storytelling

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SharingClinic, To Help Patients Tell Their Stories, Opens At Mass. General Hospital

Four years ago, Dr. Annie Brewster had a vision.

Brewster, a Boston internist, who was diagnosed with multiple sclerosis in 2001, had become frustrated that a crucial element of medicine — the human connection between patients and doctors — seemed to be lost in the modern era of 15-minute appointments and overly burdensome record-keeping. As a patient and a doctor, Brewster yearned for a therapeutic arena in which patients could tell their full health stories and feel they were actually heard, not rushed out the door; and where doctors, as well, could share a little more with patients.

Now, with the launch this week of the SharingClinic, an interactive “listening booth” stocked with audio stories from patients facing a range of illnesses, Brewster is a little closer to realizing her vision. Housed at the Paul S. Russell Museum of Medical History and Innovation at Massachusetts General Hospital, Brewster expects SharingClinic will continue to grow over time as more stories are collected and added to the kiosk. Eventually, she says, trained staff will begin to facilitate the storytelling in regularly scheduled “clinics” in a way that research suggests might offer an actual health boostContinue reading

Earlier:

Boundary Crossing: When Doctors And Patients Get Personal For Better Health

A diabetes patient and her doctor sit down to talk as part of a novel program aimed at improving the patient-provider relationship.

A diabetes patient and her doctor sit down to talk as part of a novel program aimed at improving the patient-provider relationship.

By Dr. Annie Brewster and Jonathan Adler
Guest Contributors

As a patient you’ve no doubt had moments when you feel like your doctor just doesn’t get you, or, that you don’t get your doctor.

If you’ve never felt rushed, ignored, overlooked or vulnerable during the course of your medical care, you’ve probably never been a patient in the U.S. health care system.

And if you’re a doctor, or another type of health care provider, you’ve probably felt hassled, frustrated, and powerless to help your patient, despite your best intentions.

In today’s medical system, the patient-doctor relationship is often challenged, in large part because there’s no room for us to actually engage with each other as people, to hear each other’s stories.

In medicine, there are unspoken but clear rules about what is appropriate behavior within the context of the patient-doctor relationship: doctors should never reveal intimate details about their own lives, and patients should never ask. Patients, meanwhile, should stick to the facts of whatever is ailing them, giving their provider the data for diagnosis and treatment planning, without superfluous anecdotal detail.

Professional boundaries are certainly important. There is validity to the argument that doctors need to keep distance in order to make clear medical decisions, striving to minimize the biasing impact of emotion. And perhaps it is also true that patients benefit from some distance, in thinking of their doctor as an authority figure rather than a friend.  But this obsession with boundaries has conspired with the pressures of efficiency and economy that constrain the health care system to remove some very personal (and important) elements of the patient-provider relationship.

We are far from the small town medicine of the past, when patients and doctors knew the details  of each other’s lives because their worlds intersected outside of the exam room.

Nowadays, in the 15-20 minute appointments that we are alloted, the patient-provider relationship can feel sterile and robotic. At its worst, it can feel antagonistic. Doctors are over-loaded and time constrained, with fear of litigation and the rules of HIPAA pressing in on them, and a payment model that rewards quantity over quality.

Patients often feel hurried and neglected; overwhelmed by the task of presenting the frightening aspects of their health in the right way to get answers and treatment. Physician burnout is ubiquitous, as is patient dissatisfaction.

It is our belief that by highlighting the humanity of both individuals in the relationship, the patient-doctor bond can be strengthened, with increased satisfaction all around.

Taking it one step further, we believe that reviving the humanity in this relationship will ultimately lead to better health outcomes.

So, here at Health Story Collaborative we’ve designed a program in which a patient and a doctor come together to share and listen to one another’s personal narratives. This new patient-provider model is a variation of our already existing Healing Story Sessions program. In short, our goal is to create a space where both patient and provider can be human.

We recently launched this project in collaboration with the Cambridge Health Alliance, with a grant from the Arnold P. Gold Foundation. We met on a Tuesday evening recently with Tracey Pratt, a woman with diabetes and her health care provider of many years, Dr. David Baron. As they shared their stories, an audience, including other diabetes patients, Dr. Baron’s wife and other medical providers, listened on.

We worked with both speakers in advance to craft their narratives, encouraging personal refection as well as their thoughts about the their mutual relationship.

Tracey talked about her passion for teaching, her travel to the Great Wall of China, and about learning Merengue in Havana, Cuba. She also detailed some of the difficulties she had managing her diabetes.

David told stories about growing up in rural Ohio, picking corn in the fields as a teenager, about his time in the Peace Corps in the Dominican Republic, and his journey to becoming a doctor. Continue reading

Art As A Conversation About Cancer With ‘Anyone Who Will Listen’

"Adjusted Schedule" by Dennis Svoronos (Courtesy of the artist) (Click to enlarge)

“Adjusted Schedule” by Dennis Svoronos (Courtesy of the artist) (Click to enlarge)

Art, in its essence, is just another way to tell a story, a way for humans to make meaning out of their experiences. At Health Story Collaborative, a nonprofit founded by Dr. Annie Brewster, a Boston internist and CommonHealth contributor who uses storytelling in a therapeutic context, artists are invited to tell their unique stories.

Here, Dennis Svoronos, a Boston-based sculptor who describes his work as existing “between art and engineering,” reflects on his cancer as a force for creativity and social engagement.

By Dennis Svoronos

In September of 2009 — at 26 years of age — I was diagnosed with cancer after experiencing the first of many seizures. Of all the trials I could imagine that lay ahead, I never thought most of them would be exercises in recollection.

Patient name? Dennis Svoronos (thankfully I can always get this one)

Date of birth? 3/8/83 (a palindrome, helps to keep it easy)

Occupation? Artist (maybe not my parents first choice)

Approximate date of last surgery? 11/09 (Who forgets their first brain surgery)

Existing medical conditions? Anaplastic Astrocytoma (a cancerous brain tumor)

Repeat daily, for years.

"Just in Case" by Dennis Svoronos (Courtesy of the artist)

“Just in Case” by Dennis Svoronos (Courtesy of the artist) (Click to enlarge)

As time progressed; I remember those waiting rooms — questions and ID tags — much more than the operating theatre and injections; trauma is kind of like that.

However, they made me feel intrinsically linked to my disease. What was I, without these suffixes of sickness to identify with? Somehow, all my other unique and admirable qualities were set aside for the identifier of ‘cancer patient’.

It’s easy to resign to the belief that those forms and wristbands define your life, mere statistics, data — you and your cancer. Just as painless is to ignore the process completely, pretending your exams and operations are the bad dreams of another person, your ‘real life’ goes on unaffected.

Either way, it seems you’re not to talk openly about cancer, and it is difficult for most; patients, family and doctors alike. My initial sense was, it would be easier for me — and more comfortable for others — to keep off the topic. Sickness is a surprisingly taboo subject in a very liberal culture.

The artist in me, however, couldn’t stop questioning why we hide from the discussion. Continue reading

When Your Writing Is Part of Your Healing

We recently ran an essay by Sarah Baker, exploring the links between her childhood asthma, her mother’s early death, the family chaos that followed and how it all played out physically and psychologically into adulthood.

Sarah told me the response to her post, which also raised the question of whether becoming a mother herself helped alleviate her asthma, was overwhelming and gratifying. Now, Dr. Annie Brewster, a Boston internist and frequent CommonHealth contributor who uses storytelling therapeutically, as a path toward healing, followed up with Sarah in a revealing audio interview. (For more on Brewster’s approach to personal storytelling for health, listen to her recent TedX Talk above).

Sarah Baker, around age 3, before her mother was diagnosed with a brain tumor.

Sarah Baker, around age 3, before her mother was diagnosed with a brain tumor.

Here’s a snippet from the interview, which you can listen to in full on Brewster’s website, Health Story Collaborative:

Annie Brewster: I’m really interested in what you said about that you never really consciously thought about this until you started to write about it. I’m really fascinated with the process of storytelling and how that sort of helps move somebody from one place or another. So, can you speak to the process that you went through in writing this and how that helped you and what it meant then to put it out there in a public way and get feedback on it; what that was like for you and what did it take to get to a place where you felt ready to take that on as a writing project?

Sarah Baker: I remember a number of years ago when I started writing, a friend of mine who is a successful writer said, “write what’s raw” so I always try to write what hits a chord in my heart. So writing about my childhood and writing about my mother’s death is what I tend to write about. This was the first time I wrote about my asthma and it was hard to write about it because I don’t have a lot of memory. I had to interview my Dad, I had to do some research, and I had to relive the trauma. I just kept working at [the story] and sometimes felt a little sick after writing but I just kept working. I usually write ten drafts before I show it to any one. I showed it to my husband and he reacted positively. I showed it to a class that I was in and to my teacher and they responded positively. I thought maybe I’ve struck something here. Then the story sat in my computer for a year; it did. And it was after I started taking a class about the book I’m working on that I decided to send it out. Maybe the year allowed it to percolate so it didn’t feel as scary. Continue reading

Storytelling For Health: Doctor Promotes Intimate Patient Narratives

Marie Colantoni Pechet discussing her stage IV rectal cancer

Marie Colantoni Pechet talks about living with stage IV rectal cancer

By Dr. Annie Brewster
Guest contributor

My experience in the health care system — both as a physician and as a patient living with multiple sclerosis — has convinced me that the current practice of medicine squeezes out what is a most essential element of healing: the stories of peoples’ lives.

In response to this void, I started collecting patient’s stories in 2010, and these pieces have been featured here on CommonHealth, as part of the Listening to Patients series.

Through these deep connections, I’ve seen firsthand that there is tremendous healing power in stories — for both the storyteller and for those listening. Research supports this claim.

Last year, I launched Health Story Collaborative, Inc. a nonprofit dedicated to harnessing the healing power of stories through collecting, honoring and sharing these narratives. The goal is simple: to keep patients’ voices alive.

Last week, as part of the nonprofit, we launched a new program called Healing Story Sessions, live gatherings where patients share their narratives. I like to think of them as part “Moth” radio hour, part AA meeting (though of course, this isn’t about addiction: it’s all about standing up and sharing in a safe and supportive environment). The goal of these sessions — designed in collaboration with Jonathan Adler, Ph.D, an assistant professor of psychology at Olin College of Engineering in Needham, Mass., whose research focuses on the psychological function of our stories and their relationship with health — is to empower patients and build community.

Each session features two patient storytellers and about 15 of their invited “guests.” Prior to the event, storytellers work to craft a written narrative using Health Story Collaborative’s narrative guide, which provides some structure for eliciting these challenging stories. They also work with Adler and with me to shape what they’ve written. Then, when the time comes, they speak their narratives out loud for the selected audience.

The belief is that this public sharing is meaningful and therapeutic.

Last Wednesday, 30 of us gathered in a cozy room to hear the stories of Marie Colantoni Pechet, who has written about her cancer for CommonHealth, and Lara (who asked that her last name not be used). Marie is a 51-year-old mother with Stage 4 colorectal cancer who has been living with her disease for over six years. She is on a maintenance chemotherapy regimen and continues to thrive, surprising even her most optimistic doctors.

Lara, a 47-year-old mother of four children, has a fairly new diagnosis of Stage 2 breast cancer. She is now in the midst of chemotherapy treatment and awaiting surgery in May. Her mother died of this disease 15 years ago. Continue reading

For Mental Health Boost: Take Charge Of Your Personal Story

I have a friend who, from my perspective, has a great life: fabulous job, cool wife, close family.

Still, this guy sees himself as perpetually at the mercy of life’s twists and turns. When work is hard, he feels like “a failure.” When his relationship gets complicated, he becomes “unloveable.” I’ve always wondered why he perceives such ugliness looking into the mirror.

Well, it appears that the stories he — that we all — tell ourselves about our lives have a huge impact on our mental health.

Indeed, a new study of patients in therapy suggests that taking control of your own personal story, that is, spinning a narrative in which you are in the driver’s seat of your life, can clinically improve your mental health and sense of well-being.

The actual things that happen to you may have less of an impact on your mental health than the things you tell yourself about them

The study’s big takeaway, says Jonathan Adler, its lead author and an assistant professor of psychology at the Franklin W. Olin College of Engineering in Needham, Mass., “is for people to realize that they are the main character in their story — but they are also the narrator. That means it’s possible to re-write the episode with a greater sense of agency,” or power and autonomy over one’s life.

Another way to think about it is this: The actual things that happen to you may have less of an impact on your mental health than the things you tell yourself about them. “Divorce is not divorce is not divorce,” Adler says. Continue reading

Podcast Friday: Storytelling As Patient Therapy; ‘Better Care, Cheaper’ Experiment

Our podcast this week features an interview with Dr. Annie Brewster, a Boston internist who became interested in storytelling as a kind of therapy for patients, and a Massachusetts General Hospital program that saves money while also giving better care to chronically ill older patients.

  • A recent study published in The New York Times found that patients listening to other patients telling their own stories can be therapeutic. We spoke to Annie Brewster, a doctor living with multiple sclerosis, about her project documenting the lives of patients and their families in the midst of serious illness.
  • (Check out Dr. Brewster’s “Listening Project,” here, here and here.)

  • Is Better Care Cheaper? Older patients with multiple chronic diseases are the biggest consumers of health care. We explore how the next phase of Gov. Deval Patrick’s health care plan aims to cut this cost down, and hear one doctor’s perspective about whether it will actually work.

Storytelling As Patient Therapy; MGH Experiment ‘Better Care Is Cheaper’