ORIGINS AND DEFINITIONS OF SUFFERING

According to the Online Etymology Dictionary, the word “suffer” made its appearance in English c. 1225 and was recorded from 1290. It is derived from the Anglo-French word “suffrir”, the Old French word “sufrir”, and the Vulgar Latin “sufferire” (a variant of the Latin “sufferre”), which mean “to bear, undergo, endure, carry or put under”. These words are based on the roots “sub” (up, under) and “ferre” (to carry), and their meaning is “to tolerate, allow”.

The Oxford English Dictionary indicates that the word “suffer” is used in two basic contexts: (1) “to undergo, endure” and (2) “to tolerate, allow”. The first usage is more specifically defined as “to have (something painful, distressing, or injurious) inflicted or imposed upon one; to submit to with pain, distress, or grief”; “to go or pass through, be subjected to, undergo, experience (now usually something evil or painful)”; “to undergo or submit to pain, punishment, or death”; “to be affected by, subjected to, undergo (an operation or process, esp. of change)”; or, “to sustain injury, damage, or loss; to be injured or impaired”. The second usage (“to tolerate, allow”) consists of a number of rare, archaic, and obsolete references.

RELIGIOUS NOTIONS OF SUFFERING

Before the modern age, religious conceptualizations of suffering prevailed in society. In Judaism, Fox (Reference Fox2008) suggests that there are three causes of suffering. First, he discusses suffering as a punishment for those who sin. Garcia (Reference Garcia2006) also mentions human suffering stemming from the sin of the parent. Second, Fox says that suffering is “corrective education” (p. 3), which is an attempt by God to “guide humanity through suffering” (Fox, Reference Fox2008, p. 3). These types of suffering are also known as “merited suffering” (Schumm & Stoltzfus, Reference Schumm and Stoltzfus2007). Finally, suffering is one way in which people can deepen their relationship with God. This concept is also part of the Christian theology, in which suffering is understood to be “an opportunity of bringing the sufferer closer to God” (Cassell, Reference Cassell1991, p. 35).

In Christianity, suffering is believed to be the result of the original sin with redemption coming through Christ's suffering on the cross and his subsequent death (Garcia, Reference Garcia2006). Van Hooft (Reference Van Hooft1998) suggests that the suffering of Christ is viewed as an example of positive suffering, because salvation can only be achieved through this act. In his discussions of Catholic beliefs of sin and suffering, Garcia (Reference Garcia2006) makes reference to the writings of the late Pope John Paul II, who believed that suffering is less about punishment than about purifying our sins.

Buddhist teachings include reference to the term “dukkha”, which is “suffering, dissatisfaction or turmoil” (Schumm & Stoltzfus, Reference Schumm and Stoltzfus2007, pp. 10–11). Suffering, in turn, is defined as something that is difficult to bear (Schumm & Stoltzfus, Reference Schumm and Stoltzfus2007, referencing Hallisey, 1998). The meaning of suffering “is characterized by selfish attachment” to something associated with “me” or “mine” (Schumm & Stoltzfus, p. 11). Relief from this suffering entails a freeing of oneself from this isolation (Schumm & Stoltzfus, Reference Schumm and Stoltzfus2007).

This brief discussion shows that suffering, in religious contexts, is something that is explained as a part of life, an “immutable component” of being human (Goldberg & Crespo, Reference Goldberg and Crespo2003, p. 86). Notwithstanding this assertion, people have always been searching for the meaning of suffering (Cassell, Reference Cassell1991) and attempting to reconcile the tension between a benevolent and omnipotent God and suffering as an evil in the world (Morgan, Reference Morgan2002; Schumm & Stoltzfus, Reference Schumm and Stoltzfus2007). Although religious beliefs continue to influence people's conceptualizations of and explanations for suffering, the modern age brought with it a new paradigm that dominates our thinking today.

MODERN NOTIONS OF SUFFERING

Goldberg and Crespo (Reference Goldberg and Crespo2003) argue that the construction of suffering as an unalterable part of life no longer reflects the way we think about the notion. In referencing McGill (Reference McGill and Doughert1982, p. 159), they suggest that our attitudes today “reveal the pernicious ‘conviction that suffering is somehow utterly incompatible with being genuinely human. It is widely believed that no human growth and no human development are possible in suffering” (Goldberg & Crespo, Reference Goldberg and Crespo2003, p. 86). In modernity, it has been suggested that society looks to science to assuage suffering (Morgan, Reference Morgan2002). “The belief that all problems will eventually yield to the ingenuity of science has displaced the irrational and tragic with an epic vision of the technical perfectibility of the secular world” (Morgan, p. 319, emphasis in the original).

Cassell (Reference Cassell1991) argues that a physician's obligation to relieve a patient's suffering “stretches back into antiquity” (p. 30). He defines suffering as “the state of severe distress associated with events that threaten the intactness of person” (Cassell, Reference Cassell1991, p. 33). Cadwallader (Reference Cadwallader2007) suggests that the promise of a relief from suffering is a goal “one cannot simply reject,” therefore establishing the “unshakeable foundation” upon which myriad medical technologies have been developed in order to facilitate this end (p. 377). According to Carnevale (Reference Carnevale2009), three common beliefs about suffering prevail in modern medical contexts: (1) the word “suffering” is used interchangeably with the word “pain”; (2) a patient's suffering can be “accurately assessed” by someone else; and (3) the most important priority is to eliminate suffering (p. 173). Ironically, this third element of eliminating suffering is seen to be even more important than the goal of preserving life (Carnevale, Reference Carnevale2009). The importance of the elimination of suffering stands counter to religious ideas, which focus on helping people tolerate, accept, or bear up under suffering. Now there is an underlying notion that eliminating the person is acceptable, if that is the only way to eliminate suffering.

DIMENSIONS OF SUFFERING IN THE PALLIATIVE CARE LITERATURE

In discussions of suffering, it has been suggested that, although the word “pain” tends to accompany the word “suffering,” the latter term describes more than physical symptoms. For example, Terry and Olson (Reference Terry and Olson2004) argue that “the relief of patients’ pain and physical symptoms may be supposed to mean the same thing as the ‘relief of the suffering and distress of terminally ill patients’” (p. 604). In fact, they found that sources of suffering were not “clearly related” to patients' “dominant symptoms” (p. 606).

Chochinov (Reference Chochinov2006) reviews the many facets of suffering. He notes that although it is “tempting” to look at the “alleviation of physical symptom distress” (p. 87), such distress does not tell the whole story. Other dimensions of suffering include existential, spiritual, and psychosocial elements as well (Chochinov, Reference Chochinov2006). More specifically, suffering might encompass a number of different reactions. Hopelessness is one such reaction, in which patients may feel that “maintaining hope was intimately connected with a sense that life continued to serve some purpose or held meaning enough to sustain their continued existence” (Chochinov, Reference Chochinov2006, p. 90). Another reaction is the feeling of being a burden to others. This feeling relates to notions of quality of life and maintaining autonomy when dependency is seen as “threatening the integrity of personhood itself” (Chochinov, Reference Chochinov2006, p. 91). Dignity is another concept that is closely tied to the idea of being a burden, as a patient's perceived inability to continue to be independent may be interpreted as being undeserving of “honor respect, or esteem,” which can undermine “the value of life itself” (Chochinov, Reference Chochinov2006, p. 92).

In their analysis of suffering, Currow and Hegarty (Reference Currow and Hegarty2006) discuss a number of elements including: (1) physical; (2) social, including isolation when loved ones withdraw; (3) self-image; and (4) existential issues. Similarly to Chochinov (Reference Chochinov2006), the authors note how suffering can pose a threat to personhood. “It is not just our physical wellbeing but our social, sexual, emotional, financial, or spiritual sense of wellbeing that can contribute to and, at times, drive suffering” (Currow & Hegarty, Reference Currow and Hegarty2006, p. 128). George (Reference George2009) says that the way in which suffering can be envisioned is “an attack on the integrity of, or sense of self, dissociation or otherness, a loss of dignity—the draining of events upon ones sense of worth or value” (George, Reference George2009, p. 386). Kellehear (Reference Kellehear2009) suggests that “although there is wide agreement that suffering is a significant alteration to a sense of self involving pain, injury, deprivation, or significant social or personal change, the precise prevalence of this experience of suffering changes with the subtleties of its definition” (Kellehear, Reference Kellehear2009, p. 389).

THE CASE OF SUE RODRIGUEZ

Notwithstanding that suffering has been described, in the palliative care literature, as multidimensional and complex, the question remains as to how laypeople conceptualize suffering and what connections suffering has with debates about the “right” to assisted suicide. In an effort to shed more light on this issue, we have chosen to look at such a debate within the context of the specific case of Sue Rodriguez.

In 1991, a Canadian woman named Sue Rodriguez was diagnosed with amyotrophic lateral sclerosis (ALS). In 1992 she launched the first of what would become a series of court battles in an attempt to have assisted suicide, which is a criminal offence under Canada's Criminal Code, legalized. Knowing that in time ALS would prevent her from being able to end her own life, Rodriguez asked the Court for permission to have a doctor assist her in committing suicide in order to be able to control the time and manner of her death.

In 1993, the case reached the level of the Supreme Court of Canada. The court ruled, by a decision of 5–4, against Rodriguez, suggesting that she did not have a right to assisted suicide. In writing for the majority, Justice Sopinka said:

Sue Rodriguez did commit suicide in 1994, aided by a physician whose identity remains anonymous.

METHODS IN ANALYZING THE EVERYDAY DISCOURSE OF SUFFERING

We conducted our research in connection with a larger project examining vulnerable people at end of life. We define vulnerable people to include: (1) the frail elderly; (2) people whose terminal illness is associated with a long trajectory of decline and cumulative functional limitations; and (3) those with longstanding disabilities, facing comorbid, life-limiting conditions, although we place particular emphasis on the last group. Over the course of this 5-year undertaking, it became evident to us that the use of certain key words plays a significant role in the discourse of disability and end of life. One of these words is “suffering” and its use is the focus of our article.

In designing this study, we were concerned with discovering how laypeople use and understand the word “suffering” in end-of-life contexts. In order to analyze the data, we use discourse analysis as our methodology. Jørgensen and Phillips (Reference Jørgensen and Phillips2002) describe the word “discourse” as “a particular way of talking about and understanding the world or an aspect of the world” (p. 1). In the context of this work, we are using what Tonkiss (Reference Tonkiss and Seale2004) calls “a broad social approach.” This allows us to examine the way in which language is used to construct meaning. More specifically, we are looking at how the word “suffering” is used in what we call “everyday discourse” to reveal how members of the general public understand and conceptualize the term.

Our data were taken from a series of postings to the online forum “Staying in School.” Called “The fight for the right to die,” the discussion raised the following question in connection with the Rodriguez case: “Do you support legislation that legalizes assisted suicide or do you oppose it?” Comments were posted between February 3 and 13, 2008. Of the 155 total comments, we analyzed only those that specifically used the word “suffer” (or a derivative thereof). This narrowed our data set to 63 comments posted between February 4 and 12, inclusive.

Tonkiss (Reference Tonkiss and Seale2004) describes three elements involved in discourse analysis. She characterizes them as “devices or tools for opening up the text, rather than a fixed set of analytic strategies” (p. 378). The first element is identifying key themes (Tonkiss, Reference Tonkiss and Seale2004). The second element is looking for variations in the data, with the aim of disrupting “the appearance of a ‘smooth’ piece of discourse, allowing insights into the text's internal hesitations or inconsistencies, and the way that the discourse aims to combat alternative accounts” (Tonkiss, Reference Tonkiss and Seale2004, p. 379). Finally, we paid close attention to the silences, which required us to read “against the grain”, looking for gaps or things that were unspoken (Tonkiss, Reference Tonkiss and Seale2004).

AN ANALYSIS OF HOW LAYPEOPLE UNDERSTAND SUFFERING

In analyzing the data, three key themes emerged. The first theme focused on a discussion of when people suffer. The second theme showed how people are understood to suffer. The third theme that we uncovered considered how suffering should be dealt with. Variations in the data were rare but did reveal a religious understanding of suffering and an acknowledgement of the effects of treatment. We also examined what was not said in this online discussion: there was little consideration of the more holistic goals of palliative care and how suffering might be understood and managed in ways other than within the frame of assisted suicide. We will discuss each theme in turn.

WHAT WAS LEFT UNSAID: AN INTERSECTION OF SUFFERING AND PALLIATIVE CARE?

This analysis of the everyday discourse of suffering reinforces Finlay's (2009) contention that “to lay-people the phrase ‘unbearable suffering’ conjures up images of patients on their death beds wracked with uncontrolled pain” (p. 1841). The vast majority of people who posted comments on the blog in the context of suffering had a very similar understanding of when people suffer, how people suffer, and how suffering should be dealt with.

No alternative conceptualizations of suffering that might concretely address the alleviation of suffering beyond the assisted suicide debate were really explored. In fact, one of the most interesting and obvious things we noted when analyzing the data was a complete disengagement between the everyday discourse and the palliative care literature relating to suffering.

The data confirm that people see pain as an integral component of suffering, although there is little acknowledgement of the role that pain management can play in controlling pain and consequently relieving suffering. There is also little evidence in the data to suggest that people are aware of ways in which suffering can be discussed and ameliorated in a more holistic way. If, as George (Reference George2009) suggests, “pain, indignity, hopelessness and agony” are indeed “suffering's acolytes” (p. 385), how can palliative care providers bring an alternative discourse into everyday conversations about suffering?

A number of authors have suggested ways in which suffering can be re-imagined. For example, Currow and Hegarty (Reference Currow and Hegarty2006) suggest that one solution to threats to the integrity of the self is through “connectedness” which “invites a relationship in which the carer's presence is one of humility, honesty, openness, and trust creating a relationship of mutuality and respect for the wisdom within the suffering person's spirit” (p. 134, emphasis in the original).

In their work on clinical approaches to cancer care, Lethborg et al. (Reference Lethborg, Aranda and Kissane2008) discuss four goals of care. The first goal is to encourage the person to believe that “life has meaning and purpose” (p. 62). Second, it is important to acknowledge a person's suffering because “suffering exposes the limitation of one's existence, bringing about a greater awareness of the meaning of life” (p. 62). Similarly to Currow and Hegarty (Reference Currow and Hegarty2006), their third goal is to strengthen a person's connections with others. Although people who suffer may initially withdraw from others, Lethborg et al. (Reference Lethborg, Aranda and Kissane2008) suggest that many people “return” and in so doing can share their suffering. The final goal is to ensure the person receives “optimal physical care” (p. 63). The authors see this as a starting point to relieving suffering. From this, the psychological and existential “can be attended to” (p. 63).

Chochinov's (Reference Chochinov2002) model of dignity-conserving care is another way of understanding and talking about suffering using a new script. This model is based on the notion that the preservation of dignity is paramount in considerations of palliative care and “considers 3 broad areas of influence on individual perceptions of dignity” (p. 2254). The first area is illness-related concerns, or “those things that result from the illness itself, and threaten to, or actually do, impinge on the patient's sense of dignity” (pp. 2254–2255). The second area is the dignity-conserving repertoire, which “incorporates those aspects of patients' psychology and spiritual landscape that influence their sense of dignity” (p. 2256). The final area of influence is the social dignity inventory or the “social issues or relationship dynamics that enhance or detract from a patient's sense of dignity” (p. 2256).