Guest Editorial: Non-compliance: Adding Insult to Injury
Every time I see or hear the word non-compliant or read an article1 on the subject, I feel pain. I was once the recipient of that label. I read it in my medical records. Nothing prepared me for what it feels like to be on the receiving end of that label. Let me explain.
In 1980, 9 months after receiving my degree in physical therapy, I incurred a spinal cord injury at T-12. I continued to practice in clinical settings with adult and pediatric clients until 1992. After being victimized by recurring ischial ulcers, I entered the world of seat cushion manufacturing, which alleviated my problem and hopefully has helped other wheelchair users.
I was treated for my ulcers by the usual coterie of clinicians that patients seek in the absence of wound specialists. One day, I received copies of my medical records and I saw the word "non-compliant" in relation to a recommendation for bedrest 24 hours a day, 7 days a week. The impact of seeing that word applied to me was overwhelming. Emotions tumbled through me, one after the other.
I was shocked. Written in the usual blunt, brief, factual medical jargon, the word literally seemed to jump off the page and slap me across the face.
I was humiliated. There in my permanent records, to be read by anyone from whom I might seek help, was the verdict from those "in the know" that I was impossible to work with.
I was angry. How dare you, on your high horse, brand me with that label?
I was insulted. What am I - a 3-year-old child who must do everything the adult says? A slave who must obey the master? A subordinate who must obey the authority figure?
Isn't the clinician supposed to be working with me and helping me, rather than criticizing? Why wasn't my side of the story recorded?
I was frustrated. I had really tried to follow the instruction of 24/7 bedrest but I simply couldn't. Bedrest is easy when pain, fatigue, or a dysfunction prevents you from doing anything else. But being in bed 24/7, discontinuing life as you know it when there is no pain or discomfort, is a whole different story. It's a conscious decision you make every moment of the day. You have to constantly convince yourself that staying in bed, cutting yourself off from life, is really the best thing for you to do. But it's hard to convince yourself to go to the bathroom when you don't feel the urgency to go. It's hard to tell yourself not to go to the bathroom when you have the urge.
Bedrest is also difficult because there is no light at the end of the tunnel - no timeline or limit such as, "Stay in bed for 1 month and then you can get up again." But because wound care can be too inexact to predict, the clinician says, "We'll try this dressing for 2 weeks." At the end of 2 weeks when there is no progress and the treatment is changed, bedrest becomes even more difficult to carry out because it seems to be doing no good at all.
But, if I simply could not carry out the 24/7 bedrest, explained why I couldn't, and asked for alternatives and wasn't given any, why did I deserve the non-compliant label?
In short, I felt branded.
After getting over the initial shock and anger, other emotions surfaced.
I was conflicted. How many times had I written that very word in other patients' charts over the 12 years I was in clinical practice? What had I meant? Had I incited the same strong emotions in my patients that I experienced?
I was horrified. I truly had not meant to label any of the patients I had cared for and cared about over the years.
I reflected on the word compliant, a word that implies superiority of the person making the demand over the recipient. "You will do what I say as I say it." What had I meant by "non-compliant"? Thinking about it, I had approached it as a shorthand medical term for, "I told them to do this, and they didn't or wouldn't"- almost a medical abbreviation. I had assumed that fellow medical personnel reading my notes most likely would interpret this in the clinical way it was intended - not as an open condemnation of the patient but rather as a statement of the situation. In retrospect, what was acceptable to me about using non-compliant is that it allowed me to put a layer between me and the patient - a way to protect myself and to deal with my frustration when patients did not follow through with what I thought were the best instructions.
Now, I reconsidered. Had they really refused? Was it defiance or had I simply not worked hard enough to make the instructions possible to be carried out? Is it that patients didn't or wouldn't... or that they couldn't? Was I unrealistic in my expectations?
To be fair, a small subset of patients is truly "non-compliant"; they seem to function on a self-destruct mode, seeing their bodies as traitorous burdens and/or choosing to relinquish responsibility for their health to another person. But very few are impossible or unsalvageable.
I was convicted. I had been guilty of labeling and felt guilty for causing unnecessary pain.
Now, when I hear or read non-compliant, I cringe. I still can see the page containing that dreadful word. I still can feel how it jumped off of the page and slapped me across the face. Can we please stop adding insult to injury?
1. van Rijswijk L. 2004: Non-compliance no more. Ostomy/Wound Management. 2004;50(1):6-7.
