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There is no doubt that living with distinguishing physical features can be difficult. More than one study has ranked chronic skin disease as a condition with the greatest negative impact on a child’s quality of life. The expert words of medical providers can have a significant impact on these essential concerns.
There is no doubt that living with distinguishing physical features can be difficult. More than one study has ranked chronic skin disease as a condition with the greatest negative impact on a child’s quality of life. This is not surprising, considering Americans spend more on appearance than health and education combined. Children with visible anomalies are at high risk for poor body image and low self-esteem. And parents of these children often feel guilt, shame and helplessness. The expert words of medical providers can have a significant impact on these essential concerns.
Dr. Elaine SiegfriedTo Juliet Capulet, Romeo’s surname had no impact on her impression of him. To Juliet, "A rose by any other name would smell as sweet." And in the era before “bullying” was a thing, some children could retort “Sticks and stones may break my bones, but words will never hurt me”. But digital media has strengthened and democratized the power of words, including the medical terminology used to teach, communicate, and innovate.
My view on this issue was forever changed by Alanna Bree, M.D., during the July 2017 National Foundation for Ectodermal Dysplasia (NFED) Family Conference. Dr. Bree is my friend, as well as a fellow pediatric dermatologist, long-time Camp Discovery leader and the founder of the non-profit organization A Children’s House for the Soul (www.achildrenshouse.org).
It has been a privilege to attend the annual NFED Family Conference for decades, and interact with the dedicated staff, volunteer medical specialists and families living with a variety of ectodermal dysplasias (EDs). The meeting usually opens with a session for first-time attendees, that includes an overview of the EDs. I have heard several variations of this presentation. But this year, I learned something new from Dr. Bree, whose work and capacity for empathy has gradually sensitized her to the impact of weighted words.
While we listened to a colleague deliver the usual information, she commented on his choice of words like abnormality, disease, defect and mutation. Although medical providers routinely use these terms to discuss heritable conditions, they can carry unintended negative connotations for an audience of vulnerable families.
Another perspective on the subject came from Ryan Haack, this year’s NFED guest speaker, who has left arm amelia. The condition inspired his career as an author, blogger and speaker. His website, “Living One Handed” (http://www.livingonehanded.com/about/) and book, “Different is Awesome” address the issue of living with a condition that cannot be changed and arguably does not need to be fixed. He considers his amelia a distinguishing feature rather than an impairment.
I soon had the opportunity to practice unbiased word selection during a session I facilitated for NFED families with Goltz syndrome. Talking about their concerns without using loaded terms was a challenge. And raising the issue to our Scientific Advisory Committee generated conflicting opinion. One colleague was obviously annoyed by what he perceived as a growing trend towards terminology hypersensitivity.
I have shared this attitude. But the impact of using weighted words is compelling and insidious. It can sway a patient’s self-perception, and allow the patient to become victimized. It can also dehumanize the patient in the eyes of healthcare providers.
In this regard, sometimes pictures speak even louder than words. “Smith's Recognizable Patterns of Human Malformation”, now in its 7th edition, has been a preeminent medical dysmorphology reference since 1970. It was originally illustrated with stark patient images, taken with a gridded background, sometimes marked by black rectangles over the eyes. For medical providers, especially trainees, these images allow patients to be objectified, and for people with heritable conditions searching for medical information, they are likely to be disturbing.
“Weighted words … can sway a patient’s self-perception, and allow the patient to become victimized.”
In contrast, Rick Giudotti, a former fashion photographer, has celebrated people with distinguishing features through his non-profit organization, Positive Exposure (https://positiveexposure.org/). Rick has changed perceptions worldwide with his many didactic presentations and exhibits of his images. Medical education could benefit from his alternative portrayal of people living with physical differences.
Medicine has historically been fraught with pejorative language that reflects sexism (‘hysteria’), ageism (‘senile’), ableism (‘spastic’) and racism (‘mongoloid’). Recognizing this can help providers overcome the inherent bias sustained by these words, and better empathize with, support and empower our patients. The following strategies were helpful to me:
· Avoid passive words that suggest discomfort and hopelessness (‘suffers from’)
· Think of a wheelchair as a mobility aid, rather than considering a user to be ‘confined to a wheelchair’.
· Rather than referring to someone as ‘homeless’, use the term ‘temporarily houseless’ or ‘displaced’.
· Consider a defect or abnormality something that can (and should) be repaired. If not, it is a difference, or a distinguishing feature.
· The only time it is useful to refer to a striking facial difference as ‘disfiguring’ is when a repair is possible, a patient is interested in pursuing treatment and payors deny coverage.
· It is probably best to eschew the word ‘mutation’, (and its emotionally charged root ‘mutant’), but substitution requires practice. Choices include ‘genetic change’ or ‘alteration’.
· Recognize that the term ‘ugly duckling’ (to identify worrisome pigmented lesions has been called out as racist (https://thebomanistudy.wordpress.com/2016/02/27/is-the-ugly-duckling-one-of-the-most-racist-fairy-tales-on-the-planet/). I now use ‘stick out like a sore thumb’. Dr. Bree calls them “moles with personality plus”.
· What I used to refer to as a ‘poor man’s patch test’, I now call “DIY”.
· Be aware that the term ‘noncompliant’ is punitive, and be willing to consider barriers to treatment adherence.
· Involve patients (even pediatric patients) in their treatment decisions.
With practice, my ability to use weightless words is improving, along with perspective and my tolerance for terminology hypersensitivity.
We’d love to hear your thoughts on this message. Do you consider your choice of terminology during patient conversations? Have you seen the impact of alternate word choices? Tell us your experiences using #weightedwords on Twitter and Facebook.