Translator: Tanya Cushman Reviewer: Peter van de Ven
Thank you.
So, I'm going to talk to you today about being a doctor and a patient
and about what I've learned along the way.
And I'm going to tell you
what I think is the number one problem with our healthcare system today,
and how I, in my own small way, am trying to do something to fix it.
My story starts with becoming a doctor.
Chapter one.
I went to medical school just a few blocks from here,
and my years in school fed that part of me that loved narrative.
In medical school, in addition to learning about the science of medicine,
we spend a lot of time learning about human connection:
How do you conduct a patient interview?
How do you listen well?
How do you make people feel comfortable?
At my school, we had a course called "Patient-Doctor"
that was focused on the importance of developing this relationship.
And this was awesome
because, as part of our learning,
we had hours and hours of time to talk with people,
and I loved this.
Even when we were rotating in the hospital, as doctors in training,
our primary job was to collect stories.
I still remember my first patient
that I had on the medical wards as a third-year medical student.
I'll call her Pat.
Pat was a 75-year-old woman from a nearby Boston suburb.
She had severe emphysema from years and years of heavy smoking;
she had the oxygen tubing in her nose at all times.
She had ten kids,
you know, rotating handful of them at her bedside nearly constantly.
She was a tiny, tiny little thing,
but also a powerhouse,
sinewy and tough, inside and out.
She was sort of crusty and harsh,
but at the same time, soft and warm.
And I spent a lot of time sitting on Pat's bed, holding her hand,
and listening to her tell stories about her life and about raising her kids.
And we laughed a lot together -
she had that throaty smoker's laugh.
At one point, she told me that she was afraid to die,
and she cried.
I still have the letter that her son sent me
following her death.
He thanked me for spending time with his mom,
but I wrote him back and thanked him
because I learned a lot from Pat, from the whole family,
and my time with Pat was quite meaningful to me.
Things changed, though, when I became a resident,
you know, bogged down with my checklist
of all the things I needed to do to "manage" my patients.
Vital signs, I's and O's -
or what came in and what went out in 24 hours -
quick exam, perfunctory note in the chart,
running around from room to room on very little sleep
to try to get my job done.
The system did not support human connection.
I have a shameful memory that I can't shake.
In the corridor in the hospital one morning, after a sleepless night,
sort of exhausted and frazzled,
running around like a crazy person
trying to get my work done before morning rounds.
And I walked by a patient's room on my way to somewhere else,
and I see, out of the corner of my eye,
an old woman reaching her arms out towards me,
and she calls out, "Doctor, Doctor."
And I try not to make eye contact, and I keep moving.
And again, "Doctor, Doctor, please, Doctor, I'm thirsty. I need some water."
And I think to myself, "I don't have time.
I can't engage."
And at that moment, it feels like it's about my own survival,
and I look down at the ground, and I walk faster.
I was so excited when I finished residency
because I thought, "Finally,
I'm going to be able to cultivate true relationships with my patients."
Easier said than done.
In the 15- to 20-minute appointments that are the reality of primary care today,
the stories get pushed out;
there isn't time.
Without running hours and hours behind schedule,
it was impossible for me to listen the way that I should have been listening,
or the way that I wanted to be listening.
And I'm not alone.
Discovering this after all those years of training
crushed my spirit and broke my heart.
I wanted to help people, to connect with them,
and yet I found myself trapped in this system
that made it feel nearly impossible.
It seemed entirely backwards to me
that I had to be thinking about how I was going to get my patient out of the room
as soon as she entered,
if I wanted to stay on schedule.
My colleagues agree with me:
doctors aren't happy with the way that medicine is today.
And patients aren't either.
And, in fact, we are sort of set against each other,
with doctors needing to push people through at an efficient clip,
and patients yearning to stop and be seen and heard.
Honestly, I think both patient and doctor would be a lot happier
if we had more time for the stories.
In 2008, I left primary care for urgent care,
which is what I do now.
And it's a crazy system,
where I feel like I have more time to connect with my patients
in urgent care than I did in primary care.
And this is because I'm not a prisoner of the 15-minute appointment.
I take a chart when I'm ready to take a chart,
and I'm freed up to delve into the stories of people's lives.
I love my clinical work,
and in urgent care,
my days are filled with many wonderful short stories,
but I miss the novel
that might be possible in my ideal vision of primary care.
Chapter Two: My story of illness.
This runs on a parallel track.
In 2001, I was a medical intern - that's my first year of residency.
I had a two-year old child, and my marriage was falling apart.
My husband at the time was a resident also.
I developed a tingling in both of my feet
that climbed steadily, steadily up my legs,
slowly, slowly, until it reached my belly button.
And I ignored it until I really couldn't anymore.
And then I reluctantly mentioned it to my primary care doctor.
I had a lumbar puncture and an MRI,
and in the face of a lesion, or a spot, on my spinal cord,
I was referred to a neurologist.
He was a brilliant guy,
his name on almost every research paper, well-respected in the field.
After waiting over an hour to be seen,
I was in his office,
sitting alone on the crinkly paper of the examining table
in my lovely paper gown,
feeling exposed,
when he told me, without any preamble,
that I likely had multiple sclerosis
and should start taking medication immediately.
He didn't leave any room for maybe,
and, remember, I only had one lesion at the time.
He didn't give me any time to adjust,
and he didn't ask me about my life:
medical resident, mother of a two-year old,
going through a divorce,
someone who had never been ill, an athlete,
someone who had overcome every challenge she'd ever encountered
by sheer determination and brute force.
No way.
I didn't feel seen or heard.
And I left his office; I practically ran.
And I didn't go back to see another neurologist
for close to five years.
That could have gone so much better.
I finished residency and became a full-fledged doctor.
I eventually remarried and had two more kids
and gained a step-daughter.
And after another bout of symptoms and a lot of time to process,
I went back and saw a different neurologist,
and I gradually came to accept my diagnosis:
I have multiple sclerosis.
I can finally say it out loud.
And I started taking medication in 2006.
But still, I kept it mostly secret for years,
really telling only my closest friends and my family.
And I had a lot of trouble integrating it into my life.
Somehow, I felt tremendous shame about my illness.
It seemed, somehow, like a failure or a black mark on my life or a weakness.
Maybe even a punishment for something I'd done,
because I hadn't exactly treated my body like a temple during my adolescence.
Would people think less of me?
Feel sorry for me?
Treat me differently?
I really wanted none of that.
I didn't want my MS to become my identity.
But it's part of me,
and living in that silence was painful
because I was cutting off a part of myself.
And living through that experience,
I learned a lot about what it means to accept illness into one's life.
And this has made me a better doctor.
Sometimes, as doctors, we just want to get the job done:
"This is what you have. This is what we think you should do.
Go to it."
Having been on the other side,
I can tell you that it is usually not that simple.
Accepting illness generally unfolds at a much slower, more unpredictable pace.
And doctors need to leave room for that.
Well, as doctors, it's our job to give advice based on our medical knowledge.
Ultimately, the doctor is not in charge.
And wearing the paper gown really drives this point home.
There is tremendous value, I think,
to sitting on both sides of the patient-doctor relationship.
So, while wallowing in my diagnosis, privately,
I felt very alone.
My friends and family were supportive, of course,
but you want them to think you're okay,
and they want to think you're okay.
And the structures of our daily lives, generally,
doesn't leave much room for true discussion
of our deepest fears and our vulnerabilities.
I didn't feel ready or personally suited to go to a support group,
yet I found myself craving stories.
I wanted to hear from other people who'd been given a diagnosis like mine,
but had figured out how to move forward in positive ways.
Even more, I wanted to hear from people
who'd learned how to recognize the positive aspects of illness,
the perspective shifts and the personal growth
that are possible
when we're forced to come face to face with the fallibility of our bodies
and, ultimately, our mortality.
But I couldn't find these stories.
Chapter Three: Integration and action.
So it was then, wrestling with my own diagnosis,
that I decided to start collecting patient stories
and to create an audio library of sorts
of patients' stories with different diagnoses
and to make this available to the public.
I started recording stories in 2010,
and over the time since then,
these stories have been featured on our local NPR station, WBUR.
And in doing this work,
what I've learned is that not only is the end product valuable
to patients who might have a similar diagnosis who want to listen,
but the process of sharing one's story is immensely therapeutic.
So, I bet you can guess by now
what I think is the number one problem with our medical system today.
We're not leaving room for the stories in people's lives;
there isn't time.
As we're spending more and more time trying to maximize efficiency,
we're actually creating layers between patient and doctor:
computer screens, electronic templates,
protocols,
these are all useful tools, of course,
but we're in danger of losing the patient.
How can we possibly understand and treat illness
without the context provided by stories?
Moreover, there's tremendous healing power in stories.
And I believe that in our current-day medical system,
we are not realizing this power.
In the old days of small-town medicine, maybe, but not today.
Research supports the value of stories and health.
Researcher Dr. Jonathan Adler,
who's a psychologist at Olin College in Needham,
focuses on this relationship between storytelling and health.
And in numerous studies,
he's shown that narrative meaning-making,
or storytelling,
is health promoting, in cases of both physical and mental health.
As an example,
there was a 2012 study which followed 47 psychotherapy patients over time.
And this demonstrated that constructing a positive narrative,
that is a narrative with increased sense of purpose and meaning,
preceded positive changes in mental health.
And research also supports the value of listening.
There was a study in 2011,
a randomized control trial by Dr. Thomas Houston and colleagues,
and this demonstrated that patients with difficult-to-control blood pressure
who watched videos of other patients
talking about living with and managing their blood pressure
had better blood-pressure control over time,
compared to individuals who didn't watch these videos.
Health Story Collaborative,
the 501(c)(3) organization that I started last year,
aims to apply this knowledge,
both scientific and intuitive,
of the power of stories.
We focus on storytelling as a therapeutic process,
and we're committed to keeping the patient voice alive in healthcare
and to harnessing the healing power of stories.
Our current initiatives include our audio library,
where we're archiving stories of illness and healing
and making them available to the public;
our healing arts initiative,
which focuses on art as a form of storytelling as a therapeutic process;
our healing story sessions,
which are live storytelling events
where patients come together with their invited guests
and share their narratives publicly -
the goal to create community
and to create an empowering experience for the story-sharer,
it's sort of AA meets Moth story hour.
And finally, after two-and-a-half years of discussions and collaboration
with NBBJ Architects and Mass General Hospital,
we're poised to launch the SharingClinic.
SharingClinic is a hospital-based sharing and listening booth.
It's an interactive, inviting space
where patients and their loved ones and any health-care providers
can come and can listen to stories left by others
and can record their own.
Hospitals can be isolating, scary places,
even in the best medical institutions,
and the goal of the SharingClinic is to minimize this sense of isolation
by creating a collective conversation.
My personal experience has left me with no doubt
that both sharing stories - telling stories -
and listening to stories is healing.
Standing here today is part of that healing.
I feel vulnerable, yes, but I'm going to walk away feeling stronger.
I'm fully committed to facilitating this story exchange in health care
because I believe that it's essential to well-being
and to the future of medicine.
Without stories, healing is incomplete.
Thank you.
(Applause)