I have been slogging along as a family advocate and then as a patient in the health system for the past 16 years. I’ve had paid positions at two different children’s hospitals where I was deeply committed to improving the family experience. I even moved my family to another province for one of those jobs. I’ve logged countless hours as an unpaid volunteer on committees. I’ve spoken at many national and international health conferences as an inspirational speaker.
Before that, in the 1990’s, I worked on projects for a provincial health department in funding, costing and information management. In the 1980’s, I was a nursing student for two years before transferring into English, worked as a nursing attendant and went on to get a graduate certificate in health care administration.
I tell you all this not to prove my credibility, but to say that I’ve been around the block a few times.
All of me is tired. Getting cancer two years ago tipped me over the edge. Improving health care for patients and families has been my life’s work. My ongoing experience in oncology has shown me that things have not improved for patients one little bit. To what end have I dedicated myself to this work? What difference have I made?
I’m not trolling for compliments. I am truly wondering where the evidence is that my hundreds and hundreds hours of paid and unpaid patient engagement work has made any positive change. There is no evidence in my recent clinical experience. So why continue?
I started my advocacy work in pediatric health care after my son was born with Down syndrome. I co-founded a community based peer support program, lobbied for a Down syndrome medical clinic and helped build a family council at a children’s hospital. If you had asked me, I would have said that I was trying to make meaning of my son’s diagnosis.
Reflecting on this seemingly noble rationale, I recognize that this is actually rather insulting to my son. What does this say about how I felt about the meaning of my son’s life? Now I know that he has meaning by simply being human. I don’t need to try to change the world to validate his worth and existence.
I would have also said that I did advocacy work to ‘make a difference.’ But other than a shot to my ego and some brief warm fuzzies for the audience, what difference did making myself vulnerable and standing behind a podium sharing my story (and even worse, sharing my son’s story) even make? Show me the evidence.
This past week I had a trifecta of events. I heard Andre Picard speak at City Conversations at SFU but his wonderful talk rattled me. If I had been less worn down and brave enough, I would have stood up and asked: What can us patients do to improve Canada’s health care system? His clear and factual accounts of the myths of Medicare hit very close to home.
“As Canadians, we are all too accepting of mediocrity,” he said. “Once in the health care system, you ask yourself – what the hell is wrong with the system?” These true statements chilled me to the bone.
Then I had an unpleasant encounter with a new oncologist. And then a terrible appointment letter showed up in the mail. My never-ending shitty patient experience just goes on and on and on.
What the hell is wrong with the system?
All my talk about kindness, compassion and the patient voice has been for naught. (Read Isabel Jordan’s reflections and Jennifer Johannesen’s critique of the whole patient engagement movement for food for thought).
The past two years I’ve slowly been withdrawing from the patient engagement world. I no longer accept speaking engagements. I don’t volunteer on committees or with projects. I think: what’s the point?
I still rabble rouse on Twitter and Instagram and I write essays on this blog. I’ve written a memoir and manifesto about health care called The Bird’s Eye View and I’m in the midst of editing it and shopping around for a publisher. But writing is something in my realm, in my control. My own self tries to treat myself with respect and kindness. I no longer rely on health organizations to do that for me, because 93% of the time, I’m deeply disappointed.
I don’t want to deter you if you believe that patient engagement will change the health care world. This has not been my experience but maybe it is yours. But I must plead with you: Please don’t allow yourself to be taken advantage of. Don’t let them ‘use’ your story. Be particular when accepting opportunities. Think, as I rarely did: Why am I doing this? What is the organization’s intention? What is my own intention?
Zoom back 12 years and I was at a health conference with a team of family members and clinicians. Something rotten happened there – we were there as a team, but a team decision was made and I wasn’t even consulted. I mean, the details don’t matter – I have allowed this to happen to me a thousand times since then.
I left the conference room and went into the elevator to compose myself up in my room. I was naive and hurt. The pain of this made me weep. I had thought I was a full partner and I clearly was there only as a token family representative.
The elevator doors opened and another woman walked in. It was a mom who had volunteered with another Canadian children’s hospital for many years. I hastily wiped away my tears but I was still clearly upset.
“What’s wrong?” she said, gently hugging me. “Come to my room and we will have a chat.”
I sat on her bed and cried, feeling betrayed and used by the clinicians. She comforted me but then said firmly:
Don’t give ever them all of your heart. Because if you do, they will chew you up and spit you out.
I’ve given this same advice to patient and family advocates over the years, but have not heeded it myself. I’ve allowed myself to be treated shittily by the system (and never ever forget that the system is made up of real live people) over the past dozen years. Why have I done this? I wanted to belong. Attention massaged my fragile ego. I had a need to be heard. And yes, I wanted to make a difference.
No more. I quit you health care. Except for my minimized touches in a clinical setting – I have had cancer after all, which never really goes away – I’m done.
I’m breaking up with you patient engagement. You’ve been a rotten partner. You don’t deserve me anyhow. It is finally time for me to take my own heart back.