Teaching the Rx Narrative: Story as Medicine
In a week’s time I am teaching a workshop on the role of stories in medicine at Stanford Medicine X. I am excited, and also a little nervous about it. I’ve spoken at several conferences on this theme, but this is the first time I will be teaching a whole workshop on it. I’d like to share some of my thoughts on this topic with you, and perhaps you could share with me your own thoughts on how stories have shaped your healthcare experience. I am working on a plan to record (either by video or audio) some patient and healthcare provider voices speaking about storytelling in health to show during my workshop – let me know if you would like to be included in this.
“Medicine begins with storytelling. Patients tells stories to describe illness; Doctors tell stories to understand it.” Dr Siddhartha Mukherjee
Medicine is at heart at a narrative activity, and its daily practice is filled with stories. Most important are the stories patients tell their doctors. Medical historian, Stanley Reiser wrote in his his 2009 book, Technological Medicine: The Changing World of Doctors and Patients, “Before stethoscopes, the coin of evaluation was words—the doctor learned about an illness from the patient’s story of the events and sensations marking its passage.” Doctors take this story and turn it into medical information, returning the story to the patient as a diagnosis. However, the patient’s story includes many things that are beyond the reach of the health professional’s narrative. Clinical choices are not isolated from all else that happens in people’s lives but are part of an ongoing narrative. Patients are part of a network of relationships and responsibilities. They may have unspoken beliefs, fears, and expectations about what their illness means which will affect the healthcare choices they make. The medical narrative breaks down at the point where the patient story goes unheard.
What happens when the patient narrative doesn’t match the physician’s version?
Conflicting illness stories will hinder treatment because the meaning we give to our illness is significant in terms of managing our illness and contributing to our well-being. Medicine organized around meaning encourages more humanizing care rather than the current standardized care. I have shared the story of my own experience as a young woman diagnosed with breast cancer and how my doctors didn’t think to discuss fertility preservation options with me before I started treatment. Perhaps my doctors assumed what mattered most to me was saving my life– and of course that mattered a great deal to me – but what also mattered was the story of that life to be saved. If we could have had a discussion about who I was – not just another cancer patient – but a young woman with hopes and dreams of a future with children – maybe we could have made different treatment choices in terms of the toxicity of the chemotherapy or explored fertility preserving options in the brief window of opportunity that exists before treatment begins. But my story went untold. So while I received professionally competent care the legacy of that care left wounds that medicine couldn’t fix.
My plea to physicians is to be sensitive to the context of the illness experience; to establish a diagnosis in an individual context, instead of merely in the context of a systematic description of the disease. When stories are missing from healthcare, the result is often confusion, dissonance, a breakdown in communication, resentment and withdrawal. When we include stories in medicine, we can create understanding, humanity, empathy, meaning, and connection.
So my question is how can we bring medicine back to its storied heart? As always I’d love to hear your thoughts on this both from a patient and a provider perspective. And do let me know if you would like to be included in my Stanford workshop.
Wishing you all the best for your workshop Marie, and hope you’re fully recovered from your recent bout of being unwell.
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Hi Julia, not quite on the mend yet, but thanks so much for asking 🙂
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One of the things that is so helpful about doing homecare physical therapy is that I see my patients in their context, and I have more time to hear their stories. Some doctors here in the U.S. are finally realizing that making house calls now and again is an invaluable tool. It puts everything in perspective. It’s very difficult to understand anyone’s problems if you can’t see the environment in which they live or the daily pressures on them. I remember that I had to ask/tell my radiation oncologist that I much preferred to do a shorter, 3-week radiation protocol instead of the 7 weeks he had recommended. It did not occur to him that I had to drive myself to treatment, that I had to support myself, pay my own bills, and that I needed to get back to work as soon as I reasonably could. At the very least, doctors need to ask how treatment may impact a person’s life, work, finances, etc. It’s so great that you are able to educate clinicians, Marie. Keep up the good work. xoxo, Kathi
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Great points Kathi – really appreciate you sharing your thoughts. Important point re radiotherapy – I’ll be including it in my presentation for sure
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I hope you feel much better very soon, Marie – you have a whole week to rest up and get healthy before your MedX workshop!
Kathi’s important comment about house calls reinforces the value of an often-overlooked element of the patient’s narrative. For example, before I was discharged from the CCU (the intensive care unit for heart patients), not one doctor, not one nurse, not one janitor, nobody working in cardiology asked me even one question about:
– my home life (was there anybody at home to help me while recuperating? anybody at home who needed me to take care of them?)
– my workplace (where did I work? how much time off could I take? would I be returning to a stressful job?)
– my support circle (did I have family members or friends to look in on me, help out with errands, be there in case I needed them?)
– my finances (would I be able to afford to get prescriptions filled for that fistful of expensive new cardiac medications I’d suddenly been ordered to take every day for the rest of my natural life? how much would those meds cost? could I afford to take unpaid time off work?)
We know that the majority of patients diagnosed with chronic illness are discharged from hospital without a written care plan.* Couple that with vast gaps in care providers’ awareness of a patient’s life, and no wonder we have soaring hospital re-admission rates.
Best of luck to you at Stanford, Marie!
regards,
C.
* http://myheartsisters.org/2012/11/11/study-91-discharged-without-written-care-plan/
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Brilliant points Carolyn. Adding them to Kathi’s for my presentation and will of course attribute them to your wonderful selves.
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In my experience, what always seems left out or ignored in the patient narrative is the impact and influence of the patient (person’s) community – on decisions and on-going care and concern.
In between doctor’s visits we live our lives, so it’s not just my doctor/healthcare provider(s) and the internet I turn to when making decisions and then living with them. It’s my exercise group – women aged 40-80 with a wealth of wisdom plus knowledge about me, my walking buddy (another MEDX presenter – @Colleen_Young), my sibs and family and of course, my virtual community.
All of these caring factions help with perspective and long-term coping.
For me, this is what makes up meaningful shared decision-making.
Thanks, Marie, for putting this forward for discussion. Another aspect of the patient narrative 🙂
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Love what you say here Kathy. I was part of a very interesting conference this weekend on patient blogging and someone brought up a point that we need to talk less about patient-centered care and more about patient-networked care – very much aligned with the idea, which you bring up here. On an aside, I love the picture I have in my head now of you and Colleen walking together – what great conversations you must have!
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Thanks Marie.
‘Patient Networked Care’. Interesting. Thanks for sharing.
Another thot, on that note: remembering my MedX-experience (2013 ePatient Scholar) a husband and wife were on main stage, talking about how they were both living with cancer. I asked if ever felt they they had to ‘manage’ their community (of well-wishers, advice-givers and those-who-want-to-be-involved). Their response: belly laughs, adding ‘that’s a whole other session’.
Oh, of Colleen and I: you must add to your mental pix: a pink flask, filled with tequila.(Fuel for highly productive walk n talk meetings).
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I think story is central to all parts of life, think we are who we are largely because of the stories we have about ourselves. I’d be very interested in learning more about the work you’re doing here- and very happy to share my medical story with you via video or audio!
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Thanks so much Jenny. I’ll email you later about this.
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I am so thrilled you will be doing a workshop at Stanford X. They couldn’t have a better person leading this effort!
Here are some random thoughts in no particular order:
1) We need more programs like Stanford’s Medicine & the Muse program, focused on the intersection of medicine and the human stories behind it. It might also be helpful to have both doctors and patients involved in these programs. Doctors learning to write and share their stories helps remind them to be human but having a patient perspective here might be helpful.
2) It would be helpful if doctors learn to ask more open ended, human oriented questions such as what concerns you the most about your diagnosis? That might have helped your concerns about being able to have children come to light. I remember trying to explain something to my former primary care physician once (not cancer related) and I couldn’t find the words and he said “Do you feel like something’s wrong?” I remember thinking “Wow” at the time and that has always stayed with me.
3) I don’t have much to say about sharing my own story other than I was compelled to do it and am glad I did. It’s good for patients (humans–since we’ll all be patients sooner or later) to write down their stories whether they ever share it with anyone else or not. It helps you make sense of things.
I can’t wait to hear how your workshop goes! The attendees will be in such good hands!
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Jackie, I love what you say here. It’s very valuable and I agree with you re co-creation of stories between doctors and patients and how useful that would be in creating more understanding. Thank you also for your kind words about my workshop – I don’t mind admitting I am equal parts excited and nervous at the prospect!
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Context is so important to meaning. In searching for a diagnosis for our son our story, his story, provides the clues to the next possible steps. We have been very fortunate in finding HCPs that listen to the clues in our everyday life to find direction in care. But this back and forth has to continue if we’re going to keep providing the best in care for him and every time we bring in a new HCP I wonder if they will be ok with this model, if they will listen and value what we bring to the equation.
It’s an important dance, this conversation we have. And it takes time. So much time. Never mind the trust, on our side, the patient and caregiver side, but I imagine also on the health care provider side as well. But when we do it well, I know that on our side we are so much happier with how it goes, even if we don’t yet have our answers. I imagine, I hope, that on the health care provider side, that it leaves them more satisfied as well.
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Isabel, what a great point about context and your analogy of a dance is very apt. Many thanks for sharing your perspective. It’s so important to include the caregiver and I sometimes forget this. Thanks for the reminder
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Hi Marie
So sorry to hear you are unwell and under pressure with this work commitment. I do hope you start feeling better soon and if you don’t I’m sure Stanford will still be around next year.
If you do get to Stanford here are a few of my thoughts:
I’m someone with Long Term Conditions mainly of musculoskeletal with digestive issues thrown in for good measure and a few random other ones. I’m always in pain but have grown used to that and unless it is excruciating can usually self manage.
Often for me it is the little things that get me down which in the scale of things might seem very low in profile but it is only in hearing the full narrative or story that anyone understands the complete impact. For example recently I contracted food poisoning with a campylobacter bug and after 5 weeks am still recovering although am functioning reasonably again.
Here in the UK everything is condition specific although there are some great people trying to change that- me included as a patient expert by experience. So I end up seeing a GP who after 2 weeks of problems and little improvement from food poisoning finds the strain and prescribes relevant antibiotics.
But what has also happened is that as I couldn’t keep down food in the first 10 days all my pain medication went to pot and my pain levels rose to close to excruciating which in turn affected my already poor fatigue levels so it is no wonder that even now i am still struggling to function and quite honestly still functioning underpar. However the GP didn’t ask about the rest of me and i don’t like to say anything because you’re only supposed to relate one problem at a time in a pressured GP slot.
So there are tensions between time pressures for doctors/health professionals and patients with neither party getting the whole picture.
If you have more than one condition when and how can you ever have the opportunity and time to discuss the whole picture/story with time pressures so evident?
I’m pretty good at self managing with years of practice but sometimes it just gets too much and then I’m stuck and my mood dips too which together with my physical conditions probably means i don’t get out as much as I’d like so become more isolated which is not good.
I don’t have any easy answers but do think these issues need more thought from professionals and patients to work together to find suitable solutions.
Good luck if you make it to Stanford but don’t push yourself at the expense of your health.
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Happy if you would like to use some of my thoughts as presented recently at QUB
Linking here to a wonderful review for the video on Stonebird:
“This Video Could Save Your Life!”
http://carersfight.blogspot.co.uk/2015/09/this-video-could-save-your-life.html
(YouTube link directly to the video: https://youtu.be/DJBd5wEKcpU)
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Hi Sally, I was enthralled by your presentation and thanks for sharing it with us. You have a strong voice which needs to be heard.
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Thank you Marie… it seems to have got fairly widely shared now on YouTube – which is both daunting and satisfying. 😀
(And I thought I’d written “wonderfully KIND review” about Greg’s review in the comment above… 😛 Ah well, it was generous and wonderful I guess…. )
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Christine, I am so grateful for your thoughtful and considered reply and your good wishes. You raise really important points about multiple conditions and also the tension between lack of time and a need for patients to have more time to tell their story.
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For chronic patients, who have long experience with healthcare, I think the central story is a starting point, a pressure point like a knot in the muscle which affects every movement. Many new stories originate because of the first one, and the patient learns to turn the narratives into a way of expressing truths about their care, whether as an individual or as a person in the health care system. So the narrative can be used like data, yet it is much more compelling.
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