Pass the Valium!<\/p>\n
Previously on e-Patients.net<\/a> I recounted the crazy-making quest for a second opinion on an abnormal mammogram (microcalicifications) as per the advice of New York Times<\/em> health columnist Jane E. Brody<\/a>, a breast cancer survivor. \u00a0The 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.<\/p>\n My primary care provider carefully reviewed the films and reports (sans <\/em>compensation).\u00a0 She thought a biopsy might be the safe thing.\u00a0 She was not the referring entity, however.\u00a0 The clinic was!#$^%$#@<\/p>\n I started over, skipping a few bases, securing a first-rate surgeon at the county hospital as the new referral entity.\u00a0 In a futile attempt to waste no one\u2019s time except my own, I hand-carried a disc of the imaging studies to the appointment.<\/p>\n Right?<\/p>\n Wrong! This was an abnormal mammogram, the resident confirmed,\u00a0which made me feel slightly less inept.\u00a0\u00a0Nonetheless, it was downhill from there.<\/p>\n Why are you here? queried the surgeon.<\/p>\n For a second opinion.<\/p>\n A what?<\/p>\n Well, I wasn\u2019t 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\u00a0followup.\u00a0<\/p>\n The surgeon referred me to a radiology practice affiliated with a large hospital, the only one in town to offer stereotactic breast biopsy.<\/p>\n After the\u00a0obligatory\u00a0miscommunication, the films from Radiology Practice No. 1 actually arrived at Radiology Practice No. 2.\u00a0 The radiologist would read the films presently, the\u00a0scheduler promised.\u00a0\u00a0 He would not write a report, however; insurance would not cover it.\u00a0 I would know his opinion by either thumbs up (biopsy appointment) or not.\u00a0 No reasoning on the decision would be available to me.<\/p>\n Silly me.\u00a0 I thought that breast cancer is best caught early and a second opinion is integral to Patient\u2019s Rights.\u00a0 Inexplicably, confirmation that the cancer detection program\u00a0would pay for a\u00a0second opinion <\/a>(California law) carried no weight whatsoever with either the clinic, R.P. No.1 or R.P. No. 2.<\/p>\n It was if I had never spoken.<\/p>\n You, Jane Brody and Sheryl Crow<\/strong><\/p>\n \u201cNo one has ever asked for a second opinion before,\u201d said the clinical coordinator of the cancer detection program.\u00a0 She did not urge me to let up, however.\u00a0 On the contrary, like\u00a0every female health care professional I know,\u00a0she had a story:\u00a0\u00a0a\u00a0sister-in-law\u00a0who died from cancer after a physician ignored repeated\u00a0complaints about vaginal bleeding.\u00a0\u00a0 (Nary an apology when she died, as this story always goes.)\u00a0\u00a0 As I write, the same sickening scenario:\u00a0\u00a0\u00a0 A\u00a0sixty-two-year-old breast cancer survivor, aunt of a colleague, complains to her doctor of bone pain.\u00a0 He\u00a0dismisses the pain as\u00a0signs 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.\u00a0 What should she do?<\/p>\n 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<\/em> apparently know how to secure a second opinion, women in\u00a0 rural counties, not.<\/p>\n The call came confirming an appointment for a stereotactic needle biopsy.\u00a0\u00a0 The appointment was a total disaster, the next scene, almost too embarrassing to write.<\/p>\n The Knock-out Punch<\/strong><\/p>\n As she ushered me into the exam room, the nurse handed me a brochure describing the procedure.\u00a0 (While useful, the information would have been even more useful had I had time to read it.)<\/p>\n “The doctor will talk to you first.\u201d<\/p>\n 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.<\/p>\n Not for long.<\/p>\n The radiologist stormed in.\u00a0\u00a0Towering over me, technician at his side,\u00a0he\u00a0said he could not understand why a biopsy had been ordered, nor could his colleague who\u00a0reviewed the films before him.\u00a0 He had seen hundreds of films like this.\u00a0 Unlike Radiologist No. 1, his advice would be to return in a year<\/a>, not six months.<\/p>\n When asked the obvious — What were the chances of malignancy on microcalcifications of this nature? —\u00a0 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.\u00a0 Physicians could disagree blah blah blah which is why second opinions often cause confusion blah blah blah.\u00a0 By the way, women with this condition were twice as likely to develop breast cancer as women without. <\/em>(I think he said this, but by then I was too mortified to think very well.\u00a0\u00a0Mainly I feeling gratefulthat I had my clothes on.)<\/p>\n Pow!\u00a0 Pow!\u00a0 Pow!<\/p>\n The decision to biopsy was ultimately determined by the comfort level of the patient, he explained\u00a0 (i.e., not by science or evidence-based medicine), subtle insult.\u00a0 (This position, incidentally, absolves both the physician and the insurance company of liability).\u00a0\u00a0 If that’s<\/em> what I wanted, they could even send the films to Big Name Medical Center for review.\u00a0 He personally had the qualifications to work at Big Name Medical Center, but no mind.\u00a0\u00a0 My choice.<\/p>\n I was definitely not feeling Tranquilidad Mental<\/em>, the Peace of Mind advertised in\u00a0their brochure.<\/p>\n Without getting too tetchy, I explained:\u00a0 I was an alumna of Big Name University; their children\u2019s hospital had screwed up Big Time on my daughter\u2019s sarcoma case (through arrogance of precisely this sort); and when I chose a referral site, it was by individual or departmental expertise, not\u00a0Big Name.<\/p>\n What did I want to do? he demanded.\u00a0 We were now\u00a0Wasting the Physician\u2019s Time.<\/p>\n Without report in hand\u00a0or time to consider the information, hard to say, buddy!<\/em><\/p>\n Could I please have a written report of their findings?<\/p>\n No.<\/p>\n Let me get this straight:\u00a0 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?<\/p>\n Not putting their opinion in writing was a favor to me<\/em>,\u00a0he insisted.\u00a0 His office would get stiffed by the insurance company\u00a0on a written second opinion, meaning they\u00a0would have to bill\u00a0the patient.\u00a0\u00a0(Apparently the message that the cancer detection program would support a second opinion was beneath his or someone\u2019s notice.\u00a0 Whatever.\u00a0 He knew his billing codes.)<\/p>\n In the face of such certitude —\u00a0 having received my second opinion, I believed, albeit not in writing — I declined the procedure.\u00a0 The doctor whisked himself out the door, his body language shouting “Idiot! Fool!”\u00a0 He had (real) patients to attend to.<\/p>\n The room bereft of all that energy, the technician gently explained that microcalcifications generally fall into three categories:\u00a0 malignant, indeterminate and not to worry (I am paraphrasing.)\u00a0 My pattern, the \u201cteacup<\/a>,\u201d Not To Worry. \u00a0 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<\/a>).<\/p>\n Backtracking<\/strong><\/p>\n 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?\u00a0 Where had I gone wrong?<\/p>\n The glitch, in their opinion,\u00a0came from the surgeon at the county hospital:\u00a0 He had written an order for a biopsy, not a second opinion.\u00a0 Without a re-script from the surgeon, their office could not provide a report on findings.\u00a0 @##@$%^&\u00a0 (The surgeon, of course, was\u00a0unavailable minus an act of God.)<\/p>\n Neither woman was dismissive of my concerns about the cluster f*** that is the medical referral system<\/a> or\u00a0 the lack of accountability therein.\u00a0 Both were acutely aware of the propensity of the U.S. healthcare system to kill women with suspected cancers.\u00a0 (\u201cOr even a urinary tract infection,\u201d muttered the technician.)\u00a0 Both were totally supportive of the physician\u2019s fears of lawsuit.\u00a0 (\u201cAll it takes is one,\u201d the office manager pointed out.)\u00a0 Both trusted their boss\u2019s judgment, even as they tacitly acknowledged the dynamics that had me on the ropes, in search of the nearest exit.<\/p>\n Jane E. Brody, Help!<\/strong><\/p>\n Pass the Valium!\u00a0 Not for a bad outcome (at least I do not think this was a bad outcome).\u00a0 Nor for lack of a viable second opinion (I hoped).\u00a0 But for sheer embarrassment.\u00a0 Why was\u00a0I\u00a0sitting there like a fool, brochure in hand, wasting so many people\u2019s time?<\/p>\n In the case of microcalcifications, what constitutes a second opinion, or a \u201cqualified\u201d second opinion?\u00a0 Who knows, and who pays?<\/p>\n This is what I (or the surgeon at the county hospital) inadvertently did right.\u00a0 The second opinion was not an expert opinion per se<\/em>, 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\u00a0 offer more specialized procedures than does R.P. No. 1.\u00a0\u00a0<\/p>\n For\u00a0 women actually trying to obtain a second opinion on a mammogram without dying of cancer (or embarrassment), the word would be alignmen<\/em>t.<\/p>\n You and Your Billing Code<\/strong><\/p>\n As indicated in recent and somewhat bitter controversies about information technology (IT) on The Health Care Blog<\/a>, health care reform in its specifics is formulated\u00a0from the standpoint of the physician-insurance nexus.\u00a0 Thus disputes tend to revolve primarily (or only) around billing, i.e., relative profit or loss among the various contenders.\u00a0 Protests aside, the patient is at best an afterthought\u00a0—\u00a0 the Residual Payer, as one physician kindly informed me — which is precisely how much weight the patient (or health)\u00a0carries in these discussions.<\/p>\n Physician practice is aligned first and foremost with insurance billing codes, not best practices or Patient\u2019s Rights.\u00a0 In my case, there was no billing code for a written second opinion.\u00a0 If there was such a code, no one was familiar with it.\u00a0\u00a0<\/p>\n The insurance industry has a stranglehold on your physician.\u00a0 The point at which physician and insurance interests overlap is avoidance of accountability-transparency to the patient or public.\u00a0 Ergo the tough response when physicians are queried about best practices (i.e. second opinions), followed shortly\u00a0thereafter by the Disappearing Act.<\/p>\n If your physician\u2019s language is overly obscure, if he or she dazzles you with the basics of statistics, if he\u00a0seems resigned or angry at you for requesting the wrong thing (a second opinion), if the mostly female staff\u00a0seems tight lipped, it is because physicians are trying to please two masters — the insurance company and the patient.\u00a0 In truth, they respond only to one.<\/p>\n Apologies to Radiologist No. 1.\u00a0 His recommendations were conservative in favor of my well being, or at least I think so.\u00a0\u00a0The problem was his unwillingness\u00a0to address discrepancies raised by the Brody article (were we talking about some different pattern of\u00a0calcifications?) or to support a second opinion.\u00a0 Because he could not bill for the time wasted on\u00a0talk (clarification),\u00a0my primary care provider and other health care professionals\u00a0ended up picking up the slack.\u00a0 As for the referral, i.e.,\u00a0 the “qualified\u201d second opinion<\/a> 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.<\/p>\n Align Yourself<\/strong><\/p>\n The next time you\u00a0get flack over a request for a second opinion on a suspected cancer, you might inquire if billing codes are aligned with best practices.\u00a0 If not, what does your physician plan to do about it?\u00a0 (Answer:\u00a0 bill you.)<\/p>\n Better yet, scream at a politician before the insurance industry re-hijacks health care reform.\u00a0 This is not so easy to do, however.\u00a0 As ACOR<\/a> founder Gilles Frydman points out,\u00a0the workings of the health care industry\u00a0are\u00a0opaque by design, meaning ordinary folks do not have a clue about where even to start<\/a>.<\/p>\n Here are a few easy pieces.<\/p>\n There is movement afoot to transfer a greater piece of the \u201chealth reform pie\u201d to primary care providers for\u00a0information technology; increased compensation relative to specialists (who are not<\/em> paid to talk to you);\u00a0and for an expanded role in coordinating\u00a0care, i.e., managing medical records so that you, too, do not get lost in the spin.<\/p>\n There is a Great Debate (if not envy) among physicians about parity with lawyers, meaning a lot of energy is expended in debate\u00a0over billing practices for patient communication.\u00a0 The Great Scourge, from the physician perspective, is e-mail.\u00a0 Coincidentally, e-mail\u00a0evens out the playing field, sparing the patient the emotional and financial costs of \u201ctelephone tag,\u201d plus it forces the physician to commit to writing.\u00a0 In some circles, this would be known as efficiency and accountability, a spur to good health even —\u00a0 a putative goal of the Obama administration.\u00a0\u00a0Many physicians rail against e-mail like it is the anti-Christ, at the same time ignoring\u00a0the ridiculous waste of time and money, to say nothing of the wear and tear on the patient,\u00a0that is\u00a0the existing system.\u00a0\u00a0 Telephone tag works fine for them.\u00a0\u00a0\u00a0\u00a0<\/p>\n Breast cancer is primarily a disease of older women.\u00a0 Given the aging Baby Boomer population,\u00a0microcalcifications will remain an area of concern in\u00a0medical decision making.\u00a0\u00a0Educate yourself<\/a>.\u00a0 Learn your referral network.\u00a0 Find a doctor to trust.\u00a0 The decisions can\u00a0be difficult, even for specialists.<\/p>\n Yes, there is a new national dialogue on health care reform, but is it the right one<\/a>?\u00a0\u00a0Can one even locate patient interests in the scrum?\u00a0<\/p>\n Practically and politically,\u00a0middle-level specialists, registered nurses, office managers, technicians, etc.\u00a0need to speak up.\u00a0\u00a0Yes, that would be\u00a0primarily women, people who are actually sympathetic to fears about breast cancer, sensitive to institutional intimidation and witness to internal dysfunction.\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0<\/p>\n In particular,\u00a0we need to hear from certified case managers<\/a>,\u00a0a class of health care professionals who are legally required to advocate for the patient, not\u00a0 the insurance industry.\u00a0 As I learned from my daughter’s sarcoma case, <\/a>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 —\u00a0not those of the medical team,\u00a0the hospital, or the insurance company.\u00a0 Understandably, insurance companies do not broadcast their existence; some\u00a0deny\u00a0the patient direct access.<\/p>\n Conventional politics might not be the answer.\u00a0 Given the industry deregulation of the Bush presidency,\u00a0it is unlikely that major physician groups and\u00a0professional organizations will de-align from major \u201cstakeholders\u201d (insurance, their payers; pharmaceutical reps, their friends) and ally themselves with patients, at least in the near future. \u00a0 Nor is it likely that\u00a0politicians will suddenly reframe debates on HIT (health information technology)\u00a0in terms of patient interests, any more than\u00a0software vendors will\u00a0develop a sudden philanthropic interest in information sharing (i.e., “interoperability”) — unless they control the patent, that is.\u00a0 Thus,\u00a0folks lower down in the medical food chain\u00a0might wish to educate themselves about e-communities and\u00a0join forces in\u00a0patient-centered participatory medicine.<\/p>\n
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\nThe resident informed me that they could not bring the films up on their system<\/a>.\u00a0 (\u201cOh yeah, that\u2019s right\u201d says the deskperson at Radiology Practice No. 1.\u00a0 \u201cCounty can\u2019t read our films.\u201d)\u00a0 @#%#$<\/p>\n