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.

The doctor is in your home: A medical clinic in public housing

Thomas Rhoe and his neighbors used to get an ambulance trip to the Emergency Room for common urgent medical problems, even for colds. Now he'll be able to take the elevator downstairs to an in-house clinic for treatment when needed.

Dr. Jeffrey Brenner of the Institute for Urban Health at Cooper Hospital in Camden, New Jersey had looked at the reasons why so many of Northgate II's residents used Emergency Rooms and hospital care so much, costing $12 million dollars over the last six years. He learned that few of the senior and disabled residents had access to primary care. He founded the Camden Coalition of Healthcare Providers, which worked with Camden Churches Organized for People, whose interviews of 50 tenants revealed the residents' access and transportation problems. Their work resulted in a partnership with Reliance Medical Group, which plans to open the medical office in June. The office will have three exam rooms, and will be staffed by a nurse practitioner or doctor. Spanish-speaking staff will be available.

Read about other innovative healthcare practices in my book, Getting Your Best Health Care: Real-World Stories for Patient Empowerment.

Thanks to Claudia Vargas of the Philadelphia Inquirer and the CCOP News, the sources of this story.

Four people in my family: Testimony on payment reform legislation

Testimony at the Massachusetts Statehouse, May 16, 2011
I'm Ken Farbstein, past President of Health Care for All's Consumer Health Quality Council. Thank you for the opportunity to tell you about four people in my family, in stories that are in my new book.

A surgeon once told me I should have Lasik eye surgery. When I probed to learn more, she said I'd probably still need to wear glasses afterward. I said No. Another time, an ENT surgeon said I should have sinus surgery. I looked into it carefully, and then I said No. Instead, both times, I shared in the decision-making by reading, and asking questions about the effectiveness and the alternatives and side-effects. Then I chose non-surgical alternatives that were less costly. If patients can share in the decision-making, they'll make better informed choices, and sometimes they'll decide against surgery – which could save money for the whole system.

And near the end of life, a lot of people would choose hospice care, like we chose for my father, who was then in the final stages of Parkinson's Disease. That was better for him, and for us, and it must have actually saved money for the taxpayers too.

My very active Aunt Anne had always lived alone, in Denver, far away from the rest of our family. So she didn't have the family support that helps keep people healthy. She didn't like doctors much, but sometimes she'd see a doctor, just to get a prescription. Perhaps if her primary care provider had had a patient educator on a medical home team, they could have worked out some kind of agreement with her about regularly taking her medication. If so, it[s possible she could still be alive. She died from a complication of untreated diabetes.

My uncle Leon in Florida had a Type A personality. He loved to eat. I doubt he got much exercise. Over the years he developed heart disease, and after he retired to Florida, had multiple stents inserted by the hospitals there. If the system had paid his healthcare providers to keep him healthy, that could have moderated or prevented the coronary artery disease and his fatal heart attack.

So in my family, patient empowerment would have helped. Transparency would have helped. A public health focus on prevention would have helped.

I think many people have the same experiences as my family has had, but I think they happen so often that most people don't even notice them. There are so many people - maybe some in your family? -with diabetes, high blood pressure, asthma, or a substance abuse disorder, or a person who smokes, or drinks more than they should, or weighs more than they should, or doesn't exercise enough. Shouldn't the payment rules encourage providers to keep your family healthy?

The payment rules create a very subtle current that carries us in the wrong direction, so that providers and consultants who want to improve prevention have to make their way against the current, so they can't make much headway. Please fix the rules.

After his rocky rehabilitation: Baseball star Kendrys' Morales surgery decision

Los Angeles Angels first baseman and superstar Kendrys Morales was just way too happy, and you would be too. Leading the team last season with 11 homers as of May 29, he had just hit a game-ending grand slam home run, and basked in the cheers of the crowd as he jogged around the bases. At the end he joyfully took a huge leap, landing on home plate. And wrecking his left ankle, his livelihood for more than a year, and maybe his team's chances for a future pennant.

The fracture healed fully, but degenerative cysts and scar tissue developed. "Kendrys has worked as hard as anybody in coming back from a serious injury, and it hasn't worked," said the team's medical director, Lewis Yocum.

"I wasn't ready to have surgery again, but this is the best path for the team and myself," the slugger said, in explaining the decision to undergo surgery again. He and the team's General Manager, Tony Reagins, announced the decision after the team gave up on his rocky rehabilitation.

The medical director said recovery from the surgery should take at least six months, but could change depending on the nature of the procedure, which has not yet been scheduled.

Morales had a team of advisors that included the medical director and General Manager, among others, who helped him make the treatment decision. He and they took the decision seriously, giving it much thought. First he chose a non-surgical route of rehabilitation, i.e., physical therapy and exercises, and tried his best to make that work. He was aware that the decision affected more than himself alone.

Advice to people who've suffered a severe injury: Like Morales, think carefully beforehand about surgery with a team of advisors, considering the effects on those around you. Work hard at self-care if that’s an option.


Read more about the surgery decision in Chapter 3 of my book, which you can get at Amazon. Thanks to the Associated Press for the source story, as in today's online version of USA Today.

They claimed the NHS would have killed me off: Stephen Hawking on universal health care

Stephen Hawking, the eminent physicist and 40-year survivor of Lou Gehrig's Disease:
A statement in the United States press in summer 2009 claimed the National Health Service in Great Britain would have killed me off, were I a British citizen. I felt compelled to make a statement to explain the error. I am British, I live in Cambridge, England, and the National Health Service has taken great care of me for over 40 years. I have received excellent medical attention in Britain, and I felt it was important to set the record straight. I believe in universal health care. And I am not afraid to say so.

See Chapter 9 on living with chronic illness, in my new book, Getting Your Best Health Care: Real-World Stories for Patient Empowerment. Thanks to Claudia Dreifus for the source interview in Tuesday's New York Times.

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.