Saturday 12 August 2017


Yesterday I read a fascinating blog post by the wonderful Denise Brown, founder of  Her piece is titled Dressing the Part: Family Caregiver, MD. It argues for caregivers to wear a lab coat when we accompany loved ones to medical appointments.  Brown is fed up with clinical professionals not treating family caregivers as the care providers that we are. 

I posted Denise's piece on my Facebook page for caregivers and the conversation that ensued was fascinating. Read the exchange.

Kim #1: I think it would be better to consider the opinion of the people we are caring for. My first instinct is that some would feel demeaned by this. (Although as the author states, we have the perfect right to a badge or lab coat)

Kim#2: I simply don't work with anyone who doesn't respect my position as a critically significant collaborator when discussing treatment and health care issues .

1. Talk to and gather info from the patient first
2. Talk to and gather info from me.
3. Review any info I bring from any other significant caregiver or collaborator
4. Everyone answer any questions posed letting the patient attempt the answer first but also giving accurate info even if it directly conflicts with patients narrative.

I'm not about identifying my position in my son's life . He would feel like I'm disclosing and I hesitate to do that unless absolutely necessary .
I am all about telling the dr who I am once behind closed doors.
If this were my aging parent or a spouse I might feel differently and I like the concept as a whole as far as its intent.

The Caregivers' Living Room So interesting and complicated balancing respect for our young adult children with disabilities (and it's no different with my Mom btw) with getting the narrative right with the clinical team. Currently, I'm working on a research project that's developing an app to help young adults with disabilities transition from peds to adult care and have a voice in their own care. It's about education, advocacy and supported decision making. This is really, really tricky. One doctor on a conference call asked, "What if a parent is actually the one using the app in the trial - what if the parent can't let the youth go it alone in the health care system with the app because the parent can't let go or step back? Won't that skew the results of our study?" Another doctor was so embarrassed that the question had been asked because he thought I would be offended or upset. Not at all! I said, "Letting go of our kids' health care is the LAST thing we want to let go of - it's the most important thing and we can't let our kids with disabilities fail in the system for the sake of a research study. So, it's a very good question." I want my son (and my Mom!) to be front and centre - I want them to tell their own story. But as you said, often their story is not accurate. So a lot of diplomacy is required. If I wore a lab coat (and there is a lot a Iove about that idea!), wouldn't that be a way of silencing or diminishing the voice of my son/Mom? It's a tricky balancing act, that is for sure.
Karen: I've seriously considered buying some scrubs and a name tag to wear when I take my parents to their appointments. I've wondered if I would be treated differently. I feel like doctors don't know how to include caregivers. Sometimes we're invisible and sometimes we're scolded for not getting our parents to be compliant. Doctors feel they can say things to us that they'd never say to their patients. If we caregivers admit we're having trouble with compliance there is no understanding. "Why isn't she doing her exercises? It shouldn't be that difficult to get her to do it?" There's a tone that's used that isn't used when they're speaking directly to the patient.

Lisa: Not sure if I would wear a lab coat to appointments, I would feel a bit cos-play doing that. However, I DO dress up for my daughter's appointments which is cos-play I guess! I dress the part of a doctor. I wear nice dress pants and a dressy top and I put my hair into a low ponytail (which I have observed most female doctors seem to do if they have longer hair) and wear light make up. My everyday wear is yoga pants so that is a change for me! I have noticed I get treated with more respect when I am dressed up.

This conversation is fascinating. When I gave a book talk a couple of years ago, a woman of colour put up her hand. She said, "You've told your story of caring, but I would like to know who will tell my story, which is very different from yours. Do you have to put on a business suit to bring your son or your mother to the ER? I do. Because if I didn't, the staff would assume that I am homeless." Everyone (including me) sighed and we shook our heads at the injustices of life for many in our midst. There are optics of power - some that we can control and some that we cannot. Maybe power dressing is a good thing for all of us, but when we had this exchange at my book event, we all felt the double unfairness of being vulnerable AND powerless at a time of need.

Do YOU dress differently for doctor appointments with your loved one? Do you think we should be identified by a badge or uniform as part of the treatment team? How can we signal our important role without diminishing the dignity or independence of our loved ones? 

No comments: