Q: I work part-time as a critical care nurse, and part-time in our hospital's palliative care unit. I recently cared for a patient in the intensive care unit who had a devastating traumatic head injury he received while driving drunk. His girlfriend had been killed in the accident. The family was receiving inconsistent prognosis information from the various medical teams caring for the patient. At a pre-family conference meeting, I raised my concern that this inconsistent information was causing a great deal of suffering for the family, and that keeping this patient alive in this state could be causing suffering for the patient. The senior physician responded that the patient was not in pain and was therefore not suffering, and wanted to know why I thought the family was suffering. How should I have responded to this question?

A: The physician's response to your concern is not surprising. Had you raised your concerns with your nursing colleagues in the intensive care unit you would have likely gotten the same answer. Your experience in this situation is not unique. The inability to define and recognize suffering beyond the physical dimension is a widespread problem in nursing and medicine. Unfortunately, at times even the ability to recognize physical pain and suffering eludes clinicians. Suffering is a highly subjective experience that is unique to the individual experiencing it. Despite the impact suffering has on patients and families, very little time is dedicated to its understanding in nursing and medical school curriculums.

Before suffering can be alleviated, a top priority in nursing and medicine, we must first define it. A review of the literature related to suffering finds that it is most often linked with pain. 1,2 The association with physical pain, while important for those experiencing physical pain, fails to acknowledge people beyond their physical being. The ability to recognize suffering requires nurses and physicians to see patients as "persons." Person, or personhood, includes mind, body, spirit, culture, family, and other subjective experiences. 1 Dr Eric Cassel defines suffering as "involving some symptom or process that threatens the patient because of fear, the meaning of the symptom, and concerns about the future." 1 Fear and meaning are unique to each individual, which explains why two patients with the same diagnosis or symptom will suffer differently, and why some may not suffer at all.

Expanding on Cassel's definition, suffering is a threat to the person's integrity or wholeness. This expansion allows for the inclusion of those important to the patient. The impending loss of a loved one can threaten the wholeness or integrity of a family and can be a significant source of suffering. The differences in how family members perceive the impending loss is one explanation as to why people cope differently. The loss of community; the inability to find meaning in life, illness, and death; estrangement from those important to you; and uncontrolled pain and symptoms all have the ability to threaten wholeness and cause suffering.

The wholeness of the family for whom you were caring was threatened, first by the injury itself, and then by confusing information regarding the future (inconsistent prognosis information). The death of the patient's girlfriend and the involvement of alcohol may also threaten the family's wholeness within the community and with her family, causing even more suffering. The ability to speak to the issue of the patient's physical pain is beyond this question. There is significant debate regarding the ability of patients with devastating head injuries to experience pain. Some who view death strictly as a physical process will argue that these patients do not experience pain. My personal beliefs are that death is more than a physical "process," and that while patients with devastating neurological injury may not experience physical pain, I believe they are capable of suffering.

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