Thanks for that excellent post. Would you do me a favor and read my “Spin” series on this site (Christine Gray — last one The Smart Resident). And comment about what I could have done.

Also, do you mind if I edit the above advice and post it on my ACOR sarcoma site so folks will know what to do? Misdiagnosis is the rule rather than the exception with sarcoma, which is what makes it so difficult. Most patients, in order to survive the bungling, really need to be clear about the steps to take IMMEDIATELY.

Thanks so much.

Christine Gray
ChrisGray1@aol.com

Docs need to listen to their e-patients. You can read all your reports, educate yourself, etc, but if the docs don’t listen nothing will change.

People can and do have more than one primary. My mother, her brother and their mother had two primaries, and my sister had three. My sister’s story might have been similar to your anonymous writer’s mother’s but for a little luck.

My sister, a 9 year kidney cancer survivor, was found to have a solitary lung tumor, She had a previous chest x-ray four months earlier, read as negative. When they knew where to look from the second x-ray, they could see the tumor on the earlier film. The local community hospital chest surgeon wanted to wait another four months before doing anything about the lung tumor (even though evidence from the two chest x-rays showed it was growing). He didn’t think a PET scan would be useful. She got the feeling that he was assuming the lung tumor was metastatic kidney cancer, and he didn’t think anything could be done about it.

From information found on an ACOR listserve, she already had an appointment to be seen at NIH for a research study (cancer in our family is hereditary). The examining doctor there found a lump in her thyroid that her local docs overlooked. The surgeons there insisted on a PET scan before any surgery. They removed the thyroid nodule (it was thyroid cancer), then the lung tumor, as soon as the tests could be completed and the surgery scheduled, in days, not months. They told us before the lung surgery that the odds that the tumor was kidney cancer vs lung cancer were about even. It was lung cancer, and it had not spread into her nodes. She did not require systemic treatment, and is alive and well 6 years later, but she might not have been if she had waited another four months while that lung tumor grew.

After her lung surgery, she had pain so intense that she had difficulty breathing and her oxygen levels dropped, After unsuccessfully adjusting her pain med orders, a resident told her she “would just have to get used to it.” Much of this went on at night, after rules said I had to leave the ICU for the night, so I could not advocate for her. A day (and a lot of assertiveness) later someone finally figured out that her pain pump was not dispensing medicine when she pushed the button, and neither was the second pump they gave her.

I am also a survivor of endometrial cancer. I told my gyn at every visit that my mother and her mother both had endometrial cancer. Instead of taking me seriously, he called me “paranoid.” My symptoms were written off as perimenopause, and when finally diagnosed, the cancer was a stage IIB and required radiation treatment as well as surgery. Eight years later, I was diagnosed with a neurologic problem, late effect, radiation-induced lumbosacral plexopathy, which is slowly compromising my ability to walk and has no treatment. Had there been no delay in diagnosis, I would not have needed radiation and I would be walking a whole lot better today.

My sister and I were reasonably well off and well educated patients. I sometimes wonder how less knowledgeable & less assertive people are able to stay alive.

Patients should be aware that not all disease-oriented organizations have as their primary interest what *patients* want to hear. That’s okay; it’s just a fact patients should know.

For instance I attended a “patient day” sponsored by the Kidney Cancer Association, and it was anything but a patient-centered conversation: it was health professionals (good ones) delivering a relatively lay-oriented version of what THEY talk about. That’s understandable, but it’s not necessarily what the patients wanted to talk about.

In contrast to that, consider when Doc Tom Ferguson (founder of the e-patient movement) was invited to go talk to first graders about being a doctor. Instead of just going and describing what doctors do, he wrote in advance, asking what *they’d* like to learn about. How cool is that?

Got some surprises, too. Almost all of them wanted to know more about stethoscopes. (Funny how people tend to want to know about what’s directly affecting them.) So he brought a bunch of real stethoscopes so every first-grader could experience one for themselves (and listen to their own hearts). “E-patients are empowered, equipped, engaged and enabled” – even in first grade.

Another little girl wanted to know what’s in blood. So he brought a microscope and some slides. Wouldn’t I love to know where that girl is today and what she’s doing.:–)

Meanwhile, back before I’d ever heard the word e-patient, I wrote to the Kidney Cancer Association with my proposed outline for what *I* would like to hear about in *my* idea of a patient education day:

1. Cancer is no longer a death sentence
2. Understanding the statistics you read
3. Creating a support community
4. Finding online resources – medical and social
5. The importance of your attitudes & feelings
6. Taking care of the caregiver
7. Advocating for your own care

Never heard back from ‘em. :–)

So when I express appreciation for the good work ACKC does, and Dr. Ken, it has some heart to it.

Part of what I want the new Society for Participatory Medicine to do is collect stories that, in biz speak, some people call “existence proofs” or “Black Swan” stories – first-hand stories proving that the impossible is not just possible, it’s happening. So your story of what you saw at Mt. Zion is terrific: I hope others reading this will get the message.

Meanwhile, Joanna provided such a nice list of specific takeaways that I’ll make it into a punchlist:

• We tell people to go to their hospitals and doctors’ practices and form a patient advisory committee
• insist that staff and patients and an administrator sit on this committee and address real issues – such as patient safety and quality
• New staff orientation includes a panel of patients and family members that tell their stories and lessons learned
• nursing and medical schools have courses that include patient and family leaders, so the inclusion of patients and families begins at the outset of practitioners careers.

This is what I mean about voice:

“To belong to an oppressed group always meant that you could not pursue your self-interest by acting directly on the world. You first had to account for the oppressor who had so much power over you. So you inevitably wore a mask that helped you navigate the oppressor’s bigotries, ignorances and self-absorptions.”

http://www.nytimes.com/2009/02/15/books/review/Steele-t.html?ref=books

I am just wondering why navigating health care is so different for the two of us, or our writing voices about hc reform are so different.

I have a series coming out on Disruptive Women where I try to explore the great Gender Divide in medicine.

Rationality did NOT work with the overwhelmingly powerful institutions where Sophia was treated. I (or rather she) experienced their complete arsenal for peasants who act up versus a powerful lawyer friend whose daughter was treated there (one of us touched the hind end of that particular elephant, and I don’t think it would have been him).

As I indicated in the above post, without publicity, any committee, etc. they would simply co-opt. Their only concern is is the bottom line legally, and also market competition (positive publicity for functioning institutions). For some reason, UCSF seems to be responsive to patient input. They have created instant feedback loops at Mt. Zion Hospital, so even when life is not perfect, and there is uncertainty and perhaps some medical oops! everyone, from the Top Docs to the janitor, knock politely on a teen’s door before entering, knowing that she was in great pain.

This may simply be a class issue, however, since Mt. Zion’s patients seem to be well off financially. … Mme. Defarge being one exception … :) From past experience, I know that there is a reason for it concerning contracts, or history of the particular institution, or some hidden endowment ….

or perhaps it is simply SF culture, which is very open…
The Mouse That Roared

(Or maybe you’re just pointing to a different approach, major overhaul/solution. That would be fine. Meanwhile my question sits here on my plate, looking up at me.)

Excellent discussion. It is HUMAN to fail, but we are dealing with corporate malfeasance, largescale political problems and solutions. BlueCross and Aetna of CA are once again in the news because even AFTER the latter was fined for illegal practices (dumping patients who sued, I believe), they CONTINUED the practice. Same with CCS in my daughter’s case, even AFTER a federal investigation. What kind of arrogance and power is that?

The mistakes made are indeed at the human level, but they also concern union issues (understaffing of nurses, which is a HUGE controversy in California), and contractual issues. Therefore these institutions do not respond at the human/patient level. They don’t have to as the laws are currently constructed. No state funds for investigation, no problema.

We need something bigger, more clever. More clout. The key is IT, patient instant access to electronic records, then access the Internet for clarification since doctors and staff are unavailable except at their own convenience (and they are not PAID to communicate, a point I made in my previous pieces here).

The “thousand points of light” to counteract the “thousand points of pain” is that ACOR service of misdiagnosed “newbies” on the sarcoma list (and I don’t know of a single sarcoma that was NOT subject to extensive misdiagnosis; it is the norm, not the exception), in terms of direct contact with leading physicians, pathologists, etc. has gone from days to hours to mere minutes on referrals, trusthworthy docs. That is impressive. Our personal networks of trusted physicians are so extensive now, when I get a mpnst “newbie” (the last instance being a five-month-old off of this site), I can figure out the exact right institution and referral process back door within hours if not minutes. They suffer less (and the GREAT NEWS in terms of the mpnst baby, it was a misdiagnosis in the wrong direction — NOT mpnst at all. Dr. Weiss cleared that up.) They had 5 days of hell, which was long enough for the parents to get a taste of a cancer diagnosis for a child.

This speed of contact is near miraculous. The difference between 2003 and 2009 is huge.

Mme Defarge

It’s my hope that as the world wakes up to how healthcare is complex, and how it’s HUMAN to fail, both doctors and patients will want to work together more – and hospital administrators and policy people will MAKE it happen.

Step 1, for me as I introduce new people to this, is to have that slogan at the top of our site sink in for them.

Tragedies like the ones described here just should not happen anywhere near as often as they do.

Paul Levy’s blog has a looong discussion about all the reasons why healthcare is decades behind the rest of human enterprise in adopting process improvement methods that work. It’s Please suggest an answer and the precursor post that he links to in that one. Long story short, his hospital has taken to *publishing* its rate of Central Line Infections (see post for details), which has led to a 14-fold REDUCTION in this often-fatal hospital problem… but he can’t get other hospitals to collaborate in further improvement.

I’m starting to hear the theme music from Tale Of Two Cities, with Madame Defarge knitting and pondering.

Meanwhile, let’s think – what list of things can we teach people who aren’t yet in this discussion??

1. Insist on seeing all your records
2. If at all possible, get a provider who has a patient portal that shows you all your records
3. Find a peer community for your diagnosis who can tell you what to look for (or look out for)

What else? What would it say on the e-patient’s wallet card?

Until ALL health care practitioners believe that patients AND family members are equal and integral parts of the interdisciplinary health care team these preventable tragedies will continue.

The Institute for Family-Centered Care is on a mission to convince all health care providers that families bring valuable information to each encounter. There are many free downloadable tools on our website (such as the “Assessment about patients and families as Advisors”) for patients and health care providers to evaluate their commitment to patient-and family-centered care. You will also find stories of remarkable patients, family members, and health care leaders that are leading the way to make health care safe and collaborative. I welcome and encourage patients, family members, and practitioners to use any or all the materials found there.

P.S. Your friend can contact the state assembly. The politicians will listen and be sympathetic, but the state’s problems are far worse than this.

The key via Internet sources and p.m. is to publicize and embarrass the institutions for their poor behavior, because internal legal complaint departments are aimed solely at preventing lawsuits. One hope here, not to be too cliched, is that the Obama administration will pass some laws with teeth regarding Patient’s Rights, implementation of which is tied to receipt of federal grants and contracts.

All of her issues are technically covered by Patient’s Rights.

The other thing is to report to the hospital accreditation agency (I forgot the name) THAT gets them to sit up and listen, or, demand that the state and U.S. government withhold funding from the institution because of the blatant violation of Patient’s Rights (to be informed; get clear answers, etc. before making treatment decisions).

The problem with contacting the accreditation unit is they don’t report to the patient about outcome. It is “private.” Good luck there!

In retrospect, what worked, and got me lots of points for DISRUPTION (which is my point to Dave, to be effective is not to be “nice” at all; and believe me, the consequences are not “nice” either; they try to crush you) was request for a state and federal investigation of the relationship between the hospital and CCS (Calif. Children’s Services) for sweetheart contracts and collusion, the result of which was physicians ignoring patient complaints with impunity. I was not informed of the result of that either, except I heard through back channels that local CCS offices were almost locked down for a federal investigation.

But of course we have no knowledge of the results of that either, since it is likewise “private,” except further REVENGE (and Dave, please listen to the consequences of genuine disruption/change). Sophia had multiple dislocations of her kneecap, also brushed aside by the same orthopedic doctor who missed her cancer diagnosis. Even AFTER the federal investigation, the CCS case manager (a very nice person) was instructed to mislead us regarding referrals for expert evaluation. He would, for instance, refer me to a local orthopedic practice which was technically on the CCS referral list, but which in fact was refusing to see CCS patients because CCS was slow pay. Then he lied about UCSF (where she is already being seen) as being on the approved referral list.

This resulted in a year’s delay and further active damage to my CHILD, to say nothing of my lost time in getting the paperwork, interviewing, and figuring out regulations. It required a near act of God to get the surgery done, by getting the local unit investigated AGAIN by the state for the EXACT SAME malfeasance that nearly got her killed in the first place. The head of the unit, who gave the orders for misdirection by the case manager (I have inside contacts), is still in place. The institutions where Sophia was initially referred for her sarcoma did NOT have the correct expertise and, incidentally, billed far HIGHER than the correct institution, UCSF.

Go figure. So the answer is some combination of Internet/participatory medicine/New Definitions of Activated Citizenship.

Or, strike at the contractual level.

If you have the time, that is. And if you are willing to risk reprisal.

Thanks for this post. I didn’t mean to be cranky or off point in my response to your last piece re: writer’s voice, but our experience in N. CA is remarkably similar to that of your friend with her mother.

This is the scenario. Large, prestigious (for CA at least) teaching hospital makes an error. Communication protocols are such that the patient is nearly helpless in attempting to reconcile discrepancies that begin to show up in reports and test results.

Once the error is discovered, the Honchos run to ground, and the cover-up begins. The lie becomes the issue: Whom can you trust?

In my daughter’s case, the chief of the oncology department made a string of errors, and attempted to cover up. In this nightmare scenario concerning diagnosis of a virtually incurable cancer in a child, I received info. on best practices from the ACOR sarcoma list. Then begins the creepy feeling that there was indeed something very wrong.

I called Patient Relations to try and get support and clarification, because I felt I was going nuts (how could so prominent a person make such a huge error?), whereupon I was connected to the guy’s WIFE, who heads the department!

I got so paranoid, and we were so scared about medical consequences of the discrepancies (benign or malignant, which sarcoma, if any, which surgery, if any, why send it BACK to a surgeon at a county hospital in an impoverished agricultural community if it is suspected grade II of III sarcoma and expert surgery is the only key to survival?), I finally called THE HOSPITAL CHAPLAIN to try and figure out what the heck was going on. So the medical scenario begins to feel like something out of an Alfred Hitchcock movie.

This is why participatory medicine is a necessity. Also, as per the above story, in my previous e-patient’s post “The Smart Resident” http://e-patients.net/index.php?s=the+smart+resident, reconciliation was achieved by the lowest person on the totem pole — the resident — who took the time, and had the common sense, to clear up communication and present a coherent explanation of what was going on. This has little to do with high tech, although high tech certainly helps the smart, motivated physician get past this.

This raises two issues: 1) how to narrow the Digital Divide between folks who access sites like ACOR and those who do not; and 2) how to command accountability from these large, prestigious institutions. In California, you can’t just “leave” on place and go to another and expect different results. These are state and institutional issues.

fyi of your friend from the ACOR kidney cancer list: You may not want to waste your time in “communicating” with these institutions, because that assumes good will.

Besides Patient Relations, the state assembly, the state department of health and human welfare, and a U.S. senator, I tried the Board of Trustees of the university, the president (when I was asked to contribute money to the university endowment), the AMA and the county health inspection unit. The latter, as it turns out, had received previous complaints about the hospital but lacked the state funds to follow-up. This accounts for the physician’s utter arrogance (he lied to the local surgeon, which finally inspired the surgeon to pull us out of there and refer elsewhere) as well as the university’s certitude that they did not have to remedy the situation, or even address it if they did not feel like it.

The AMA was a JOKE. You couldn’t even find the number or contact information for the county. The state website was for doctors only, aimed at reducing “unfair” high rates of medical malpractice insurance.

As per my comment on your last post, these folks just KILL the patient, then lie with impunity. As per our different voices in addressing medical health care reform, there may be a class difference in quality of care and communication. And, we would have to be brain dead not to question if there is not as well a Gender Divide that is even more significant because it transcends class lines.

Call Roto-Rooter!

Seriously: people around you (and around me) are, inevitably, on a trajectory toward illness someday. What do you see differently from reading the above story? How will the lives around you be changed by your having read that? What will you do differently?