Patient Engagement

Disappointing Outcomes Do Not Mean Disappointing Care: Patient story telling

Acting on the belief that patient perceptions of care matter to quality and that hearing patient and family stories directly from our patients provides valuable insight about our ability to provide patient and family centred care, a curriculum of patient experience centred on patients and family members sharing their stories from patient care has been developed. We have some excellent evaluation results indicating that this approach helps influence health professionals to sustain compassion in their communication and have better awareness of the processes and systems of care delivery from a consumer lens.  As we implement stories in our in-hospital curriculum to emphasis success and recognize failures from the patient perspective, we have a need to understand any unintended consequences of vulnerability for the volunteers who share their experiences with the audience of frontline clinical staff, service providers, hospital leaders and Board Members. We have started to inquire and document how patients are impacted by sharing their stories as we see this may force them to recall a traumatic or difficult moment so we can ensure support of the patient through the emotional process of writing and sharing their stories. While the pragmatics of a patient storytelling program can be captured with toolkits and session evaluations, we appreciate that there are more complex implications to measuring our success. Ensuring we care well for the storytellers and support the vulnerability they must embody when they share their stories and then dialogue with the audience who reflect back their thoughts and reactions is a key element of the program success.

Lauren Lee recently joined our hospital’s storytelling program. I asked Lauren to write about her experience to help us understand the personal impact of sharing her story.

– – –

It’s funny to think of myself as a storyteller. Quite frankly, I didn’t even know that I had a story to tell. Of course, I knew that I’d certainly had an experience, but I had never turned my mind to whether that experience would have an instructive value for others until I was invited into the world of patient-centered care and met people who care deeply about such principles.

My health care experience was a rollercoaster ride. I underwent breast cancer surgery, which lead to many complications and subsequent surgeries. All complications were unexpected and unlikely, with some almost unheard of. However, my disappointing outcome did not correlate to disappointment with my care or caregivers. In fact, quite the contrary, I felt cared for and, more importantly, cared about every step of the way. When the game plan is thrown out the window you are only left with the people in front of you, hoping that communication and trust will see you through. And it did.

This experience became my ‘story’, and now I tell it as an example of how a poor outcome does not necessarily equate to poor care and how simple kindnesses and humanism mean the world at any time, but especially when things do not go according to plan.

Specifically, in terms of telling my story, I had anticipated the emotional or cathartic benefits of having my story heard and acknowledged by a supportive and engaged audience, but I was pleasantly surprised with what a satisfying intellectual experience it became as well. Any significant health issue leaves you with some baggage, but as some of the raw emotion lessens with time there is an opportunity to really analyze and unpack and good and bad of the experience and see what possible lessons can be passed on. This process challenged me to look at my story from different angles and to search for those universal concepts that may enhance the patient experience going forward — an exercise that has helped me personally and, hopefully, may benefit others in the future.

I feel feedback from hospital personnel is essential in the storytelling process. I believe that sometimes the story is so personal or emotional that it is somewhat difficult to hone in on the ‘teachable’ or relatable aspects, which someone from the outside looking in may be better equipped to provide. I know it can be uncomfortable to weigh in, especially on an individual’s personal story and feelings, however, from a speaker’s perspective, I know I just want my story to reach the audience at its greatest impact and for me all suggestions and feedback are welcome in order to facilitate that goal. To this end, I believe feedback is key both prior to the storytelling, such as in the writing process where the narrative is formed, as well as post-sharing. It is very important for the storyteller to know that the story ‘hit home’ and post-sharing feedback is a wonderful way to demonstrate that the takeaways have been internalized by the audience. Storytelling can feel cleansing or therapeutic, however, we understand that this is not a therapy session and there is a much greater purpose at play. My story is not for me, but rather it’s for the collective to learn from and grow. There are countless benefits to telling your story, all of which pale in comparison to the acknowledgement that you’ve been heard.

– Lisa Hawthornthwaite and Lauren Lee, August 2015

About the author

Lisa Hawthornthwaite

"Fostering A Culture of Patient-Centred Compassionate Care: The Development of a Curriculum of Patient Experience for Local and Provincial Dissemination" …

Learn More about this Author

Leave a Reply

Your email address will not be published. Required fields are marked *

Want to learn more about AMS and the people and projects we fund?
Follow us on twitter.

Interested in learning more about AMS funded opportunities? Sign up
for our newsletter to gain access to our funding calendar (this newsletter
link scrolls to the footer.)