My quest for a second qualified opinion on an abnormal mammogram (microcalcifications) began in October, Breast Cancer Awareness Month. Two days before the end of the year, a sharp surgical resident put an end to the spin. The solution was simple – and not high tech. She got on the phone and spoke to the various physicians involved. She was proactive where the system was flawed or obviously broken. Most important, she listened to me, the patient.
First, she had the radiologists clarify their thinking. The first radiologist agreed there were no significant changes in microcalcifications between the ’07 and ’08 mammograms. Nonetheless, he chose a more conservative BIRAD 3 (indefinite) designation and opted for a closer follow up (six months) – which is fine with me. The second radiologist, more of a “niche” specialist and therefore a “qualified second opinion,” opted for the BIRAD 2 (benign) category with, he said, follow up recommended at one year.
Despite being guaranteed payment for his services, the specialist refused to write an official report downgrading the rating, so the resident had the hospital radiologist read the films. The latter agreed that the calcifications were benign appearing and a biopsy was unwarranted. Unbidden, the resident telephoned my primary care provider and explained the situation. Thus one physician in the system remains guardian of my health.
Having herself witnessed instances of women slipping through the cracks, arriving at the clinic too late for meaningful treatment, the resident did not belittle my concerns or emphasis on early detection. The criterion for the biopsy remained patient comfort, she stressed. Unlike the radiologists, she responded to my question about the chances of malignancy. (More like 1:10 or 1:100?) Was the surgeon humoring me by offering the biopsy option, or was this a science-based decision whereupon we could agree what constituted acceptable risk?
The resident heeded my request for e-mail communication, saving everyone phenomenal amounts of time. The next day, she locked down follow-up appointments at both ends: radiology in six months (three after the quest for clarification), and the surgery clinic for explanation and clarification. At my request, she got me the latest possible appointment at the surgery clinic so I do not miss (yet) another day’s work.
The visit to the surgery clinic cost me 3 1/2 hours plus one day of lost work.
The follow up took minutes to resolve via e-mail.
Despite her obvious smarts and grasp of her job, the resident’s powers were limited. She could not explain why the second radiologist refused to report in writing, but she did back-stop him with their own experts. Nor did she did leave follow-up solely to the office of Radiologist No. 1. When asked which radiology practice was best for my case, she stated that the clinic had never experienced problems with the first office (a deep seated concern given my daughter’s history with this office). As for the expert refusing to put the second opinion in writing, she assured me that the record of the phone conversation in my file would suffice as confirmation of the diagnosis.
I will not see the resident again because she is rotating to the next service. I wish her the best in her career, which, one assumes, will be radically altered through health care reform and new HIT (health information technology). Her actions did nothing to change my opinion of female physicians as being more collegial, less arrogant and more willing to correct error. She had, I felt, a genuine compassion for women’s fears about breast cancer. Nor did it change my opinion of the generation gap in medicine: Younger, she was at ease with the not-so-new technology of e-mail. Plus I admire her courage. She (or her boss) was willing to risk transparency in the interests of efficiency and human decency.
Subsequent research revealed that the second radiology practice has become, as one person said, “the only game in town” by securing a contract with a major hospital; its partners are more than satisfied with remuneration. In contrast, the referring clinic is known as a mill, staffed by part time, uncommitted physicians.
I can not help thinking that the rookie, being the least invested in the medical business, was the one who got things done. Nor can I help noting that the male specialists at opposite ends of the class spectrum in medicine – the public clinic and the lucrative radiology practice – were equally intolerant, indifferent to best practices. Tell me that gender dynamics are not defining in medicine, that gender bias is not a part of the health care system that the Obama administration should pledge to fix. Tell me that women are not experiencing a higher toll from cancer due to this intolerance.
One has to wonder what would have happened if the physicians in question had heeded my request at the outset. There is no billing code for communication, at least one lucrative enough to make communication worthwhile. Therefore physicians’ anger and resentment at “special requests” – or best practices, even.
Coincidentally, the county hospital in this rural agricultural area has one of the top-ranked surgical residency programs in the country, even as the hospital bleeds red ink. Someone, somewhere, is doing something right, and it is not because of high tech.
Thanks, Chris, for closing out (for now) the spin story. The “listening” tag is a new one for e-patients.net, but I think we should look for more examples of how listening turned out to be the key element of a participatory medicine story.
I just read this Disruptive Women post in which listening played a key role (in something so simple as having a range of magazines in an OB/GYN waiting room, not just parenting mags):
Infertility
By Megan Kamerick
http://www.disruptivewomen.net/2009/01/13/infertility/
Quite a story, Chris. Cripes.
What can we learn from it? I see a lesson that patients need to be aware that the system is far from perfect and is often grossly unresponsive, so they need to know what they should expect, and insist on it. Other lessons?
Ignorant question (I have no fear of looking foolish): are women in fact experiencing a higher toll from cancer? (I have no idea, I’m asking.)
Dave,
I think it’s very possible that women are dying unnecessarily of cancer due to five factors: 1) the physician belittles early symptoms; 2) refuses the referral/second opinion; 3) the woman herself has been socialized to accomodate, not challenge, to look after her family’s health before her own; 4) women, particularly single parents, dominate in low income categories; and 5)if you check the links on the Health Disparities piece, not only are there very few women in governing positions of the relevant specialties like cardiology, radiology, oncology, etc., those who arrive at the top are so in the minority, it must be nigh impossible to speak up. Hillary Clinton did not exactly charge into the Senate speaking of women’s issues, any more that Barrack Obama stresses his “blackness.” Imagine speaking up on “women’s issues” in these organizations.
In an insurance situation in which physicians are awarded for NOT referring, who is likely to insist, and who is likely to die?
Also, as one knows, one might be called a beeaatch if one, as politely as possible, inquires as to followup.
Nice = ignored
More assertive = ? Visionary Beaatch
Megan,
I love the site! Let’s twitter, shall we?
(like I know what that means).
The reading material in the waiting room is an important clue to where and how you are being treated. Blaring tv, cartoons, one hospital. Bad service. Another: the New Yorker, the Atlantic… I forgot the rest. I could have read my way through my daughter’s last surgery (no People mag, etc.). This was Mt. Zion Hospital in SF, coincidentally, where the service and listening/feedback loop was A+.
Dave,
With regard to what lessons we take from this, I’m not sure
I don’t know if either the clinic or the radiologists are financially rewarded for not referring or blocking a referral.
I can’t tell if the dynamics are driven by physician pride or arrogance, by something about billing procedure I don’t understand or of physicians having gotten used to or bullying
a passive or uneducated patient population.
I do believe that the medical profession has become corrupt in distinct ways. Surely, for example, insurance companies are not the only ones to be aware of corrupt and deceptive billing practices of the type that are in the news today. It also seems clear of all the professions one can name in the US, physicians feel most entitled to high compensation, meaning they are at best indifferent to insurance practices which harm patients.
I ask myself: what could I have differently. A second opinion seems like a pretty simple request.
Hopefully the resident will continue to be an advocate for her patients after she is in her own practice.
Another problem that you seemed to hit was one I have also experienced. Confronted with an intelligent proactive female patient, some docs can become defensive and refuse requests to purely be obstinate. I think the not putting the opinion in writing was just that. Sometimes I wonder if in the same situation, if playing poor helpless female, wouldn’t have gotten me farther.
Barb
Thanks for the response. Perhaps the key to the whole lies in Ockham’s razor: all things being equal, the simplest explation is the best. The physicians did what was most convenient for them.
Nexxxxxt!
Congratulations to Chris for having this post picked up by Disruptive Women in Health Care:
http://www.disruptivewomen.net/2009/01/16/the-smart-resident/
Christine, most hospitals, especially rural, have financial agreements with radiologist. If your facility is like mine, there is only one radiologist for 2 hospitals! Now if you have an MRI, your report (results) are faxed from the closest “big city”.
I believe I would have spoken to the Adminastrator at the facilities. I would have sent a written a letter for your state dept of public health.
Every facility that receives Medicare/Medicaid dollars have to report to CMS, Public Health,
the quality issues. So I would write to them, by certified mail, signed receipt requested. Don’t be surprised if your facilities get an announced inspection visit.
From these facilities, I would go to the medical records department and request a copy of my chart.
You have a right to it, so don’t let them tell you different. You may have to pay somenthing like 10 cents a page but its worth it.
Since I have been experiencing some major health problems since December, I have had many docotr visits, both primary care and neurologist and rheumatologist. I wait a few days after my visit and request a copy of my doctor notes and the billing information. Sometimes when I have close
visits I wait till I see the doctor again. While I am there I request copies of my previous visit notes. The staff think I’m a pain, but its my health and I want control over it. Sometimes you might find that what your doctor told you is not what he wrote in the chart at all. He needs to be questioned about his notes.
There is a website where you can go and rate your physician. I’ll find my notes and write the url here. It is a good place to read about your doctor as well as comment on his treatment, diagnosis and behavior.
Talk to you soon.
BarBara