What’s Patient and Family Centred Care?

Picture of hand with needle ready to burst balloon

Did you know it’s Patient and Family Centred Care Week in Alberta? How exciting! Tomorrow, I’ll have the opportunity to tell a story of my experience as a patient to some Cancer Centre staff. Yes, I’m petrified.

Most of my patient experience has been positive, yet I’ve been asked to balance my talk with negative experiences as well. I’m struggling here because I’m so enmeshed with my silver lining. I don’t deny that I’ve had bad experiences, but stewing about them is counterproductive.

For practice, I am going to focus this post solely on some doozies I’ve had to deal with in my experience as a lemon. You will recognize some of these examples, but I’m saving the best ’til last.

First let’s just say that, from my limited exposure at least, ophthalmologists are largely incapable of placing the needs of their patients before their own. Perhaps those in this speciality should take a mandatory course–they’d never choose it if it were offered as an elective–in patient and family centred care.

Then there was an admitting clerk whose treatment of J. and me changed dramatically when she realized that we were not just special friends. This clerk needed a little lesson in sensitivity to nontraditional relationships. I’ll readily forgive the many staff who’ve asked whether J. is my sister because we don’t announce our relationship by publicly groping one another.

But my very best example, and the one I will share with this group, is that of my first Dr. Blood, whom I divorced three years ago upon being diagnosed with CML. I take pride in my ability to forge a relationship with just about anyone–I am a psychologist after all–but after 12 years together, I made no headway with this physician. Our meetings were brief, and he brushed off any concerns I raised. I left appointments feeling more anxious and confused than I was when I had arrived.

In the year prior to my CML diagnosis, when my energy tanked, I cut down my work, and I got into that trio of traffic accidents, this doctor continued to dismiss my worries. In fact, upon my admission to hospital, a hematologist I’d never met before reviewed my history carefully and decided to investigate CML. And when she made the diagnosis, she gave me hope that chemotherapy (those TKIs I’ve mentioned before) would keep me alive.

Old Dr. Blood (Dr. Heartless?) knew I had been admitted and that CML was being investigated, but he came to visit me only once the diagnosis was confirmed. His visit ultimately led to my dumping him. He had not come to acknowledge he had missed the diagnosis–doctors don’t admit fault, do they?–or to suggest ways he might support my ongoing care; he came to squelch any hope the diagnosing doctor had given me. His words were, and I quote: “Sorry to burst your bubble, but this medication will not work for you because of your polycythemia.” Well, Dr. H., sorry to burst your bubble, but I’m still here and the medication is working like a charm.

Yes, I was angry, and yes, I still am when I think about it. My current Dr. Blood could not be more different than this chap. I plan to talk about her tomorrow, too, because she truly models what this week is all about. She wouldn’t need to take the course, for sure.

 

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5 thoughts on “What’s Patient and Family Centred Care?

    • Dear Mike: I am sad to report that I will not be on TV but in a small basement room–hopefully not a storage closet–in the Cancer Centre. You will just have to imagine my disarming personality and my sharp wit, and my voice quivering in fear, of course. XO Annie

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      • Well I cannot imagine you going back into the closet so let’s hope it’s the small basement room. Good luck, and thank-you for taking the time and energy to share your experiences, with fear, wit and anything else that needs to be heard.

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  1. I am thinking of you today in TBCC as I sit in my ground floor lab in TBCC. We should have connected. I spent catch up on your blog due to an extended cycling holiday in Italy, this included excessive food and Italian wine. Glad to be reconnected with you. Kathy

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    • Kathy: Wish I’d known you hang out on the ground floor of the Cancer Centre. I appreciate your thinking of me today. I needed that. I am a bit envious of your trip to Italy, however. There’s nothing wrong with excessive food and wine so long as you’re cycling it off! XO Annie

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