Talking about my family’s experience: Video from CRP training in Lakin, Kansas

It has been five years since my father died. It took 3.5 years for us to learn what happened. In March my mother and I spoke publicly about this for the first time.

My family has started working with the Collaborative for Accountability and Improvement. They work to help hospitals to establish Communication and Resolution Programs (CRPs) for responding to patient harm in ways that promote healing, learning, and accountability.

This video was filmed at a training session at Lakin, Kansas. My mother and I gave the first presentation at this event.

The Patient Voice Institute: A place for patients and families to tell their stories

If you are interested in an effort to use the stories of patients and their families to improve healthcare, take a look at the website for the Patient Voice Institute. This is a great way to bring attention to what works well in healthcare and what needs to change. I encourage you to spend some time reading about these experiences. Our story is included.

An acceptable level of preventable patient harm?

I was at the Kansas Healthcare Collaborative (KHC) 2015 Summit on Quality two weeks ago. During the presentation on the Kansas Hospital Engagement Network I learned something disturbing: many hospitals throughout the country agreed to a goal of reducing preventable patient harm by 40% by the end of 2014, as compared with 2010 levels. This goal was set by a program called Partnership for Patients from the Center for Medicare and Medicaid Services (CMS).

Let me state that again: the GOAL — the target that hospitals are striving for as they serve the community — is to reduce preventable patient harm by 40%. I was not aware that harm comes as a mix of acceptable harm and unacceptable harm and the concern is getting rid of the unacceptable portion.

But if hospitals are striving for such a goal, I simply ask that they fully explain this to patients and families. And to help, I would like to provide some ideas for facilitating this communication. Continue reading

Telluride Patient Safety Roundtable & Summer Camp, day 1

My mother and I are spending the next few days in Colorado participating in the Telluride Patient Safety Roundtable & Summer Camp. This event brings together leaders in patient safety, medical residents, and a few family members of people who were victims of medical errors. It is a small group, about forty-some people. The purpose is to promote safety and disclosure in the healthcare system, with an emphasis on training the next generation of healthcare leaders.

I have three thoughts to share from yesterday.

Continue reading

Peg Metzger’s experience of medical harm

MITSS has shared a video of Peg Metzger talking about her experience with harm caused by a medical procedure.

Peg had an out-patient endoscopy procedure that involves inserting an endoscope down her esophagus to examine her bile duct. Instead of going home that afternoon, she was admitted for observation and told that the procedure would be repeated in a few days. No one told her or her husband that her small intestine had been perforated, even though this information was in her medical record. And this began her very long ordeal.

Here are a few quotes I have selected that explain what she experienced and what she felt.

7:04
During all this time and all these admissions, no one has anything to say about what happened to me or why I am in this mess. I wait for my ERCP doctor to come back, but she never reappears. And this torments me. I never asked, “Why me?”, but I pondered, “Why does she get to go on with her life with utter disregard for mine?” And mostly, “Why should an adverse event feel like a hit-and-run accident?” She is treating me the way I would treat roadkill. Feel bad, but keep moving and what ever you do, don’t look back.

8:10
Mostly though, I believe that I need to be a model patient. A good patient, because my physical care depends on the hospital staff, and I need them to like me. I am truly and completely trapped.

It took 18 months until a surgery finally “put her back together again”

14:42
I am braver than I used to be, but I am also cynical. I’m cynical about authority and prestige, and I’m leery of healthcare, probably in ways that are a little bit unhealthy. I guess I’ve come to see the world as divided into two camps. One camp is full of people who accept responsibility for their actions, maybe even for some other people’s actions, and the other camp [is] full of people who don’t accept responsibility for anything.

Peg’a descriptions of how she was treated and how this made her feel really resonate with me. Her roadkill analogy is right on target—and I think it should be incorporated into communication training for medical professionals.