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When Great Healthcare Is Served With A Large Helping Of Unnecessary Mental Anguish

A wrist graft similar to what my friend's husband required.

I watched helplessly as a dear friend went through the emotional meat grinder of a new cancer diagnosis. Her  husband was found to have melanoma on a recent skin biopsy, and she knew that this was a dangerous disease. Because she is exceptionally intelligent and diligent, she set out to optimize his outcome with good information and the best care possible. Without much help from me, she located the finest specialists for her husband, and ultimately he received appropriate and state-of-the-art treatment. But along with his excellent care came substantial (and avoidable) emotional turmoil. The art of medicine was abandoned as the science marched on.

First came the pathology report, detailed and nuanced, but largely uninterpretable for the lay person. She received a copy of it at her request, but without any attempt at translation by her physician. In his view, she shouldn’t be looking at it at all, since it was up to him to decide next steps. She brought the report to me, wondering if I could make heads or tails out of it. Although I am not trained in pathology, I did know enough to be able to translate it, line-by-line, into normal speak. This was of great comfort to her as the ambiguity of prognosis (rather than certainty of metastasis and or mortality, etc.) was clearly outlined for the trained eye.

Then came the genetic testing and node biopsy. She was told that the tests could identify variants that would portend poorer outcomes, though it would take 6 weeks to find out if he had “the bad kind of melanoma.” Those 6 weeks were excruciating for her, as she planned out how they would manage financially if he needed treatment for metastatic disease, and if his life were shortened by various numbers of years. At week 6 they received no word from the physician, and so she called the office to inquire about how much longer it would take for the genetic testing to come back. She was rebuffed by office staff and was instructed to be patient because the lab was “processing an unusual number of samples” at this time.

Another week of anguish passed and she decided to contact the lab directly. As it turned out, they were eagerly awaiting the arrival of her husband’s sample, but it had been “lost” in hospital processing somehow. She called the hospital’s facility and someone found the tissue under a pile of other samples and tagged it appropriately and sent it on to the genetics lab. The hospital apologized for the delay via email – and she forwarded the note to her oncologist, so that he could sort out the potential processing bottleneck for other patients going forward.

The result was reported to the oncologist within a week’s time and in turn, the physician called (at 6:30am on a Monday morning) to discuss the result with my friend’s husband. He missed the call as he was in the shower getting ready for work, and wound up playing phone tag with the physician’s office for 3 more days. My friend had her heart in her mouth the entire time. She continued to imagine a world without her husband. If the disease stole him from her, how would she manage? What about the children? Could she make enough money alone to support her family?

“Why didn’t the physician leave any hint of the result in the phone message? If it was good news, surely he would have mentioned that.” She presumed. The physician required his patient to come into the office to discuss the results. And so they booked the next available time slot, another couple of days later. My friend was certain this was a bad sign.

As they arrived at the oncologist’s office, the staff forbade my friend to accompany her husband to the meeting. “Clinic policy” they stated. My friend’s mind was now spinning out of control – maybe my husband needs to be alone with the doctor because the results are so devastating that he must hear it by himself?

She insisted, nonetheless, to accompany him – and the staff felt obligated to clear it with the oncologist before they allowed her to enter the examining room with her husband. They whispered to him in another room before giving her the irritated nod that she could proceed. You could have cut the tension with a knife… she was certain that a death sentence was about to be handed down.

Once the oncologist entered the room, he spent the first 10 minutes making excuses for the delay in genetic tissue results. He argued that the hospital lab was actually not at fault for the delay and listed all the various reasons why nothing had been done incorrectly. His was so single-mindedly focused on the email he received weeks prior (simply describing the delay — as if it were some kind of assault on his own competency) that he almost left the room without telling them the results of the genetic test and biopsy sample.

As an afterthought at the end of the meeting, he announced: “Oh, and the tests suggest that you have a melanoma that is extremely unlikely to metastasize. The wide excisional biopsy is likely curative.”

And off he swished, white coat flowing behind him as he flung wide the door and moved on to the next patient.

The irony is that my friend’s husband got “great” medical care with a large helping of unnecessary suffering. His initial biopsy, wide excision and skin grafting, lymph node testing, and genetic lab studies were all appropriate and helpful in his diagnosis and treatment. But the way in which the information was presented (or not presented) was what made the entire process so painful. Unfortunately, we spend most of our time as physicians focused on the technicalities of what we do, rather than the emotional consequences they have on our patients and their families.

As we continue to “deliver healthcare” to our patients, let’s remember not to serve up any sides of unnecessary mental anguish. Clear and timely communication makes a world of difference in patient anxiety levels. And reducing those is part of the art of medicine that is so desperately needed, and disturbingly rare these days.

Changing The Behavior Of Doctors: Is It The Key To Engaging Patients?

I may not know how to tell the difference between an empowered patient, an engaged patient, or an activated patient.  But I do know that the fastest way to disempower, disengage, and de-activate any patient is a trip to the doctor’s office or the hospital. A visit to an average primary care physician (or specialist) is to an empowered/activated/engaged patient what Kryptonite is to Superman.  It will stop all but the strongest willed patients dead in their tracks.

We patients have been socialized that way.   Think about your earliest memories of “going to the doctor.”  For me, I remember my Mom taking me to the Pediatrician.  Early on I learned by watching the interaction between my Mom and the doctor that they each had a role.  The doctor’s role was that of expert – he spoke and my Mom listened.  I was there just to have one or more extremities twisted and prodded.  And oh the medicinal smell…

Things haven’t changed much in the 40 years since I was a kid sitting in Dr. Adam’s office. Read more »

*This blog post was originally published at Mind The Gap*

Do Patient Surveys Measure True Medical Quality?

There was an extremely popular game show where several times each episode the emcee would shout out, “Survey Said!”. Of course, this was just a game, not real life.  Now, several times each week I am asked to respond to surveys.  They pop up uninvited on the internet and are often veiled advertisements for products and services. They are on the back of receipts from coffee houses and doughnut shops.  Is it worth 10 minutes of my time clicking through the doughnut survey for either a free chocolate frosted doughnut or the chance to be entered into the grand prize drawing months later?  Hotels I stay at routinely follow-up with e-mail surveys for my feedback.  I suspect most folks delete these instantly, which skews the customer base to those who do respond. (Remember, disatisfied folks are often more motivated to give feedback than the rest of us are.) How often do we call a restaurant, a retail store, a bank or even a doctor’s office to offer hosannas about great service?

Medicare recently released fascinating patient-survey data that raises interesting issues. In over 120 hospitals, patients rated the hospitals very highly, despite high death rates for heart disease and pneumonia. So, who do we believe here, the patients or the death rates?  I wonder if the patients’ survey results were more optimistic since only the live ones were available to complete them.

Surveys are now serious bu$ine$$. Read more »

*This blog post was originally published at MD Whistleblower*

Great Clinical Care And Excellent Bedside Manner: Are They Mutually Exclusive?

The New York Times recently published an article titled, Finding a Quality Doctor, Dr. Danielle Ofri an internist at NYU, laments how she was unable to perform as well as expected in the areas of patient care as it related to diabetes.  From the August 2010 New England Journal of Medicine article, Dr. Ofri notes that her report card showed the following – 33% of patients with diabetes have glycated hemoglobin levels at goal, 44% have cholesterol levels at goal, and a measly 26% have blood pressure at goal.  She correctly notes that these measurements alone aren’t what makes a doctor a good quality one, but rather the areas of interpersonal skills, compassion, and empathy, which most of us would agree constitute a doctor’s bedside manner, should count as well.

Her article was simply to illustrate that “most doctors are genuinely doing their best to help their patients and that these report cards might not be accurate reflections of their care” yet when she offered this perspective, a contrary point of view, many viewed it as “evidence of arrogance.”

She comforted herself by noting that those who criticized her were “mostly [from] doctors who were not involved in direct patient care (medical administrators, pathologists, radiologists). None were in the trenches of primary care.”

From the original NEJM article, Dr. Ofri concluded Read more »

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

Improving Surgical Residents’ Bedside Manner

I was alerted to this Archives of Surgery article (full reference below) by MedPage Today:  Role Playing Boosts Surgical Residents’ Bedside Manner.

I find it intriguing.  Role playing gives you a chance for a “do-over” when you make a social or communication faux pas.

So much of medicine is communication.  Those of us who have been at it for years, deliver bad news differently (learned the hard way) now than we did previously.  You choose your words more carefully (though I still occasionally screw up).  Some words are more emotionally charged than others.  Some patients want more information than others.

The University of Connecticut Health Center conducted a prospective study  of a pilot project designed to  teach surgical residents patient-centered communication skills.

The study offered Read more »

*This blog post was originally published at Suture for a Living*

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