Health Story Collaborative

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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