The need for an understanding of suffering is increasing as the field of palliative care grows. The term suffering is often used without definition and is frequently mistakenly believed to be synonymous with physical pain. Writers on the topic suggest suffering is an emotional response to threats to one?s identity as a person that is expressed as fears or worries about what might happen. The experience of 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. Few studies have explored family perceptions of suffering expressed as worries in the dying nor how these worries relate to physical symptoms in the dying. Families represent an ideal but underutilized sources of information about end-of-life care.
The aims of this study are to test new items about family perceptions of worry in the dying for feasibility and basic psychometric properties as well as to explore relationships among family perceptions of worries, distressing symptoms, and suffering. Data for the proposed pilot study will be collected from family members by telephone interview from 2 to 4 months post-decedent death using a 42-item questionnaire administered by a highly trained graduate-level research assistant. Family members will be identified from a stratified random sample of death certificates, selected to maximize cultural diversity, obtained from the Oregon Health Division. Death certificates will be sampled over a 3-month period to obtain a statewide sample of n=30 family respondents. Items and subscales will yield quantitative data about family perceptions of worry and distressing symptoms in dying patients. Statistical analysis will be used to assess the performance of new items about worry in the dying and to explore the relationships among family perceptions of suffering, worry, and distressing symptoms. The results will be used to elucidate the characteristics of suffering and to refine items that measure suffering. Findings will be used to guide the next, larger study of suffering with a long-term goal of unpacking the yet-to-be defined symptom clusters that constitute suffering. The ultimate goal is to reduce suffering in the dying.
