Patient Perspectives: Telling our stories is critical to improving care

“So, what do you think is going on?”

It was the first time we had met – me, a 30-something mom of two, a year into life with a rare blood cancer; him, a late 50s GP in a local family health team. People with last names that began with an M, N, O and P were randomized to his case load after my regular doctor left to practice in another country, he mentioned after a warm greeting.

His question caught me off guard. It was the first and only thing he asked after quietly listening to me nervously describe my symptoms. I supplied the relevant information like a boss: it had been going on for a few months; the pain was like a knife carving deep into the right side of my head; it was sporadic and inconsistent and occasionally woke me up at night; also, sometimes it felt like I couldn’t breathe, and there’d be pain in my chest; other times there was dizziness and nausea.

There was something else though. I was worried. Really worried.

In fact, I was pretty much convinced it was something sinister, like a blood clot or lung cancer. I didn’t say that, though, for a million reasons. Mostly because I didn’t want him to judge me before getting the care that I might need. I was careful not to present like someone anxious and hyper-focused on her health. That I was a woman complicated things further – I was well aware of the tendency for health-care professionals to minimize women’s pain, particularly if they were perceived as “dramatic” or “hysterical.” Catastrophizing with a scary self-diagnosis was risky if I wanted to be seen as a credible witness to the symptoms.

The thing was, I was absolutely and most definitely anxious and hyper-focused on my health. Just 12 months before, I had been completely surprised by a blood cancer diagnosis discovered after tests for what was thought to be an insect bite. A couple of months later, a chest X-ray revealed what a nurse had called a “mass” – turned out to be a misread shadow on the scan. And a few weeks after that, I found a lump in my left breast – fortunately, a cyst. It had also been a banner year for scary family diagnoses: my dad with early-onset dementia and my brother with an aggressive liver cancer. It made perfect sense then, as I sat in the bright exam room with a kind man who held the ends of the stethoscope around his neck, that I might be, well, freaking out a little and overwhelmed by that itchy sense that anything was possible.

So, when he asked me what I thought was going on, I laughed uncomfortably. As anxiety tied up my stomach, I went for it, blurting out, “A blood clot? Lung cancer?” And, because why not: “Some rare neurological disease that doesn’t have treatment?” He didn’t even blink. He asked me to tell him a bit about my cancer treatment (at that point it was uncertain if it was working the way it needed to) and then about my family (sick dad and brother), and what I did for a living (unemployed but looking). It all took about 10 minutes, but when I was finished telling my story, he stood up to examine me. I expected either a referral for tests or to have to debate why I needed a referral, but then, explaining that he had read through my oncologist’s notes, he said, “I am going to check you out, but let me tell you why I think it’s not any of those things.”

It was a brilliant exercise in empathy, listening and compassion – all things that, of course, can be equated to authentic care.

It was a brilliant exercise in empathy, listening and compassion – all things that, of course, can be equated to authentic care. But even more than this, he used my stories to look beyond what he saw in the few moments of time we were together to surmise whether there was something else besides the obvious that had brought me to his office that day, and how best to tailor treatment to meet my particular needs. Essentially, he believed that not everything was as it seemed.

I have since learned about how the cultivation of narratives in his practice helped him make sense of health and illness for so many:

• The woman who repeatedly sought tests to confirm Parkinson’s disease despite continued negative results but then disclosed that she was exhausted caring for her father who had the progressive neurological disease;
• The man who refused in-person clinic appointments despite his focus on obtaining necessary screening for a chronic disease and then shared that his experiences as a military officer made him afraid of sewers that he thought resembled mines – the clinic was surrounded by sewers;
• The woman who suffered with insomnia whose story included a vicious rape after a man broke into her house as she slept.

Certainly, medicine practiced based on patient narratives – narrative medicine — is not a new concept. Originating at New York’s Columbia University – the term ‘narrative medicine’ was coined by Columbia professor of clinical medicine Rita Charon in 2000 – narrative medicine is taught all over the world, including at the University of Toronto’s Narrative-Based Medicine Lab. In fact, Charon says that despite limited data on the benefits of narrative medicine, there’s enough to indicate that it contributes to fewer days in hospital and less use of pain medication. Narrative medicine can also help doctors be better doctors.

Of course, many people who work with patients in an advocacy capacity already understand the power of narratives – it’s how we improve outcomes and shift policy. Go ahead and implement the fanciest quality and performance metrics – as important and necessary as they are – but nothing will tell you more than simply asking someone how their illness impacts their lives and listening closely to their answers.

However, although social media is filled with posts about the benefits of storytelling in health care, that there are now actually “official” jobs that focus on telling the stories of patient experience and making decisions based on them by people with lived experience (check out here and here), as well as an intriguing prolificness of narrative medicine programs in education, lived experience and patient stories are not unquestionably valued. A definite loss, not only for patients, but also for health-care providers who are passionate about providing care that’s meaningful, effective and makes life better for their patients. But the more we talk about the importance of stories, perhaps the closer we get to health care that’s better for patients.

My doctor retired a few years ago. Our last conversation included an introduction to the straight-out-of-school doctor who would be taking his place. He asked her what the secret was to being a very great doctor. She smiled and said, “Never stop asking questions.”