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

AB Introduction: For a while now, Angry Bear has been featuring some of Maggie Mahar’s articles about Healthcare, the PPACA, and costs. Besides being a former 20th Century Foundation Fellow Maggie’s has also written as a financial journalist for Barron’s, as well as articles for Time Inc., The New York Times and other publications. Her first book, “Bull: A History of the Boom and Bust 1982-2003” (Harper Collins, 2003) was recommended by Warren Buffet in Berkshire Hathaway’s annual report and her latest book “Money-Driven Medicine: The Real Reason Health Care Costs So Much” touches on the squander and the waste found in delivering healthcare in the US. For more on her books, click here.

Besides writing at Angry Bear, Maggie has her own blog The Health Beat from which this article was originally published.

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?

After this second surgery, friends encouraged me to consult a lawyer about suing. The lawyer explained the difficulties with cases like mine. And I squirmed to think of pictures of my body on a courtroom screen. Frankly, I’m just not the suing type.

In fairness, Dr. Ann affirmed that Dr. Robert’s lymphectomy recommendation was sound. She remained circumspect and uncritical whenever I asked about it. I question only how hard he pushed for it–and how little he said about possible side effects.

I just wanted him to listen. I still wish he would. I fantasize about standing outside his office wearing a sandwich-board sign: “First, do no harm!”

In my perfect world, Dr. Robert would solicit my feedback, listen closely, learn from me and then adjust his methods. Someone else might be spared lymphedema.

And I’d get back my forty-five minutes a day.

About the author: Brenda teaches and performs traditional Irish music and leads nature hikes for schoolchildren in the ancient forests and wetlands outside of Portland, Oregon, where she and her husband live. “I wrote this story because I felt that my experience would fly under the radar otherwise, and I’d lose the therapeutic benefit of organizing my feelings. I’m certain most doctors and nurses want to know how their interventions impact patients’ daily lives. And I believe most of them will have the joy of identifying with–and being inspired by–Dr. Ann.”

Story editor: Diane Guernsey

Note to HealthBeat/AB Readers: Do you think that Brenda Scearcy should have sued Dr. Roberts?

I totally sympathize with her feeling that “I’m just not the suing type.” As Justice Brandeis once said: “There are two things to fear in life: death and litigation.”

At the same time, it seems that Brenda Scearcy’s doctor told her relatively little about the risks of the procedure. If he had “shared decision-making” (SDM) with her, and made sure that she fully understood possible side effects as well as benefits, she might well have decided against the surgery. (For a description of “shared decision-making” please see this post.)

But there is no law requiring that surgeons or other physicians follow SDM protocols.

By law they are expected only to ask the patient to sign a document indicating that he is giving “informed consent.” (How much information the patient actually has—and how much he understands–varies widely.)

Seven or eight years ago, I gave a talk about “shared decision-making” at the annual meeting of the Massachusetts Medical Society. There, I was told that physicians simply don’t have time to discuss the pro’s and con’s of various tests and treatments in such detail. Doctors are not paid for the time that it would take to do this. Some patients also say that they don’t want to be “overwhelmed with information.” They “want the doctor to decide.”

Nevertheless, since that time, support for Shared Decision-Making has grown. The Affordable Care Act actually directs the Secretary of Health and Human Services to establish standards and a certification process for educational tools to help patients and caregivers understand their treatment options. The legislation also provides grants for developing shared-decision making aids and sets up a network of “Shared Decision-making Resource Centers.”

In the meantime, the state of Washington has passed a law stipulating that, if a doctor follows shared decision-making protocols, this will lessen the risk that he can be found guilty of malpractice.

HealthBeat/AB readers: Do you think that this should be the law nation-wide?

Finally, the patient tells us that whenever she asked Dr. Ann about Dr. Robert’s recommendation “she remained circumspect and uncritical.”

The story makes it clear that Dr. Ann is a caring physician. Did she have an ethical responsibility to comment in a more open fashion? Presumably she did not want to become involved in a malpractice suit. There is also the possibility that Dr. Robert would have sued her. . . .
Originated at Health Beat Blog

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