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Helping Patients Voice What Matters to Them: Decisions are About More Than Information

Tuesday, August 22, 2017
Geri Lynn Baumblatt and Victoria Baskett Victoria Baskett
Victoria Baskett

“What do you want your quality of life to be like?”

It was a question Victoria never expected to hear from a surgeon, before engaging in a dialogue about his recommended treatment plan. In that moment, she was in control. In a vulnerable situation, she had the opportunity to be the author of her own story.
 
Victoria’s Story
Just a month before this conversation, I’d been rapidly intubated while still awake to secure my airway, which was closing due to an infection called Ludwig’s Angina. Maybe it was genetics, maybe it was the intubation, or both, but a tremendous amounts of scar tissue formed on my vocal cords. This left my voice sounding raspy -- like I was a chain smoker or always sick.
 
The recommended course of treatment was 6 months of speech and vocal therapy, followed by surgery if my voice hadn’t improved. Six months of vocal and speech therapy passed and surgery was still on the table.
 
My physician laid out both options for me and explained the pros and cons of each. For me, the recent memory of being intubated while awake was still fresh my mind. So, the idea of choosing to go through surgery, was frightening. While he explained that I’d be fully asleep for the surgery, he also took the time to understand my emotions. He saw that information alone wasn’t going to change my mind. And he respected my emotions, which created trust.
 
It helped to know that it wasn’t a limited or forced suggestion, but simply an option for my own personal quality of life. His opinion wasn't interjected, or I didn’t feel like it was. He shared his knowledge, and I had the opportunity to share my thoughts and emotions and make a choice. I feel like people can never have too much information. Knowledge is power when making a decision about your life. That said, our experiences and emotions are important.
 
So, I had to answer that quality of life question. What did I want? And How did I feel? I decided it wasn’t right for me.
 
There’s a lot of research and articles on patient reported outcomes and personalizing care leading to overall improved outcomes. I believe that personalizing care is essential. When we switch to the paradigm of person-centered care, we give individuals the ability to decide their own destiny. When you take the time to truly develop relationships with individuals, you have the opportunity to learn what’s important to them and to personalize care to fit their dreams and aspirations.
 
What’s in a Voice?
Two of the most common phrases I hear from strangers when they hear my now-raspy voice:
 
“Are you sick?”
“Oh no, you’re losing your voice!”
 
So, will I ever have surgery on my vocal cords? Well that’s to be determined! For one thing, I like sounding like Nora Jones -- being able to sing like her would be even better.
 
For me, my voice is also a reminder that I survived an obstacle I wasn’t expected to see the other side of. But more importantly, my voice is a reminder of a surgeon who put down his pen, looked me in the eyes, considered my thoughts and emotions, and let me determine my future -- a situation and dialogue I did not know or believe I would ever experience.
 
A Voice Lost and Gained
The experience changed my voice both literally and figuratively. I lose my voice frequently. It used to be a deterrent for me in loud situations because I couldn’t talk to people, so I just wouldn’t go to parties or events. But I talk every day for work, I do public speaking, and I interact with people daily. It causes challenges, but Throat Coat® tea and voice exercises have helped me through those challenges. But I found my patient voice, articulating and advocating for the patient experience.
 
The Takeaway
Patients need information, but information alone is not enough to make tough decisions. People also need to process their emotions. Luckily, Victoria didn’t have to make a now or never decision about surgery, so her anxiety about surgery didn’t cut her off from any options. But in other situations, patients may have a one-time choice where emotions about a new diagnosis or situation may overwhelm them. Research suggests clinicians can help address patient stress by discussing treatment options only after the address emotions. Otherwise, patients may not be equipped to move from learning about their condition to making a decision or taking behaviors to manage it.1
 
  1. Nunes, et al. A diagnosis of chronic kidney disease: Despite fears, patients want to know early. Clin Nephrol. 2016 Aug; 86(2): 78–86. Published online 2016 Jun 27. doi:  10.5414/CN108831



Victoria Baskett - Victoria Baskett is the Director of Patient Experience at Wayne UNC Health Care in Goldsboro, North Carolina. She is also the Founder and President of the Victoria Baskett Patient Safety Foundation that works to “Improve patient safety by educating patients and families on the importance of finding their voices.” Misdiagnosis, delayed diagnosis, and emergency surgery all led Victoria towards her mission to transform healthcare through patient and family advocacy and safety. Along with her career and non-profit, she currently serves on the North Carolina Quality Center Patient and Family Advisory Council and Board of Trustees, the Patient Safety Movement Handoff Communications Workgroup, and The Beryl Institute’s Global Patient and Family Advisory Council. @vbpatientsafety
Victoria Baskett Patient Safety Foundation (facebook) 

Tags: communication, personal healthcare, shared decision making, empathy, engagement, experience, listening, patient
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