Medicine is 'ultimately a humanistic and human endeavour'

Photo by Julia Soudat for U of T News

By Louise Kinross

Last April, Dr. Arno Kumagai became vice-chair in education for the Department of Medicine at the University of Toronto. He’s an endocrinologist from the University of Michigan who studied the molecular mechanisms of diabetic complications before turning his attention to medical training. At the University of Michigan Medical School, he developed a course that paired students with patients for regular visits at their homes, to hear firsthand what it means to live with a chronic illness. He continues to run a small clinical practice as a diabetes 1 specialist. Dr. Kumagai is giving a keynote presentation at Holland Bloorview’s Teaching and Learning day on March 8 called We Make The Road By Walking: Stories, Dialogue and the Possibilities of Care. BLOOM interviewed Dr. Kumagai about how stories can influence care.

BLOOM: In your education role at U of T, you talk about the importance of the human elements of medicine.

Dr. Arno Kumagai: Because we deal with people, medicine is fundamentally an ethical activity. We have to take into consideration that we’re dealing with another person with a background, personal values and relationships, and we need to have that first and foremost in our mind at all times. Often, it’s easy to forget that when we’re looking at numbers and physical or physiological processes, and how sometimes they can go wrong, or cause issues with function.

The bottom line for me is that yes, medicine involves science, but it is ultimately a humanistic and human endeavour. Where we often go wrong is when we treat other people as objects. We assume we know who they are, and what they want, and how they would prefer to live their lives. By making assumptions, we may be completely wrong, and we impose our own values and perspectives, without asking ‘What is it that’s important to you, and how can I help you?’

BLOOM: I understand you’re talking about the importance of stories at our Teaching and Learning Day. How can stories influence care?

Dr. Arno Kumagai: In teaching medical students and physicians in training, stories have a really powerful educational role, but not only that, they have a very powerful human role. Stories are human beings’ most effective way of communicating the meaning of experience. The way we transmit meaning from one person to another or one generation to another or one group of people to another is through storytelling.

In patient care, doctors tell each other stories about patients using a specific type of language that is very different from the story that a person with a chronic illness would tell about themselves. The patient’s story may be unrecognizable to the clinician, and the clinician’s medical history may be only vaguely recognizable to the person who actually experienced it.

Often times, physicians see things only in terms of impairment of function, but it’s really the stories of the obstacles that are encountered in society and daily living that they need to hear. I work with people who have diabetes and, as a result, have disabilities, and it’s through their living stories that we understand the challenges they face. It’s not just a matter of ‘I can’t get upstairs’ or ‘I can’t hear someone talk when I’m in a crowd,’ but ‘I’m afraid to tell my classmates that I have diabetes because I don’t want them to look at me differently.’

Stories help us to begin to take the perspective of someone else and to really explore our own way of thinking and living and to reflect on who we are. The other thing with stories is that they often contain surprises. They tell us something we weren’t expecting, or that goes against our assumptions and beliefs. They have the potential of making things strange. You take an assumption and a story may challenge that assumption.

BLOOM: How are you incorporating stories into the medical curriculum at U of T?

Dr. Arno Kumagai: My work in the past at the University of Michigan was with first and second year students. But most of my work here is with post-graduates.

One of the important ways we incorporate stories is by dialogical teaching. We’re very interested in the power of dialogue to open perspectives and new ways of seeing. We train clinicians to use moments of dialogue in the clinical environment to stimulate reflection and storytelling.

We don’t pull people out of the clinical environment and give a lecture, we train faculty to ask questions as part of rounds, or on the fly.

BLOOM: I read a paper where you talked about the importance of creating space for medical students to talk and reflect about both ‘the tragedy and wonder’ of medicine. And that these spaces don’t involve a specific location, but are more like mental pauses that take place in the corner of a ward at any time of the day.

Dr. Arno Kumagai: Yes. As an educator, what is the one question I want to ask a student that will get her to think about the social or humanistic or social justice issues about a patient?

Let’s say an attending physician tells me: ‘I have a 34-year-old woman who’s a single mother of a young child and works downtown at a restaurant. She has type 2 diabetes and is non-compliant with her medicine.’

I would say: ‘What does non-compliant mean to you?’

‘She’s not following what we asked her to do.’

‘Well why?’

‘I don’t know.’

I would encourage the person to think about who this patient is, and what she does. She works in a restaurant and is a single mother. Restaurant workers in the U.S. don’t make enough money to afford insurance, but make too much money to be on public insurance. It’s likely this single mother has no insurance and her medicine costs her upwards of $300 to $400 a month. So it comes down to whether she feeds her kid or takes her medicine.

You want the experiential part of the student seeing the person in front of them tell a story about how they struggle. And for many it will trigger an empathic response of ‘Wait, something is not right about this, and I need to do something.’

BLOOM: You said there’s a distinction between a dialogue and a discussion.

Dr. Arno Kumagai: A discussion is more goal-oriented. It could be about a treatment or discharge plan, and there’s a solution at the end of the discussion.

A dialogue is very different. You bring in your whole self—your background, your values and experiences—and interact with someone in a way that may not result in a single solution. In fact, it may spark more questions or avenues to explore.

For example, if I’m an educator in the ward, I may want to tell a story to residents of an ethical dilemma I’ve run into, but not tell them the ending of the story.

You want to get them to really engage themselves and think deeply about what would they do? Their values, and the way they look at life, may be very individual, so they bring that all in and talk about it. You introduce stories and talk about paradoxes and ask ‘What would you do?’

I don’t want the attending physician to assume ‘I have the right answer.’

BLOOM: It sounds like you’re encouraging them to be able to think more flexibly.

Dr. Arno Kumagai: Health-care providers often assume there is one correct answer and they get it and give it to the patient. Instead of seeing that there are multiple voices constructing the truth through an exchange. That becomes a very different picture that is much more fair and democratic.

When I see a new patient as a diabetes specialist, I’m very cognizant that I need to engage in a dialogue with that person. One of the first questions I ask is ‘What is it that you do really well?’

Some are musicians or runners or video-game players or artists and they’ll start talking about that, and it gives me an idea of who they are and then we’ll talk about diabetes. I want to figure out their strengths, instead of their deficits, and build on them.

It’s an exploration, a partnership, a collaboration. We’re trying to figure out what works for them, with their input.

The answer will be different for different people. That’s why cookbook approaches in many ways don’t work.

That’s very different from thinking I’m the expert, and I have 45 minutes to figure out a solution.

BLOOM: So, in fact, the answer can’t be found by the doctor in isolation.

Dr. Arno Kumagai: No, it can’t. A monological approach is often how we think about medicine: doctors have the answers and patients come for the answers. You can sit in a room by yourself and use analytical skills that are often purely cognitive, and have wonderful thoughts. But that doesn’t involve an exchange with another person who has a background and history, and the doctor actually committing to engage his or her own background and history and perspectives.

I always tell patients that I know a lot about delivering insulin and the complications of diabetes and challenges of treating it. But I know virtually nothing about living with diabetes. And I’m not going to presume I do.

BLOOM: How can we ensure that practising doctors continue to create spaces to reflect on the human and ethical questions of medicine?

Dr. Arno Kumagai: That’s the million dollar question. This is nascent. We’ve been doing this with medical students and graduate students, but what about practising physicians, in terms of continuous professional development?

BLOOM: I was at a meeting here where you spoke about how the best learning is often sparked by the discomfort that a story produces.

Dr. Arno Kumagai: Some of the most effective learning happens when people are forced to question their own assumptions. They’re put into a position of discomfort that disturbs the patterns of assumptions they may hold of themselves and the world. People talk about this ‘stepping out of the comfort zone’ or ‘thinking out of the box.’ Conflicting emotion or experience forces us to think. Not all discomfort is a bad thing.

Dr. Kumagai was recently appointed as the first Dr. F. Marguerite Hill Chair in Humanism Education at Women’s College Hospital.

Read More

Who were the disabled people killed in Tokyo?

Last night I saw a social media link to a story that included photos of people killed in recent mass shootings.

I clicked on it, thinking for a second that it might include photos of the 19 adults killed in a Tokyo home for people with multiple disabilities while they slept in the early hours of Tuesday Tokyo time.

It didn't.

A quick search showed that when 49 people were killed in a gay nightclub in Orlando on June 12, their photos, names and details about who they were as people, appeared in media two days later.

Do you think there's a news outlet that covered the Tokyo massacre that has attempted to secure photos of the victims as a way of telling their stories?

I don't think so. 

To be honest, the social and mainstream media reaction to the deaths has been muted relative to coverage of other mass killings. 

Yesterday, science writer Emily Willingham suggested why that might be the case in this Forbes piece: This Is What Disability Erasure Looks Like.

Willingham notes that the suspect, who had worked for years at the home he targeted, made no secret of what he intended to do, even warning the country's parliament back in February.

"I envision a world where a person with multiple disabilities can be euthanized," he wrote, outlining his plans to "wipe out 470 disabled" people at night time, when staffing was low. He tried to pass the letter to the speaker of the lower house of Japan's parliament and was hospitalized for two weeks as a result.

But the facility that housed the vulnerable people he threatened to kill, Willingham says, appears to have not been adequately warned and prepared.

"What if his letter had instead referenced his intention to kill children or teachers or restaurant-goers?" she asks. "I'm guessing that authorities would have paid a lot more attention to it."

The reason, she suggests, is that as a culture we are quick to accept messages that suggest people with disabilities are less than human. Messages such as: "Better dead than disabled."

The reason we post photos and tell stories of innocent people killed in massacres like this is to assert their humanity.

I wonder how far news outlets will go to do that in this case? I, for one, am waiting.

Read More

Telling clinician and patient stories improves care

By Louise Kinross

“Paying attention to stories makes us better doctors, nurses and healers and is also good for patients, clients and survivors,” said Dr. Allan Peterkin a professor of psychiatry and head of the Program in Health, Arts and Humanities at the University of Toronto.

Dr. Peterkin was kicking off the Art Heals Health symposium yesterday that brought together clinicians, artists and educators to talk about how art can be used to improve healthcare and vice versa.

Dr. Peterkin’s talk looked at the healing power of stories.

Medicine has tended to “take the story of the provider and the person out,” Dr. Peterkin noted, and to distil to a few diagnostic words the patient experience “in a way that doesn’t do justice to it.”

This is a response to evidence-based medicine, he said.

In contrast, stories are about “what’s unique and particular” to a person, and care is improved by the clinician’s ability to listen to, tell, and make meaning out of stories over time.

Methods for doing this include reading and discussing medical fiction or illness stories by lay people and writing in response to a prompt that helps clinicians reflect on their work.

Clinicians "almost always write about things that have troubled them,” Dr. Peterkin said. Reading and discussing texts and writing about their experiences makes clinicians better able to communicate and connect with patients and families.

Dr. Peterkin noted that research shows that reading poetry and novels increases the level of empathy in any reader because it helps us imagine being in another person’s shoes. “Your worldview is being stretched by characters that are different from you. To try to understand them you need empathy.”

Dr. Peterkin noted that stories engage both the left and right sides of our brain and make us pay attention to detail and words. “One word in a poem can have 10 different meanings to 10 readers.” This leads to “narrative humility” in clinicians. “We may think we know what patients are saying, but we may not be on the same page.”

“Write about a mistake” or “Write about a goodbye” are examples of prompts for clinicians or healthcare students.

In narrative groups clinicians are asked to: “write about something that matters to them, or is unprocessed; include a beginning, middle and end; write as if you were telling a friend; and show what happened and how you feel about it.”

The act of organizing the story on the page “reorganizes the way we look at things and challenges our pre-assumptions about a story,” Dr. Peterkin said. We can revisit stories and slowly, at our own pace, make meaning out of them.

The other health workers who listen to a piece being read aloud in a narrative group can be “helpful editors as opposed to critics,” Dr. Peterkin said. They're often able to point things out that the author may not have seen in his or her writing.

A new four-day workshop on narrative healthcare is being offered by Mount Sinai Hospital and the University of Toronto in June 2016. Check out Narrative Healthcare Atelier & Certificate Program.

Read More