{"id":555,"date":"2008-11-06T12:07:07","date_gmt":"2008-11-06T17:07:07","guid":{"rendered":"http:\/\/pmedicine.org\/epatients\/?p=555"},"modified":"2009-01-16T19:37:07","modified_gmt":"2009-01-17T00:37:07","slug":"in-the-spin-death-by-referral","status":"publish","type":"post","link":"https:\/\/participatorymedicine.org\/epatients\/2008\/11\/in-the-spin-death-by-referral.html","title":{"rendered":"In the Spin: Death by Referral"},"content":{"rendered":"

In October I recounted how my daughter was put through a spin cycle<\/a> of referrals and medical misdiagnosis that nearly got her killed. The lump on her forearm that looked like a cyst was instead a deadly cancer<\/a>.<\/p>\n

The nightmare began at the local radiology practice, where my young teen, minus any warning as to specifics,\u00a0was subjected to a long and agonizing MRI.\u00a0 The nurse was\u00a0surprised by my request to talk to\u00a0the radiologist.\u00a0 Nonetheless, she complied.\u00a0\u00a0Thus came the infamous spiel, “Don\u2019t worry mom. It\u2019s probably not cancer . . . ”<\/p>\n

Two weeks ago it was Groundhog Day<\/em> — only this time I was the patient. Stunned and disoriented after being called back for a\u00a0magnification mammogram, I listened as the radiologist (a different partner) briskly pointed to an area of increased calcification.\u00a0 Me not quite understanding calcification (as in bones?).<\/p>\n

When pressed, he stated the obvious:\u00a0 microcalcifications could indicate a pre-cancerous condition, if not cancer.\u00a0 He recommended\u00a0follow-up in six months, after which I could return to the\u00a0annual\u00a0schedule.<\/p>\n

I left in a daze.\u00a0 What had just happened?<\/p>\n

<\/p>\n

Genuine two-way communication\u00a0it was not.\u00a0 The radiologist was not happy when I informed him that the practice had previously misdiagnosed my daughter, with near fatal results.\u00a0 Even more frightening:\u00a0 The misdiagnosis was news to him.\u00a0 Yes, we agreed, hers was a far more atypical situation (although breast cancers can be sarcomas, which he failed to point out).\u00a0<\/p>\n

Nor was he happy when I asked if the situation called for a second opinion:\u00a0 only the referring physician could do that.\u00a0 As he ushered me out, he promised to look up Gina Kolata\u2019s article on inept* MRIs<\/a> which had appeared in the previous week\u2019s Science Times<\/em>, his body language screaming out that reading\u00a0The New York Times <\/em>was an unnecessary and time-consuming enterprise for a busy person such as himself.<\/p>\n

* Patient did not\u00a0actually say “inept.” <\/em><\/p>\n

Should I be frightened?<\/strong><\/p>\n

The following week I received an unpleasant jolt from Jane Brody\u2019s column<\/a>, also in the Science Times <\/em>(21 October 2008), advising women to take the initiative on breast health.\u00a0 Brody presents a crystal clear summary of microcalcifications — in writing, no less, so the facts can be revisited when the fear has leached away.\u00a0 “If instead of a biopsy [after a magnification mammogram] you are told to return in six months or a year for another mammogram, you\u2019d be wise to seek a second opinion.”<\/p>\n

Being an “activated patient<\/a>,” I hit the Internet.\u00a0\u00a0Turns out Sheryl Crow had ignored a similar recommendation, catching her breast cancer early.\u00a0 Likewise\u00a0a\u00a0friend\u00a0who caught her cancer at Stage II.\u00a0 An educated and proactive blogger describes a\u00a0scenario similar to Crow\u2019s, posing the question:\u00a0 What of low income women under similar circumstance?<\/p>\n

I assumed two things after my daughter\u2019s medical nightmare and my own warp-speed re-education.\u00a0 First, I would know how to advise a friend in a similar situation so they could cut through the morass of\u00a0referrals.\u00a0 Second, the\u00a0nightmare attached to\u00a0my daughter\u2019s cancer was in large part a function of low income and the financial disruptions endemic to a single parent household.<\/p>\n

Last year I was proven wrong on both counts.\u00a0 A friend\u00a0discovered a strange lump on her neck, only to be\u00a0put through the spin cycle with potentially lethal consequences.\u00a0 The location\u00a0was\u00a0terrifying, C-2 C-3 on the spine, the gender dynamics familiar.\u00a0 A social worker and conscientious mom, she had elected a less expensive HMO for herself.\u00a0 Her child had\u00a0the more expensive PPO.<\/p>\n

She knew how to work the system, she assured me.\u00a0 She did it everyday on behalf of her clients.\u00a0 Inexplicably, she could not.\u00a0 This is her story.<\/p>\n

<\/p>\n

Nightmare on Elm Street<\/strong><\/p>\n

The first round of HMO referrals on the neck lump produced nought but condescension coupled with chilling contradiction.<\/p>\n

“I\u2019m not sure.\u00a0 Let me check with my (senior) colleague down the hall.”<\/p>\n

“It\u2019s a cyst.\u00a0 We see those all the time.”<\/p>\n

The next physician,\u00a0a far more cautious general surgeon,\u00a0said he would not touch the lump with a ten-foot pole, certainly not without a FNA (fine needle aspiration).\u00a0 The surgeon supported\u00a0referral to a tertiary care center for expert imaging and evaluation where specialists of equal expertise\u00a0function as a team.\u00a0 The insurance company refused the referral, however,\u00a0directing her instead to\u00a0a local orthopedic surgeon.<\/p>\n

While dismissive of the lump — “We pop these things out all the time” — the surgeon\u00a0also supported\u00a0her request for referral to a tertiary care center.<\/p>\n

Meanwhile, my friend\u2019s “ammunition”\u00a0in support of\u00a0referral\/best practices for suspicious lumps and bumps<\/a> went unremarked by the insurance company.\u00a0 The company agreed to her request for a certified case manager (who is legally mandated to act in the patient\u2019s best interests, not in the financial interests of the insurance company), but denied her direct contact,\u00a0frustrating\u00a0communication.<\/p>\n

Desperate, my friend began to resort to personal contacts.\u00a0 She went “back door”\u00a0to the regional medical director of the HMO.\u00a0 While supportive,\u00a0the\u00a0director was\u00a0unable to bypass\u00a0the\u00a0company’s\u00a0policy of obstruction.<\/p>\n

Exhausted, my friend finally self referred.\u00a0 The insurance company won, however.\u00a0 The family agreed to pay out of pocket.<\/p>\n

Shockingly, the nightmare got worse, not better, the assumption being that communication among experts at a major medical center would be better rather than worse than that among local specialists.<\/p>\n

The Realm of Experts:\u00a0 Interdepartmental Spin<\/strong><\/p>\n

The oncology head and neck specialist at the tertiary care center 100 miles away said that he had never seen anything like her lump.\u00a0 He recommended a FNA.\u00a0 As is typical,\u00a0the FNA came back inconclusive.<\/p>\n

The oncologist referred the case to the head and neck neurosurgeon, but the referral got lost in the system.\u00a0 Days turned into weeks as my friend frantically\u00a0backtracked communication between the two departments, the specialists and their minions arguing over whose responsibility it was to lock down the referral.\u00a0 (The answer:\u00a0No one’s.)\u00a0\u00a0<\/p>\n

Oops!\u00a0 A clerk had quit without notice, promising to fax the referral but not.<\/p>\n

By then it was Christmas, Doctor was on vacation, and nothing could be scheduled until after the holidays.<\/p>\n

Returned from winter break, the head and neck neurosurgeon refused to touch the lump without a more extensive CNB (core needle biopsy).\u00a0 He did, however, advise my friend that\u00a0removal of the lump would require cutting through tendons, resulting in permanent pain.<\/p>\n

The mystery was solved at the very last stop in the spin cycle.\u00a0\u00a0As my friend lay\u00a0immobile on the exam table,\u00a0awaiting the CNB, the radiologist went online, for hours consulting\u00a0with a “niche” expert in Pennsylvania.\u00a0 At last,\u00a0a physician who did claim to know\u00a0what the lump was!\u00a0<\/p>\n

The radiologist tried to call a halt to the painful and expensive procedure, but by then it was too late.\u00a0 The appointment had taken months to secure.\u00a0 The family had lost faith in the medical system.\u00a0 Plus, there were no guarantees . . .<\/p>\n

Fortunately, the “niche” expert was correct.\u00a0 The lump,\u00a0a rare condition, was benign.\u00a0 Still,\u00a0it was outside the diagnostic experience of a major medical center,\u00a0to say nothing of local specialists.\u00a0 The insurance company\u00a0caught up on payment by the time the CNB took place, but stiffed the family\u00a0for the bill for the\u00a0initial consult and\u00a0FNA.<\/p>\n

U-TADs<\/strong><\/p>\n

The above scrum exemplifies what one\u00a0ACOR\u00a0list member refers to as\u00a0U-TADs:\u00a0 Unnecessary Time Added to Diagnosis.\u00a0 My friend’s case was a veritable train wreck of U-TADs.<\/p>\n

She used every single device at her command — research, e-communities, inside and outside connections and sheer cash — to reach resolution in a reasonable time frame,\u00a0but to no avail.\u00a0 Her energy\u00a0 sapped by fear and sleepless nights, her job\u00a0threatened by\u00a0endless\u00a0medical appointments, her family began to fall apart.\u00a0 The coup de grace<\/em> was administered\u00a0not by her boss or\u00a0by her\u00a0angry teen,\u00a0however, but\u00a0by a neighbor,\u00a0a nurse and sister of a local surgeon, who\u00a0scolded her for seeking outside expertise.\u00a0\u00a0This was an insult.<\/p>\n

All of which contributed to the patient\u2019s\u00a0sense of uncertainty.\u00a0 Was this indeed “nothing,” an overreaction, or did the delay put her at risk for paralysis if not death?<\/p>\n

This\u00a0nightmare\u00a0began in August and ended in January, nearly\u00a0half a year later.\u00a0 Had the lump indeed been malignant . . .\u00a0 What were these doctors thinking?<\/p>\n

Back to the Future: Women in the Spin Cycle<\/strong><\/p>\n

My friend is\u00a0a member of\u00a0a\u00a0dual-income professional family, besides which she was backed by wealthy\u00a0parents who guaranteed\u00a0out-of-pocket expenses should the\u00a0fiasco threaten to take her\u00a0household under.\u00a0 My own circumstances as a single parent are far different.\u00a0\u00a0Divorce, poverty and the medical insurance crisis are not unrelated. \u00a0<\/p>\n

My medical fate and that of my child was decided more than a decade earlier by a\u00a0genial conservative\u00a0judge in Pennsylvania who, all facts to the contrary, persisted in\u00a0equating high education with high income.\u00a0\u00a0This would be the same person\u00a0who had to excuse himself from the bench\u00a0to call his (stay-at-home) wife to confirm the high cost of infant care.\u00a0 The experienced parent (as he assured us he was) who refused to even consider the costs of sick-care — as if he had never heard of ear infections in infants.<\/p>\n

Unlike myself and my child, the judge was able to insulate himself from the spiraling trade-offs of single parenthood:\u00a0 daycare versus rent versus sky-rocketing health insurance costs.\u00a0 Deadlines and professional obligations versus the non-choice of tending a sick child.<\/p>\n

Last week,\u00a0uncomfortable memories hovering, I embarked on the familiar trail of phone calls.<\/p>\n

To recap:\u00a0 My\u00a0journey\u00a0began the first week of October, Breast Cancer Awareness Month, when\u00a0I called Planned Parenthood for a free Pap smear and mammogram,\u00a0put off due to expense (only five months, I tell myself).\u00a0 The call was direct response to a conversation on the Pediatric Oncology list<\/a> of ACOR on the necessity of caretakers, exhausted moms, looking to their own health in the dangerous months and years following their children\u2019s cancer diagnoses.<\/p>\n

Planned Parenthood directed me to a local clinic, the waiting room\u00a0of which was packed with squalling infants and impassive mothers, many of whom did not appear to speak English.<\/p>\n

“This will cover any breast-health related care,” the clerk assured me as she handed me my “card,” a xeroxed page displaying the name of a cancer detection program covering low income women over forty.\u00a0 The\u00a0title, “Every Woman Counts,” was queasily reminiscent of “No Child Left Behind.”\u00a0 There was no\u00a0contact number.<\/p>\n

Previously, the\u00a0radiologist had refused to\u00a0refer the case for a second\u00a0opinion or further diagnostic testing.\u00a0 That could only be done the referring physician.\u00a0<\/p>\n

Would his office please fax me a copy of the final report?<\/p>\n

No, they would fax it to the GP but not to the patient due to concerns about confidentiality.\u00a0 (?)<\/p>\n

Would the clerk please send me the films on disc?<\/p>\n

No.\u00a0\u00a0I could pick\u00a0up the disc in person.\u00a0 They, would, however,\u00a0send it to my GP.<\/p>\n

The\u00a0answering service\u00a0pulled up my clinic records from the computer; an\u00a0unknown doctor was the physician on record.\u00a0\u00a0Retrieving the\u00a0in-house number, I asked a\u00a0clerk about\u00a0getting a referral.\u00a0 The physician who had performed the exam was there on a part-time basis only, she said.\u00a0 She did not know when he would return.<\/p>\n

I faxed her the Brody article with a message to\u00a0to whatever physician was in charge\u00a0with a request for a call back.<\/p>\n

Nothing.<\/p>\n

The referring physician (head of the clinic) had seen the article, she said, but refused to authorize a second opinion.\u00a0 Only the radiologist could do that.<\/p>\n

We had spun full cycle.<\/p>\n

Unlike the women in the waiting room, I had an ace in the hole, the\u00a0certified case manager who handled my daughter\u2019s case, who\u00a0informed me of a federal program that should cover the cost of the second opinion.<\/p>\n

Yes, they had this program, said the clerk.\u00a0 No, the physician would not authorize a second opinion.<\/p>\n

Is a second opinion not part of\u00a0Patient\u2019s Rights (adherence to which is a\u00a0condition for receipt of federal money)?<\/p>\n

She would not know about that.<\/p>\n

I faxed a note and copy of Brody\u2019s article to my general practitioner, requesting that she call\u00a0once she had reviewed the\u00a0mammogram and reports.<\/p>\n

Still waiting.<\/p>\n

“Just go there,” advised a neighbor, a feisty waitress and fellow single parent, when I asked if I should pay out-of-pocket to see my GP.\u00a0<\/p>\n

“None of this fax business.”\u00a0<\/p>\n

This was how she had saved her own life when she was diagnosed with cervical cancer, at Stage I, not advanced.<\/p>\n

Were the patient his wife, would the radiologist\u00a0even take a chance on waiting\u00a0six potentially deadly months?\u00a0 I had to wonder:\u00a0 Were any of the doctors in the system receiving a financial reward for NOT referring?<\/p>\n

The representative at the state office which runs the cancer detection program confirmed that I was entitled to a second opinion.\u00a0 If the original clinic would not request the referral, I could start all over at another clinic. (!)<\/p>\n

One more head butt.\u00a0\u00a0A clinic gynecologist took the call after reviewing the file.\u00a0 He denied the referral,\u00a0deferring to the radiologist.\u00a0 At the same time, he refused either to reassure me or clarify his thinking.\u00a0 (Was there really nothing to worry about?)\u00a0\u00a0I was free to get a second opinion\u00a0and\u00a0pay for it on my own, he snarled, slamming\u00a0the phone down.<\/p>\n

I know the drill.\u00a0\u00a0Front door.\u00a0 Back door.\u00a0\u00a0Call a politician.\u00a0 Pay out of pocket.\u00a0 Fall into debt — an exhausting reminder of how I ended up in this “free” program in the first place.\u00a0\u00a0Meanwhile a letter arrives from the radiology office warning me to be extra alert, to NOT\u00a0wait the six months should I experience a medical change. (Microcalcifications are undetectable by physical exam.)<\/p>\n

<\/p>\n

Am I Going to Die?<\/strong><\/p>\n

Will I die from this?\u00a0 Probably not.\u00a0\u00a0Even though I lack capital, I have\u00a0decent educational and social resources.<\/p>\n

I cannot help noticing that safeguarding my own life requires a far different energy from that which went into saving my child\u2019s life.\u00a0 Is this not\u00a0a major theme of women’s lives, sacrificing their own health and well being to protect that of their children?<\/p>\n

Is this not the\u00a0message of Breast Cancer Awareness Month?\u00a0\u00a0For once, put yourself first.\u00a0\u00a0Insist on good care.\u00a0 Don\u2019t be too late, not with a potential cancer.<\/em><\/p>\n

Will the\u00a0woman who lacks\u00a0my resources die from these circumstances?\u00a0 If she is\u00a0as tough as my waitress friend, probably not.\u00a0 If she is\u00a0as passive and outgunned as the women in the waiting room at the free clinic seemed to be, your guess.<\/p>\n

What I Know for Sure<\/strong><\/p>\n

<\/strong><\/p>\n

Oprah poses the question What do\u00a0 you know for sure? in the October issue of O Magazine.<\/em><\/p>\n

This is what I know for sure:\u00a0 The spin cycle of medical referrals for suspected cancers is a black hole, particularly for women\/single parents<\/a>.\u00a0 Radiologists, the near invisible specialists in this cycle, do not take nearly enough responsibility for results.<\/p>\n

The spin of local referrals may be potentially lethal for patients, but the\u00a0ineptitude therein — borne of what, cost saving measures? —\u00a0may pale in comparison to the black hole that is\u00a0interdepartmental communication at major medical centers.\u00a0\u00a0<\/p>\n

This I also know for sure.\u00a0 The American Cancer Society and the Lance Armstrong Foundation are asleep at the wheel about what it takes to beat one\u2019s way through the system, even as\u00a0Armstrong\u2019s\u00a0autobiography documents the near superhuman effort\u00a0(and wealth, and connections) necessary to\u00a0secure best\u00a0practices on a cancer diagnosis.<\/p>\n

Second opinions as well as clear-cut information about patients\u2019 rights to the same are NOT profitable for insurance companies — certainly not as profitable as the “wait and see” stance that could have gotten Sheryl Crow killed had she not trusted her instincts.<\/p>\n

Arrogance plays a role.\u00a0\u00a0To wit,\u00a0it is nearly\u00a0impossible to predict which physician will view a request for a second opinion as insult.\u00a0 AMA protests to the contrary,\u00a0the\u00a0patient feedback loop\u00a0appears to be nearly nonexistent.<\/a>\u00a0 AMA leaders have learned\u00a0nothing from the new e-medicine.\u00a0\u00a0The patient leaves the office, and the doctor is out.<\/p>\n

In a free market system such as ours,\u00a0the much vaunted “war on cancer” dedicated to saving\u00a0lives unnecessarily<\/em> lost to the disease is at heart hypocritical.\u00a0\u00a0Decrease in mortality rates over the last few decades is due primarily to improved systems for screening, i.e., early detection, not to the (far more lucrative) clinical trials and pharmaceutical research that have hijacked the system.\u00a0 The PR offensive of the latter, however, has been such that most patients cannot think through this fact.\u00a0 The implications are too frightening.<\/p>\n

Most of all, I know that nobody\u2019s looking — not even Oprah — as every year American women fall silent victim to the spin cycle.<\/p>\n

Yes, women over 40 with average risk factors should get a yearly mammogram, but what next?\u00a0 Breast Cancer Awareness Month is over.<\/p>\n

 <\/p>\n","protected":false},"excerpt":{"rendered":"

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