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?

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 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 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. . . .

 

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

  1. The best time for a second opinion is before, not after, the procedure. A medical procedure, especially anything invasive, is not like buying a product. If your TV or new car is defective it can be replaced by another one. But neither the patient nor the doctor can reverse the outcome of surgery.

    Professionals should craft a “best practices” protocol to furnish patients with a list of informed peers who for a modest fee provide another view of expected outcomes and complications. This is an indemnity issue that can be clearly defined in advance.

    Years ago one of my customers went missing for a couple of months and when I saw her again she had a horrible scar across the side of her face. She was a ticket-taker in a movie when someone pushed her through a glass wall and a piece of the falling glass sliced her face open! She was shockingly scarred in her twenties.

    Not knowing better I said something about at least she now has a pile of money a lot bigger than she would ever earn as a ticket-taker. I was surprised when she informed me that under the workers comp law the employer was protected from lawsuits as long as they are in compliance with all insurance and safety requirements, and this event was considered a covered workers compensation accident.

    I’m just a layman, but something about her story and the one in your post seems terribly out of balance.

    • John–

      Exactly. Medical procedures come with no warrantee, no guarantee and are not returnable.

      If you feel at all uncertain about a medical procedure, get a second opinion. (In most cases, your insurer will pay for it. Check it advance, but your insurer does not want to wind up paying for something that you later regret. And don’t go to the doctor who referred you to the specialist for the procedure. Dr. Ann clearly
      trusted Dr. Robert and saw him as “the best” –that’s why she referred him. He probably has an excellent reputation. But as it turns out, he was not “the best” for this patient. (The fact that he didn’t return her calls or follow up on her alone suggests that he is not practicing “patient-centered” medicine.)

      It would be better to go to a physician who does not know Dr. Robert, and therefore is completely objective. I also wouldn’t mention who recommended the procedure.
      I would just ask many questions about possible risks and side effects.

      I don’t know a great deal about the rules for workman’s comp, but I would think that if someone pushed her through a glass door, the person (rather than the theater)
      could be sued. Of course, he or she might not have much or any money, but at the least, charges should have been brought . . .

  2. May I simply say what a relief to find a person that genuinely understands what they are discussing on the net.

    You actually understand how to bring a problem to
    light and make it important. More people really need to check this out and understand this side of
    your story. I can’t believe you aren’t more popular since you most certainly have the gift.

    • Breast Actives Bogota–

      Thank you very much.

      But I am not as unread ad you may fear. I am actually pretty popular. My book on healthcare (Money-Driven Medicine) was made into a documentary by a
      an award-winning producer, Health Beat has a healthy number of readers, and on Twitter I have a fairly large number of followers–many intelligent, high profile people and groups.

      I must admit, what I write is not for everyone: I tend to write long, complicated blogs and books. Not everyone wants to spend the time that it takes to read them. Many people are looking for quick, simple solutions.

      But I like and appreciate my readers–folks, like you, who are willing and interested into delving into the problems, and
      thinking about them.

  3. Theses are complicated situations.Generally both patients and doctors have overconfidence in bio-medical technology. As many have said ” a strong dose of humility” is called for in the medical profession and patients expectations too must be lowered. Agee with Maggie’s statement above that “medical procedures come with no warrantee, no guarantee and are not returnable”

    • Dr. Rick–
      Yes. One of things I most like about Dr. Atul Gawande is his humility. He is very clear about how little we know about the human body and mind. He stresses the need to use what research we have to try to practice “evidence-based
      medicine” while remaining aware of the limits and uncertainties of medicine. Everyone should read his book “Complications”
      as well as his New Yorker articles.

    • Rick–

      I think only people who are pretty secure about their intelligence are able to admit how much they don’t know.
      Gawande (who is brilliant), is a good example of this.

  4. I think those who are over confident of what they know are most likely unable to admit what they don’t know. However, in this situation, Dr. Ann wouldn’t admit to the patient that she had mistakenly referred her to a not so good physician based on what she had said who is an expert on the matter. Thus, the case end up to what it should not supposed to be.

    • Macy Rivers-

      Yes I do think that Dr. Ann should have acknowledged that the surgeon had not given the patient enough
      information about risks. I would hope Dr. Ann won’t recommend that surgeon again.

      • From the patient: The situation was complex, and a short essay, even one as carefully edited as those in Pulse, cannot do it justice. I defend Dr. Ann’s treatment and advice, because I know the back story. I had exhaustively researched the first surgery (Dr. Ann’s), vetted all options, and prepared my mind and body as best I could. Dr. Ann answered all my questions clearly, even personal ones like how she was going to make sure she got a good night’s sleep on Surgery Eve!
        I healed so wonderfully that I trusted the second surgery, the easier one, would be a breeze. I didn’t do much research. It was only four weeks after the first one, and I was tired and profoundly foggy from estrogen withdrawal. I was busy. We took off on our long-planned trip to Italy three weeks after the first surgery, and after we returned, I immediately entered the hospital for surgery two. So I bear some responsibility.
        I trusted that Dr. Robert’s medical license and thriving practice were credentials enough. Dr. Ann is not an oncologist. She also must have trusted him. We both learned.

        • Brenda–

          Thank you for commenting.
          Everything you say about Dr. Ann rings true.
          But I don’t think you should blame yourself because you didn’t do enough research.
          It is not up to the patient to do independent research; it is up to the doctor (in this case Dr. Robert) to present all relevant information about risks and benefits to the patient.
          Legally, he is not required to do this, but he has an ethical obligation to make sure that the
          patient understands what he
          or she is agreeing to.

          These days many patients want to do some research of their own. That’s fine–but they need to be aware that there is much misinformation out there on the Internet. This is why you need a doctor to present the information to you, and explain how it applies to your particular case.

  5. From the patient: The situation was much more complex than readers here may realize. I researched the first surgery extensively, spending long hours online. I knew Dr. Ann was available for questioning before surgery one, but didn’t need any more than I got in our pre-op visits. We were both well-prepared. She was, and remains, open-minded to the extreme and helpful. But that exhaustively-researched surgery (performed by Dr. Ann) went well and I was thrilled with my recovery. I let my guard down before the second surgery (a few weeks later with Dr. Robert) because I was still recovering, hazy from estrogen withdrawal, and taking a years-in-the-planning trip to Italy. I returned just in time for surgery #2 and trusted Dr. Robert, admittedly based on little evidence. I assumed that his medical degree and thriving practice were enough proof of competence.
    Dr. Ann referred me to him because she is not an oncologist. For that, I cannot fault her.

    • Brenda–

      You write “I let my guard down.” A patient should not have to have her guard up.
      The doctor/patient relationship must be based on trust; “caveat emptor” should never apply.
      The patient is not a “customer”; the patient is someone who is sick and needs help.
      The doctor has taken an oath to put the patient’s interests ahead of his own. A car salesman has not done that.
      Finally, if patient feels at all anxious or suspicious about a doctor (for instance if he doesn’t answer your questions) you should find a new doctor. If you don’t trust the physician this is likely to interfere with how you do during surgery and how well you heal.

  6. To answer the question: should the patient have sued?

    She could have but winning would have been very difficult. You generally have to prove the physician did not adhere to the standard of care, and I don’t see that he varied from that. Granted, his teaching was poor; a failure to completely discuss the risks would be the only opening. But it becomes a matter of he said she said.

    Maggie says patients should not have to have their guard up. I agree. This is why patients should always get a second opinion before having any surgery. However, even that might not have worked.

    What might have worked would have been a mandatory consultation with a neutral party whose job is solely to explain potential surgical risks to patients. Not to debate the merits of their particular case, but simply to tell patients, “this is what can happen if the case goes wrong.”

  7. One of things I most like about Dr. Atul Gawande is his humility. He is very clear about how little we know about the human body and mind. He stresses the need to use what research we have to try to practice “evidence-based
    medicine” while remaining aware of the limits and uncertainties of medicine. – See more at: http://www.healthbeatblog.com/2014/05/a-patients-story-how-much-can-or-should-your-doctor-tell-you-about-potential-risks/#sthash.4kv53i4R.dpuf