In my previous post about “Patient-Centered Care“, I wrote about being a kidney (CKD) patient for nearly a decade before I went on dialysis and how little I was informed about my condition and it’s inevitable end as ESRD. In the visit when the doctor announced I needed to start dialysis, I just thought, “okay” but my sister who had experience as a critical care nurse burst into tears. She knew what I was in for and what that meant. I didn’t.
I re-read the previous post before starting this one and, frankly, I was shocked. It’s not like I am naive or anything, clueless, unaware, uneducated, etc. I’m not. If anyone should have been asking questions and seeking answers, it would have been me. So why would I not be more inquisitive and questioning? Stephen Wilkins offers some answers to that in his blog, “Mind the Gap” and specifically in his post “The Traditional Patient “Sick Role” Is A Major Barrier To High Quality Health Care“.
In that post, Wilkins points to a possible root cause for how we patients fall into a submissive role in the intimidation of the doctor and his/her office. He describes his own experience with that phenomenon and a study of patients in northern California which determined “that most participants in the study talked about how they actively tried to avoid challenging their physicians during office visits” and “Deference to authority instead of genuine partnership appeared to be the participants’ mode of working.” So, I’m not alone in this. We’re not alone. Wilkins describes this as “the sick role”. That is, we assume the role of the sick person seeking to be cured, perhaps hearkening back to days when we were children and, as Wilkins writes: “If your experiences were like mine you learned very early on that the doctor did all the talking (aka physician-directed style of communication). ”
Although Wilkins writes of experiences in the general medical field, as dialysis patients, we are just as prone to fall into the “sick role” as everyone else in the medical environment. I recall my first visit to a dialysis unit and thinking, “This is the land of the living dead!“. In the first weeks, I did what everyone else did. I didn’t look around. I didn’t interact. I just went where I was told, did as directed, and ventured through the “land of the living dead” with everyone else. I’ll call it being a “Dialysis Zombie”. But it’s not my character to become a zombie so easily. I broke out of that and began interacting and talking with my fellow zombies. I discovered that most people don’t want to be zombies either and they responded, started talking, and after a while the center became less dead zone.
There is a path to fix the “sick role”. Wilkins writes about how providers (doctors, nurses, hospitals, etc.) can eliminate the “sick role”. He says,
“The first step is for providers to recognize the scope of the problem and the need to fix it. The second step is for providers to examine their own attitudes and skills with respect to helping patients break out of the sick role into a more collaborative role. Third, providers and their hospital partners need to acquire the tools, training, and resources needed to help patients as well as themselves design and adapt to their new hats, roles, and social conventions.“
Likewise, we as dialysis patients must look at how we can free ourselves from being “Dialysis Zombies” in both the doctor’s office and in the dialysis center. As Wilkins suggests, the first step is seeing the problem, then look at how you contribute to and participate in it and, finally, seek out solutions.
I will certainly work on becoming more informed about dialysis and more engaging in the doctor’s rounds during his weekly visits and with my other doctors so that I don’t participate in the “sick role”. I will seek out ways to reduce the intimidation that I feel. I found this bit of sage advice from a retired physician with a blog titled, “QualityHealthCarePlease“. He wrote in a comment,
“As a retired physician I too have had to “go to the doctor”. I found your discussion interesting. At my last doctor visit I could have easily taken control of the visit since I know the problems, I know the symptoms, I know the drugs, and I know what the doctor should do. But, like you, I just let the visit unfold.
I know the doctor has an agenda. That agenda will be followed with as much interpersonal skill as the doctor can muster — 1) figure out why the patient is in there 2) ask enough questions to make a diagnosis 3) explain enough so the patient seems to understand the diagnosis and treatment 4) take some action (prescription, tests, surgery, appointment etc) 5) get done in time for the next scheduled visit (but, if you are behind, skip steps 1,2 and 3)
So, I was a good patient and told the doctor why I was there, answered the questions quickly, knew the phone number for my pharmacy, we chatted momentarily, and I went home satisfied I did not step out of line. In the end, I just did what other patients do (plus write a blog about health care).
I have one caveat: if you need something or have a question or need reassurance then say so at the start of the visit to fit into agenda item #1.”
In the dialysis center, freedom from life as a Dialysis Zombie means breaking through barriers (my own included) and engaging people in my unit. I make it a point to ask other patients names and to know the names of ALL staff members. In my previous center, this was difficult since the staff turnover was rapid and there were no name tags or identification. In my current center, the staff write their names on the disposable smocks in large letters on the front and back. Even then a couple don’t, so I ask. I figure if someone comes near my machine while I’m on it, I should know their name! I make it a point to say hello and goodbye to fellow Dialysis Zombies as they enter and leave the center whether I know them or not. Yes, I may look like a tired flight attendant saying “Bu-bye! Bu-bye! Thank you for flying Dialysis Airlines!” but that’s a small price to pay to avoid Zombie-hood. Eventually, we become acquainted and it expands from there. I notice new people and make a point to smile and engage them. During hurricane season, we get many visitors fleeing the storms. One woman, lost in the torrent of activity and chaos, looked at me somewhat bewildered as she walked by and I smiled and waved. A few hours later, on her way out, she stopped by my chair and said with a smile of her own, “You have the loveliest smile!” I knew I’d made her tumultuous life just a bit more pleasant with little more than a facial expression, hand motion, and eye contact.
DevonTexas © 2012
Devon Texas, I remember so fondly meeting and having dinner with you at the September Fly-In in Washington DC this year. I have just now found your blog on WordPress and am delighted to be connected with you once again. I am enjoying catching up on your blogs and they all make very interesting reading. I will enjoy following you on this journey and am starting one of my own with WordPress. I have introduced the product I am selling, called THE NONO SLEEVE and next will attempt to write my own story and go from there. This article really hit home with me about graduating from CKD to ESRD in one fell swoop, coming very close to death at the same time. Thank you for giving me fodder for my own story although not one story is like the other.
Take care and I will look forward to connecting with you once again.
I don’t know if you’ve come across it yet, but I wrote about the Fly-in in my post “Dialysis and Our Voice in Congress” You may be able to add something to it or write about your own experience in your blog.