Blog post by Dr. Christopher Worth, Co-PI of the My ROAD Project
As a Supporter in a Healthcare Situation Practicing Dignity-of-Risk for a Loved One
This past week, my wife had a big surgery, but she’s doing really well and recovering fast!
I wanted to share how it felt to support her, especially on the day of her surgery. I have cerebral palsy and have had many surgeries myself, the last one when I was 17. So, I know what it’s like to be the patient. But being the supporter was new to me.
Right away, I noticed that Julie’s surgical team was focused on her. It wasn’t a bad thing, but it felt strange. I wondered if Julie wanted me to be more involved. What if she wasn’t as good at speaking up for herself? Would the team let me help more?
These thoughts kept going through my mind as the team asked Julie questions and talked to her positively. I sat in the corner, wishing I could help. I thought about how other parents and spouses might feel. The anesthesiologist looked at me, maybe I made a noise, but she just turned back to Julie.
This happened all morning. It wasn’t until the surgeon acknowledged me that I felt less isolated. I usually don’t help Julie express what she wants in our daily life together, but in this moment in the hospital, I really wanted to. I mean, the desire was super strong! This made me think about supporting someone who needs more help. The doctors did the right thing by focusing on Julie, but I had extra energy thinking about how to support her. I realized later that I probably did the right thing by holding back.
As her husband, I know Julie can make her own decisions. My job is to make sure her wishes are followed. There were times I wanted to do everything for her, but I know she wouldn’t want that. Once, in her hospital room, she was confused by what the nurse wanted her to do, but she was too drugged to ask for help. I spoke up and helped guide her.
What did I learn about being a supporter in a stressful situation like this? It reminded me of what I learned as a community educator: to respect people’s dignity, we must not always try to protect them. I realized I wanted to speak for Julie, but I had to wait for the right times to help. Being present and not overbearing is important. I thought, if I were in this situation, what would I want? Then I compared that with this question, What would Julie want? If I saw too much of myself in my mind’s answer, I chose not to say anything. Start there and with those questions, and remember, being a supporter is about the other person, not you. It might seem obvious, but it’s easy to forget.
In the end, being a supporter in healthcare is important. You might not do much physically if you’re doing it right, but being present and aware is what the person might need most.
