Pass the Valium!
Previously on e-Patients.net I recounted the crazy-making quest for a second opinion on an abnormal mammogram (microcalicifications) as per the advice of New York Times health columnist Jane E. Brody, a breast cancer survivor. The gynecologist who ordered the mammogram refused to authorize a second opinion, deferring to the radiologist, who referred me back to the clinic and so on and so forth.
My primary care provider carefully reviewed the films and reports (sans compensation). She thought a biopsy might be the safe thing. She was not the referring entity, however. The clinic was!#$^%$#@
I started over, skipping a few bases, securing a first-rate surgeon at the county hospital as the new referral entity. In a futile attempt to waste no one’s time except my own, I hand-carried a disc of the imaging studies to the appointment.
The resident informed me that they could not bring the films up on their system. (“Oh yeah, that’s right” says the deskperson at Radiology Practice No. 1. “County can’t read our films.”) @#%#$
This was an abnormal mammogram, the resident confirmed, which made me feel slightly less inept. Nonetheless, it was downhill from there.
Why are you here? queried the surgeon.
For a second opinion.
Well, I wasn’t sure I said, showing them the Brody article, but I thought second opinion meant I wanted another (more expert?) radiologist to read the films and review the recommendation for followup.
The surgeon referred me to a radiology practice affiliated with a large hospital, the only one in town to offer stereotactic breast biopsy.
After the obligatory miscommunication, the films from Radiology Practice No. 1 actually arrived at Radiology Practice No. 2. The radiologist would read the films presently, the scheduler promised. He would not write a report, however; insurance would not cover it. I would know his opinion by either thumbs up (biopsy appointment) or not. No reasoning on the decision would be available to me.
Silly me. I thought that breast cancer is best caught early and a second opinion is integral to Patient’s Rights. Inexplicably, confirmation that the cancer detection program would pay for a second opinion (California law) carried no weight whatsoever with either the clinic, R.P. No.1 or R.P. No. 2.
It was if I had never spoken.
You, Jane Brody and Sheryl Crow
“No one has ever asked for a second opinion before,” said the clinical coordinator of the cancer detection program. She did not urge me to let up, however. On the contrary, like every female health care professional I know, she had a story: a sister-in-law who died from cancer after a physician ignored repeated complaints about vaginal bleeding. (Nary an apology when she died, as this story always goes.) As I write, the same sickening scenario: A sixty-two-year-old breast cancer survivor, aunt of a colleague, complains to her doctor of bone pain. He dismisses the pain as signs of old age — until it turns out to be metastatic cancer, in which case he is perfectly happy to support the murderous double onslaught of radiation and chemotherapy. What should she do?
While they may share awareness if not rage over the unique combination of neglect/arrogance that marks the treatment of women in the U.S. health care system, Jane E. Brody, Sheryl Crow and readers of The New York Times apparently know how to secure a second opinion, women in rural counties, not.
The call came confirming an appointment for a stereotactic needle biopsy. The appointment was a total disaster, the next scene, almost too embarrassing to write.
The Knock-out Punch
As she ushered me into the exam room, the nurse handed me a brochure describing the procedure. (While useful, the information would have been even more useful had I had time to read it.)
“The doctor will talk to you first.”
Hunched over on a stool, miserably eyeing the gray exam table with the opening for my boob to hang through while it was penetrated by a needle and who knows what else, I waited.
Not for long.
The radiologist stormed in. Towering over me, technician at his side, he said he could not understand why a biopsy had been ordered, nor could his colleague who reviewed the films before him. He had seen hundreds of films like this. Unlike Radiologist No. 1, his advice would be to return in a year, not six months.
When asked the obvious — What were the chances of malignancy on microcalcifications of this nature? — he blasted his way through the legal disclaimer language of Statistics 101, whacking away at the difference between correlation and causality, deriding me and my primary care provider. Physicians could disagree blah blah blah which is why second opinions often cause confusion blah blah blah. By the way, women with this condition were twice as likely to develop breast cancer as women without. (I think he said this, but by then I was too mortified to think very well. Mainly I feeling gratefulthat I had my clothes on.)
Pow! Pow! Pow!
The decision to biopsy was ultimately determined by the comfort level of the patient, he explained (i.e., not by science or evidence-based medicine), subtle insult. (This position, incidentally, absolves both the physician and the insurance company of liability). If that’s what I wanted, they could even send the films to Big Name Medical Center for review. He personally had the qualifications to work at Big Name Medical Center, but no mind. My choice.
I was definitely not feeling Tranquilidad Mental, the Peace of Mind advertised in their brochure.
Without getting too tetchy, I explained: I was an alumna of Big Name University; their children’s hospital had screwed up Big Time on my daughter’s sarcoma case (through arrogance of precisely this sort); and when I chose a referral site, it was by individual or departmental expertise, not Big Name.
What did I want to do? he demanded. We were now Wasting the Physician’s Time.
Without report in hand or time to consider the information, hard to say, buddy!
Could I please have a written report of their findings?
Let me get this straight: Insurance would pay for an unnecessary, expensive, time consuming, painful and invasive procedure to reassure a (silly female) patient about breast cancer, but it would not support a written report on findings?
Not putting their opinion in writing was a favor to me, he insisted. His office would get stiffed by the insurance company on a written second opinion, meaning they would have to bill the patient. (Apparently the message that the cancer detection program would support a second opinion was beneath his or someone’s notice. Whatever. He knew his billing codes.)
In the face of such certitude — having received my second opinion, I believed, albeit not in writing — I declined the procedure. The doctor whisked himself out the door, his body language shouting “Idiot! Fool!” He had (real) patients to attend to.
The room bereft of all that energy, the technician gently explained that microcalcifications generally fall into three categories: malignant, indeterminate and not to worry (I am paraphrasing.) My pattern, the “teacup,” Not To Worry. For some reason, however, I was unable to pry it out of a doctor, certainly not one who would commit to writing (or even pick up a telephone).
If I, a scholar and patient-advocate, could not navigate this system, I explained to the technician and the office manager, what hope was there for a less educated (and persistent) patient? Where had I gone wrong?
The glitch, in their opinion, came from the surgeon at the county hospital: He had written an order for a biopsy, not a second opinion. Without a re-script from the surgeon, their office could not provide a report on findings. @##@$%^& (The surgeon, of course, was unavailable minus an act of God.)
Neither woman was dismissive of my concerns about the cluster f*** that is the medical referral system or the lack of accountability therein. Both were acutely aware of the propensity of the U.S. healthcare system to kill women with suspected cancers. (“Or even a urinary tract infection,” muttered the technician.) Both were totally supportive of the physician’s fears of lawsuit. (“All it takes is one,” the office manager pointed out.) Both trusted their boss’s judgment, even as they tacitly acknowledged the dynamics that had me on the ropes, in search of the nearest exit.
Jane E. Brody, Help!
Pass the Valium! Not for a bad outcome (at least I do not think this was a bad outcome). Nor for lack of a viable second opinion (I hoped). But for sheer embarrassment. Why was I sitting there like a fool, brochure in hand, wasting so many people’s time?
In the case of microcalcifications, what constitutes a second opinion, or a “qualified” second opinion? Who knows, and who pays?
This is what I (or the surgeon at the county hospital) inadvertently did right. The second opinion was not an expert opinion per se, meaning review by specialists at tertiary care center, but a “qualified opinion” rendered by radiologists who specialize solely in breast health, meaning they read more mammograms a year and offer more specialized procedures than does R.P. No. 1.
For women actually trying to obtain a second opinion on a mammogram without dying of cancer (or embarrassment), the word would be alignment.
You and Your Billing Code
As indicated in recent and somewhat bitter controversies about information technology (IT) on The Health Care Blog, health care reform in its specifics is formulated from the standpoint of the physician-insurance nexus. Thus disputes tend to revolve primarily (or only) around billing, i.e., relative profit or loss among the various contenders. Protests aside, the patient is at best an afterthought — the Residual Payer, as one physician kindly informed me — which is precisely how much weight the patient (or health) carries in these discussions.
Physician practice is aligned first and foremost with insurance billing codes, not best practices or Patient’s Rights. In my case, there was no billing code for a written second opinion. If there was such a code, no one was familiar with it.
The insurance industry has a stranglehold on your physician. The point at which physician and insurance interests overlap is avoidance of accountability-transparency to the patient or public. Ergo the tough response when physicians are queried about best practices (i.e. second opinions), followed shortly thereafter by the Disappearing Act.
If your physician’s language is overly obscure, if he or she dazzles you with the basics of statistics, if he seems resigned or angry at you for requesting the wrong thing (a second opinion), if the mostly female staff seems tight lipped, it is because physicians are trying to please two masters — the insurance company and the patient. In truth, they respond only to one.
Apologies to Radiologist No. 1. His recommendations were conservative in favor of my well being, or at least I think so. The problem was his unwillingness to address discrepancies raised by the Brody article (were we talking about some different pattern of calcifications?) or to support a second opinion. Because he could not bill for the time wasted on talk (clarification), my primary care provider and other health care professionals ended up picking up the slack. As for the referral, i.e., the “qualified” second opinion with which physicians claim to be perfectly at ease, all he had to do was sit back and let the patient get lost in the spin.
The next time you get flack over a request for a second opinion on a suspected cancer, you might inquire if billing codes are aligned with best practices. If not, what does your physician plan to do about it? (Answer: bill you.)
Better yet, scream at a politician before the insurance industry re-hijacks health care reform. This is not so easy to do, however. As ACOR founder Gilles Frydman points out, the workings of the health care industry are opaque by design, meaning ordinary folks do not have a clue about where even to start.
Here are a few easy pieces.
There is movement afoot to transfer a greater piece of the “health reform pie” to primary care providers for information technology; increased compensation relative to specialists (who are not paid to talk to you); and for an expanded role in coordinating care, i.e., managing medical records so that you, too, do not get lost in the spin.
There is a Great Debate (if not envy) among physicians about parity with lawyers, meaning a lot of energy is expended in debate over billing practices for patient communication. The Great Scourge, from the physician perspective, is e-mail. Coincidentally, e-mail evens out the playing field, sparing the patient the emotional and financial costs of “telephone tag,” plus it forces the physician to commit to writing. In some circles, this would be known as efficiency and accountability, a spur to good health even — a putative goal of the Obama administration. Many physicians rail against e-mail like it is the anti-Christ, at the same time ignoring the ridiculous waste of time and money, to say nothing of the wear and tear on the patient, that is the existing system. Telephone tag works fine for them.
Breast cancer is primarily a disease of older women. Given the aging Baby Boomer population, microcalcifications will remain an area of concern in medical decision making. Educate yourself. Learn your referral network. Find a doctor to trust. The decisions can be difficult, even for specialists.
Yes, there is a new national dialogue on health care reform, but is it the right one? Can one even locate patient interests in the scrum?
Practically and politically, middle-level specialists, registered nurses, office managers, technicians, etc. need to speak up. Yes, that would be primarily women, people who are actually sympathetic to fears about breast cancer, sensitive to institutional intimidation and witness to internal dysfunction.
In particular, we need to hear from certified case managers, a class of health care professionals who are legally required to advocate for the patient, not the insurance industry. As I learned from my daughter’s sarcoma case, in instances of life threatening illness, CCMs are your best chance to get a complicated health care team to cohere around the interests of the patient — not those of the medical team, the hospital, or the insurance company. Understandably, insurance companies do not broadcast their existence; some deny the patient direct access.
Conventional politics might not be the answer. Given the industry deregulation of the Bush presidency, it is unlikely that major physician groups and professional organizations will de-align from major “stakeholders” (insurance, their payers; pharmaceutical reps, their friends) and ally themselves with patients, at least in the near future. Nor is it likely that politicians will suddenly reframe debates on HIT (health information technology) in terms of patient interests, any more than software vendors will develop a sudden philanthropic interest in information sharing (i.e., “interoperability”) — unless they control the patent, that is. Thus, folks lower down in the medical food chain might wish to educate themselves about e-communities and join forces in patient-centered participatory medicine.
Synergy awaits. Masters of the billing code and referral system, CCMs are among the few health care professionals who can successfully educate and demystify the system without getting fired. They can explain, for instance, why the patient risks humiliation when she tries to take charge of her health, and the physician can be so punitive.
As you learn to navigate the complicated terrain of health care reform, the thought may occur that you, the patient, might be better off if Certified Case Managers, like primary care providers, were to get a more substantial piece of the health care reform pie. If you are going to die of something dumb, at least you will have a clue as to what killed you.
As for me, I am awaiting a phone call from the surgeon.