Updated: Mar 22
How do you dehumanize health care? It's easy: turn people into numbers and ignore the patient story. People in health care say they believe in stories, but do they? Do they really?
Let’s start with the massive elephant in the room: the pandemic. Each day our public health officials appear on television and trot out ‘cases’ and ‘deaths’ and never ever talk about the real people who have been sick and recovered. (Have people actually recovered? I have no idea because nobody shares patient experience stories). Those who have died from COVID-19 are not mentioned beyond scripted thoughts and prayers.
Last week I heard this story from a man, in his 40’s, who had COVID in March. He told me that there were 15 people on his job worksite who got sick. He was "on his back" for 5 straight weeks. He lost a ton of weight and muscle. It is only now, more than six months later, that his lung capacity has finally returned and he can breathe easier.
Now, this man’s case of COVID was never even counted by officials. He’s never had a chance to tell his story about being sick because nobody has bothered to ask him. His suffering is invisible and forgotten.
I wrote last month about People Are Not Numbers. I continue to bang on this drum with COVID, but let’s dig a bit deeper into how health care really feels about stories.
I have a Bachelor of Arts in English. I got this degree after transferring out of a Bachelor in Science of Nursing program. At the time, I was mocked, had my university tuition cut off and thrown out of the house…for getting the ‘wrong’ degree. This discussion about humanities in health care is personal to me.
Since then, I have heard more than one parent say: I told my kid that I will pay for a science degree, but not an arts degree.
Do people who work in health care – the vast majority of them with graduate science degrees - really respect the arts?
Another story I told in my book is of a Patient Experience person at the cancer hospital informing me she wasn’t interested in my story about my radiation treatment because:
“We no longer have the ability at the cancer hospital to share individual patient stories…as the policy at the hospital restricts us from privileging one story over another.”
That means they share NO patient stories, in any form. Walk into the cancer hospital and you will see the remnants of an old photography contest for STAFF on the walls, but nothing depicting the patient story, save for the huge fundraising billboard outside from the Foundation – which of course is trumpets a good news story. (Spoiler alert: Just like COVID, most patients don’t recover fully from cancer and many cancer patients actually die. Alas, the Hospital Foundations don’t want to talk about those stories).
Let us not forget that patients talk about themselves through stories. I don’t describe what’s important to me by reading out my lab results or tumour pathology report. If you don’t demonstrate that you respect stories, you also don’t respect what patients have to say.
I have many other questions about how stories are represented in health care:
In clinical settings, how much time is a patient given to share their story without being interrupted, dismissed or minimized? How about stories from women? Or people who aren’t white? Or people who are disabled? Or who are LGBTQ2+?
How often are patients asked for their feedback? Are we permitted to tell our stories beyond narrow pre-determined patient survey questions?
How are patient stories represented in health research? Is qualitative research valued as much as research based on data?
How often are patient stories co-opted, used as case studies, and not told by the patients themselves?
At the organizational level, are patients asked to share their stories in committee meetings and boardrooms when decisions are being made?
How many patient speakers are there at health conferences? Is your panel stacked with health professionals and one token patient? Are patient speakers being paid like everybody else?
Are patients given safe spaces to tell their stories, or do patient speakers get the sh*t beat out of them on stage by Emergency Department staff when they talk about kindness?
How do patient storytellers know that their stories even made a difference? What proof is given to us, when we strip ourselves bare and make ourselves vulnerable in the sharing of our stories – that our stories improved health care, even a little bit?
How often are patient stories solicited and accepted in health academic journals?
Are physicians-who-have-become-patients stories the only ones that are listened to?
Whose patient stories are being told? Whose patient story is missing? Are the stories shared a reflection of the people sitting in the waiting room? Or is it just a Groundhog Day of patient stories told by middle-class, middle-aged, privileged white women like me?
Saying that you believe in stories reminds me of saying you believe in patient centred care. Everybody in health care says they believe in patient centred care, but ask real patients if patient centred care is consistently demonstrated in health settings on a personal level, you will find a different answer.
Are individual stories truly respected in health care? Or are storytellers dismissed as soft, minimized because they are too emotional, and shrugged off because they are an N of 1?
Show me the proof that individual stories really matter in health care. All I see lately are our public health officials hiding behind numbers and cases. I’m not suggesting that stories replace all the beloved charts and Excel spreadsheets, but surely stories can complement numbers to offer a more fulsome picture.
Numbers depersonalize health care. As more and more people get sick with COVID, it is clear to me that this reliance on data and information is not working as a public health communications strategy.
The time has come to provide equitable and safe opportunities to support patients to tell their own stories too. For the life of a human being is so much more than a simple data point on a graph.
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