Suffering at End of Life: A Systematic Review of the Literature

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Suffering, one of the most clinically debilitating conditions faced at end of life, is often neglected by healthcare providers. The purpose of this systematic review was to examine suffering in adults at end of life. Inclusion criteria for this review were studies that addressed suffering in adults at end of life, published after Cassell seminal 1982 article, included the sufferer’s perspective, and written in English. Twelve studies met these criteria representing a total of 339 participants from 9 countries with an age range of 20 to 94 years. Participants came from a variety of settings: outpatient clinics, hospitals, hospices, nursing homes, and personal residences. Themes from these studies included the body becoming an alerting device, the devastating impact of isolation, the sufferers having great concern for others, and moments of relief within suffering. Congruent with theoretical definitions of suffering, the sufferers described changes in their identities. Disturbingly, the sufferers often felt they became inanimate objects in the eyes of family members and healthcare providers. Research in this area is needed to find interventions that attend to the physical distress felt by sufferers and effectively bridge the emotional gap between the sufferer and others.

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