Family Perceptions of Suffering in Dying Patients

Principal Investigator: Susan E. Hickman, PhD
Co-investigators: Virginia P. Tilden, DNSc, RN, FAAN & Susan W. Tolle, MD

The term suffering is often used without definition and is frequently assumed to be synonymous with physical pain. However, those who write about suffering suggest that suffering is an emotional response to threats to one's identify as a person that is expressed as fears or worries about what might happen. Suffering is related to the subjective interpretation of symptoms, experiences, and expectations for the future. This definition is based primarily on clinical observation and theoretical exploration as few studies have explored perceptions of suffering expressed as worries or examined the relationship between these worries and physical symptoms. The concept of suffering is important in end-of-life care and is one of the areas of concern of people dealing with the impending death of a family member. This study examined family recollections and perceptions of worry by a recently deceased family member and explored relationships among perceptions of worries, distressing symptoms, and suffering from the family member's perspective. The results provided information about the characteristics of suffering and laid the foundation for additional work exploring clusters of symptoms that are central to perceptions of suffering prior to death. This knowledge will provide direction for future approaches to reducing suffering in the dying.

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