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Healthcare is complex. Worse, our healthcare delivery systems are immensely complex. Sometimes things go wrong.

The long and difficult story below was submitted to me by a stalwart former member of my kidney cancer group on I’m reproducing it here with her permission, anonymized; she says she wants the story shared so people understand what they need to do, but she wants to be anonymous because she can’t handle, right now, any personal contact that might result.

It almost rips my heart out to read a story like this.

For me this story triple-underscores the importance of every patient, caregiver and provider embracing the principles of participatory medicine. Medicine is too complex today for any one group to bear all the responsibility – even great doctors. And we as patients need to understand that our lives are on the line, AND we can make a difference.

The missed diagnoses and drug overdose in this story happened at major academic medical centers. The banner at the top of this site says, “Health professionals can’t do it alone.” Can there be any clearer example?

Jargon: RCC is renal cell carcinoma, the type of kidney cancer that I have. Sutent and Torisel are medications. RFA is radio frequency ablation, a “cyber knife” sort of non-invasive treatment.

Hi, Dave,

We have been in touch in the past. I was an active member of the ACOR Kidney site for a few years until my mom passed away [a while ago]. Since then I’ve checked in with ACOR from time to time to see how those with whom I’ve become cyber-friends are doing, but my participation has waned due to the passage of time and the series of events that occurred with my mother’s journey.

I have been in the healthcare field for most of my working life. I started as a pediatric nurse, detoured to law school and practiced law for a short time and then went into managed care in a variety of positions. I’ve spent the last nine years in risk management and patient safety and am very familiar with much of the concepts that you write about on your blog.

Patient participation and partnering, patient-centered care are right in the forefront in the industry these days. Making healthcare a safer place for patients has truly arrived. I remember when it all started and am glad to see it where it is now. Of course we all know (particularly those of us who are patients in the system or are supporting patients in the system) that there is a long way to go yet, but the conversation has certainly begun.

I want you to know that I admire your work. I read your blog. I love Paul Levy’s blog, too. I think you all are doing a great thing. One day, down the road, I hope to help contribute in a more active way. But for me, I think it will take time. I am still reeling from the discovery that my mom actually had two primary cancers – a tumor in her kidney (high grade, yes, but clear margins and confined to the kidney itself and removed surgically) and at the same time what was diagnosed as lung and mediastinal lymph node mets [kidney cancer that metastasized to the lungs] was actually lung cancer. The treatment options for lung cancer would have been vastly different than what we chose for what we thought was metastatic kindey cancer.

When we went back and looked at the records we saw that it was documented on CT reports that lung cancer was suspected as early as the day after she took the first dose of Sutent (she had four rounds of it and it made her violently ill). In addition, when she arrived out in California to see yet another specialist in March, fluid was removed from her lung. Cytology report of that fluid showed cells inconsistent with RCC, and a lung primary was suspected. Several radiology reports also showed this. Yet we were still never told this, at that facility either.

It wasn’t until my mom came up to Northern California to live with me, was admitted to a community hospital and spent three weeks there, that an analysis of abdominal fluid just before her death showed an inconsistency with RCC. Her physicians were devastated and thought they were wrong (my mom had been at two big-name academic facilities prior to this community hospital), but we had kept a notebook of her records for their reference since they were picking up such a complex case, and we showed them the reports. They couldn’t believe it themselves.

They made the discovery because they communicated the old fashioned way. When the pathologist saw something odd on the slides, he picked the phone up and called the ordering physician to discuss it. They had the same sophisticated computerized record system that the other two facilities had, but in this small community hospital, they used it the right way. The ordering physician while on the phone with the pathologist was able to sit at a terminal on the floor and look at information along with the pathologist.

This community facility had helped us obtain Torisel from Wyeth labs just after FDC approval for RCC, but before it was available on the market. She had two doses of it before she found out that she didn’t even have RCC (I think the drug manufacturers could be another potential catch point if they had standards for confirmation of diagnosis but they rely on the ordering physicians for that). Since she was worried about my sister and me having a genetic predisposition to whatever other cancer she had, she wanted them to work her up to verify the primary.

Unfortunately, she died before she ever knew for sure what was going to kill her. We found out after the fact that it was metastatic lung cancer.

After almost a year of deep grief, my sister and I went back to the treating institutions to discuss the issue. We wanted them to know what happened and wanted to know what system changes would be made. (I thought this conversation would be easy in this day and age, and given my background). To be honest, neither institution seemed to give a rat’s ass.

We certainly weren’t assured of any fundamental changes that would be made to help other patients. Both said our case would be discussed to raise the “index of suspicion”. I didn’t hear how review of lab reports or communication with radiology on findings that didn’t make sense would change at all.

In addition to that nightmare, from the get-go there was complete lack of coordination of care. I had to be the case manager dealing with the HMO, the referrals, etc. The only thing that was easy, ironically, was the pharmacy stuff. Sutent was covered. My mother took four rounds of it – a drug that was completely unnecessary and very damaging, but she took it. She only had to pay $40/month for it, the HMO paid around $10,000 a month. What a complete waste. And when I think of the poor people on the ACOR listserv who needed that drug and couldn’t afford it and here my mom was taking it and didn’t need it, it is truly disgusting. It was actually doing her harm.

One thing we were told about Sutent in our follow-up meetings, about the missed diagnosis, was that it is being used as a second or third line drug in the treatment of some lung cancers. That was of minimal comfort.

My mom was a pragmatic soul. When she heard she had RCC she couldn’t even think of one other person who had that disease. She was a dental hygienist and knew many many people with lung cancer. She watched how some of them took chemo radiation and everything else and died anyway. She watched those who didn’t do anything and lived for years. She talked about lung cancer for years since so many she knew had it and concluded that the treatment was worse than the disease. Being an ex-heavy smoker I think she sort of anticipated a lung cancer diagnosis some day.

Knowing my mom, she’d have opted for RFA or some type of treatment that didn’t have side effects. The only reason she took the Sutent is because she was assured that she wouldn’t vomit or lose her hair – two things that she was incredibly concerned about as crazy as it sounds AND she, like us, got caught up in all the hope that was being generated by the listserv and the research breakthroughs at the time.

Last but not least, my mom experienced a horrific Dilaudid overdose that nearly killed her two months before she actually died. She received 10 times the ordered amount (due to a programming error and a failure to confirm an order change) over a period of 11 hours.

Again, with my background I had a certain expectatation of how that situation would be handled – an apology, explanation of what happened, assurance of how things would change. But instead, my sister and I had to fight a premature discharge from the hospital before mom was clinically stable, and had multiple conversations with many people at our demand to find out what happened.

I ended up having to barge into the Chief Medical Officer’s office to actually get heard. It was a true nightmare in every respect and has complicated the grief process tremendously.There are way more if-onlys and what-ifs than there should be for anybody.

One day, down the road, I’ve thought myself of sharing the story at a professional society meeting or as part of the speaker’s panel that you discuss on your blog. For now, it helps just to share the story among those interested in improving the healthcare system on a one to one basis and on condition of anonymity. “Going public” with it in any big way just feels like too much right now.

I admire what you do. People need to keep telling their stories. These things are real and they happen to people every day.

I had a family member who was a physician who wanted to be more involved in the case from the get-go. She wanted to be reading the reports of the tests right along with the experts, but my mom was uncomfortable in the beginning having her medical information being read by a family member besides my sister and I. We were so busy coordinating care that we didn’t start reading the actual reports until it was too late.

[B], a former member of the listserv, used to say that he got his wife’s reports and read every single one. If something didn’t make sense, he’d ask about it.

The one radiology report that we did read didn’t make sense to my mother (it was way down the road from the one that talked about a suspected second primary)…she demanded that the physician reconcile it. It was completely different from his interpretation of what was on the screen. That’s when we discovered he didn’t agree with the radiologist at all.

We got so uncomfortable with his refusal to call the radiologist to reconcile the report that we pulled her care and brought her out to see another expert in California.

You should encourage patients to read their reports. [B] used to do that. It is a simple exercise and can make a huge difference.

In a later note my friend restated: “The place where the errors were caught was a small community hospital. I think those types of places get a bad rap sometimes…we found them to be the most caring and patient centered of the three places that we were treated and THEY willingly got the Torisel for us when the academic center expert told us it wasn’t available.”

I don’t really know where to close this, but this is as good as anything – another excerpt from the Wikipedia definition of participatory medicine:

Participatory Medicine is a model of medical care in which the role of the patient is emphasized.
      Participatory medicine is a new model of medical care, based on the development of a team that includes the e-patient, patient groups & specialized social networks, the entire care team, and clinical researchers in a collaborative relationship of mutual respect. It requires equal access to all the data and equal rights in the decision making process, based on all the data available, the information gathered and the collective wisdom of peer social networks. It is based on the understanding that optimally treating an individual patient suffering from a complex medical condition is often beyond any single individual’s ability.

I think the time has come.