1st Global Conference
Thursday 11th November – Saturday 13th November 2010
Prague, Czech Republic
The Health-within-illness Experience : A New Mobilizing Self Process for Living in Harmony with One’s Existence and Accommodating to Endless Suffering
Edith Ellefsen
University of Sherbrooke, Quebec, Canada
According to Donnelly, people with chronic illness live in “the dual kingdoms of the well and the sick”1. Consequently, the illness experience contains elements of both illness and wellness. The wellness is determined by comparing the experience to what is known and understood about illness and vice versa. This qualitative study aimed to explore and describe the experience of health-within-illness from the perspective of adults living with scleroderma systemic disease in Quebec, Canada. Two questions guided the current research: 1. What is the lived experience of adults with systemic scleroderma? 2. What is the lived experience of heath-within-illness for these adults? Using van Manen’s2 phenomenological existential and hermeneutical methodology, the main researcher collected and analyzed data from two in-depth interviews with 17 participants. This study’s findings revealed four themes to characterize the systemic scleroderma experience: (a) suffering of the sick body; (b) inner and relational disharmony; (c) accommodation process and (d) heuristic accommodation. On the other hand, two themes described the health-within-illness experience: (a) new mobilizing self and (b) harmony with one’s existence. A new conceptualization of health-within-illness experience is proposed. These findings offered insights into the experience of suffering when people are living with a rare chronic illness and how wellness is lived in this endless experience. Some suggestions are proposed to soften suffering and promote health-with-illness experiences. Finally, the current study challenges some assumptions that underlie previous models, such a single and linear trajectory of living with a chronic illness where health experience is described like an end goal to attain or a becoming process focused on the future. The terms “acceptance” and “denial” of illness, as they are traditionally used by health care professionals, are also reappraised.
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Logos, Ethos, Pathos: Do Practitioners of Medicine Have a Role or Obligation to Recognize and Respond to Suffering?
Yuri Maricich
University of Virginia Health System, Charlottesville, VA
What is the nature of suffering? Is it pain or is it distinct? What is the purpose and nature of medicine? Do medical practitioners have an ethical obligation to recognize and respond to suffering? If yes, how does today’s techno-centric practice take into account patient suffering while incorporating the power of the scientific method? Medicine, as a praxis, and not a hard science, relies upon the scientific method for its episteme and decision-making. A practice, defined by MacIntyre, represents a cooperative interaction in pursuit of goods (acts and ends), which are intrinsic to the relationship between the caregiver and patient (1), implying ethical obligations that are inherent, and must be adhered to within the clinical relationship. At its core the practice of medicine is a relationship between persons. The patient is a vulnerable individual who is in need of care (object of responsibility), and the clinician has accepted the responsibilities to provide such treatment and care (subject of responsibility)(2). However, responsibility is not rendered to merely a body, but to the embodied person. Therefore the clinician must acknowledge and accept the more extensive responsibilities of healing and caring in recognition of the patient as a person. The patient is a living subject that consciously experiences the body, and its states, beyond biologic realities (3,4). Neurobiology demonstrates that each person is uniquely hardwired. Medicine must address the spectrum of the patient from genome to neurome to sociome in the clinical encounter. Engel (5) and Cassell (6,7) have lamented that modern medicine often reduces the patient to parts and treats without reference to the person as a whole. In this paper, I will reflect on the nature of suffering in medicine and its distinction from pain. I will argue that practitioners have an ethical obligation to recognize and respond to suffering.
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Independence and Connection of Pain and Suffering
Sascha Benjamin Fink
Institute for Cognitive Science, University of Osnabrück
In everyday usage, the terms “Pain” and “Suffering” are used almost interchangeably: we speak of psychic pain (Nesse 1991), of social pain (Panksepp 2003, 238), of Weltschmerz (Paul 1823), but also of physical suffering (as in Webster’s Dictionary’s entry on “pain”) or manifestations of suffering. This interchangeability is contrasted with our views of causation: in clinical contexts we might say that chronic pain causes huge amounts of suffering, and in psychosomatics mental suffering might cause lower back pain. Our intuitive understanding of pain and suffering seems therefore oxymoronic: While interchangeability suggests identity, causation entails distinctness.
The aim of the paper is to argue for a distinction of the concepts pain and suffering. If pain is limited to the sensory and suffering to the emotional — as studies on the empathy of pain suggest (Singer et al. 2004) —, we are able to explain instances of pain without suffering (as in pain asymbolia (Berthier et al. 1988; Rubins and Friedman 1948; Brand and Yancey 1997; Grahek 2007), masochism (Rachels 2000) or meditative states (Zautra et al. 2010; Barber 1959; Perlman et al. 2010)) and suffering without pain (as in boredom (Heidegger 1929/2004) and depression (Clark and Treisman 2004)). Additionally, instances of pain and suffering show differences in their representational content, I argue. The double dissociation in pathology and everyday phenomenology is sufficient for pain and suffering to be distinct and independent entities.
Still, there is something to explain: What is the connection between pain and suffering that mirrors in our intuitions, usage and neurobiology? I argue that there are at least two connections. First, paradigmatic pain (a bodily sensation connected with an aversive emotion (IASP 1986)) represents threat/damage to one’s bodily integrity, while suffering represents damage to one’s integrity in general. Representationally, suffering clearly encompasses pain. Second, I hypothesise that pain and suffering evolved from a single sensory-motor connection still observable in nematodes (Tobin and Bargmann 2004). Here, a noxious stimulus always results in an aversion behaviour. With the advent of central nervous systems, sensory nociception was decoupled from action components. This allowed agents to endure pain to gain a benefit like food, protection or sex, and thereby increase their evolutionary fitness. In these cases, the emotional and action component, suffering, became available to other mental resources: beliefs, perceptions in general, awareness of loss in social status, and so on. Understanding suffering as detached but evolutionarily and representationally connected with pain allows us more accurate predictions, preventions and ascriptions of suffering.
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