Professionalism and the Written Word: Attitudes and Words Matter in Medical Care for Adults With SCD

For hematologists providing care for children and adults with sickle cell disease (SCD), we frequently must counsel our colleagues not to use terms that are considered pejorative, such as sickler or frequent flyer when describing individuals with SCD. Individuals with SCD consider the term sickler to be derogatory, particularly because the term reduces their existence to a disease.¹  Based on the belief that such terms dehumanize the individual with SCD, the SCD community has worked hard to limit their use. There are data to support such care with terminology: Dr. Jeffrey Glassberg and colleagues conducted a survey of 655 emergency department physicians from 49 U.S. states.²  The results serve as compelling evidence that the term sickler is associated with negative physician attitudes and lower adherence to evidence-based guidelines for acute care in the emergency department.² 

In a randomized controlled trial of medical students and residents (n=413), Dr. Anna P. Goddu and colleagues tested the hypothesis that after reading a medical record note using stigmatizing language, trainees would treat the patient’s pain less aggressively than trainees who read a chart note using neutral language. The definition of stigmatizing language was defined as having any one of the following three features: 1) casting doubt on the patient’s pain (e.g. “insisting that his pain is ‘still a 10’” vs. still has 10/10 pain); 2) portraying the patient negatively (with irrelevant or unnecessary indicators of lower socioeconomic status such as “hanging out with friends outside McDonald’s”); and 3) implying patient responsibility with references to uncooperativeness (e.g., “he refuses his oxygen mask” vs. “he is not tolerating the oxygen mask”). Reading the stigmatizing language in the medical record resulted in a hypothetical, less aggressive management of the patient’s pain when compared to reading a note that was neutral but that contained the same pertinent medical information (5.56 stigmatizing vs. 6.22 neutral; p=0.003) when using two multiple choice questions (complain range of 2-7, representing intensity of pain treatment). Reading the stigmatizing language also resulted in more negative attitudes about the patient with SCD in acute pain (20.6 stigmatizing vs. 25.6 neutral; p=0.001) when using the validated Positive Attitudes towards Sickle Cell Patients Scale (range, 7-35).