Today, members of Congress across the country are opening emails and letters signed by more than thirty patient advocacy organizations and activists, asking for one thing: accountability for preventable medical harm. Why is this needed? 440,000 patients die “before their time” each year because of medical errors in the hospital, making it the third biggest cause of death in the nation. (A John Hopkins Surgeon offers a gripping look at the problem in this brief video.) The campaign’s specific request: to convene a Congressional Committee on Patient Safety that will form a National Patient Safety Board. Similar to the National Transportation Safety Board, it would routinely investigate reports of medical harm, look for flaws in the system, and fix them so that our families will be as safe as possible. I’m among those who sent the letter to my Congressional delegation, looking for their leadership on this issue. A local news report on the campaign is here.  Full text of the group letter goes out to the media today from the Consumers Union Safe Patient Network. 

I have the good fortune to work with phenomenal patient and family colleagues (special thanks to Yanling Yu, PhD, Washington Advocates for Patient Safety, who took the lead on the letter), as well as some of the finest clinicians, institutions and health care thought leaders anywhere. Through their leadership, commitment and partnership with patients and families, they have produced remarkable results on patient safety (reducing the number of infections to zero, for instance) and are modeling safe care that’s also about dignity, respect and the “whole person” (as with Planetree). These examples offer evidence that “great” is attainable. How can we tolerate less when lives are at stake?

With attention and aligned incentives, the gaps and glitches that cause medical harm can be repaired.

It takes public will. That’s where the Patient Voice (that’s you!) comes in. Patients and families must speak up. If you want your Senator or Representative to go to bat against special interests and inertia that thwart change, you have to give him or her your support and your story. Send the full letter along with your personal message to your own Congressional representatives. Tell your friends. Share this post.

Meantime, if you wonder what “gaps and glitches in care that cause medical harm” might look like, my friend and colleague Mary Ellen Mannix is one of many who can tell you. She shared this today in her letter to Congress, and in her blog, James’ Project.

Mary Ellen’s Story

When people hear what happened to my fourth child, most quickly assume we won a settlement or a “jackpot” verdict or someone at least lost a license.

James was prenatally diagnosed with a discreet coarctation of the aorta – a common congenital heart defect that has been treatable since the 1960s. Depending on the level of narrowing, many people live without interventions until later in life.

We felt blessed that a good doctor caught the simple anomaly at an ultrasound. This gave us time to research and talk to clinicians. All of whom said our son would NOT need open heart surgery. Yet, that is exactly what they did. We never signed a consent form for open heart surgery or all the intensive anesthesia that required. We asked about anesthesia. They said, “General”. It wasn’t until after he died that we learned about deep hypothermic circulatory arrest (DHCA).

While most malpractice allegations start from poor communication, James’s resulted from no communication. And – quite frankly – a lot of lies on behalf of the very people we entrusted his care.

When we asked the surgeon about his success rate – because there was no other way we were able to get the information – he said, “100% successful.”

In fact, he had more medical malpractice claims in pediatric cardiology than his peers. He had left a leading children’s hospital in the mid 1990s having caused dozens of malpractice cases (perhaps more – its hard to find all the data).

After surgery we were told, “Everything went great. No problems at all!”

We learned during trial -and not one second before – that they had in fact had our 2 day old son on a known broken ventilator for open heart surgery.

We were not allowed to be with our son in the 8 hours post surgery “because we need him to be settled. We need to keep a close eye on him.” Yet, our son coded when the attending had left the hospital to pick up dinner; the nurse practitioner had gone to the dining hall; and the bedside nurse had gone to the break room. No one was watching him. He was gasping for air –  having been taken off the ventilator before he had ever breathed above it post-surgery – and no one was there to re-intubate him.

I could go on. And I have.

Somehow after nearly thirteen years of sorrow, anger, pain, grief, loss of home. jobs, and many broken relationships – I have gone on.

The goal of my “James time” here on James’s Project is to save another family from this preventable tragedy. And to save another clinician from this heartbreak and guilt.

A year after the “negligent but not responsible” verdict I had a one on one private conversation with one of the docs we sued. He felt as I did.

James should not have died. The lack of information and communication should not have happened.

I have supported multiple national and local campaigns to reduce preventable medical errors: staffing; newborn screening; transparency; medical education; etc.

What we all need is a national, collaborative and collective voice to demand safety in medicine. This will reduce the exorbitant financial strain the current healthcare system is on our US economy. More importantly, this will save more American lives.

Improve our infant mortality and maternal mortality rates.

Save more families.

Today a group of advocates who are a part of Consumers Union Safe Patient Project – including myself – has signed a letter and sent it to congress urging a Congressional Committee on Patient Safety convene and the formation of a National Patient Safety Board.

Please join our call for effective change to save babies.

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Tell a friend or family member about this campaign and sign on too.