Correlates of suffering in amyotrophic lateral sclerosis

Objectives: 1) To determine the prevalence of pain, suffering, poor quality of life, depression, and hopelessness in people with ALS, and the correlat es of suffering and poor quality of life; 2) to analyze the relationship be tween pain, suffering, quality of Life, and attitudes toward life-sustainin g medical treatment and physician-assisted suicide; and 3) to determine con cordance between patients with ALS and their caregivers in rating the patie nts' pain, quality of life, and suffering. Methods: Subjects completed a si ngle interview. We measured the subject's pain, quality of life, suffering, hopelessness, depression, social support, perception of burden to others, level of disability, desire for Life-sustaining medical treatment, and inte rest in assisted suicide. Caregivers also rated the patient's quality of li fe, pain, surd suffering. Results: A total of 100 subjects with ALS and 91 caregivers participated Suffering was rated as 4 or greater on a six-point scale by 20% of subjects with ALS, and 19% rated their pain as 4 or greater on a six-point scale. Eleven percent had clinical depression. Physicians f requently failed to recognize and treat pain and depression. The correlates of suffering were increasing pain, hopelessness, and level of disability. The correlates of poor quality of life were poor social support and increas ing hopelessness; The correlation between subjects' and caregivers' rating of the patient's suffering was r = 0.47. There was no relationship between subjects' ratings of pain, suffering, and quality of life, and their intere st in Life-sustaining treatment or physician-assisted suicide. Conclusion: Many patients with ALS suffer, and their suffering is correlated to pain an d hopelessness. Physicians caring for patients with ALS frequently fail to recognize and treat their patients' pain and depression.