Suffering at the end of life in the setting of low physical symptom distress.

BACKGROUND: Alleviation of suffering is a fundamental goal of medicine, especially at the end of life. Although physical distress is a component of suffering, other determinants likely play a role. This study attempted to elucidate these other components in an effort to understand the nature of suffering better.
METHODS: Prospective cohort study conducted in the Population-based Palliative Care Research Network (PoPCRN) among English-speaking adults. Data were collected at hospice admission and at frequent intervals until death or discharge. This paper presents patient-reported data collected at the first available assessment after admission, using the Condensed Memorial Symptom Assessment Scale (MSAS; 0=not distressing, 4=very distressing), the McGill Quality of Life Questionnaire (MQOL; 0=worst QOL, 10=best QOL) and 2 suffering scales, overall suffering and suffering caused by physical symptoms (0=not suffering, 10=extreme suffering). The study population (n=48) is limited to those with physical symptoms less than "somewhat" distressing on the MSAS-PHYS. Respondents were divided into two groups: no-mild overall suffering (0-3) and moderate-severe overall suffering (4-10) and compared based on demographics, MQOL scores, MSAS-PSYCH scores and suffering caused by physical symptoms.
RESULTS: Mean age 70 years (range, 33-91), mean Karnofsky score 46, 46% married, 54% male, 71% cancer, 93% non-Hispanic white. Compared to patients reporting no-mild overall suffering, patients reporting moderate-severe overall suffering were more likely to have a diagnosis other than cancer (83% vs. 57%, p=0.05), be younger (65 vs. 75 years, p=0.02) and have lower scores on the MQOL-psychological subscale (6.4 vs. 8.0, p=0.02) and overall QOL scale (6.2 vs. 7.2, p=0.04). No significant differences were noted with respect to gender, marital status, MSAS-PSYCH, or MQOL existential and support subscales. Study patients reporting worse overall suffering also reported worse suffering caused by physical symptoms (6.3 vs. 2.1, p<0.0001). There was little association between the MSAS-PHYS score and either overall suffering (correlation coefficient=0.18, p=0.21) or suffering resulting from physical symptoms (correlation coefficient=0.22, p=0.13).
CONCLUSION: Patients reporting lack of distress resulting from physical symptoms did not necessarily indicate lack of suffering because of physical symptoms or lack of overall suffering. Factors other than physical symptom distress, such as diagnosis, age, and QOL appear to affect the perception of suffering. In order to better address suffering at the end of life, care must be taken to understand differences between physical symptom distress, suffering caused by physical symptoms and overall suffering.