Abstract
Keywords: Participatory medicine, physician-patient communication, patient advocacy.
Citation: Lawlor A. Response to “the term ‘patient’ may describe me…but it does not define me.” J Participat Med. 2011 Jan 3; 3:e1.
Published: January 3, 2011.
To the Editors:
A round of applause, please, for Michael Scott’s recent commentary. What struck me immediately was that this is something that is not confined to participatory medicine; society needs this seismic shift in relation to everything. My particular interest is in people with disabilities and how they are referred to and treated. I know that in the US it is only recently that the word “retarded” has been dropped (there are still cases where terminology actually does need to be changed); here in Ireland, we use “intellectual disability.” I have long campaigned for the term “disabled child” to be changed to “child with a disability.” Always, always put the person first; whether they are a patient, disabled, or otherwise is secondary. Person-centered approaches are needed all round and everyone should get off these little power trips that they’re on. As Michael Scott said, “It’s all about how people interact with each other.” For example, an unbelievable number of mothers of children with 22q Deletion syndrome have been derided for daring to suggest that there’s something more wrong with their children, and the thing is, they’ve all been proved right in the end. Mothers are experts, too.
Copyright: © 2011 Anne Lawlor. Published here under license by The Journal of Participatory Medicine. Copyright for this article is retained by the author(s), with first publication rights granted to the Journal of Participatory Medicine. All journal content, except where otherwise noted, is licensed under a Creative Commons Attribution 3.0 License. By virtue of their appearance in this open-access journal, articles are free to use, with proper attribution, in educational and other non-commercial settings.
Well said, Anne. Through my various volunteer efforts, the use of the word “patient” has always been a double edged sword. I understand it in reference to the relationship between my doctors and me, but sometimes it has been mentioned within my community for us to refer to each other in the context of our illnesses. Some people are not bothered by referencing themselves this way. Others are and for good reason and for exactly the reasons you imply above.
I’ve always been on the fence, but share your reasoning. Even those of us with chronic illnesses are people first–our illnesses are part of us and may shape our beliefs and experiences but not the sum total of who we are or our unique identity and personality.
Thank you for your letter and also thank you Michael Scott for a wonderful commentary. I appreciate you both for bringing this subject to light. It’s a sensitive topic and one that merits an honest discussion.