After everyone had left: Choosing an Emergency Room

The day after my daughter's Bat Mitzvah in Boston, after everyone had left, my mother asked me if I'd bring her to the Emergency Room. She'd been having pain radiate down her neck. She'd waited until then to ask because she didn't want to ruin my daughter's special day. I wanted the best care for her, and wanted her to get it quickly. She wanted to catch a train to NYC to see an old friend. I called 2 E.R.s to find out how long she'd have to wait. The shorter wait was at a very small community hospital in our suburban home town. I asked the E.R. for their FAX number, and in the car on the way, I called my mother's doctor's office in Atlanta and asked them to FAX her problem list and medication list to the E.R. in Boston.

When we got to the E.R., the problem list and medication list were already there, and they quickly got her in to see a doctor. They gave her an EKG, X-rays, and blood tests to rule out a stroke. And they arranged a specialist at a nearby Harvard teaching hospital to see her on a TV screen - a quick telemedicine consult.

They ruled out a stroke, gave her some quick education about the problem they'd discovered, so she WAS able to catch her train in time. The lessons?: Get an advocate who can put you first. Choose your E.R. Get them the critical information they need.

The stories in my book, Getting Your Best Health Care: Real-World Stories for Patient Empowerment, come from my personal experiences in my family, my professional work as a hospital consultant, and research for my blog. There are stories of famous doctors who've been patients, and what we can learn from them. There are stories about the health crises of celebrities and public figures, and what we can learn from them.

I've been working for 15 years as a consultant in helping hospitals prevent medical errors, and improve the quality of care. When my father-in-law died from a medical error in 2002, it changed me. I later began writing stories to educate and empower and warn people in Patient Safety Blog. So my interest was first professional, then very painfully personal, and then professional in a different direction, as a patient advocate.

Now my work enables people to partner with their doctors, to get the best patient-centered care.

Patient Activists: Swimming Uphill

Three of the best things about Boston occur within a three-week period every springtime: the Boston Marathon, the Walk for Hunger, and the herring run in Weymouth. In each, tens of thousands come together for a single crazily ambitious purpose. Whether they're running 26.2 miles, walking 20 miles for a charitable cause, or swimming 78 feet uphill through fish ladders to spawn, their raw effort and grit are hugely inspirational.

I watched the Boston Marathon again this year, from a vantage point near the top of Heartbreak Hill. The Kenyans and the ordinary shlubs, the blind runners, the wheelchair racers, the runners with artificial legs. I didn't see Dick Hoyt, the 70-year-old father who runs behind his wheelchair-bound adult son Rick, though I read that they, too, finished their 29th Boston Marathon. (Fourteen years ago, when I ran the marathon, my seven-year-old son, seeing me at Mile 24, almost four hours into the race, said, "Daddy's gonna win." Right.)

Of the three, the herring provide the most apt metaphor for patient activists. We're all small fry. The odds seem daunting. But we swim uphill relentlessly: it's what we do. We gotta spawn more of ourselves; that's what we live for.

The game warden told me that once a day or so, when the density of herring becomes crowded enough, they suddenly surge forward en masse over the next ladder. We activists need to keep growing a critical mass, for the same purpose. So, tell your lagging friends to jump in; the water's fine!

For inspirational human stories of patient activist heroes, see Chapter 12 of my book, Getting Your Best Health Care: Real World Stories for Patient Empowerment.

Dousing the fire: Resolving the many causes of high weight gain

Dr. David Edelson describes one of his best patients:

She had a whole series of issues: sleep apnea [blockage of the airway, cutting off breathing for 20 seconds or more], hypothyroidism [a slowing of bodily processes due to an underactive thyroid gland], insulin resistance [misuse of the insulin produced in the body], binge and impulse eating. She wasn't exercising and was slightly depressed; she had a whole spectrum of different issues.

One by one, we worked through them, both with lifestyle changes and others. In our practice we have a gym with a personal trainer, so she'd work out with him/her two days a week. We have a nutritionist, who put her on a low-carbohydrate, higher omega (heart-healthy) fat diet. She'd been a terrible carb addict, and was pre-diabetic, with metabolic syndrome. For her, eating our Western high-starch, high-fat diet is like throwing gasoline on a roaring fire.

By getting her to eliminate all these white starches, and eat more whole grains, healthier grains, fish, avocadoes, olives, etc., that almost instantly turns off the metabolic syndrome, instantly dousing the fire. It got her metabolism back on line, and her carb cravings under control. The exercise and diet got her to burn her mesenteric (belly) fat. That began the process of getting those issues under control.

Then we added other things: nutritional products to fight the insulin resistance like high doses of fish oil, an herbal product with chromium, and cinnamon, a good insulin sensitizer.

Initially, we started with some medications to tip the energy balance to the right direction. We put her on a combination therapy of low-dose Phentermine and Topamax (that combination is now in development as a single drug called Qnexa). We use that in people with very strong eating urges, and binge-eaters, to help control their eating impulses and reduce their appetite. We also put her on Metformin, which is for people with diabetes and metabolic syndrome, a pre-diabetic condition which she had. That brought the insulin resistance under control.

With the exercise, the diet, the supplements, and stress management, she turned her life around, and adopted better behaviors. We have a Reiki master who does a lot of natural stress reduction, who did weekly sessions with her for a while. That's a cross between hypnosis and energy healing, so people can learn to manage their stress and bring stress out of the body, liberating the internalized stress.

She had sleep apnea, and was a terrible sleeper. She'd stop breathing 50 or 60 times an hour! Her oxygen was in the low 70s; it should be 98%. It was like standing on Mt. Everest without oxygen. That put a huge strain on her body. It even causes weight gain, because it affects a lot of hormones like ghrelin, leptin, and growth hormone secretion; they all get adversely affected.

By treating her sleep apnea with a CPAP machine [providing continuous positive airway pressure], she got normal sleep patterns, which turned her metabolism back on, and gave her more energy during the day. It's classic, like with a car with a lot of different parts that are failing, so you change the filters, tighten the belts, and align everything so it can run properly again.

Now, we can reduce her medications. She has lost 65 pounds, and is close to her ideal weight, with the lifestyle changes fully in place to maintain her weight where it is. She has been exercising to build lean muscle tissue, which has raised her basal metabolism. Now she's burning calories 24 hours a day, so we can wean her off the medications.

My complaint about the diet industry is this: They tell people they can do something on a short-term basis and lose weight permanently. There's a lot of magical thinking going on, since without changing behavior, lifestyle, or identifying the underlying medical causes of weight gain, 98% of dieters regain the weight within two years. A crash diet or drug or supplement is not going to create long-term weight loss. It will get short-term effects, but then the person will regain the weight, and then some. This is the basis of yo-yo dieting.

It's like stretching a rubber band: you can pull on it temporarily, but when you release it, it'll snap back. That's the set point theory: our bodies become set at a certain weight level. The only way to get long-term results is to relocate the set point. As you stretch the rubber band, you take what it's attached to and move it to a new position. This can only be accomplished by finding out why each individual gained the weight in the first place. Then you can address the specific causes, such as lost lean muscle mass, insulin resistance, sleep disorder, depression, injuries, hormonal imbalances…whatever has moved the set point to this new higher position.

So no one practitioner can effect long-term success with weight loss. At HealthBridge, we have an entire team, including medical doctors, sleep disorders experts, a nutritionist, personal trainers, a physical therapist, chiropractor and acupuncturist, a hypnotist and Reiki master, each experts in addressing a specific underlying problem that can arise in weight gain. If someone has a hip problem, or a back problem, they can't exercise, and start gaining weight. Here our physical medicine team would be called in to fix the problem and get them back to the gym for fitness training. I like to call this a plug and play model, with all these components at the same facility. We look at every puzzle piece: fitness, genetics, hormones, sleep – the whole list, and see which pieces are out of alignment, and need to be fixed. We use the individual practitioners, and put the whole puzzle back together.

Dr. Edelson's practice is in Great Neck on Long Island in New York as of May 2011.

Read Aquameliza's weight loss story in Ken Farbstein's book, Getting Your Best Health Care: Real-World Stories for Patient Empowerment, or get it at Amazon.

Two Resources for Patient Advocates

My book, Getting Your Best Health Care: Real-World Stories for Patient Empowerment, advises professional and family advocates how to keep their loved ones safe during health crises. Thanks to the advocates and activists who contributed stories, many of which appear in Chapter 12, on finding and working with professional patient advocates.

Second, Dorland Health’s new Professional Patient Advocate Institute offers webinars, newsletters, special reports, a directory, and certification for advocates. Membership has its privileges: notably, two free copies of my book, too. The book is also available a la carte from PPAI at a discount, and on Amazon.

Michael Jackson, Tom Brady, and Boris Yeltsin: Getting Your Best Health Care

What do Michael Jackson, Tom Brady, Boris Yeltsin, and Anna Nicole Smith have in common?

They all had health crises with important lessons for protecting your clients’ health, and your family’s health, as told in my new book, Getting Your Best Health Care: Real-World Stories for Patient Empowerment.

How does this book benefit the reader?

The lessons from the dozens of stories of celebrities and others are easy to read and absorb in advance of any health crisis. If the reader is in a health crisis, she can refer to the summary suggestions at the end of each chapter, and the chapter on using a professional advocate, for immediate guidance.

The book also draws lessons by telling the healthcare stories of Dr. Don Berwick, actress Farrah Fawcett, former Pres. George W. Bush, comedian Art Buchwald, Dr. Jerome Groopman, Dr. Peter Pronovost, newsman Ed Bradley, former Rep. Geraldine Ferraro, and many others.

Many doctors and nurses consider themselves patient advocates. What should they do?

My book describes how they can be maximally patient-centered. They can redesign everything from their academic approaches to their wallpaper, and everything from patient orientation and scheduling to end of life discussions.

In 50 words or less, how would you describe your book?

This book teaches patient advocates, both professionals and family members, to partner with their doctors and nurses, through brief stories, each with a lesson. Most chapters feature at least one story about a famous doctor or celebrity.

Who is your intended audience?

Two groups: Professional advocates, and women over 40. The professional audience will consist mostly of patient advocates, geriatric and other case managers, social workers, nurses, doctors, etc. Secondly, women usually serve as the guardians of their family’s health, so they’re the most likely readers. Women who are sandwiched, pressed between the needs of their elderly parents and their children, are the primary audience. Men who take responsibility for their own health, and that of their family, should also read the book.

What does “patient advocacy” mean in today’s healthcare world?

At different times in their work with an ill person, the advocate plays the roles of a teacher, midwife, knight, confidante, and political activist. To me, an advocate is ultimately a champion who helps a single patient get safely through a health crisis.

Why is there an urgent need for a book about patient advocacy right now?

There are three reasons occurring within the last month or so. First is the greater awareness of just how widespread medical errors are. In early April, David Classen, Roger Resar and their team reported in Health Affairs that one-third of hospital patients experience an adverse event. That awareness creates great fear among patients. Knowledge about how patient advocates can keep people safe in hospitals will dispel that fear. Second is the growing appeal of medical procedures that are surprisingly risky, ranging from cosmetic surgery to new ways to use powerful radiation to treat cancer. Third is the broad push by both political parties’ leaders to reduce healthcare costs. President Obama and Rep. Paul Ryan both announced game-changing initiatives in early April. It’s likely this will ultimately impel hard-working clinicians to work even faster, putting patients at risk.

What kind of information can readers expect to glean from the book?

The book is brimming with dozens, if not hundreds, of specific tips, each one presented as the moral of a true story about a celebrity, political figure, family member, or patient advocate. There’s everything from how to find the best Emergency Room, to suggestions for those living with chronic illness, everything from lessons learned in childbirth to how to pass on your wisdom to your heirs.

In the end, what do you hope to achieve through this book?

I have two hopes and dreams. I want to create the new patient, who becomes a partner with doctors and nurses in his own treatment. I want to guide the emerging professional patient advocates.

Where can readers find your book?

Bound books and e-books are available at a discounted price at Dorland Health's Professional Patient Advocate Institute. It’s also available online at Amazon.

Any parting words of advice for patient advocates?

They can rise to the challenge, as did the inspirational heroes in Chapter 12.