in his younger sister to see me because the girl was suffering from panic attacks. At that visit we talked about her son, of whom she had been very proud, and at one point she said to me, with a sad smile,

“You know Dr. Silber, he had all his immunizations up to date.“

At that moment I became overwhelmed and with tears in my eyes, in a broken voice I responded,

“Yes, you have always been a wonderful mother.”

And then we hugged. After that exchange, the grieving sister trusted my care.

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Panel Commentary I: Ariel Silber, PhD

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Thank you for your powerful and moving presentation and thank you for making available to the three of us your Leikin Lecture so that we could be able to prepare our commentaries. Your presentation highlights the importance of empathy in the alleviation of suffering. My comments will center on your discussion of empathy.

The concept of empathy was coined by the British psychologist Edward B. Titchener (1867-1927) from two Greek words, em and pathos, a translation from the German word einfühlung, meaning “feeling into.” [6]

The term was not originally developed for the field of Medicine, but rather as an approach to the field of Aesthetics to describe a person’s response to a work of art. It was much later that the concept of empathy was extrapolated from the world of art to the disciplines of Psychology and then Medicine.

Essentially, empathy suggests that in the same way people can “feel into” a Mozart Symphony, a Rodin sculpture, or a short story by Jorge Luis Borges, they could also “feel into” an adolescent’s despair or the grief of parents losing their only child.

While empathy is an innate skill for many providers, for others it may be underdeveloped or can be diminished by circumstances. Hence a crucial question is whether an empathic response to suffering can be taught?

Eric B. Larson and Xin Yao of the Group Health Cooperative, University of Washington, Seattle, answer in the affirmative—empathy can be acquired and perfected by working at it. They describe empathy as an emotional labor: “a psychological process that encompasses a collection of affective, cognitive and behavioral mechanisms and outcomes in reaction to the observed experiences of others.” [7]

It seems a tall order to achieve such a level of functioning. How can it be developed? We may be able to find the answer once again by drawing an analogy to the arts, and more specifically, the theater.  The idea is to view us clinicians as actors in a drama (or comedy, depending on the situation) within a story that encompasses our offices and hospitals as the scenario where the acts take place.

 Larson and Yao describe two types of emotional labor that actors can undertake: surface acting and deep acting. Surface acting refers to classical communication skills: making eye contact, not interrupting, summarizing patients’ statements and responding to their affect. Surface acting is portraying an emotional display via sometimes studied facial expressions. Deep acting involves drawing on one’s own experiences to understand the emotions of another person. Deep acting brings greater rewards by generating a feedback loop of empathy. Professionals that can generate a “virtuous cycle of empathy” are more likely to feel nourished and refreshed by their work rather than exhausted by it.

The comparison of the work of doctors, psychologists, and nurses, to acting may be misperceived by some as cynical. Quite the opposite: acting is not synonymous with pretending. When actors have successful theatre runs they are on stage sometimes once or twice a day for several weeks and they do not tire of it and repeat their performance with gusto. The reason behind this is precisely the actor’s investment in responding to the feedback of the other actors in the story.

This is an invitation to clinicians to “enact” this to the best of their ability when entering a patient’s room, when seeing a patient in the office and whenever responding to suffering.

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Panel Commentary II: Irina Carlota Silber, PhD

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It is a pleasure to provide a commentary on Dr. Tomas Silber’s Leikin Lecture, a culmination of his decades of work, of care, and scholarship in the practice of adolescent medicine. These comments take up my anthropological interest in the everyday, in the power of narrative and the place of testimony. In what follows, anthropological concepts, such as structural violence and social suffering, and methods, such as participant observation, will be offered in the service of thinking through the agency of children and adolescents.

Ethnography and Cultural Anthropology

As a socio-cultural anthropologist I have spent the better part of the last twenty-five years engaged in the study of post war societies. Specifically, I have examined the legacies of El Salvador’s civil war (1980-1992) by exploring how men, women, teens, and young children rebuild their lives in the aftermaths of extraordinary and everyday violence. [8] This work highlights the importance of empathic listening and the aim of positioned research for social justice. In the late 1990s, for example, the Salvadorans I worked with shared their experiences of extreme loss and pain with me, but most often framed their language of suffering through a potent critique of the structural forces that kept them from living, as they say in Spanish, una vida digna, a dignified life. Thus, while we are thinking about suffering, I would offer that we can also reframe the question and ask about possibilities, about what it takes to make a dignified life?

Methodologically, ethnography offers a textured and intimate analysis of everyday life and how people make sense of their worlds. Cultural anthropologists pursue qualitative research based on in-depth fieldwork that involves participant observation of everyday life. In doing this work, which is often longitudinal, anthropologists have to pay careful attention to research ethics and to questions of representation—how we portray the people and topics we explore. Anthropologists also need to think critically about the production of knowledge, how it gets circulated and who listens. I offer that these questions of representation should inform medical practice as well.

Engaged or Public Anthropology

The kind of anthropology that most animates my work is public or engaged anthropology because it “addresses public problems in public ways” [9]—issues like war and global health disparities, with an activist or transformative stance. [10,11,12] This anthropology is rooted in a politics of accountability and practices engaged listening and witnessing. As Veena Das reminds us, “the body of the anthropological text…refuses complicity with violence by opening itself to the pain of the other.” [13] However, as anthropologist Asale Angel-Ajani rightly asks about witnessing and “opening” oneself to the pain of the other, “What and for whom does this form of observation advocate, and who benefits from this mode of engagement?” [14] Pushing it further, I urge us to question the politics or narratives of suffering. What violence does this produce as people are asked to tell their story again and again? What value is produced when a woman survivor of war and suffering mother tells her story repeatedly to different outlets? There are direct implications for practitioners here. How many times do youth and their kin have to tell their clinical story?

Medical Anthropology

To do this work, anthropologists have to be attentive to their own politics of location, how our positionality or “situated knowledge” informs the very questions that we ask. [15,16] Thus, my comments are positioned not only through my longitudinal engagement with the Salvadoran Diaspora but also through my unexpected entrance into the “pediatric rare disease community” and the practices of caregiving that this engendered.

Contributions from medical anthropology proved invaluable for me because of the field’s cogent analysis and critiques of biomedicine, of social authority, of the cultural construction of disease, and of the ways institutional practices often have unintended consequences. Significantly, medical anthropology clearly demonstrates how science is not culture-free. Science is cultural. Here too, what I have learned juxtaposes assumptions around suffering with that hard won fight to ensure a dignified life, one that often defies quality of life indicators.

There are multiple groundbreaking approaches within medical anthropology. Arthur Kleinman’s foundational, The Illness Narratives, redefined the field as it distinguished between the categories of illness and disease. For Kleinman, “Illness refers to how the sick person and the members of the family or wider social network perceive, live with, and respond to symptoms and disability.” [17] This is the “lived experience of monitoring bodily processes” [17⁴], which is always culturally shaped. In contrast, “disease” is “what the practitioner creates in the recasting of illness in terms of theories of disorder.” [17⁵] This category is also cultural but shaped by the practice, logic, and project of medicine. Significantly, Kleinman theorizes that in this process of “recasting,” something tremendous is lost and that is lived experience.

Social Suffering and Structural Violence

From here Kleinman has been a leader in developing the concept of social suffering which he defines as involving a series of components that move beyond the individual body. In this theory he examines the ways in which pain and suffering are rooted in socioeconomic and sociopolitical forces and how “social institutions, such as health-care bureaucracies, that are developed to respond to suffering can make suffering worse.” Significantly, Kleinman theorizes that social suffering is precisely that, social, and moves beyond the individual in pain. This provides a framework that entwines health and social realms. [18]

Key to this work is the relationship between suffering and structural violence. As the physician and anthropologist Paul Farmer illuminates throughout his large body of work, “‘structural violence’ is one way of describing social arrangements that put individuals and populations in harm’s way. The arrangements are structural because they are embedded in the political and economic organization of our social world; they are violent because they cause injury to people (typically, not those responsible for perpetuating such inequalities). With few exceptions, clinicians are not trained to understand such social forces, nor are we trained to alter them. Yet it has long been clear that many medical and public health interventions will fail if we are unable to understand the social determinants of disease.” [19]

Ethnographic examples abound, from Nancy Scheper-Hughes’ field changing text, Death Without Weeping, which offers a nuanced reading of selective maternal neglect in contexts of extreme poverty, to Paul Farmer’s ethnographic volumes that remind us of the dangers of reducing difference, poverty, illness, violence, and injustice into cultural terms. This depoliticizes inequalities in the name of risk behaviors and ‘cultural obstacles,’ conflates structural violence and cultural difference, which often produces an exaggeration of human agency. [11] Larger forces, long in the making, root suffering. And so, generations of medical anthropologists have pursued cross-cultural work that moves from subjectivities to structural violence and that addresses institutionalized racism and problematizes the rush of the technocratic fix.

Anthropology of Childhood

If anthropologists João Biehl and Adriana Petryna are correct that we should consider “ethnography as an early warning system [because] [p]eople on the ground recognize what’s troubling them” [20], I would urge us to also consider the important work that historicizes the very category of childhood. Children and adolescents are the makers of history and society and are still too often ignored in this “early warning system.” Medical anthropologists have been leaders in this work, evidenced in Myra Bluebond Langner’s groundbreaking research on compromised childhoods. [21] Carolyn Rouse’s ethnography on racial disparities and sickle cell disease unmasks the moral frameworks and cultural assumptions about pain and suffering and the politics of racism that create health inequalities. [22] Hers is an account that asks bigger questions around, for example, why it is that the self-reported pain of cancer patients is valued and attended to while the self-assessments by African American teen patients with sickle cell disease are devalued. These are obviously not only philosophical questions. She analyzes the violent ways in which treatment paradigms ultimately shape patients and their access to care.

Concluding Thoughts

Cultural anthropology, medical anthropology, and the anthropology of childhood can provide us with ways to unpack what we mean by “suffering” through an attention to lived experience in the everyday, across contexts, and within larger systems of power. This pushes us to question our normative and naturalized assumptions about which bodies suffer, how, and for whom. Indeed, it puts in question who’s suffering counts and why? Finally, if we are going to talk about suffering, I suggest that we must also read it against that search for a dignified life.

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Panel Commentary III: Daniel K Silber, PhD

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Thank you for some wonderful teaching, and for encouraging us to build on your medical narrative from our disciplines’ perspectives. As a philosopher, I will share a few thoughts.

A number of contemporary thinkers have written about the importance, perhaps the supreme importance, of the human empathetic response to the suffering of fellow persons. Emmanuel Levinas writes, “For pure suffering, which is, intrinsically meaningless and condemned to itself without exit, a beyond takes shape in the inter-human.” [23] In other words, as Stan Van Hooft helpfully glosses this profound but somewhat obscure pronouncement, my help to the other in his or her suffering is “a recognition of that person’s being,” a recognition that takes place concretely and not theoretically, and that enables suffering to have “a meaning in the interhuman world that preserves its inherent negativity: it grounds the ethical.” [24]

Suffering, which connects the suffering person to those caring for him or her, establishes a concrete demand on the person providing the care, in effect, creating an ethical relationship between them that is of extreme importance regardless of the fact that suffering in itself has no value at all. In a similar vein is the thought of Viktor Frankl, survivor of Auschwitz and founder of logotherapy, who stressed the search for meaning in life as the overriding imperative of human existence. [25] Frankl himself saw the meaning of his own life as consisting in helping others find the meaning of their lives

The ethic of suffering sketched here is not a transcendent ethic except insofar as each of us is transcendent relative to another person. This ethic does not seek to find a metanarrative justification for suffering. Nor does it seek to end suffering through nirvana or by otherwise denying the self and its desires. Rather, it seeks to answer suffering immanently through the self-regarding avowal of one’s own value as a person, that is, as a purposive being, a narrative and self-narrating goal-directed self, and the other-regarding avowal through respect, care, and compassion of the equal worth of one’s fellow persons.

 In the health care context, where human suffering is so pervasive, it is to be hoped that health care practitioners will continue to encourage each other to attend to the suffering of their patients as persons, not just to the pains and diseases of their bodies, and that they will continue to develop and refine their approaches to the relief of suffering in the most respectful, caring, and humane ways that the practice of their profession makes possible.

Conceptual Considerations on Suffering

Philosophical perspectives on suffering are very varied, but most if not all, seek to understand the phenomenon of suffering and possibly to evaluate suffering in terms of its broader conceptual connections to other elements of a philosophical worldview. Starting with Eric J. Cassell’s thesis that suffering, as distinct from purely physical pain, afflicts persons, not only bodies, we seek to articulate an account of suffering in terms of how suffering threatens to destroy the integrity of persons. Cassell writes that “Suffering is experienced by persons, not merely by bodies” and that “[t]he source of suffering is the threat to the intactness of the person as a complex social and psychological entity.” [26] If suffering is this type of threat, then understanding its nature as well as its role within the life of human persons is essential to a philosophical account of it.

Let’s start, then, with an account of what a person is and what it is for a person to be intact. Theories of personhood vary, but common ground may be found in thinking of the intact person as a dynamic psycho-social-physical whole. Such wholes may be understood as organic unities, that is, unities that are not divisible into their parts without destroying the unity altogether. (It isn’t possible, say, to divide the psychological aspect of the person from the physical aspect without destroying the person.)

As dynamic organic unities, persons have the character of bringing potentiality to actuality, of harnessing their internal being in pursuit of one or more goals. This understanding of the person suggests that persons may be understood as what the philosopher Aristotle called “entelechies” (from the Greek entelekheia: being in a state (ekhein) of having one’s goal(s) (telos) within (en) oneself). An entelechy is “that which makes actual what is otherwise merely potential” or the “vital principle that guides the development and functioning of an organism or other system or organization.” [27] Persons, as goal-oriented organic unities, may then be conceptualized as such entelechies as well.

Aristotle’s conception of goals was normative, not merely descriptive, in that he saw the natural goals of different beings, including human persons, as constituting their good. Aristotle saw all entelechies as natural. Humans are like oaks; just as the acorn has the oak tree as its natural destiny, so human beings have happiness (eudaimonia)—i.e., rational activity of the soul—as our “natural” destiny (albeit one that is more frequently thwarted than achieved). [28] While we do not necessarily follow Aristotle in holding that there is a unique, naturally given good for human beings, it nevertheless seems plausible to characterize the plurality of goals persons seek as goods from their point of view.

 In many cases these goods will not be grounded in a natural order but, rather, more or less consciously selected or even constructed by individual persons based on a combination of factors, including their individual dispositions, their socio-cultural-environmental context, or some combination of these. Understanding the threat of suffering, thus involves understanding the structure of the goals and goods of persons.

Even if we reject a strict Aristotelian naturalist account of the good for persons and embrace a more pluralistic and contingent view, a philosophical account of suffering will still seek to articulate general truths about the nature of the good. Some philosophers, notably ancient hedonists such as Epicurus and modern Utilitarians such as Jeremy Bentham and John Stuart Mill, have held that pleasure is the highest, or perhaps ultimately even the only good for human beings. [29,30,31] Hedonistic thinkers have sometimes advanced arguments seeking to show that other goods are always reducible or otherwise analyzable in terms of the pleasure they afford those who achieve them.

There are numerous counter arguments against this hedonistic claim. An especially influential recent argument, which makes reference to the virtual reality produced by an “experience machine,” appears in Robert Nozick’s Anarchy, State and Utopia. [32] Nozick asks the reader to imagine an experience machine capable of producing far more pleasure for the person hooked up to it than that person would experience in the ordinary course of life. He asks whether, given the choice, one would decide to go on living in the real world or opt for living the rest of one’s life in the experience machine. Most people who reflect on the scenario believe living in the real world preferable to living in the experience machine, regardless of the latter’s capacity to produce a much higher amount of pleasure overall. Nozick takes this to show that most of us, upon reflection, do not see pleasure as the highest good, and that we therefore reject hedonism. It seems more plausible to hold that pleasure is a good, but not necessarily the highest (let alone only) good for persons.

Rather than a hedonistic construal of the good for persons, we propose a view according to which human persons find value and meaning in life not merely by passively experiencing pleasurable thoughts or sensations but through acting so as to achieve the purposes that seem good to them. As psycho-social-physical organic unities, we naturally seek to continue in our being and the extension of our powers. We interpret ourselves as beings who are psychologically continuous with earlier stages of ourselves and seek a unity across time, i.e., a narrative or story about ourselves. We are biographical and historical beings as much as we are beings who seek and experience pleasure. In quasi-Aristotelian terms, we are narrative and self-narrating entelechies. [33]

Insofar as a person’s being has a narrative, story-like structure, it is vulnerable to interruption, assault, and premature ending. Suffering, in all of its many forms, involves such comprehensive interference with, violation of, or oppression against one’s life and the meaning and value one gives it through the pursuit of goals one sees as goods. Characterized in this way, suffering is one of the great evils in human life, perhaps even the greatest evil. And yet it is pervasive. Arguably the very fact of death as the ultimate, inescapable destiny of each person’s life constitutes an overarching context of suffering for each of us, for, regardless which of the goods we may achieve in life, our enjoyment of them will be temporary, lost forever (one thinks) when each of us sinks into death’s oblivion.

Given the pervasiveness of suffering as a threat to persons and the inevitability of death itself, which seemingly amounts to the final destruction of the person, philosophical and religious traditions have sought to find some meaning, purpose or value in suffering itself. For instance, historically influential strains of the Abrahamic religions (Judaism, Christianity, and Islam) have sought a transcendent meaning or purpose in suffering itself, e.g., by having the suffering of this world redeemed by an omnipotent God who graciously effects the salvation of humanity. [34,35,36]

 In historically influential forms of Christianity, it is God’s sacrifice through Jesus’s crucifixion and resurrection that enables the redemption of human suffering in the kingdom of God. Influential strands of Hinduism too seek to justify or redeem human suffering by appealing to a cosmic law of karma according to which current suffering is the causal result of misdeeds from previous lives. [37] In these and other ways, religious and philosophical traditions have sometimes sought to make sense of suffering and even to valorize it at least as a positive means to the fulfillment of a grand metanarrative.

However, there are countervailing philosophical and religious traditions that do not see value in suffering either in itself or as a means to an end. For example, the Theravada Buddhist tradition, grounded in the teachings of Siddartha Gautama, sees life itself as most fundamentally characterized by suffering (dukkha), a state of being that is intrinsically bad and undesirable. [38] Rather than seeking a transcendent meaning in suffering, the early Buddhist teachings involved a path of transcendent escape from suffering: by following the Buddha’s noble Eightfold Path, one could eventually quell the desire (tanha) that is at the root of suffering and achieve spiritual liberation from it—the egoless reality of nirvana. In the Western philosophical tradition, it is the nineteenth-century German thinker Arthur Schopenhauer who most famously advocated a variant of the Buddhist denial of desire as the best hope for minimizing (but never wholly eliminating) the reality of suffering. [39]

A third approach to the problem of suffering may be distinguished that does not fully agree with either metanarratives that embrace the transcendent value of suffering or those that seek a transcendent escape from it. Rather than embracing either metanarrative of transcendence, there is possible a more limited perspective that remains agnostic as to the metaphysics or ontology of suffering, while, at the same time, affirming that each of us can engage with others to find meaning in the suffering that impedes our lives. I go back to Viktor Frankl, the survivor of Auschwitz, who, in our quasi-Aristotelian terms, was a person (narrative entelechy) who interpreted his own life story in terms of his quest to achieve goals he took as good and who embraced as one of the most important goods in his own life the mission to help other people (fellow narrative entelechies) articulate the goals they embraced as goods. [40]

Although not a theoretical “solution” purporting to make sense of suffering in terms of a larger whole, the limited approach returns to the perspective of the person him or herself, the narrative entelechy with its own explicitly or implicitly chosen goals and goods. While agnostic about the metaphysical value or disvalue of suffering, this approach stresses the importance of responding to the suffering of persons by respecting their goods as they understand them and caring empathetically for them as they suffer the thwarting and destruction of those goods.

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This work is licensed under a Creative Commons Attribution-NonCommercial-ShareAlike 4.0 International License.

The authors have disclosed no conflicts of interest.

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Affiliations

Tomas J Silber, MD, MASS
Professor Emeritus of Pediatrics, George Washington University
Division of Adolescent and Young Adult Medicine
Children’s National Hospital
Editor-in-Chief
Pediatric Ethicscope The Journal of Pediatric Bioethics

Ariel K Silber, PhD
Crisis Intervention Specialist
Emergency Services and Mobile Crisis Unit
Fairfax-Falls Church Community Services Board
Fairfax, VA

Irina C Silber, PhD
Professor of Anthropology
Chair, Department of Anthropology
Gender Studies, and International Studies,
The City College of New York(CUNY)
New York, NY

Daniel K Silber, PhD
Professor of Philosophy
Provost and Vice-President for Academic Affairs
Piedmont College
Demorest, GA

Correspondence

Tomas J Silber, MD, MASS
Professor Emeritus of Pediatrics, George Washington University
Division of Adolescent and Young Adult Medicine
Children’s National Hospital
Editor Emeritus,
Pediatric Ethicscope The Journal of Pediatric Bioethics

White Space

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Endnotes

1. Cassel E. The nature of suffering and goals of medicine. The New England Journal of Medicine. 1982 Mar 18;306(11):639-45. doi: 10.1056/NEJM198203183061104.
2. Halpern J. From Detached Concern to Empathy: Humanizing Medical Practice. Oxford University Press; 2001.
3. Simpson EA, Murray L, Paukner, Ferrari PF.  The mirror neuron system as revealed through neonatal imitation:  presence from birth, predictive power and evidence of plasticity. Philos Trans Soc Lond B Biol Sci. 2014 Jun 5; 369(1644):20130289. DOI: 10.1098/rstb.2013.0289.
4. Riess H. Empathy in medicine—A Neurobiological Perspective. JAMA. 2010;304(14):1604-1605. doi:10.1001/jama.2010.1455
5. Severion SK, Friedman R, Moore P. The dying patient: physician’s suffering. Routledge; 1986. ISBN: 9781315826202
6. Titchner EB. Introspection and empathy (1909). Dialogues in Philosophy, Mental and Neuro Sciences 2014;7 (1) 25-30.
7. Larson EB, Yao X. Clinical empathy as emotional labor in the patient-physician relationship. JAMA 2005; 293 (9) 1100-6.
8. Silber, Irina Carlota. Everyday Revolutionaries: Gender, Violence, and Disillusionment in Postwar El Salvador. New Brunswick, NJ: Rutgers University Press; 2011.
9. Center for a Public Anthropology. http://www. publicanthropology.org/about/
10. Bourgois P, Schonberg J. Righteous Dopefiend. Berkeley: University of California Press; 2009
11. Farmer P. Infections and Inequalities: The Modern Plagues. Berkeley: University of California Press; 1999.
12. Sanford, Victoria. 2003. Buried Secrets: Truth and Human Rights in Guatemala. New York: Palgrave Macmillan.
13. Das V. Life and Words: Violence and the Descent into the Ordinary. Berkeley: University of California Press.; 2007: 211.
14. Angel-Ajani, A. Expert witness: notes toward revisiting the politics of listening. In: Engaged Observer: Anthropology, Advocacy, and Activism, ed. Sanford V, Angel-Ajani A, eds, 76–89. New Brunswick, NJ: Rutgers University Press; 2006: 80.
15. Haraway D. Situated knowledges: the science question in feminism and the privilege of partial perspective. Feminist Studies. 1998; 14(3): 575-599
16. Narayan K. How native is a “Native” anthropologist? American Anthropologist. 1993; 95 (3): 671–686.
17. Kleinman A. The Illness Narratives: Suffering, Healing, and the Human Condition. New York: Basic Books; 1998:3.
18. Kleinman A. The art of medicine: four social theories for global health. The Lancet. 2010; 375: 1519.
19. Farmer PE, Nizeye B, Stulac S, Keshavjee S. Structural violence and clinical medicine.” PLoS Med 2006;3(10): 1686-87. DOI: 10.1371/journal.pmed.0030449.
20. Biehl JG, Petryna P. When People Come First: Critical Studies in Global Health. Princeton: Princeton University Press; 2013:18.
21. Bluebond-Langner M. In the Shadow of Illness. Princeton: Princeton University Press; 1996.
22. Rouse CM. Uncertain Suffering: Racial Health Care Disparities and Sickle Cell Disease. Berkeley: University of California Press; 2009.
23. Levinas, E. The Provocation of Levinas: Rethinking the Other, ed. R. Bernasconi and D. Wood. Routledge; 1988: 159.
24. Van Hooft, S. The Meanings of Suffering. Hastings Center Report. 1998 Sep/Oct 28 (5): 13.
25. Frankl, V. Man’s Search for Meaning: An Introduction to Logotherapy, 4^th edition. Beacon; 1959: 104. Frankl here writes that logotherapy “focuses on the meaning of human existence as well as on man’s search for such a meaning. According to logotherapy, this striving to find a meaning in one’s life is the primary motivational force in man.”
26. Cassell, E. The Nature of Suffering and the Goals of Medicine. The New England Journal of Medicine. 1982 March 18; 306 (11): 639-645.
27. Aristotle. Metaphysics. Book Theta. Trans. S. Makin. Clarendon Press; 2006.
28. Aristotle. Aristotle’s Nicomachean Ethics. Hackett Publishing; 1985. See especially Book I.
29. Epicurus. The Essential Epicurus. Interactive Media: 2014
30. Bentham, J. An Introduction to the Principles of Morals and Legislation. T. Payne & Son; 1789. Version presented by Jonathan Bennett at earlymoderntexts.com.  See especially chapter 1. www.earlymoderntexts.com/assets/pdfs/bentham1780.pdf.
31. Mill, J.S. Utilitarianism. Longmans, Green & Company; 1863. Project Gutenberg; 2004.  See especially chapters I and IV. www.gutenberg.org/files/11224/11224-h/11224-h.htm.
32. Nozick, R. Anarchy, State, and Utopia. Basic Books: 1974: 42-45.
33. The study of the narrative construction of self and social reality is developed in the field of narrative psychology, which explores the “storied nature” of human behavior. See, for example: Sarbin, T. Narrative Psychology: The Storied Nature of Human Conduct. Praeger; 1986 and McAdams, D.P. The Stories We Live By: Personal Myths and the Making of the Self. Guilford; 1993.
34. Multiple sources exemplify the theme of the redemption of suffering by God in Judaism, Christianity and Islam, often in the context of a test of faith, and sometimes with reference to a promised resurrection. See, for example, passages from the Hebrew Bible, New Testament, and Quran: Alter, R. The Hebrew Bible: A Translation with Commentary. W.W. Norton and Company; 2018: especially Exodus 1-3, Isaiah 43:2, 53:3, Job, Psalm 34:19, 119:71.
35. Hart, D.B. The New Testament: A Translation. Yale University Press; 2018: especially Matthew 5:10-12, John 16:33, 2 Corinthians 4:17, Colossians 1:24, Hebrews 2:10, James 1:12, 1 Peter 4:1, 5:10.
36. Nasr, S.H., Dagli, C.K., and Dakake, M.M. The Study Quran: A New Translation and Commentary. HarperOne; 2015: especially 2:155, 21:83-84, 38:41-44, 67:2, and 89:16.
37. Karma and reincarnation are introduced explicitly in the Upanishads, which date from approximately 800-300 BCE. See especially Prasad, M. N. Chandogya Upanishad: Translation and Commentary. D.K. Printworld; 2006.
38. Bodhi, B. The Connected Discourses of the Buddha: A New Translation of the Samyutta Nikaya. Wisdom Publications; 2005: SN 56.11. The key doctrine in Buddhism regarding the nature of life as suffering (dukkha) is stated in the Four Noble Truths. A classic statement is found in the Dhammacakkappavattana Sutta (“Setting in Motion the Wheel of Truth), the Buddha’s first teaching at Varanasi, which is included in the Sutta Pitaka, part of the Pali Buddhist canon, the Tripitaka.
39. Abelsen, P. Schopenhauer and Buddhism. Philosophy East & West. 1993 April 43 (2): 255-278.
40. Winslade, W. Afterword to Man’s Search for Meaning, 5^th edition. Beacon; 2006: 164-65. Frankl once gave a lecture at a university and did an exercise with his class in which he posed a question and requested an answer to be submitted on a single piece of paper. The question was “What do you think the purpose of my life is?” The answers were submitted, and he read one aloud, which said, “The purpose of your life is to help others find meaning in theirs.” Frankl responded, “That is exactly my answer.”