Rocky Marciano and Health Care for All's Consumer Health Quality Council

The boxer Rocky Marciano retired young, at age 32, unbeaten after 49 victories.  So, too, with us:  we disbanded the CHQC this week after a six-year run.  Or maybe we were more like Sylvester Stallone's Rocky:  we got heart, and we always felt like the underdogs, even if, like Rocky, we were oddly fated to have a Hollywood ending.  

Our knockouts:

Successfully advocated for laws regarding: Patient and Family Advisory Councils (PFACs) and Rapid Response Methods (RRMs) in all Massachusetts hospitals, public reporting of infections and serious events, nonpayment for care needed following a serious event, checklists in all Massachusetts hospitals, apology and disclosure following medical errors, shared decision-making, and tracking and reducing harm from CT scans.

Established workgroups to track implementation of PFACs, RRMs, public reporting and nonpayment. Created a PFAC informational web page and a hospital PFAC web page with links to all hospitals' PFAC annual reports. Gathered and analyzed hospitals' PFAC reports and wrote a summary report on their 2011 PFAC reports. Requested information on the use of Rapid Response Methods from all Massachusetts hospitals and created a Rapid Response Methods web page.  Sent written comments to the Department of Public Health following the release of reports on infections and serious events.

Created a website, The Assertive Patient, with resources for consumers who have had difficult healthcare experiences. The site includes a list of all Massachusetts hospitals with information on how to file a complaint or air concerns.

A story bank of written and videotaped healthcare stories from Consumer Council members about difficult healthcare experiences and how those impacted hope to make a difference in improving care.

Bravissimo! from me as former president, to our current and former Dream Team members:

Dalia Al-Othman

Linda Burgess

Celestine Cox

John Evers

Myra Fournier

Ginny Harvey

Barbara Holtz, Vice President

Linda Klein

Laura Liebster

Kuong Ly

James Madden

Lisa Nash

Dori Peleg

Elizabeth Pell, former Vice President

Joseph Prates

Lucilia Prates, first President

Linda Roberts

Keely Sayers

Margot Schwartz

Kim Slack

Marla Stein

Jamie Stevenson

Jen Tosca

Nicola Truppin, President

Deb Wachenheim, HCFA Health Quality Manager

Lee Weinstein

Su Yoon

Alec Ziss

Thanks to Deb Wachenheim for the summary of our accomplishments, and for her dedication throughout.

Expectations of surgery: She's grateful, But

Alina Tugend's story

My father recently had his second knee operation in a year.  The first time, things went poorly.  His rehabilitation was difficult and months later, he still could not walk well or, even more important to him, play tennis.

He had the operation a few weeks ago, and he's already doing much better.  Different doctor, different outcome.  And perhaps, most significantly, different expectations.

"The first surgeon just raised my expectations unrealistically," my father said.  "He told me that in a few weeks I would be out on the tennis court."

I started thinking about how we manage expectations after my father's operation and after a friend, Amy, told me she recently had her cancerous thyroid removed.  The cancer was contained, but one of her vocal cords was paralyzed.  

She wasn't warned about this, but has since learned it is a common side effect of such an operation and can last up to a year.  It makes talking, eating and drinking difficult.

"It's not what I bargained for," Amy said.  "I'm grateful to be alive, but if I had just known, I would have been more prepared before and afterwards."

Advice to people considering surgery:  Consult a professional patient advocate, or read about the experiences of older and wiser patients on the Internet, before consenting to surgery.

Read a story about a man's ill-informed consent for surgery.  Thanks to Alina for her article, "What Did You Expect?  It Makes a Difference," excerpted here from the NY Times of Jan. 14.

Healthcare acquired infections: Even Pres. Garfield

The saddest part of the story of the assassination attempt on Pres. Garfield more than 100 years ago is the medical treatment he received in the months after he was shot.  Joseph Lister had recently shown that antisepsis [sterile conditions] greatly reduced infections, so doctors throughout Europe had already widely started using carbolic acid and other practices.  But Garfield's doctors repeatedly poked into his bullet wound with unwashed hands and probes, causing infections that ultimately killed him.

The story is so so sad because it's so familiar.  Healthcare-acquired infections still injure many thousands of patients.  Evidence-based practices to prevent them often go unused.

The head physician treating Garfield even had the gall to bill the government the equivalent of $1 million in today's dollars for his treatment.  This, too, feels far too familiar, as payers continue to pay exorbitant prices on our behalf for medical errors.

Advice:  Read Candice Millard's excellent book, The Destiny of the Republic.

Read another president's medical story.