Reflecting on stories in the time of COVID-19

This blog post is generously contributed by Sue Robins, a writer in Vancouver, Canada.

Sue's book Bird's Eye View: stories of a life lived in healthcare has recently been published.

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During this pandemic I’ve been feeling deep gratitude to all health care workers. My daughter is a paediatric RN and I’m feeling especially protective of anyone who works in a hospital right now. In Vancouver Canada, we all emerge on our balconies at 7 pm to bang on pots and pans to express our thanks to those who are risking their own health to care for sick people.

Last year I wrote an entire book about health care that offers constructive feedback for health professionals. I’ve been feeling a wee bit guilty about the chapters that are critical of the lack of humanity that was demonstrated to me during my cancer treatment three years ago.

Should we be sharing patient feedback – other than compliments or kudos – in this time of grave crisis?

I believe we still need constructive feedback about interactions with health care. I’ve seen snippets online about cancer patients not getting treatment. Doctor’s office phone lines that never answered. Delayed surgeries. Lack of follow-up after recent hospitalisations. Inability to get prescriptions refilled. It is important that we share these experiences.

I’ve seen really good stuff too: the shift from in-person visits to phone calls and telemedicine (which patients have been requesting for eons). More transparent sharing of information. Stories of tender care in hospitals. Expressions of compassion from health workers, who suddenly now understand the fear patients experience when we get sick.

Do we throw patient-centred care out the window in times of crisis? I say no.

In the past few weeks, we have all been forced to look at our own mortality. I wouldn’t have wished this fear on anyone, but we collectively carry this fear now, including doctors and nurses.

Do we throw patient-centred care out the window in times of crisis? I say no. The foundational elements remain the same: Respect. Dignity. Information Sharing. Partnership. In fact, we need a type of relationship-based care more than ever.

Information sharing includes giving feedback about care. We need stories today to balance out all the graphs and numbers.

Alas, crisis is a real narration killer. Arthur Frank’s The Wounded Storyteller tells us that it is challenging to tell a story during a personal health crisis. The whole world is in a personal health crisis; we now globally have this pandemic in common, for good and for bad. But despite how challenging it may be, sharing our experiences with the health system is still crucial in this time of COVID-19.

As a writer, I’ll say there is a difference between sharing an experience and telling a story. Experiences tend to be chronological: this happened and then this and this. Stories are more reflective and written with a key message or theme in mind. They have a story arc and a beginning, middle and end. There are often lessons shared – both a self-realisation from the author and a greater lesson for the readers.

I don’t have the capacity to craft a story right now. I can, however, write down my experiences – simply by writing what has happened. When I’m distant from this crisis, I will be able to look back and pull the lessons out of my journal entries. For now, I can document what’s going on by tweeting and scribbling down a few snippets of my day.

Your health care experiences still matter, despite this pandemic

If you are interacting with the health system, please continue to document what’s happening to you in some way. This goes for patients, families and health workers too. Under times of great stress like these, time becomes fuzzy and we can forget. Writing, or other forms of creative expression, like photography or art, can help us remember.

You may not be able to craft fully formed sentences or offer profound insights and that’s okay. Documenting what’s happened can connect us together, ground us, get thoughts out of our heads and set the foundation for future healing. This might include submitting your experiences to Care Opinion too.

Your health care experiences still matter, despite this pandemic (or maybe because of it). There are learnings from each other even with the simple chronological documentation about what happened. There is gold in our shared experiences.

And if that’s all we can do right now, then that’s enough.

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Before the COVID-19 lockdown began, we were lucky enough to have a visit from Sue Robins and her family, travelling from Canada.