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Resource: Finding Unexpected Allies

How a mother whose child died from medical error moved beyond her pain to protect other patients.

As part of our ongoing reporting on patient harm, we’re highlighting reader voices. This post originally appeared in ProPublica’s Patient Harm Group.

Eleven years ago I became a patient advocate by default. My 22-year-old son went into the hospital after enduring a horrific 32 months of suffering from the harm he suffered during an unnecessary brain surgery. We lost him.  

Michael was a nursing student and loved the medical profession, so we promised him our mission would be to leave it better than he found it. That’s the pledge behind our advocacy organization, Citizens for Patient Safety. We’ve learned many lessons over the years, but the one that stands out the most is getting past the Culture of Silence – the tendency of medical insiders to defend each other and shield the patient from important information.

To break through the Culture of Silence I had to learn to play with others.  I had to learn to communicate effectively with doctors, hospital officials, insurance executives, medical and hospital associations, nurses and legislators.
 
Sometimes I refer to it as “playing in the sandbox with others,” because we can all relate to the childhood experience of having to get along with others, play nice, share and otherwise get along with people who have different points of view. The approach has led to the unanimous passage in Colorado of The Michael J. Skolnik Transparency Act of 2007, which provided patients with important background information about doctors. The law was expanded to additional health professions in 2010.
 
Here are five thoughts on playing in the sandbox with others:
 

1. It broadens your perspective. Having relationships with only like minded people gives you tunnel vision. I first realized this when I was working with trial attorneys, who repeatedly told me, a vulnerable mom, how evil medical professionals are because, after all, they “killed my son.” Looking back, I realize that many attorneys were using me as a poster child for their purposes, but were doing nothing to change the system. They weren’t concerned about patient safety or harmed patients – unless it happened to be their client. When one case ended, they collected their 40 percent fee, kicked the family to the curb and went on to the next.

I wanted to help solve the problems that were causing so much suffering, and that was not their business. Once I lost my tunnel vision I realized that I needed to get to the people who could bring about change – the ones who also refused to accept the status quo. (Incidentally, I do still work with attorneys – some want to do the right thing – but I weed out the bad ones.)

 

2. You might make unexpected allies. I wondered why some people defended doctors, and decided to try and understand how they came to their conclusions. Did they believe that every doctor was exemplary?  So I sat down with the largest medical liability company in my state. I explained I wanted to pass legislation so that the public would be able to see full profiles of their doctors because we needed transparency. To my surprise they supported my idea. They knew very well that not all doctors should be practicing and this was a liability to them as well as to the patients. They also gave me a question to add to the profile: “Have you ever been denied medical liability insurance?” This was a revealing insight I would have never known on my own. It became an important part of the law.

 

3. Be open, transparent and agree to disagree. Try to understand their perspective. When lobbying for the bill the doctors didn’t want their birthdates on their profiles due to privacy issues. I thought that was pretty weak, but I said fine. A person could reasonably tell how old a doctor was from when they graduated medical school or when they were first licensed. This was not a deal breaker and they felt that they got something. Plus, it helped get them behind the law. The Michael J. Skolnik Transparency Act of 2007 and 2010 passed with only one no vote no opposition. 

 

4. Invite yourself to the dance. When I learned that the medical society had a patient safety ad hoc committee I called the CEO and asked if it had a patient/family representative. After a few seconds of silence he said, “No.” I volunteered for the position, said “thank you” before he could protest and have now been on the committee for three years. It’s given me many opportunities to help them hear the consumer’s voice. Plus, I’ve befriended other patient safety champions and have convinced many doctors that we don’t have horns and our goal is not to hang all the docs.

 

5. Don’t just think of yourself. Think of things from everyone’s point of view. I am getting ready to expand our legislation to the last five professions in the coming legislative session. I have learned to build bridges and have been having meetings with lobbyists. A draft of the bill has been written and I am now in the process of getting sponsorship from both the House and the Senate, hopefully with two Democrats and two Republicans. We will be ready for January 2013 because I’ve been talking and listening to all the people who have a stake in the legislation. Everyone is invited to play in my sandbox.

 
 

This article is part of an ongoing investigation:
Patient Safety

Patient Safety: Exploring Quality of Care in the U.S.

More than 1 million patients suffer harm each year while being treated in the U.S. health care system. Even more receive substandard care or costly overtreatment.

The Story So Far

Too many patients suffer harm instead of healing in U.S. medicine. That’s why ProPublica’s reporters have investigated everything from deadly dialysis centers and dangerous hospitals to the failure of state boards to discipline incompetent nurses.


This page allows patients, providers and readers to join the patient safety conversation. Our goal is to find out why so many patients are suffering harm and highlight the best ways to solve the problem. Here you’ll find regular updates, and places to share your stories, views or expertise.

Read all of our posts on patient safety, and find out how to get involved.

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