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.

More Telluride reflections

I am now back in Seattle, home from the Telluride Patient Safety Roundtable & Summer Camp. I am very thankful I had the opportunity to participate. It was emotionally exhausting (I cried the first three of the four days), but I have a sense of hope. I met leaders in patient safety—some of whom I had seen in online videos, others I had not heard of. But the message from all of them was clear: There is no compromise in patient safety. No compromise in disclosure. No compromise in informed consent. Safety and transparency must underlie all of healthcare. And that is a very different perspective than my family has encountered in Kansas, at both the local hospital we are dealing with and at the state level. So today I feel hope knowing that my family is not alone, but I also feel overwhelmed knowing that those of us who believe in safety and transparency—and are not willing to back down—face tremendous obstacles. We have to change systems that would rather employ short-term thinking (don’t tell the patient or family what happened; blame the nurse for the error the system set her up to make) rather than long-term thinking (let’s uphold the patient’s right to know what has happened to his or her body; let’s talk about harm incidents with everyone involved and hold ourselves accountable for delivering safe care—whether that means improvements in our system or our communication or our training).

I know I am not the only one who feels overwhelmed. I am sure that the residents feel this too. They came to Telluride with an interest in patient safety and knowing that improvements need to be made. And now they have heard the stories of several patients and families affected by medical harm. They have met a group of patient safety experts for whom compromising patient safety and transparency is not an option. They have seen that the healthcare system is even further away from patient-centered care than they realized. But they also learned a bit about what it takes to deliver better healthcare: they learned about teamwork, negotiations, and listening to patients. And now it is their responsibility to do something within their departments to begin to make change.

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.

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Medical errors affect family members, not just the patient

I hope that anyone who has spent some time reading this blog comes away with an understanding that medical errors can create very deep and painful scars not just for the patient, but also for family members of the patient. In the months after my father’s death I remember spending hours and hours searching the web for any sign that other family members of medical error victims had experienced what I was experiencing: disgust that the medical system would close its eyes to the unnecessary suffering of my father, a sickening sense of betrayal by those with power over patients’s lives, and a deep frustration that my experience and expectations were deemed meaningless each time my words bounced off the fortress guarding the medical system.

I couldn’t believe that other people in this situation would just shrug their shoulders, say “Whatever!”, and go back to their lives.

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The consequences of decisions

My mother and I have been invited by Shelly Dierking at PSE Partnership to attend a Telluride Patient Safety Summer Camp this June. Most of the other people attending will be medical residents and patients safety experts. We will be providing our perspective as family members of a medical error victim.

I have a friend who is a physician, and I emailed him to say that I will be going to this camp. He wrote back to say, “The Telluride camp sounds like a great opportunity, but it will probably dig up bad memories. Don’t let it take you off track from your PhD work!”

That was the wrong thing to say.

You are probably thinking, What? Why was that wrong? That sounds like a perfectly reasonable thing to say.

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A letter from my mother to members of the Kansas House Committee on Judiciary

As I reported in this post, my mother and I testified before the Kansas House Committee on Judiciary about our bill (HB 2376) to require disclosure of harmful medical errors and unanticipated outcomes. Also heard that day was an apology bill that would alter rules of evidence in malpractice cases. The committee chair (Lance Kinzer) decided to have the committee work on the apology bill last Monday, but not our bill. My mother traveled back to Topeka to be present for that meeting.

I asked my mother to listen for two things: (1) what problem the committee thought they were addressing with the apology bill, and (2) how often the discussion mentioned physicians and patients. My position is that this bill could address only two types of problems: Either there is a problem of inappropriate evidence being used in malpractice cases (and then I would expect to see examples of this inappropriate evidence brought up during their discussion), or it is a problem that many other states have these types of laws but Kansas does not—causing Kansas to look deficient in legislative output (and the bill will correct this deficiency by adding one more state statue). This bill does nothing to ensure that patients are informed about medical errors. That would require a disclosure bill, such as HB 2376. And of course and it does nothing to help prevent those errors.

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My family’s testimony before the Kansas House Committee on Judiciary

Last Monday my mother and I testified before the Kansas House Committee on Judiciary in support of our bill that requires disclosure of harmful medical errors to patients (and it also protects disclosure conversations from use as evidence of fault in court).

Testimony was heard on two bills during the hour-and-a-half hearing. HB 2523 (an apology protections bill) was heard first. Our bill was heard second. Continue reading