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Tag: The Insider’s Guide To Health Care

HealthcareDIY: An Old Idea Made New

My wisest and longest-time friend in health care, Jane Sarasohn-Kahn has a new project, new research and a new website called HealthcareDIY out today. I encourage all of you to look around her new site and consider the stories she is telling, as they matter to all of us.–Matthew Holt

We’re DIY’ing home renovations, photo development, music playlists, personal financial management, and travel reservations. Increasingly, we’re also DIY’ing health. Think: Maker Faire-Meets-Health.

My thinking about HealthcareDIY was first inspired by my mother Polly, who died 34 years ago this month. She was my first role model for an engaged patient. When she was diagnosed with Hodgkins lymphoma in 1971, there was no internet for her to tap into for a patient network, a clinical trial, or a directory of oncologists or centers of excellence that were Top Doctors for treating the condition.

Polly did, however, absorb the books of Adelle Davis and her Let’s Get Well series on nutrition and health. Polly’s good friend, a librarian with whom she worked, tapped into the Index Medicus on her behalf and retrieved abstracts of articles on blood cancers that he printed out from the microfiche. Polly partnered with her doctor, an internist with a keen interest in hematology, for her care. She also had a huge and diverse social network (offline, of course) that surrounded her with a whole lot of love. Her M.O. was informed by Dr. Bernie Siegel, who started Exceptional Cancer Patients in 1978 and evangelized about patient engagement, living fully with cancer, and dying in peace, which she did, in October 1979.

Among many legacies Polly left me was her can-do attitude when faced with a six-month-prognosis upon diagnosis with Hodgkin’s. Mom worked full-time until the last two years of her life, wore beautifully tailored clothes and put on lipstick every day, and project-managed her health through eight years of treatment: primarily, radiation and blood transfusions. Polly figured out how to take control where she could, and she did it with grace, humor and sheer human will.

She DIY’d her health given the resources she had at-hand between 1971 and 1979: books, cassette tapes, in-person support groups, medical journals in print, a specialist and internist, and lots of love.

In the three decades since Polly’s death, two seismic forces have structurally changed consumers in America: the Great Recession beginning in December 2007, and the near-universal use of the internet in health. Ogilvy’s report, Eyes Wide Open, Wallet Half Shut, found two countervailing forces re-shaping U.S. consumers: re-trenching and re-imagining. On the retrenching side of behavior, people began to do more binging: in media consumption, drinking, and eating.

On the re-imagining front, some people looked to re-invent themselves, reconnect with others, and re-train to re-tool careers. This group of people has sought to be more active and more deliberate, and accept more complexity in daily living. These people are more mindful, more frugal, and open to trading down. 9 in 10 use coupons, shop at discount stores, and buy more store brands and generics.

For this latter group, Ogilvy said, “Self Reliance is the new insurance policy,” with a group ethos believing that, “Americans need to be strong, get their house in order, and protect themselves,” per the report.

That’s where HealthcareDIY comes into play.Continue reading…

My Doctor Is a Computer!

There was no mistake, but a bad thing has happened.  Despite the best efforts of the doctors, Bob’s wife is very sick.  Due to a rare side effect of treatment, her liver is failing.  Bob believes this could have been prevented. He is very mad.

“When we go to see the doctor, he stares at the computer,” says Bob. “He does not look at us.  Most of the time, the doctor is not even listening to us. He just sits there typing at the keyboard, gaping at the screen.  If he had been listening when my wife talked about the pain, then he would have stopped the drug.  Then her liver would be fine. She would be OK.  All you doctors have become nothing but computers.”

Now here it gets interesting.  After I listened carefully to Bob and sat with him at his wife’s bedside, I decided to check “the computer.”  There in the doctor’s records I saw a long discussion and analysis of the problem with her liver. Quite opposite of ignoring her, her doctor had listened, had changed therapy and was watching her liver carefully.  Sadly, despite the change, her liver had gotten worse. The problem therefore, was not that the doctor was not listening.  He definitely was.  The problem was that the computer had stopped him from communicating.

It is strange to think that a system of information and data exchange, which allows you to communicate with anyone around the entire world, interferers with connecting to the person right in front of you.  We see it constantly as cell phones, Ipads, computers and even that “old” obstructer the television, get between us.  At the time we need to communicate most desperately, electronics can block that most human connection of all, the physician – patient relationship.

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Zen and the Art of Not Thinking Magically

Don’t assume anything.

Assumptions can kill.  

Assuming something regarding your own health care can cost you money, cause you pain, and yes, even kill you.  Here’s my list of potentially harmful assumptions:

1.  No news is good news

If you have a test done and don’t hear anything about the result, do not assume it is fine.  This assumption kills people.  I have too many patients with too much information flying at me every day for me to catch every important detail.  Sometimes things are missed, but sometimes the results don’t come to our office.   We have trained our patients to expect an email or letter with their results within a certain amount of time, so they sometimes call when the test results don’t come in.  I tell them to do so in the clinical summary sheet I hand out at the end of each visit, but the assumption remains.

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The NFL Concussion Crisis & The Doctor-Patient Relationship

If you are reading this then you are already well aware of the current concussion crisis in the NFL. No matter where on the spectrum your opinions lie regarding this topic, there is one question that still remains: How did we get here? Surely if something has gone wrong then there must be someone to blame for it. Was it the league’s fault? The coaches? The players? The doctors? Maybe it is the injury itself that’s to blame? Perhaps it was just the perfect storm of a number of factors that put us in this situation? To truly get to the bottom of this, it is important to have a better understanding of the doctor-patient relationship. Not just in general, but specifically as it applies to concussed athletes in the NFL. Ultimately we may not find blame here, but we should at least shed some light on the realities of the situation.

As a sports medicine physician, I have taken care of thousands of concussed athletes at all levels. Eight year old hockey players, high school soccer players, collegiate football players, professional moto-cross racers and skaters, you name it. For all of them, the doctor-patient dynamic is similar. However, for the NFL players, that dynamic is entirely different. Let’s begin by looking at the usual non-NFL doctor-patient relationship.

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The Lesion’s Curse

A frightened Diane called me today.  She was in big trouble.  Her primary doctor’s office had called with terrible news.  The MRI showed Diane had a lesion.  Desperate, she reached out to an Oncologist for help.

A lesion?  Yes, a lesion.  What could that mean?  What did she need to do?  What was going to happen?  With trepidation Diane asked, “Do I have cancer?”

Medicine prides itself on accurate, specific, scientific analysis.  We have delineated more than 50 sub-types of lymphoma.  We measure toxin in parts per million.  We use complex Latin based terms like hemoglobinopathies to describe red blood problems, or ER positive Her-2 negative lobular carcinoma in situ with microinvasion to define a tiny breast cancer.  We adjust drug flow in micrograms per kilogram per minute.  Thus, you know we have a very specific delineation for “a lesion.”

Nahhhhhhh…. there is no absolute definition for “a lesion.”  In fact, if there ever was a useless, confusing and therefore frightening term, it is “lesion.” Perhaps Aristotle said it best, when he explained, “ To say of what is that it is not, or of what is not that it is, is false, while to say of what is that it is, and of what is not that it is not, is true.”   Certainly clears things up for me.

The MedicineNet dictionary defines “lesion” as “almost any abnormality involving any tissue or organ due to any disease or any injury.”  The emphasis being on “any.”  Farlex notes that a lesion might include any “pathology, tubercle, ulcer, wound, harm, hurt, injury, trauma, stigmata, abrasion, excoriation, scratch, scrape, gash, slash, slice, cut, laceration, or (and this is my favorite), bite. “  I suspect that my Aunt Hilda qualifies as a lesion.

The point is this.  The term “lesion” fills in the blank in any medical sentence for “not normal.”  However, most of us when we hear the term lesion, we think cancer.  This is not what lesion means. We use this vague term when we are too apathetic to be precise.

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Shame

I saw a gentleman in my office recently.  He was having severe pain radiating from his lower back, down to his calf.

I was about to describe my plan to him when he interrupted me saying, “I know, Doc, I am overweight.  I know that this would just get better if I lost the weight.”  He hung his head down as he spoke and fought off tears.

He was clearly morbidly obese, so in one sense he was right on; his health would be much better if he would lose the pounds.  On the other hand, I don’t know of any studies that say obesity is a risk factor to ruptured vertebral discs.  Besides, he was in significant pain, and a lecture about his weight was not in my agenda.  I wanted to make sure he did not need surgery, and make him stop hurting.

This whole episode really bothered me.  He was so used to being lectured about his obesity that he wanted to get to the guilt trip before I brought it to him.  He was living in shame.  Everything was due to his obesity, and his obesity was due to his lack of self-control and poor character.  After all, losing weight is as simple as exercise and dietary restraint, right?

Perhaps I am too easy on people, but I don’t like to lecture people on things they already know.  I don’t like to say the obvious: “You need to lose weight.”  Obese people are rarely under the impression that it is perfectly fine that they are overweight.  They rarely are surprised to hear a person saying that their weight is at the root of many of their problems.  Obese people are the new pariahs in our culture; it used to be smokers, but now it is the overweight.

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DSM 5 Finally Begins Its Belated and Necessary Retreat

Sigh of relief. The DSM 5 website announced recently that two of its most controversial proposals have finally been dropped. We have dodged bullets on Psychosis Risk and Mixed Anxiety Depression. Both are now definitively rejected as official DSM 5 diagnoses and instead are being exiled to the appendix. And one other piece of good news-the criteria set for Attention Deficit/Hyperactivity Disorder has been tightened (not enough, but every little bit helps).

The world is a safer place now that ‘Psychosis Risk’ will not be in DSM 5. Its rejection saves our kids from the risk of unnecessary exposure to antipsychotic drugs (with their side effects of obesity, diabetes, cardiovascular problems, and shortened life expectancy). ‘Psychosis Risk’ was the single worst DSM 5 proposal—we should all be grateful that DSM 5 has finally come to its senses in dropping it.

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Our Cancer Journey

Kathy heads to surgery tomorrow at 7am.   She’ll be NPO (nothing by mouth) after midnight.  She’ll wake at 5am, shower with Hibiclens (a antibacterial prep), and I’ll drive her to surgical check in.  Prior to surgery, the radiology department will insert a wire adjacent to the titanium markers that were placed in her tumor at first diagnosis.   Her surgeon will use this wire to guide the lumpectomy.

Her left breast will become smaller than her right.  She jokes that her career in exotic dancing will come to an end.

The operating room will call me at the end of her procedure and I’ll pick her up.   Since she’ll not have had general anesthesia, we’re presuming she’ll feel good enough for a bit of an extended ride home.   The last of our chickens arrives on Friday (Buff Orpington’s) and we’ll pick them up as we drive back to our new farm.

We’ll anxiously await the results of pathology.   If the margins on the lumpectomy tissue are clear, Kathy will start Radiation Therapy 1-2 months after surgery, likely late June or early July.

By Labor Day, if all goes well, this phase of our cancer  journey will end, although our continued vigilance for reoccurrence will be lifelong.

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When Reality TV Collides with Reality

First, a confession: I like to watch reality TV. Not all reality TV, not often. (I wish I could say, as I would about a junky magazine, “I saw it at the hairdresser” or “ . . . while I was waiting in line at the supermarket.” But no — I sit in my living room, turn on the TV, and choose the station. I take full responsibility. Though I do also use the time to fold laundry.)

The show I’ve gotten hooked on lately is called “Giuliana and Bill.” Giuliana and Bill are on TV because they are famous for being on TV — she as a host of E! News and he as a winner of “The Apprentice.” Their eponymous reality show, about the ups and downs of their marriage, is a marvel of glitzy minutiae. Giuliana and Bill are just like us, only with a lot more Hermès accessories. They bicker; they smooch; they argue about what to have for dinner; they host New Year’s Eve in Times Square. It’s “reality” — life’s big and little moments, carefully staged to seem breezy and spontaneous. But what has hooked me on the show this year is that “reality” has suddenly collided with reality: Giuliana’s diagnosis of breast cancer.

Giuliana and Bill started as a show about newlyweds who wanted to have a baby. But the couple wrestled with infertility, and an IVF pregnancy ended in miscarriage. Before proceeding with another round of fertility treatment their doctor insisted on a mammogram.

Breast cancer was diagnosed last October; and after Giuliana’s lumpectomies failed to produce cancer-free margins, she and Bill had to decide what to do next.

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Anatomy of a Walletectomy

It all began when Dr. Renee Hsia of the University of California at San Francisco received a simple request from a good friend who had checked into a local hospital for an emergency appendectomy. The fairly routine procedure took place 19,368 times during 2009 in California.

After he returned home, he received a bill from the hospital for $19,000, his co-payment for the parts of the $54,000 operation that his insurance company didn’t cover. “He wanted to know if this was the usual and customary charge for a one-day stay in the hospital,” she recalled.

And thus began her research into pricing variability in the state, which was published this week in the Archives of Internal Medicine. The prices ranged from $1,529 to $182,955 with the median hospital charge of $33,611, the study showed.

The prices not only varied between hospitals, they varied within hospitals. The largest spread occurred at one hospital, which Hsia wouldn’t reveal, where the cheapest appendectomy went for $7,504 while the most expensive charged was $171,696. There were numerous hospitals where the spread was $100,000 or more.

“They had the same diagnosis, but different things could have been done,” she said. For instance, one patient could have had multiple imaging tests and robotic laparoscopy, while the other received no imaging and a regular laparoscopy. There’s no evidence to suggest one set of alternatives had better outcomes than the other.

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