Participatory medicine might have reduced this tragedy

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 ACOR.org. 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.

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Comments

21 Responses to “Participatory medicine might have reduced this tragedy”

  1. ePatientDave says:

    e-patients.net: Sad story where participatory medicine might have helped – a lot. http://is.gd/kM5E #pmed

  2. SusannahFox says:

    RT @ePatientDave e-patients.net: Sad story where participatory medicine might have helped – a lot. http://is.gd/kM5E #pmed

  3. People, what can we learn from this?

    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?

  4. Christine Gray says:

    Dave,

    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!

  5. Christine Gray says:

    REVENGE AND CONSEQUENCES TO TRUE CHANGE AND DISUPTION

    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.

  6. I am so very sorry to have read this story; my younger sister died before her physician reluctantly agreed to consider that she might have 2 different cancers and had her cells reviewed by another pathologist. Had he listened to our concerns and followed up with information we provided to him earlier she might have made different treatment and end of life decisions.

    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.

  7. Thanks for your comments, Christine and Joanna.

    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?

  8. Christine Gray says:

    Dave,

    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

  9. barb hansen says:

    RT @SusannahFoxRT @ePatientDave e-patients.net: Sad story where participatory medicine might have helped – a lot. http://is.gd/kM5E #pmed

  10. So, Mme Defarge, what do we tell peoples??

    (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.)

  11. 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. And new staff orientation includes a panel of patients and family members that tell their stories and lessons learned. And that 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.

  12. Christine Gray says:

    Dave,

    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

  13. Chris, fwiw, I know at least in Boston a cultural change can happen in hospitals without regard for financial class. And the more I learn (which is still a pitifully small amount), the more convinced I am that it does all come down to will: where people want to change their culture, and where management (and slacker peers) don’t stand in the way, change can happen.

    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.
  14. Kenneth Youner says:

    Again I think that the answer lies in patient empowerment and better communication. People must be taught that the quality of the medical care they receive must be monitored by those people with the most interest-that of course is the patient and their family. In the most perfect of worlds the physician would be the person doing the monitering. This can and does happen. However it is clearly not clear for all. My wife and I went to Washinton, DC to testify for the NCCS (National Coalition for Cancer Survivorship) on the vital need for a written case summery that would be given to each cancer patient. This would be a great step towards allowing patients better access to their medical records. There is now a bill before congress to get federal medicare funding for this patient summery.

  15. All, Ken Youner MD is a vigorous participant on my ACOR kidney cancer group, and active in ACKC, Action to Cure Kidney Cancer, a terrific patient-oriented, patient-driven group.

    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.

  16. Trish Miller says:

    Read all your reports, ask yourself if they make sense, and do not allow assumptions without evidence. Ask “How do you know?” Get someone to listen. If your doc doesn’t listen, fire him and get one that will–although that can be easier said than done in communities where you need to wait six months for a new patient appointment.

    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.

  17. Trish, that’s a powerful comment, worthy of being a post of its own, in our “e-patient stories” category. Thanks for pointing out the potent takeaways, the “what we can teach people to do.”

  18. Barbara says:

    Your stories are so heart breaking. I worked in healthcare for over 21 years so maybe I can give you some assistance. I’d like to try. When you first encounter errors in diagnosis and you can’t get anywhere with the physician, you need to go directly to the adminastrator of the hospital or surgery center where you had services. Don’t bother with the Compliance Officer. All he is is a screening mechanism for the Chief Nurse Executive and the Adminastrator as well. They want him to find out what your complaints are so they can be prepared for your visit. This is SO true! When I would show someone to the Adminastrator’s office I would have to tell them quietly why I was bringing you there. The first question out of their mouth, is “Have they talked to compliance yet?’
    Everybody has a boss. Everybody has to answer to somebody. There is the Joint Commission, there is Dept of Public Health, Dept of Aging,etc. You have to be assertive, not passive. All hospitals have Boards. Almost all Hospital board meetings are open to the public. Believe me, the Adminastrator does not want you going to the board!
    A few years ago I had a screening mammogram at our local hospital. The radiologist that read it stated I had “lumps” in my breast and my primary care physician said I had to have surgery right away and that they would probably have to remove my breast. I was scared to death! I called my daughters that live in other states and they demanded I get a second opinion. I went to a breat specialist, who did numerous tests. When he was done testing, he told me that there were not any lumps in my breast. I kept asking, “are you sure, are you sure?” He said, Barbara, I have a brand new pick-up out in the driveway. If you had a lump (or lumps) I’d schedule you for surgery and that would help pay for my pick-up,you don’t need surgery!
    Later, I went back to my first surgeon and shared with him what the specialist said. All he did was just stare at me. Then I said, if there aren’t any lumps, what would you have cut out? He turned around and walked away.
    I have a regular mamaogram every year and have not had any signs of lumps since.
    I have shared that story with so many people and they have come to me asking how to get a second opinion, who to go to, etc.
    Patients are scared and doctors know it.

  19. Christine Gray says:

    Barbara,

    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

  20. Barbara says:

    Hi Christine.
    Of course you can use what I’ve written. If I can help in any way, just let me know.
    I would also like to tell you that after being a patient accounting supervisor in charge of billing, registration, etc, I might also be able to help petients with their medical billing questions. I would like to become a patient billing advocate so I am researching all I can on the subject. I am now retired so I do have some time to help people.
    I have a question. I have recently been diagnosed
    with Polymaygia Rheumatica and seeing a rheumatologist for only the second time today. Do you know of any blogs or websites I can research for this condition. I have googled this diagmosis, of course, but I would like to talk to people who have this condition. Sometimes my pain is almost unbearable!
    Again, if I can help, just email.
    Barbara

  21. Thanks for posting this great blog. View mine!

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