A Patient’s Story–How Much Can or Should– Your Doctor Tell You About Potential Risks?

Below a non-fiction story from Pulse: Voices from the Heart of Medicine, “an online magazine of personal experience in health.”  Pulse is both a magazine and an online community that provides a chance for patients, doctors, nurses, social workers to come together, and share their experiences.

The magazine’s founders write: “Despite the large numbers of health magazines and medical journals, few openly describe the emotional and practical realties of health care. We at Pulse believe that our stories and poems have the power to bring us together and promote compassionate health care. “   Pulse was launched by the Department of Family and Social Medicine at Albert Einstein College of Medicine/Montefiore Medical Center in the Bronx, New York, with help from colleagues and friends around the state and around the country (Subscriptions are free: You will find the home page here.

At the end of the story, see my note, asking HealthBeat readers: “What Do You Think: Should the patient have sued the doctor?” Would she even have a case?

                                                    Collateral Damage

By Brenda Scearcy

Dr. Robert’s office felt right to me, with a musical birdsong soundtrack, soft lighting and fresh green tea, and I had my best friend in tow: piece of cake. In this serene atmosphere, I was sure that I’d find out what to do next to finish treating my endometrial cancer.

It’s probably gone now, since my hysterectomy two weeks back, I thought. But let’s play it safe; he’s the gynecological-cancer guru.

Like a general gearing up for combat, Dr. Robert said, “We can beat this. We’ll do a second surgery to remove lymph nodes and omentum–robotically, of course, so your recovery time will be quick. Down the road we’ll definitely do radiation and chemo, and your odds of recurrence will go way down.”

That tone. So assured…

“What’s an omentum?” I asked hesitantly.

“A slab of belly fat deep in the abdomen that can trap cancer cells; we usually recommend its removal if the cancer nearby is aggressive.”

“Side effects?” I asked.

“Not much to speak of. In rare cases, you get a slightly draggy foot from nerve damage.”

My whole psyche was dragging its feet. Did I need this, just after coming through a highly successful surgery?

A month before, I’d sought treatment for a garden-variety fibroid. My primary ob/gyn, Dr. Ann, had offered to remove the fibroid laparoscopically. Beforehand, as part of her usual pre-surgical procedure, she sent a tiny chunk to the lab for a cancer check.

Bingo.

A cancerous fibroid is a whole different ballgame, so Dr. Ann and I went to Plan B–a full hysterectomy and ovary removal.

Immediately after the surgery, Dr. Ann cradled my head in her sweet-smelling arm and whispered affirmations to me, cheek to cheek. Although everything else is erased by anesthesia, I clearly remember the feel of her skin and how fervently she whispered, “You’ll even want to eat–salmon!”

I did heal like a champ, wowed by blissful, oxycodone-induced hallucinations and by seeing my teenage daughter mature as she stepped into her new role as pants-puller-upper.

Call me a flake, but I believed that Dr. Ann’s surgery had removed the cancer. During waking hours, I couldn’t drum up any sincere worry. (But I did have nightly “mares,” always the same: a terrifying man breaking into my house, and I a throttled screamer. On a subconscious level, my fears about cancer were in overdrive.)

My first post-op visit with Dr. Ann, a few days after the surgery, was tremendously reassuring. She showed me the lurid photos she’d taken of my cancerous uterine fibroid, backlit and glowing ruby-red, so I’d finally see my torturer. (I still have a wallet-size photo.) We laughed–hard, which I don’t recommend after abdominal surgery.

Then she went over the lab results with me. The cancer was grade one (not aggressive) and had been relatively contained, with just one other spot on one of the removed ovaries. Dr. Ann told me that this spot was a bit of misplaced endometrial tissue that had sprouted a tumor. It was not ovarian cancer, which is often more aggressive. Welcome news. She poured her heart into reassurances.

But still. “There are other treatments, like lymphectomy, chemo or radiation, that I want you to consider,” she said. A recent cancer survivor herself, she wanted to make sure that I stayed in touch with my inner warrior. She sent me to Dr. Robert.

And Dr. Robert insisted that lymphectomy/omentectomy was the least I should do. According to him, chemo and radiation were necessary insurance against the Big C.

He described the omentum as having little purpose and regaled me with stories of women who were vacuuming the house eighteen hours after their surgeries.

I’d studied ecology in grad school; its principles guide every part of my life. I know that everything is interrelated, and that when you do one thing, it can affect other things in surprising ways. But I wanted to believe that the cancer was behind me.

Also, I was foggy-headed, suffering from cold-turkey estrogen withdrawal after the hysterectomy. So my antennae weren’t up, and my energy for fact-checking Dr. Robert’s claims was nonexistent. And then there were those nightmares….

Ultimately, it came down to this: Dr. Ann recommended that I take Dr. Robert’s advice. He was the expert. Hoping that lymphectomy would seal the deal, I had the surgery.

The immediate after-effects:

(1) Excruciating shoulder pain, referred from my diaphragm, from gas injected during surgery.

(2) Lymphedema, a build-up of fluid caused by lymph-vessel blockage. Within two days, I looked like a sumo wrestler, with lymph pooling around my middle. No clothes fit.

(3) A walnut-sized pocket of lymph in my right belly. One night at supper, my shirt suddenly grew wet as lymph spurted out of one of the operation slits.

(4) Permanent nerve damage and numbness: Dr. Robert had accidentally cut nerves to my left quadriceps, groin and lower belly.

Dr. Robert had mentioned none of these possibilities.

During my hospital stay, I never saw him. Once home, I repeatedly phoned his office, begging for help, but he never called back. Two weeks later, during our only post-op visit, he said the nurse had never told him.

Having removed more than half of my abdominal lymph nodes, Dr. Robert found that they were all cancer-free. My post-op report stated that he’d removed them prophylactically; as I saw it, that was like removing a hip so I wouldn’t break it.

A year later, I found my legs and buttocks swelling up again. At first I thought I’d twisted my ankle, but eventually Dr. Ann enlightened me: I had chronic lymphedema.

She steered me to cancer rehab, where I learned I could improve the symptoms slightly with time-consuming exercises, careful skin care and $135-a-pair pantyhose that squeeze me girdle-tight.

Now I roll a tennis ball around my ankle to break apart the fibrosis caused by lymphedema. I research cheaper pantyhose. And to give myself time to exercise and heave my hips into those leg-hugging hose, I set my alarm forty-five minutes early each morning.

I’ve damaged my knee with the grunting maneuvers required to don the hose. Long walks are temporarily a thing of the past.

The last straw is that I must hand wash these tights nightly–an odious eight-step chore.

Looking back, what astounds me is Dr. Robert’s profound lack of curiosity about his interventions’ potential impact on my daily life. He could have anticipated some of the problems–what symptoms might I develop? How ugly would I feel as a human blimp?–and might at least have warned me about what to expect.

And if I’d known the risks beforehand, I could have asked myself which I would choose: uncertainty about a recurrence, or the tedious gamut of lymphedema care?
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PSA Testing: An About-Face

If you thought U.S. doctors would never accept evidence-based medicine, consider this: Just last week, in a stunning about-face, the American Urological Association(AUA) announced that it no longer recommends routine annual PSA testing for men under 55.   

The organization added that “men ages 55 to 69 who are considering the PSA test” for prostate cancer “should consult their doctors about the test’s benefits and risks.”

The potential “benefit of preventing prostate cancer mortality in 1 man for every 1,000 men screened over a decade” should be weighed  “against the known potential harms associated with screening and treatment [which include side effects such as incontinence and impotence }  For this reason, “ shared decision-making is recommended for men age 55 to 69 years that are considering PSA screening,”  The AUA stressed that “ patients’ values and preferences” should direct a final decision.

.In addition,  the AUA announced that “to reduce the harms of screening, a routine screening interval of two years or more may be preferred over annual screening in those men who have participated in shared decision-making and decided on screening.

I wrote about “shared decison-making” and how it could help patients considering a PSA test make an informed choice  here on HealthBeat back in 2007.(Readers interested in why this protocol is so important to patient-centered medicine may be interested in this story that I wrote for Dartmouth Medicine: “Making Choice An Option.” )  Congratuations to the AUA for having the courage to take this giant step forward into the future of medicine.

“The new guideline is significantly different than previous guidance,” the organization acknowledged, noting that it “was developed using evidence from a systematic literature review rather than consensus opinion.” In other words, urologists didn’t take a vote; they looked at the Science.

Authors of the new guidelines have “learned very quickly that there really was no high-level evidence supporting the use of screening with PSA,” said urologist H. Ballentine Carter, who chaired the panel that wrote the new guidelines.”                         

When I last wrote about PSA testing, in July of 2012, such a radical shift in the AUAs positions would have been unthinkable.  At the time, the U.S. Preventive Services Task Force (USPSTF) had given PSA testing a grade of “D”—suggesting that benefits did not outweigh risks. 

 In response, urologists joined forces with Republicans to threaten the autonomy of the USPSTF by supporting  a House bill (H.R. 5998)  that proposed to mandate “greater role for specialists and advocacy groups” in developing guidelines”  while ”eliminating the Department of Health and Human Services’ secretarial discretion to withhold Medicare funding for interventions that lack convincing evidence for benefit.”      

What a difference a year makes.

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Diversity in the Physician Workforce is Essential; What Will Happen If the Supreme Court Overturns Affirmative Action?

In October, the Supreme Court heard Fisher v. University of Texas at Austin. You may have read about the case: the plaintiff, Abigail Fisher, applied for undergraduate admission to the University of Texas at Austin but was turned down. If she had graduated in the top 10% of her high school class, she would automatically have been admitted—but she did not.

When admitting students, the University of Texas first accepts all in-state students who place in the top 10%. This policy is race-neutral and fills about 80% of all spaces. The remaining seats are filled according to an evaluation process which considers six factors. Race is one of them.

Fisher is white and she claims that the explicit use of race as a factor in admission to the university violates the Equal Protection Clause of the 14th Amendment of the Constitution.

Within the next few months, the Supreme Court will announce its decision

            What the Case Means for Medical Schools—and Patients

Last week, the New England Journal of Medicine published an editorial warning that the decision will “chart the future of affirmative action in American higher education . . . including admission of students to our nation’s medical schools.”

The editorial’s authors underline the need for a physician workforce that is ethnically and racially diverse:

“To provide good care, physicians must understand the communities and cultures in which they work. An important way to ensure that physicians understand the lives of their patients and to reduce health disparities is to promote diversity.”

I agree, and would add a second argument: if Fisher wins, the Court’s decision will leave millions of Americans without the medical care they desperately need because they live in a place where few physicians want to practice.

In this two-part post, I will be asking four questions:

1) How do we attract more physicians to underserved communities?  Could we entice them with higher salaries?  (Probably not.  A doctor who doesn’t want to raise his kids in rural Alabama won’t set up shop there even if you double his income.)

2) Should we encourage medical schools to practice class-based rather than race-based affirmative action?  This is, at best, a partial solution. A large percentage of low-income Americans are white. If they were admitted to medical school, those who grew up in rural areas might well decide to practice in similar communities where physicians are needed.. But this would not solve a larger problem—the shortage of  Latino, African-American and Native-American primary care doctors available to work both in inner cities and in the many rural areas where minorities are rapidly becoming the majority.

Multiple studies show that outcomes, communication, and compliance improve when a patient is able to see a physician from his own racial or ethnic group. This is not to say that committed white physicians cannot overcome cultural barriers and build strong patient relationships in these communities. But  many fewer choose to work, and raise their families, in remote rural areas that are primarily Latino, Native American, Mexican-American, or African American.

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Obama Wins Round One of Budget Negotiations

CNN is reporting that the “Fiscal cliff deal is down to wrangling over the details.” While others in the media continue to say that talks are stalled, everything I know about both the economics and the politics of the situation tells me that CNN is right.

At 4:30 this afternoon, CNN updated its story: “Both sides agree the wealthy will pay more, so now fiscal cliff  talks come down to how much Republicans can wring out of the White House in return for giving in on taxes.

“To President Barack Obama, it’s all about first locking in additional revenue from raising taxes on high-income owners, an outcome the GOP has long rejected.”

President Obama had made it clear that negotiations over government spending on safety nets such as Medicare wouldn’t begin until Republicans accepted a higher marginal tax rate for individuals earning over $200,000 and couples earning over $250,000.

The president dug in, and, according to CNN, he has won round one.

“Retiring Republican Rep. Steve LaTourette of Ohio told CNN on Thursday that he sensed a shift in the House GOP approach during a conference meeting the day before.

“A GOP source told CNN that talks between staff members on both sides resumed Thursday for the first time this week, after Obama and Boehner spoke by phone the day before.”

A Two-Step Approach

It is not clear whether negotiations over so-called “entitlements” will be concluded before the end of the year. But CNN, reports

“All signs point toward a two-step approach sought by newly re-elected Obama — an initial agreement that would extend lower tax rates for income up to $250,000 for families, while letting rates return to higher levels from the Clinton era on income above that threshold.”  That agreement on taxes will be signed and sealed before the end of the year.

“Even conservatives such as Oklahoma Sen. Tom Coburn and Louisiana Gov. Bobby Jindal acknowledge the obvious — taxes on the wealthy are going up despite opposition by Republicans.

“‘Whatever deal is reached is going to contain elements that are detrimental to our economy,’ Jindal wrote Thursday in an opinion piece published by Politico. ‘Elections have consequences, and the country is going to feel those consequences soon.’”

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Urologists Threaten the Autonomy of the U.S. Preventive Services Task Force

Over at HealthNewsReview.org  Gary Schwitzer has published a disturbing piece that looks at American Urological Association support for a bll that would make “significant changes to the U.S. Preventive Services Task Force.”

The guest post is written by Dr.Richard Hoffman, who is both one of HealthNewsReivew’s reviewers, and an editor at the Informed Medical Decisions Foundation a group that promotes “shared decision making.”   The Foundation, which was co-founded by Dr.Jack Wennber, the father of the Dartmouth Reserach,uses medical evidence to produce outstanding videos, pamphlets and web-based programs that help patients understand the potential risks and benefits of  elective surgeries and tests..  (I have written about “shared decision making” in past posts ). 

Below, an excerpt from Hoffman’s piece:

“Last week, the Supreme Court largely upheld the Affordable Care Act. Two weeks ago, legislation (H.R. 5998) was introduced that threatens the autonomy of the U.S. Preventive Services Task Force.

“The legislation proposes to mandate a more transparent process for guideline development, a greater role for specialists and advocacy groups, and eliminating the Department of Health and Human Services’ secretarial discretion to withhold Medicare funding for interventions that lack convincing evidence for benefit The legislation, which comes on the heels of the Task Force’s controversial D rating against prostate cancer screening, is strongly supported by several prominent urological associations. 

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