Breaking the news: A survey of ALS patients and their caregivers

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Abstract
Breaking the news of the diagnosis of amyotrophic lateral sclerosis (ALS) is a formidable task. To evaluate the process from the perspective of patients and caregivers, we surveyed 94 patient-caregiver pairs, as well as 50 unpaired patients and 19 unpaired caregivers. We asked respondents to evaluate the physician who first broke the news of the diagnosis based on the time spent discussing the diagnosis, and six attributes of effective communication of bad news derived from the SPIKES protocol (setting, perception, invitation, knowledge, empathy, strategy). Fifty-six percent of patients rated the way the physician who broke the news as average (30.7), below average (8.6) or poor (16.4). Forty-eight percent of caregivers rated the physician as poor (14.4), below average (4.8) or average (28.8). Better performance on all attributes of effective communication as well as greater time spent discussing the diagnosis was correlated with higher patient/caregiver satisfaction. Our results suggest that there is room for improvement in breaking the news of the diagnosis of ALS. Greater adherence to certain attributes of effective communication of bad news may improve the way physicians perform this difficult task.