it's not too late...yet

If you are interested in, or simply curious about the concept of narrative as an instrument of healing, you should run right out and pick-up a copy of “What Patients Say, What Doctors Hear” by Danielle Ofri, MD.

 

In this book, the author explores the doctor-patient relationship and tackles the issues of communication and miscommunication and how they affect medical outcomes. If you harbor any cynicism about the relevance of narrative medicine as a healing practice, you should read this book. If you want to learn more about it, you should read this book. Then lend it to a friend. Or two. Or three…

Among the issues she tackles are:

·       Obstacles to effective communication that suck the best of us dry—time constraints, over-booked schedules, exhaustion, and burdensome mandates and initiatives that have nothing to do with improving patient care

 

 



·       The importance of listening skills when obtaining the patient’s medical history, and how our body language, attention and response can intimidate or discourage the patient from sharing important parts of his story

 



 

·       The importance of our personal backstory, and how it affects our expectations and interactions with patients

·        How the use of jargon reflects our attitudes about patients, for example, referring to the disease rather than the person who has a disease (the diabetic, the epileptic, the asthmatic) or labelling the patient who “failed” treatment, the “poor historian”, or the “noncompliant” patient

·        The effect of gender, race, culture, socioeconomics, and religion on communication

·        How to break bad news to the patient and his family

·        The correlation between poor communication and malpractice claims, and the pros and cons of disclosing medical errors

·        How effective communication influences the perception of pain, and how this has been likened to a placebo effect

…none of which we learned about in medical school.

Thankfully, it’s not too late for us. Narrative medicine is all about communication as a healing practice. If it interests you, I recommend Ofri’s book. And…if you missed the debut conference on Narrative Medicine at Kripalu Center last summer, the good news is that they are running it again this year and registration is now open. You can find a link to this summer's conference here

www.kripalu.org



Among other leaders in the field, Rita Charon will be speaking.

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Rita Charon

Rita Charon, MD, PhD, is professor of medicine and executive director of the program in Narrative Medicine at the College of Physicians and Surgeons of Columbia University. She completed her MD at Harvard Medical School and her doctorate in English at Columbia. A general internist, Rita took her PhD when she realized how central the telling and listening to stories is in the work of doctors and patients. She teaches literary theory, narratology, and creative writing to students and faculty at the medical center and in the graduate Narrative Medicine program. Rita is author of Narrative Medicine: Honoring the Stories of Illness, coeditor of Psychoanalysis and Narrative Medicine and Stories Matter: The Role of Narrative in Medical Ethics, and coauthor of the forthcoming Principles and Practice of Narrative Medicine.

Also attending again this summer will be Nancy Slonim Aronie (my fav).

www.kripalu.org

Nancy Slonim Aronie

Nancy Slonim Aronie is the author of Writing from the Heart. She has been a commentator for National Public Radio’s All Things Considered, was a visiting writer at Trinity College in Hartford, Connecticut, wrote a monthly column in McCall’s magazine, and was the recipient of the Eye of The Beholder Artist in Residence award at the Isabella Stewart Gardner Museum in Boston. Nancy won teacher of the year award for all three years she taught at Harvard University for Robert Coles.

If you are interested…and you should be…check out https://kripalu.org/presenters-programs/narrative-medicine-cutting-edge-approach-healthcare. I’d love to meet you there.

 

jan 

 

 

 

 

what if?



 



When I got home after the debut conference on Narrative Medicine at Kripalu Center for Yoga and Health last summer, I couldn’t wait to share my enthusiasm with my husband. He is a dedicated family physician who also struggles to keep patient care a priority while coping with the initiatives and mandates imposed by an aggressive and mercenary hospital health system.

I cited the importance of taking time to hear the patient’s whole history and how it can lead to more accurate diagnosis, expeditious workup, and effective treatment. I emphasized the importance of trust, hope and faith in the doctor/patient relationship and how this promotes healing.

I suggested that our colleagues might be interested in learning about it.

His response?

“That will never happen.”

And, for a couple of reasons, I’m afraid he was right. It takes time to listen to the patient’s story (a.k.a. his medical history). It slows you down. At the end of the day, you won’t have seen as many patients, and therefore, you won’t have generated as much income. Short of anecdotal reports, there is insufficient proof (data) to suggest that exploring the patient’s narrative improves patient outcomes or conserves resources. The system is fueled by competition for power and control rather than compassion and connection.

My husband’s skepticism led me to ask again, “What would it take to change the system as it is evolving?”

This led me back to an important storytelling technique. If you have a story to tell but you’re not sure how to develop it, an excellent tool is to begin with the question: “What if…?” or, “What would happen if…?”.



www.tarangsinha.blogspot.com

For example, what if you could prove that the time spent listening to patients translated into the need for fewer follow-up appointments? What if it improved patient motivation and compliance? What would happen if policy makers and health system managers could be convinced to reconsider productivity quotients and to question the validity of the RBRVS scale in the interest of improving the doctor/patient relationship?

What would it take to convince a CEO, CFO or healthcare policy maker to understand that the present system is failing both patients and providers? Well…

·         …what if his father died of pneumonia three weeks following early discharge from the hospital based on a predetermined protocol that failed to take into consideration the fact his father didn’t have the strength to generate an effective cough?

·         …what if his son died of a heroin overdose when he’d denied drug or alcohol abuse at his sports physical just a week earlier?

·         …what if he had to see his own physician because of a laceration he sustained slicing his bagel for breakfast, and then missed a critical meeting with the architect regarding plans for an expansion because no one in the practice had time to fit him in?

Before they concede the need for change, perhaps the system would have to fail the very people who conceived it, promote it and continue to defend it despite its inherent shortcomings. Perhaps then, ambition would bow to compassion.
 

“It can be argued that the largest yet most neglected

health care resource, worldwide, is

the patient…”

~Dr. Danny Sands~

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In my next post, I’ll explain what this has to do with my decision to retire prematurely…

jan

 

 

 

who has time to listen?

 

The premise that storytelling plays an important role in patient care arises from our commitment to obtaining a complete and accurate medical history. The important components include:

·         the history of the present illness (HPI) including the onset, duration and severity of symptoms

·         the past medical history (PMH) including previous illnesses and hospitalizations for everything from trauma to surgery to depression

·         the family history (FH) of serious medical conditions that have a tendency to run in families (for example, certain cancers, hypertension, diabetes, heart disease, etc.), genetic tendencies, even mental health issues

·         the social history (SH) including smoking, alcohol and drug abuse, cultural and socioeconomic factors, employment, as well as diet and exercise



There was a time (Yes, I am old enough to remember it.) when physicians actually took the time to ask about these matters. They observed the patient tearing up as she recounted her mother’s battle with breast cancer and the panic she felt when her own breast started to ache. They noted the moment of hesitation just before the patient lied about his sexual activity or substance abuse. They connected the patient’s obesity with his shortness of breath because it was visible to them.

Nowadays, the patient records his history on a checklist along with his demographics and insurance information.

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The physician barely has time to inquire about the time of day much less explore the full spectrum of the patient’s symptoms, much less his lifestyle, much less his emotional response to what is happening to him…all of which impact the provider’s ability to make an accurate diagnosis, develop an effective treatment plan and help the patient heal.

True Story:

The patient was a twenty-three-year old woman who presented as a “walk in” (meaning she arrived at the office without an appointment because she had an urgent problem) on a day when the schedule was already booked and I was running late, as usual. She had a black eye, but there was more to it than that.

She told me she had been jumping on the bed (Really? A twenty-three year old??) when she lost her balance, fell and struck the corner of the nightstand, but there was more to it than that. Her boyfriend was kind enough to bring her to the office, but that’s not all he did.



www.slideshare.com

The patient had a blow-out fracture of the right orbit (meaning a fracture in the bone that surrounds the eyeball). She needed immediate evaluation and treatment by a skilled specialist. As I was making preparations for her transfer to the ER, I asked her one question: “What really happened?”

It was no surprise to me when she confided that her injuries were caused by a blow from her boyfriend’s fist. She shook with fear as she told me this wasn’t the first time something like this had happened. She felt like she had nowhere to turn.

Besides emergency medical treatment, she desperately needed social services—a safe place to live, a PFA order, someone to stay with her during recuperation. Oh…and she was uninsured. She would definitely need help with the bills.

A single question uncovered a flood of life changing issues for the patient. It was a question you won’t find on any checklist anywhere.

The point is that the importance of storytelling in medicine cannot be overstated.

The question is: “Are you willing to listen?”

jan

the whole truth

 

Last summer, when I came away from the first annual conference on Narrative Medicine atKripalu Center for Yoga and Health, I felt I had found my inspiration as a physician and a writer.

A path through the woods at Kripalu

 



All week long we listened to leaders in the field describe the healing power of narrative and how to practice it. Physicians from Harvard, Yale, Columbia and Stanford, published authors, health care providers, and holistic and native American healers shared their amazing stories with us.

So, why hasn’t it taken off? Why aren’t physicians and patients everywhere engaged in storytelling as part of the therapeutic process?



As my husband (also a physician) so bluntly put it, “If it doesn’t make money, corporate America isn’t interested,” referring to the CEOs and CFOs who head up competing hospital health systems.

Alas, I’m afraid he’s right. Administrators who drive health care systems forward are less concerned with, and less knowledgeable about hands-on patient care than they are about productivity, profit, and power.

www.gridgit.com
 











It’s no wonder physician burnout is at an all-time high, and patient satisfaction is at an all-time low.

What would it take to reverse this trend?

Numbers.

Storytellers would have to prove that the practice of narrative medicine improves profits, shortens hospital stays, reduces the number of readmissions, or otherwise generates income and saves money. Forget patient satisfaction and physician empowerment.

Or, maybe something like this will have to happen:

Let’s say the CEO of your hospital (let's call him Tom) suffers a heart attack. He is impressed by the speed, efficiency and expertise with which he is evaluated in the ER, rushed to the cath lab, stented, and admitted to the CCU. Two days later he is discharged.
 

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He congratulates himself how well the system works. This is what drives him--efficiency, accuracy, and speed.

However, a couple of days following discharge, he experiences a syncopal episode during a board meeting. Again, he is rushed to the ER where his physical examination is unrevealing. His EKG is unchanged, and his chest X-ray and a stat CT of his brain are normal. He is admitted for observation. In the middle of the night, though, he suffers a cardiac arrest and dies.

www.corticare.com



Why? Because no one thought to ask him about heroin addiction…and he wasn’t about to bring it up. It wasn’t one of the bullets on the EMR for patients admitted with chest pain. Smoking? Yes. Alcohol? Yes. Heroin? No.

If the possibility of heroin abuse crossed his cardiologist’s mind, he didn’t ask about it. Had he, however, asked about stress and how Tom coped with it, he might have uncovered the real story. Maybe one of his investments just bottomed out. Maybe he just found out his wife was having an affair. It was all too much for him even though he managed to project a veneer of confidence, authority and success. His addiction was a hidden demon that ultimately took his life.

We may be skilled at zeroing in on the diagnosis and treating the patient. We know how to increase productivity and reduce costs. We pride ourselves on technology.

But until we get the whole story, we can’t treat the whole person. Unless we know the whole  truth, the patient won’t get well.

www.e-Patients.net

 



jan

 

 

how stories write themselves

This is another one of those true stories that animates the field of narrative medicine. It wrote itself just this past week:

As I gathered up my rosary and prayer book at the end of Mass on Christmas eve, I felt a tap on my shoulder.



San Diego Survival Guide



I turned around to see one of my former patients there, looking half apologetic, half overjoyed at having captured my attention. I hadn’t seen the woman for years—not since I walked her through the evaluation and treatment of breast cancer when she had just turned forty.

After I retired from medical practice I thought of her often…every time a friend or former patient or family member started down that same path. So, I asked her how she was. I asked about her health. The good news was the fact that she had beaten back her cancer. But her smile vanished when she told me she had recently lost her husband. From vascular disease. Little by little.

She told me about the ulcer on his toe that wouldn’t heal. How gangrene set in, forcing his surgeon to amputate the toe. How the surgical site failed to heal, forcing him to amputate the leg. How the same problem developed in her husband’s other leg, until he lost it, too. Over a period of several year she lost her husband limb by limb. Bit by bit.

www.MyDoorSign.com

 

I can’t bear to think how he suffered knowing there was no cure in sight for him. The finest medical care meant nothing more than torture and then death to this man. No one was coming to save him…not the finest doctor, not a Navy Seal, not even a Papal blessing. I hate to imagine his unending pain as he surrendered his body again and again to the knife. Helpless. Devoid of hope. There were no redeeming plot twists in his story. No happy ending. No lessons to be learned.

Yet, this is a story I will never forget.

This is how stories write themselves. Someone taps you on the shoulder and life is never the same again.

 

 

jan

 

 

 

 

 

a needy character

I've been off the grid for a couple of weeks because I've been downsizing and moving. This process taught me a couple of things I'd like to share with you.

I learned to ask for help…putting furniture together, setting up a new internet server, installing electrical fixtures, lifting and carrying…the list goes on.

Retro-Fans Blog

But, asking for help isn’t easy for me. I don’t like to inconvenience people or burden them when they already have more to do than they can handle. I feel better about myself when I know I can manage on my own. And, I’m never sure who to call. Who’s reliable? Honest? Thorough? Nevertheless, because I’m pretty helpless when it comes to hi-tech changes and to mechanical and electrical upgrades, I had to ask for help.

Then it struck me.

For over thirty years, I met day after day with people who had turned to me for help. I was a healer, a pillar of hope for them.

If you’re a health care provider, you know what I’m talking about. Our patients’ health and well-being are at stake. Sometimes their survival is in our hands. They come to us with heart disease, cancer, broken bones, depression…unable to care for themselves. They need the help of an expert, someone who is careful, compassionate and wise, but they don’t always know who to turn to. Imagine what it must be like for the woman who discovers a lump in her breast. For the parent whose child can’t breathe. For the trucker having dizzy spells. Imagine not knowing what to do or who to call. Who you can trust. Who you can depend upon.

When I moved I was anxious about calling for help just to install a kitchen fixture, assemble a desk and repair an appliance, trivial matters compared to one’s health. Nevertheless, it was a huge relief when family members, friends, and friends of friends responded promptly. Every single one of them was happy to lend a hand. Total strangers treated me with respect and kindness.

I would consider myself a success as a physician if I could be as cheerful, as skilled, as attentive and as considerate as the people who helped me when I needed them this week—the plumber, the electrician, my new neighbors. My friends. My family. All of them ordinary people acting with extraordinary character.  

jan

           

why we need to hear your story

True story:

Almost twenty years have passed since I was sued for malpractice. 

www.akosmed.com

It was a classic case of a “missed diagnosis”—colon cancer in a young woman with no personal or familial risk factors for the tumor. In her case, it lurked just out of reach of the flexible sigmoidoscope, back in the days when flexible sigmoidoscopy was considered the standard of care for young, low risk patients with minor rectal bleeding. In this population the most likely culprits were hemorrhoids, fissures or small inflammatory polyps. Colonoscopy was considered overkill in cases like this. It was expensive and insurers were reluctant to cover it. Out of pocket expenses for the patient could run into thousands of dollars. In addition, it entailed the risks associated with anesthesia and perforation. 

So I performed a "flexi" on her.

I felt confident in my skill and thoroughness when I explained to the patient that she did, indeed, have internal hemorrhoids which were the likely cause of her bleeding. Nevertheless, I gave her careful instructions to follow up with me for further evaluation if the bleeding persisted or worsened. In fact, I provided her with three test kits to run at home for what is referred to as occult bleeding—blood in the stool you can’t see but can test for. In either case, she would need a colonoscopy.

I never heard from her again. In fact, her name never came up until two years later when I received an official summons that began: “YOU HAVE BEEN SUED IN COURT.” 

www.nursetogether.com

By then, she had undergone surgery, radiation, and chemotherapy to no avail. She died after a long, painful struggle with the disease, leaving behind three teenage children and her husband.

To make a long story short, the case was settled out of court with the help of a topnotch expert witness. Serendipity may have been on my side as well. Before he went into malpractice law, the prosecuting attorney had been a friend of mine. We attended the same church, our children played sports together, and we had entertained him on more than one occasion in our home. I have always wondered if he went easy on me. Fortuitously, the day of the deposition, he was suffering from a back injury making it impossible for him to grill me for ten hours without food, water, or bathroom breaks as was his customary practice. My malpractice carrier handled the out-of-court settlement. Things could have been much worse for me.

But that’s not the point of this story.

The point is this: my patient’s fate found a permanent home in my heart. Today, for example, I thought about her when I drove to a nearby state park and hiked the lakeside trail through the woods…under a ridiculously clear blue sky, in the warm sunshine, against the gusty wind. I think of her when the snow falls, turning the world soft and silent. I think of her, her children and her husband on the very days I am most grateful to be alive. I am reminded that she’ll never enjoy another sunrise at the beach, another sip of wine or another good strong cup of coffee. She didn’t live to see her grandchildren come into the world...

...which probably explains why, twenty years later, her spirit lives on in my heart. Whenever I feel gratitude or joy or pure pleasure I think of her and all that she has missed. It never fails. It keeps me mindful. It keeps me humble. It makes me sad.

That’s my story. What’s yours? If you are prompted to share it with us, you can use the comment field below, or contact me and we’ll work something out.

 jan