Cassell’s medical humanism
The work The Nature of Suffering and the Goals of Medicine was first published in 1982 and has had considerable influence on the ensuing debate regarding the medical conceptualization and management of suffering and pain. In fact, this debate has not yet ended [24,25,26]. This work can be classified among the theoretical works of the “humanistic turn” in medicine. Cassell criticizes clinical, evidence-based medicine, its dependence on Cartesian dualism, its conceptualization of pain and suffering, its management of them, as well as the goals of medicine. He criticizes exactly those characteristics of medicine which transformed it into a science in the first place, that is, the abstraction processes mentioned above, the fact that “doctors are trained to focus on diseases and to keep their similarities in mind, not their differences”, and that “the diagnostic methods are designed to see the same thing in each case of a disease” [3]. For him, the anachronistic division between body and non-body, and the focus on the cure of bodily disease, leads medicine to do things which cause the “patient as a person” to suffer. In other words, it not only treats pain inadequately (understanding and treating it only in relation to its measurable, observable and generalizable signs, in the context of a disease) but it also produces suffering, which persists undiagnosed and unrelieved, as is the case in the terminal phase of a chronic disease, which is progressively lengthened due to the availability of new treatments. In contrast, Cassell’s conceptualization of pain and suffering emphasizes their meaningful dimensions and the negative consequences of abstracting the pain from the person in pain. It takes into consideration that it is always an individual who feels pain or suffering, and that such experiences are modeled and strongly determined by personal assumptions, cultural patterns, cognitive activities and even religious beliefs.
Cassell defines pain not only as a sensation, but also “as an experience embedded in beliefs about causes and diseases and their consequences”, and suffering as “the state of severe distress associated with events that threaten the intactness of person”. Both pain and suffering are considered to have physical and psychological dimensions, and in this sense, it is true that Cassell avoids the classical association between pain and body, suffering and mind.Footnote 5 His definition of pain is in line with the definition offered at the beginning of this article: Pain is a phenomenon which includes both nociception – “the mechanism involved in receiving painful stimuli” – and the subsequent attachment of meaning to such sensation. He recognizes the universality of nociception (“certain kinds of stimuli elicit the sensory response of nociception in every culture, now and forever”), but does not consider pain to be the same as nociception; for him, pain includes the meaning which the subjects ascribe to nociception, and such meaning changes from culture to culture, from person to person.
According to Cassell, suffering starts when “the sick person will believe that his or her intactness as a person is in danger”. So pain does not necessarily entail suffering, and suffering (a threat against the “intactness of a person”) can be caused by other experiences. Cassell proposes that medicine should be more sensitive to the person and the meanings he or she attributes to his or her pain/illness, and that it should specifically treat suffering, thus involving particular “subjective resources” like “feelings, intuition, and even the input of their senses” in order to deal with the suffering of patients. Other authors have also emphasized the importance of particular capacities such as sensitivity and empathy in a physician [27], developing an “affective mode of understanding” [25] in the context of trying to humanize medicine. But Cassell also thinks that it is possible to develop a methodology which is able to turn the subjective dimensions of pain and suffering into transmissible information that physicians can use in order to develop more holistic treatments (not only designed to cure a disease, but to palliate the suffering of the ill person). In this manner, the goals of medicine ought to be reformulated.
However, at least two problems arise from Cassell’s conceptualization of suffering. The first one is that his definition of suffering depends on a questionable understanding of the person and it is too restrictive. Defining suffering as a threat against the “intactness” of a person entails an assumption of what an “intact” person is. Cassell’s normative definition of “person” includes a number of dimensions like their perceived future, personality and character, body, past experiences and memories, cultural background, behavior, relations with others, a political dimension and a secret life [3]. This “intact” person would have developed a kind of equilibrium, or coherence and integrity, among all these dimensions.
Svenaeus [24] recognizes this difficulty inherent to Cassell’s proposal, the problem of thinking of “the person as a kind of whole” (or how it is possible to formulate a kind of integrity among all these dimensions), and offers an alternative: understanding life as a narrative and “stressing the experiential dimension, the holding together of states of consciousness making up the self”. However, the narrative explanations of the continuity of the self and life can be criticized, too. Although human beings have narrative experiences and dimensions, neither the selves nor life are completely and definitely unified by a single narrative. The stories we tell ourselves about our own experiences are certainly important resources which we use to relate to ourselves, to develop our selves. But such stories are not the only resource we use for such purposes. For example, we also engage in dialogue with our selves – the process of thinking has been defined as a kind of inner dialogue [28] – and a dialogue is not a story. Moreover, such inner stories are always pluralistic: They interpret our past experiences in the light of present interests or experiences. Hence we do not tell ourselves the same story about our past during our whole life, simply because our past changes every day as we gain new experiences which can easily modify the interpretations of previous experiences, and we need/want to understand our past differently according to our present and our prospects. Much more malleable and uncertain are our stories about the future: The future is unknown territory that slowly becomes present and then past, surprising us again and again.
In parallel, life is not “a narrative”, one single narrative from birth to death [29]. Different versions and interpretations about the life of a person are continuously written from different points of view; there is never a definitive history. Stories about life are always fragmentary, partial, and they cannot be told but from a certain perspective, depending on the intended emphasis. They do not guarantee the wholeness among our several dimensions.
Thus, the narrative explanation of the “wholeness” of the person does not support Cassell’s definition of “person”. Indeed, such a definition is a non-existent ideal which incorporates the idea that persons are transparent for themselves (they know themselves completely), coherent, able to design a kind of unique personal past and future story, and well balanced. This definition is far from being up to date regarding the contemporary theories of the self. Albrecht Wellmer [30] mentions two crucial contributions that contradict Cassell’s definition. Freudian psychoanalysis challenges the idea of an autonomous subject: Human beings do not always know exactly and completely what they want, what they do or why they do it, since they are influenced by psychological, social and power-relations forces. Wittgenstein and the philosophy of language challenge the idea that the subjects are the last authors and judges of what they say. Our meaningful expressions are not completely transparent to ourselves. Moreover, postmodern theories emphasize the contradictions among various social roles of the same person [31], our irrational dimension, our contingent nature and the fact that our actions are not predictable (even by ourselves). A person is never fully coherent, a person cannot be “intact” because touching and being touched is intrinsic to life. It may still be possible to define suffering as a threat to what a person considers to be his integrity at any given moment. However, this is an essential definition of suffering, which is too far-reaching and causes problems when trying to determine the boundaries of what is and is not suffering. Suffering can be experienced in different ways, not necessarily as a threat against one’s integrity, as I will show later. So this definition is unable to properly identify what is common to all experiences of suffering. Moreover, suffering has been seen and is often used to enhance identity (as in the case of the deliberate search for suffering, like self-inflicting pain, and other risky behavior). This stands in direct opposition to Cassell’s definition because seeking out suffering (or using non-deliberate suffering) is used to build or enhance identity, to affirm the self or to identify oneself with certain values like strength or courage.
The second problem of Cassell’s definition of suffering is discussed by Braude [25]: The experience of suffering may have a truly subjective element that cannot be explicitly communicated through language and “can and should never ultimately become an object, medical or otherwise”. Medicine can pay more attention to the aforementioned subjective, symbolic dimensions of suffering and pain, physicians can be trained to be more empathetic towards ill persons and more sensitive to their real needs. This “humanized medicine” provides a better management of pain and suffering, and it should reconsider its ultimate goals. However, the question remains whether suffering can really be treated solely by medicine and with purely scientific methods, considering this ultimately incommunicable dimension, the fact that not all kinds of suffering are related to pain or disease, and the existential dimension of suffering, which includes personal choices related to the attachment of the person to life and the world. Medicine does indeed have its limits.
The phenomenological approach
The phenomenological conceptualization of suffering and pain offers an attractive alternative to dualistic theories and the mechanical understanding of the body.Footnote 6 Contrary to the scientific approach, in which the body is seen from a third-person perspective, phenomenological proposals assume the perspective of the experience lived by a subject [32, 33]. This is a kind of first-person perspective that aims to be meaningful and relevant to others. A good phenomenological approach is not merely a subjective narrative of a personal experience, but is able to capture crucial elements of such an experience which are useful as meaningful resources for other persons trying to understand similar experiences.
A very good example of such a perspective can be found in Jean-Luc Nancy’s text L’Intrus, in which he aims to understand his own “lived experience” of heart transplantation, the associated severe medical treatments and their acute secondary effects, like lymphoma, philosophically and phenomenologically [34]. Nancy conceptualizes his experience not merely by telling his story, but by understanding it theoretically through the use of the concept of the “intrus” (intruder) and the idea of “intrusion” to understand the experience of receiving a new organ, its rejection by his immune system, of being treated “medically” (measured, tested, monitored), and finally the cancer and the subsequent treatments. His described strangeness of himself and his experience of liminality are far from unique, and his reflection about the moral consequences of organ transplantation and the increasing technological and scientific medical options all raise important points for further debate. In short, phenomenology is not merely subjective (although it incorporates personal experience) and good phenomenological approaches are powerful philosophical tools. Inasmuch as they are able to incorporate the first-person perspective, the “lived experience”, they possess a high potential for studying suffering and pain from a perspective which is not purely scientific or medical in nature.
With notions like “embodiment” and “living body” – the English translation of the German term “Leib”, in opposition to the “Körper” or “physical body” [11] – phenomenologists have contributed to “embodying the mind” by emphasizing the crucial role of the body in human experience and by assuming that we experience the world through our living bodies [32]. This assumption entails different consequences for the understanding of pain and suffering, such as the idea that if we are in pain or we suffer, we feel this displeasure in our bodies, thus influencing partially or totally how we experience the world. A transparent, silent or even an “absent” body [32] can become painfully present, so we experience the world from this painful perspective.Footnote 7
Phenomenological approaches have contributed to “minding the body” too, as is the case with the phenomenological explanation of the “placebo effect”, one of the phenomena which challenge classical explanations of medical science. Frenkel [35] formulates this challenge as follows: “How could a private subjective expectancy associated with taking a placebo pill ever manifest as an observable, public change in the physiologic body?” The placebo effect particularly challenges the mind/body distinction and the consideration of the body as a mere “measurable object.” The explanation offered by Frenkel is convincing: The body itself is able to respond meaningfully to a demanding situation, since “we have a sentient body, capable of responding to the world without having to invoke any reflexive activity.” It is even possible to go one step further: If we conceive a person as a psycho-physical whole, it is not implausible to think of the body reacting in meaningful ways, that “a patient perceives affordances of healing in a particular situation and his body thus responds to the solicitation made upon it in the same way that our unreflective motor activity unfolds in the world.” Cultural, social and psychological factors are believed to affect the affordances (solicitations of response for a subject in a particular situation) of healing.
As already mentioned, Svenaeus [24] has combined phenomenological tendencies with narrative conceptions of personal identity in order to conceptualize pain and suffering. He puts together different definitions of suffering provided by other authors in an attempt to encapsulate “the whole of suffering.” However, uniting these different approaches to suffering does not guarantee a good definition of suffering, Instead, it guarantees a good overview of the studies or conceptualizations of suffering. A good definition should be general enough to include all instances of suffering. This does not mean that particular descriptions of cases of suffering are not useful or meaningful to other sufferers, scientists and simply persons interested in understand the phenomenon of suffering. To put it in other words, the alienation of the self described by Nancy can capture one essential dimension of one kind of suffering, but it does not define all kinds of suffering. Definitions of suffering as a threat against an “intact person”, as an alienation of the self, as an “alienated mood” or “unhomelike being in the world” [33] express different experiences of suffering, but these are not universal descriptions, so they are not good definitions. As Kleinman states, “It is important to avoid essentializing, naturalizing, or sentimentalizing suffering. There is no single way to suffer; there is no timeless or spaceless universal shape to suffering.” [7].
Losing the self or finding the self?
As stated before, it is still a challenge for medicine to deal with these subjective, unmeasurable dimensions of suffering and pain – and, moreover, their possible “unshareability” [6], although there have been crucial contributions like the Gate Control Theory, which has been decisive in including both the physiological and the psychological dimensions of pain as intrinsic parts of the phenomenon. Still, pain and suffering do not only concern medicine, but also the social sciences and humanities, which contribute substantially to the clarification of their cultural, social and cognitive dimensions. If we attach importance to these dimensions in the experiences of pain and suffering, then we need to recognize the relevant role which said disciplines can play in making sense of them as well as in the provision of resources to relieve suffering. This ties back to the previous statement of medicine having its limits: There are types and dimensions of suffering whose management does not concern medicine (or at least, not exclusively). For instance, we cannot manage social problems that cause social suffering, like poverty, with medical resources. But as stated above, this does not mean that medicine cannot improve its management of pain and suffering: On the contrary, efforts to do so are already being made, even though a complete revolution will require truly overcoming the classical mind/body dichotomy.Footnote 8 A real, coherent assumption of the person as a psychophysical instead of a dualistic being demands not only partial reforms in dealing with suffering and pain, but a total paradigm shift in the sense of Kuhn [36].Footnote 9 In the meantime, interdisciplinary approaches are being put into practice; for example, the treatment of chronic pain in the long term now incorporates conductist therapies to manage its emotional and cognitive consequences [37, 38], or the treatment of non-somatic pain (for example, fibromyalgia) is now supported by psychotherapy [39].
The alienation (or even “loss”) of the self or the “unhomelike being in the world” can undoubtedly be consequences or expressions of suffering. Kathy Charmaz [40] describes the “loss of the self” in chronically ill persons and contributes to the understanding of suffering as not limited to a mere “physical discomfort.” In his recent, posthumous novel Paris-Austerlitz, the writer Rafael Chirbes describes the last phase of a man’s mortal illness in the following words:
“Rather, I had the impression that the man lying there wasting away became a stranger in both my eyes and his own – someone unknown to me, of course, but also to himself, and so Michel himself expressed it to me on days when he experienced a moment of lucidity. [...] Michel was being extinguished, fading just the same as each day of my visit, the dim light of the winter afternoon was fading in the frame of the hospital window.”Footnote 10 [41].
Like Nancy, Michel cannot recognize himself anymore, and neither can his friend. For Svenaeus, suffering alienates us from our own body, from our engagements in the world with others, and from our life values [24]. “Alienating” means “making alien”, thus suffering is found to be equivalent to the feeling of being strangers to ourselves, to others, or to fitting into the world in an strange way – and it can impede us in living the lives we wanted. The alienation of the world can also be categorized as “unhomelike” in a way similar to Arendt’s concept: “Unhomelike being in the world” means that we exist in an uncomfortable way, in a strange, uneasy environment where we cannot rest or find our place [42].
These various contributions to understanding different experiences of suffering have not necessarily been proposed as essential definitions of suffering. For example, Charmaz’s work assumes a clearly situated perspective; she analyzes “a fundamental form of suffering” of chronically ill persons in America in the 1980s [40] However, there does exist a risk in taking such descriptions of suffering as universal, essential definitions, since doing so may have undesirable epistemological and moral consequences.
The idea of an “alienated self” presupposes the idea of a kind of “authentic self” with an “authentic life story”. Suffering can alienate us from our previous concerns and can even displace us into a state of liminality, where we do not feel at home in the world or in our bodies as we once used to. However, as stated previously, these are not definitive consequences of suffering, and persons are not static, unchangeable beings. Alongside the possible “loss of the self” exists the possibility of “reconstructing the self” (we were not our “definitive self” before “losing ourselves” due to suffering and we cannot recover something like a “definitive self”). Instead, we are the result of our experiences, including suffering and pain.
The proof that essentialist definitions of suffering do not hold is that two contradictory answers to the problems of pain and suffering can be equally valid and useful to managing them: the struggle to differentiate oneself from one’s pain, suffering, or illness, and the identification with one’s own pain, suffering or illness [11]. One of Stonington’s patients surprised him by saying, “I want to be here for this, even for the pain. Not really being here would make me suffer” [43]. The pain of childbirth has been claimed by women as an element of self-construction for their own identities as mothers and women in the sense that they wish to be the ones in control of the technology used to alleviate pain, and not to be controlled by such technology [19]. Attitudes like choosing pain or accepting suffering can be a way of affirming the self. For Viktor Frankl [44], accepting unavoidable suffering can even be a way of finding a sense in life; suffering and facing suffering bravely can be a way of affirming one’s own identity, an achievement, a noble cause, instead of a degradation of the self. Suffering can in the end be considered a characteristic of one’s own identity; after so much suffering, the poet Rosalía de Castro finds in herself an empty space that cannot be filled with anything but suffering:
“That at the bottom, the very bottom / of my insides / there is a desert wasteland / unfillable with laughter / or contentment / but with the bitter / fruits of pain!”Footnote 11 [45].
It may be possible to “feel at home in suffering” – not in a masochistic sense, but as a way of dealing with it. As an alternative to the essential definitions, I propose to understand suffering as an unpleasant or even anguishing experience which can severely affect a person on a psychophysical and even existential level.
Conceptualizing suffering and pain
Conceptualizing suffering as an experience emphasizes the fact that it is something a person experiences (both what Dilthey calls a “lived experience” (Erlebnis), an immediate, unreflected experience and an “ordinary, articulated experience” (Lebenserfahrung) [46, 47]. We should not look at suffering as an abstract phenomenon, but as something experienced by somebody.
Suffering, like pain, is unpleasant or even anguishing: Even if we do not accept an essentialist definition and we reject the understanding of suffering as a “loss of the self” or as a “reaffirmation of the self”, a definition is still necessary. “Unpleasantness” defines suffering and pain. Leknes and Bastian [48] propose “to move beyond a view of pain as simply unpleasant” because “it can also be experienced as pleasant, produce pleasant experiences or motivate us towards pleasant experiences”. They offer a number of advantages and benefits of pain: it represents a possibility for redemption after a transgression, it can highlight bravery, motivate us, enhance sensation, offer temporary relief from other pain and offer “an effective contrast to many non-painful experiences, which can appear relatively pleasant if they occur after pain has ended.” However, such benefits or advantages exist only because pain is unpleasant (if it were not, it would no serve as a redemption, etc). The only convincing argument against the “unpleasantness” of pain is the “pain asymbolia” condition where patients feel pain but not unpleasantness. As I already mentioned, pain consists of a somatosensorial perception followed by a transitory mental image of the local change in the body (nociception) on the one hand, and an unpleasant emotion on the other hand. For Leknes and Bastian, a condition like “pain asymbolia” proves that pain is not necessarily unpleasant. However, I argue that people suffering from such a condition do not have a complete experience of pain, but only of one of its parts. In any case, pain asymbolia is a medical condition rather than a usual experience of pain.Footnote 12
Suffering is not always extreme. Sometimes it is a bearable, short, inconsequential experience. However, it is important to include in our definition the possibility that suffering can affect us at an existential dimension, meaning that it can have an impact on crucial matters regarding one’s personal life, matters that affect our existence in the world, like the desire to continue living, the decision of whether or not to have children, or even how to live life – choices that have to be seen in the context of our attachment to the world. This possibility indeed characterizes suffering too and helps us to perceive its (possible) relevance in life. Moreover, the inclusion of the existential dimension of suffering emphasizes the individual’s capacity for dealing with their unpleasant circumstances/experiences, as well as the crucial impact of their attitude and choices on the whole experience of suffering.
