The Start of My Advocacy Journey

Author: Karen Copeland

Usually I write about my journey as a parent – how I have learned how to navigate systems of care as it relates to my child, how I have shifted my perspective on parenting and my passion for building relationships and connections. Today, I am going to write about an experience that was pivotal in my learning how to advocate. This is where my journey began.

I remember the first time I had to advocate for myself within the medical system.

My children were both very young at the time and my husband was away for work. I was often overwhelmed as I had no accessible support network to assist me with my children.

I still remember the day I got the call. It was around lunch time and my toddlers were hungry (read: demanding). The phone rang and I saw it was my doctor’s office. I took the phone into my son’s room and closed the door, this didn’t drown out the noise, but it helped.

“Hello Mrs. Copeland. I just wanted to call, I’m leaving on holidays right after this…I wanted you to know that what we thought was pre-cancer actually came back showing as micro-invasive, but we got it all. I wanted to tell you in case someone else called to let you know this. You will need to follow up with me in three months instead of four. Any questions? Okay, bye then.”

What? Huh? Cancer?!?

Oh.My.God.

The next several months were filled with fear, confusion and a LOT of research.

I was obsessed with trying to learn more and understand, consumed by fear that something was missed.

I asked questions about options and felt like I was dismissed.

I asked for a copy of the pathology report and was denied. “There is no need for you to have it”, I was told, despite the fact that I knew it was my right to be able to request and receive this.

I asked for a referral for a second opinion and was told I was over-reacting. I persisted and got the referral.

At that first appointment I was informed that tests had again showed possible pre-cancerous cell formations. I underwent further, more invasive testing at this first appointment, and during this I was informed that if pre-cancerous cells were in fact present, I would require a more involved surgery. My husband was leaving the following day for three months of work. I stated this, and was told that I could just get the surgery done in Alberta then, so I would have family around to help. The doctor promised to follow up as soon as the results were in.

She never did.

In the meantime, I continued to research. I found the provincial management guidelines online for the particular cancer I had experienced and learned that surgery was recommended in particular situations.

I called the specialist office and requested an appointment. She informed me my results had come back showing no cell changes and therefore I could continue with follow up. I mentioned the guidelines I had found that indicated a particular recommendation for surgery. The guidelines were dismissed as being “from America, they don’t apply in Canada” and then after continued discussion and questions from me:

“well, okay, I will do the surgery for you. It’s not like it will be the first time I have ever done this surgery because of patient anxiety.”

Thankfully, I had a friend with me at that appointment. When we left the office, she expressed how appalled she was at how I had been treated by this specialist. I appreciated that she affirmed my thoughts on what had just happened. I felt humiliated and ashamed.

When I reflect back on how I was responded to in all of those interactions, it stands out that not once did any of the doctors I met with ask me about ME – my fears, my wishes or how this was impacting me. Yes, it was only a micro-invasive cancer and yes it was gone, but it was still cancer and the whole experience was affecting me in a big way. Had any of those doctors sat down and had a real conversation with me, they would have easily understood why I was anxious.

I persisted in finding the care that I was looking for.

I connected with a specialist who took the time to listen to what I had to say. She asked about my family and our family situation. She acknowledged and empathized with the critical reasons for my anxiety.

She told me “It doesn’t matter how big or small a cancer is. When you get this diagnosis, it impacts you.” and she promptly arranged for counseling sessions for me.

Not once did she make me feel like I was over-reacting. Not once did she dismiss or belittle my concerns. Because she asked and then she listened, she understood why I wanted to pursue surgery as a course of action. Three weeks later it was done.

I attended the counseling sessions and found these immensely helpful. My moods began to improve and slowly I came back to living.

I joined an online support group, and this was a lifeline for me. When I found myself being pulled back down by “what ifs”, I shared and was met with encouragement and understanding. This online group, these women who I had never met, they kept me from drowning with their compassion and support. A sisterhood. They let me know that it was okay to jump into the pity pool for a swim every now and then, and would be waiting with warm, fluffy towels when I was ready to get out. We celebrated together and grieved together. They showed me courage, resiliency and hope through candidly sharing their own journeys.

This September marks 10 years. Life happens, this adventure of learning, growing, falling down and then getting back up stronger than before.

I think about this advocacy journey and the different ways systems have responded when I have used my voice.

How I have felt when people have employed a deflect, defend, and patronize response strategy: Humiliated, misunderstood. Less than.

How I have felt when people have employed an Acknowledge, empathize and commit to explore and respond strategy: Empowered, trusting, hopeful.

Is it that we think there is not enough time to connect on a human level when concerns are being brought forward? Do we immediately jump to risk management and damage control, forming assumptions and judgements about motives without digging deeper to truly understand the patient experience? Is it easier to dismiss an emotional or unprepared patient as irrational because he/she is responding in a way that makes professionals feel uncomfortable? (Note: I am not talking about abusive behavior here). Can we acknowledge that patients may not have the tools or expertise to respond the way professionals want them to, and then perhaps connect them to counseling or support groups so they can develop these skills? We encourage patients to advocate for themselves but then we turn around and call them adversarial. If the process goes wrong, we look to what the patient did and said. At what point do we also acknowledge and place accountability on systems and how they contribute to breakdowns in process?

All questions I will continue thinking about for a long time, I am sure.

For now, I am thankful for all the times I have met with people who have followed the path of acknowledgement, empathy, exploration and response. They have taught me much.

I’m looking forward to discovering what the next ten years have to teach me.

 


Related:

Weasel words and no-apology apologies Anne Cooper. Patient Opinion: Every voice matters

Taking Patient Complaints Seriously: using the patient safety lens Gallagher TH, Mazor KM. BMJ Qual Saf 2015;24:352–355. http://qualitysafety.bmj.com/

You Can’t Understand Something You Hide: Transparency As a Path to Improve Patient Safety : Robert Wachter, Gary S. Kaplan, Tejal Gandhi, and Lucian Leape. Health Affairs Blog

 

 

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