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Why Patient Autonomy Is Critical To Good Health Care

Many of the patients that I treat have brain injuries. Whether caused by a stroke, car accident, fall, or drug overdose, their rehab course has taught me one thing: nobody likes to be forced to do things against their will. Even the most devastated brains seem to remain dimly aware of their loss of independence and buck against it. Sadly, the hospital environment is designed for staff convenience, not patient autonomy.

In the course of one of my recent days, I witnessed a few patient-staff exchanges that sent me a clear message. First was a young man with a severe brain injury who was admitted from an outside hospital. EMS had placed him in a straight jacket to control his behavior on his trip and by the time I met him, he was in a total panic. Sweating, thrashing, at risk for self harm. He didn’t have the ability to understand fully what was happening but one thing he knew – he was being restrained against his will. The staff rushed to give him a large dose of intramuscular Ativan, but I had a feeling that he would calm down naturally if we got him into a quiet room with dim lights and a mattress with wall padding set up on the floor. As it turned out, the environmental intervention was much more successful than the medicine. Within minutes of being freed to move as he liked, he stopped moving much at all.

Later I was speaking with one of my patients in the shared dining room. An aide arrived with a terry cloth bib to tie around his neck so that he didn’t spill anything during lunch. I saw a flash of anger in my patient’s eyes as he pulled the bib away from his neck with his good arm and placed the towel on his lap instead. I could tell that he found the bib infantalizing, though none of us had thought twice about it before. Here again, a patient did not appreciate having everything determined for him, right down to napkin placement.

Towards the end of the day, I was bidding farewell to a patient whose care would be provided by another attending physician going forward. I was summarizing my view of his progress and expectations for the future, and stopped to ask if he had any questions. What he asked completely flummoxed me. Instead of probing for details about his medical condition and treatment options, he asked, “Will the new doctor be a good listener? Will she pay attention to what I’m saying and be easy to talk to?”

It is unfortunate that healthcare providers and patients are often on very different wavelengths. In Atul Gawande’s recent book, Being Mortal, he argues that nursing homes have often failed to provide healthy environments for patients because they have focused exclusively on safety and meeting basic needs (eating, dressing, bathing, etc.) on their terms. The removal of patient independence unwittingly results in devastating loneliness, helplessness, and depression. It seems to me that hospitals end up doing the same thing to patients – if only for a shorter period of time.

I was moved by Gawande’s book (and I consider it required reading for anyone facing a life-limiting illness or caring for someone who is). It renewed my conviction about the importance of rehabilitation – helping people to become as functionally independent as possible after a devastating injury or disease. Even as we age, we all become less able to do the things we hold dear. Preserving dignity by prolonging independence, and respecting patient autonomy, are often overlooked goals of good health care. It’s time to think about what our actions – even as small as placing a bib around someone’s neck – are doing to our patients’ morale. Maybe it starts with asking the right questions… Or better yet, just watching and listening.

Why Quality Healthcare Will Not Be Brought To Us By The Good People Of Cheesecake Factory

Hospitals can be dangerous and inefficient; therefore it is easy to connect with Atul Gawande’s recent New Yorker essay “BigMed” suggesting that the streamlined, production processes found at the Cheesecake Factory can and likely will be applied to healthcare.  Yet hospital care should not be confused with the full spectrum of healthcare.  One must make the distinction between the cognitive process of medical diagnosis occurring in exam rooms, with the procedural basis of surgical care and hospital recovery.  While Dr. Gawande has provided a wonderful revealing portrait of cost-effective, fast,  food preparation and delivery at the Cheesecake Factory, he has focused on the process of creating the meal, not the process of deciding what meal to make.  Successful surgery, for the wrong diagnosis, is a problem.  If we are to solve some of healthcare’s largest failings we should focus on what happens as physicians try to address their patient’s problems, diagnose and make decisions, at the table of medicine called the exam room.

Consider the continuum of the patient encounter, from first symptoms, through diagnosis and therapy at a restaurant called Med.  At Med I spend all of my shifts with my patrons at my tables.  This is an unusual restaurant since the patrons are never sure of what they want to eat and appear every 20 minutes with ever changing lists of unique groups of ingredients to share with me.  There are varying ingredients and thousands of meals that can be created.  The patrons know the ingredients, but not the meal that they would like to eat. From memory I respond to the customers list of ingredients and ask many questions, take the pulse and other vital signs of the customer, order blood samples, radiographic studies and then decide for the patron which meal their ingredients add up to.  All from memory.  At Med, restaurant patrons also ask for foods and “food tests” they have seen on television all purported to be risk free.  Further complicating the process is my customer is not out for a fun and relaxing evening, they are in small booths in skimpy, open at the back gowns, often anxious and uncertain if they will be harmed or poisoned by my foods, or simply receive a meal they do not want.   Some are in pain and some are depressed, while other customers are totally unrealistic about the meal that is to be delivered.  You see at Restaurant Med, where patrons only can speak to their wait staff about ingredients, and demand the modern but unhelpful ovens they heard about from friends and the media, it is really difficult to create meals that patrons thoroughly enjoy.

An appendectomy should be consistently performed and priced, but how do we consistently perform and price considering the ambiguity inherent in diagnosis itself?  Unlike a restaurant, where customers choose a meal by ordering a meal, at restaurant Med some higher force gives an unfortunate person an undifferentiated and undiagnosed problem that needs and deserves an answer.  As it turns out, none of the patrons really want to be eating at restaurant Med, as they always receive a meal they did not ask for.

Patients do not choose their diagnoses from menus; doctors must discover and diagnose them.

If your waiter tries to memorize all the orders at all the tables, you might get the wrong meal, and if your server is in a hurry, thai dipping sauce might be spilled on your new silk blouse. Likewise if physicians are in a rush, they might not take a thorough history, perform a complete physical exam, or have an accurate and thorough list of diagnostic possibilities, ultimately resulting in the wrong diagnosis. If your physician believes he or she can memorize all the questions, tied to all the possible diagnoses you also might receive the wrong diagnosis.  With that wrong diagnosis you might end up in a hospital more efficient than the Cheesecake Factory with doctors efficiently ordering unnecessary tests, and performing wrong surgeries for the wrong diagnosis all with the ease and speed of the best assembly line on the planet.

Diagnostic and patient management error caused by cognitive mistakes in the exam room are all too often overlooked and unmentioned in the discussion of repairing our broken healthcare system.  There are over a billion outpatient visits in the US each year, and numerous studies have shown 15-20% of these visits have an inaccurate diagnosis.  Autopsy data proves this, malpractice insurers know this, and policy makers avoid it. Add diagnostic error in the emergency room and walk-in clinics to error in the out-patient offices of medicine and you have more than 200 million errors.  If we are to resolve some of healthcare’s deepest woes we need to address diagnostic errors and the decision-making occurring at the restaurant table of medicine, the exam room.  A bright light needs to be shined on the simple fact that there is too much to know, to ask and to apply during a 15 minute encounter unless the patient has the simplest of medical questions or problems.  Medical informaticists, researchers and innovative companies are focusing on this essential limitation of medical decision-making by designing information systems to be used by physicians at the point of care, during the patient encounter.  Problem oriented systems can also be designed for use by patients in advance of the visit, and the future holds home-based information coordinated with professional clinical decision support. These new information tools are beginning to take the guessing out of which ingredients (symptoms) relate to the meals that the patient ultimately receives (diagnosis and treatment).  If medical care is truly to be driven back to primary care we need to arm the waiters of medicine with purposefully designed tools and training to resolve ambiguity, aid diagnosis and inform therapy in the exam room.

Art Papier MD

Art Papier MD is CEO of Logical Images the developer of a clinical decision support system, Associate Professor of Dermatology and Medical Informatics at the University of Rochester College of Medicine, and a Director of the Society To Improve Diagnosis In Medicine (SIDM)

Waiting For Medical News That Could Change Your Life

That old Tom Petty song, “The Waiting is the Hardest Part,” keeps running through my mind. Four of my friends are waiting to hear the results of medical tests taken last week.

  • Lucas has exhausted all of the standard cancer therapies for rectal cancer and is waiting to hear if he is a candidate for any experimental treatments.
  • Sam, who has lived through aggressive treatment for multiple cancers, is waiting to hear results from a test that will tell him if the fact that he is so very, very sick is due to one of them recurring.
  • Lucy just had major abdominal surgery and is waiting to hear the results of the pathology report that will determine whether or not her cancer can be treated at all.
  • Phil, who has been in remission from two different leukemias, had Read more »

*This blog post was originally published at Prepared Patient Forum: What It Takes Blog*

The Best Doctors Are Constantly Learning

Monday’s New Yorker has a story, Personal Best, by Atul Gawande. It’s about coaching, and the seemingly novel idea that doctors might engage coaches – individuals with relevant expertise and experience — to help them improve their usual work, i.e. how they practice medicine.

Dr. Gawande is a surgeon, now of eight years according to his article. His specialty is endocrine surgery – when he operates it’s most often on problematic glands like the thyroid, parathyroid or appendix. Results, and complications, are tracked. For a while after he completed his training he got better and better, in comparison to nation stats, by his accounting. And then things leveled off.

The surgeon-writer considered how coaches can help individuals get better at whatever they do, like playing a sport or singing. He writes:

The coaching model is different from the traditional conception of pedagogy, where there’s a presumption that, after a certain point, the student no longer needs instruction. You graduate. You’re done. You can go the rest of the way yourself…

He wonders about how this might apply in medicine: Read more »

*This blog post was originally published at Medical Lessons*

Doctor Considers All The Ways He’s Been Inspired By Steve Jobs

I’ve been reading A Game Plan for Life: The Power of Mentoring written by famed UCLA basketball coach John Wooden.  Wooden spends half of his book thanking the people who had a powerful influence on his life, coaching, philosophy, and outlook on life.  Important people included his father, coaches, President Abraham Lincoln, and Mother Theresa.

Yes, President Abraham Lincoln and Mother Theresa.

Though clearly he could have never met the former and didn’t have the opportunity to meet the latter, Wooden correctly points out that as individuals we can be mentored by the writings, words, and thoughts of people we have never and will likely never meet.

Which seems like the most opportune time to thank one of my mentors, founder and former CEO of Apple, Steve Jobs.

Now, I have never met nor will I ever meet Steve Jobs.  Lest you think I’m a devoted Apple fan, I never bought anything from Apple until the spring of 2010.  Their products though beautifully designed were always too expensive.  I’m just a little too frugal.  I know technology well enough that people have mistaken me for actually knowing what to do when a computer freezes or crashes.  Yet, the value proposition was never compelling enough until the release of the first generation iPad.  Then the iPhone 4.  Finally the Macbook Air last Christmas.

No, thanking Steve Jobs isn’t about the amazing magical products that have changed my life as well as millions of others.  It’s more than that.  What he has mentored me on is vision, perspective, persistence, and leadership.  Nowhere is this more important than the world I operate in, the world of medicine. Read more »

*This blog post was originally published at Saving Money and Surviving the Healthcare Crisis*

Latest Interviews

IDEA Labs: Medical Students Take The Lead In Healthcare Innovation

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How To Be A Successful Patient: Young Doctors Offer Some Advice

I am proud to be a part of the American Resident Project an initiative that promotes the writing of medical students residents and new physicians as they explore ideas for transforming American health care delivery. I recently had the opportunity to interview three of the writing fellows about how to…

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Latest Book Reviews

Book Review: Is Empathy Learned By Faking It Till It’s Real?

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The Spirit Of The Place: Samuel Shem’s New Book May Depress You

When I was in medical school I read Samuel Shem s House Of God as a right of passage. At the time I found it to be a cynical yet eerily accurate portrayal of the underbelly of academic medicine. I gained comfort from its gallows humor and it made me…

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Eat To Save Your Life: Another Half-True Diet Book

I am hesitant to review diet books because they are so often a tangled mess of fact and fiction. Teasing out their truth from falsehood is about as exhausting as delousing a long-haired elementary school student. However after being approached by the authors’ PR agency with the promise of a…

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