EXPLORING SUFFERING

Relieving suffering is the ancient goal, warrant for authority, test of adequacy, and ethical core of medicine.¹ Fundamental to medicine’s meaning and purpose, the relief of suffering should arguably be the foundation for medical decision making. Yet, modern medicine often fails to relieve suffering and, at times, can paradoxically exacerbate it through its curative focus, therapeutic activism, and a service delivery system poorly designed to meet the needs of chronically ill patients.^2,3 In a robust quest to cure disease and extend life, attention to suffering has fallen by the wayside.

The contemporary discussion of suffering entered medical literature late in the 20th century. In 1982, Cassell explored suffering in an article in the New England Journal of Medicine. ⁴ He later observed that, despite a widely referenced publication in an influential medical journal plus other articles and a book addressing the subject,^5–7 little had changed in medicine’s response to suffering.⁸ Cassell attributed this to beliefs that understanding and managing suffering is intuitive, and to the training and practice focus on disease management rather than on the ill person.

More recently, Epstein and Back noted that clinical care rarely addresses suffering and recommended 2 management approaches to relieve it. The first, diagnosing and treating disease to remove the source of suffering, remains paramount in medical efforts to alleviate suffering. The second, “turning toward” suffering, involves being open to the patient’s experience so to enter the patient’s world.^{9 (p2623)} By so doing, clinicians can help patients to refocus and reclaim important, meaningful, and generative aspects of their lives that foster growth through connection, transcendence, and healing. “Turning towards” broadens the focus of medical service delivery to include the patient’s illness experience and suffering in management decisions.¹⁰

The travails of chronic illness exacerbate patient suffering. Given many clinicians may feel inadequately prepared to deal with the medical needs of chronically ill patients,^11,12 it is likely even fewer feel prepared to help them relieve their suffering.¹³ Alleviating suffering requires that clinicians understand, identify, prevent, relieve, or manage it.¹⁴ Patients can be supported through the degradations of chronic and terminal illness by a thoughtful exploration of their suffering. Suffering is conveyed as a story which inevitably involves the existential aspects of a patient’s life. Clinicians skilled in the nuances of narrative medicine can help patients edit their stories, which often involves engaging patients on levels relatively uninformed by medical education. Along the way, patients may be guided to find holistic healing.

THE NATURE OF SUFFERING

There is no commonly held definition of suffering.^15,16 Cassell defined it as “the state of severe distress associated with events that threaten the intactness of the person.”^{4 (p640)} Other definitions include: “an aversive emotional experience characterized by the perception of personal distress that is generated by adverse factors undermining the quality of life”^{17 (p57)}; “an individual’s experience of threat to self, a meaning given to events such as pain or loss”^{18 (p5)}; “perceived damage to the integrity of the self”^{19 (p2233)}; and “a syndrome of some duration, unique to the individual, involving a perceived relentless threat to one or more essential human values creating certain initially ominous beliefs and a range of related feelings”. ^{14 (p11)} Taken together, one might conclude that suffering is personal and individual, is related to threats to the integrity of self, and is experienced by the whole person, not just the body.

There is greater consensus concerning the dynamics of suffering. Suffering involves “dissolution, alienation, loss of personal identity and/or a sense of meaninglessness.”^{20 (p717)} While physical pain can cause suffering, suffering can arise separate from physical pain, and some people with pain do not particularly suffer because of it.^4,19 Suffering ranges in intensity from distress^4,14,18 to misery, anguish, and agony.¹⁴ It pertains to the meaning ascribed to events and inevitably entails existential and spiritual elements.¹⁶ “The more we suffer,” maintained Elisabeth Kubler-Ross, “the earlier the spiritual quadrant opens and matures.”^{21 (p108)} Such “deep suffering” is a transformative experience in which identity is challenged and changed to forever alter the life and relationships of the sufferer.^{16 (p23)}

Yet suffering remains an integral part of human experience, for life entails suffering—the first of Buddha’s Four Noble Truths. We suffer when we don’t have what we want or have what we don’t want.²² Suffering prods us towards a more nuanced understanding of our place in the universe in the same way that physical pain warns us to avoid destructive activities.²³ The individual, anecdotal nature of suffering, suffused with perception and meaning, is relayed as a narrative.²⁴ To understand the sufferer, one must understand the narrative, for it is through story that the patient’s suffering is accessed.²⁵ This means both hearing the illness story and listening for the suffering narrative therein.