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
This is a hideously complicated issue. Having watched my husband go through meaningless surgeries for his stomach cancer which eventually killed him, I have a lot of mixed feelings about all of this. I really think it would have helped my husband in his decisions if the side effects had been more thoroughly discussed. I also think the surgeon could have cared less about my husband’s well being. This apparently is typical of surgeons that in my mind are basically just refined butchers who process patients like animals in an abattoir, but with lots more decorations to make us believe they know more than they do. Surgeons need more ethical training, and other doctors need to stop deferring to them.
The law is very clear – a physician/surgeon should proceed only with informed consent (other than emergent cases).
How much information constitutes informed consent? Certainly it requires at least a summary of the possible risks and complications, both post-op discomfort and possible long-term side effects.
To quote my favorite nurse, “when in doubt, don’t sign the consent form.”
Perhaps a comparison to legal malpractice and inadequate representation standards would be appropriate. If a criminal defense lawyer does not warn a client that pleading guilty under a deal could lead to deportation, he’s guilty of inadequate representation. How a doctor can claim informed consent by a patient in the circumstances described in this post is are to understand much less justify. That doesn’t mean this person should sue but it does mean that the standards for the medical profession should be strengthened and clarified. For surgeons to claim they don’t have time for complete advice to patients and don’t get paid for it suggest to me that perhaps they should get sued until they change their attitudes.
Sorry, should have said, “hard to understand”.
Carolannie 1949
I agree, this is a terribly complicated issue.
First, on surgeons: Are they different from other doctors? A few years ago, a HealthBeat reader who is a pediatrician–and the son of a surgeon—wrote a guest-post for HealthBeat describing what he saw as a “cultural divide” between surgeons and other doctors. You’ll find it here http://www.healthbeatblog.com/2008/08/surgeons-and-ot/
I definitely think that a course in medical ethics should be required in med schools–and that such courses should include a section on shared decision-making, a process that begins with giving the patient pamphlets and videos to talk home, spelling out risks and benefits.
The videos can be particularly helpful. They shows patients who have been diagnosed with the same condition explaining what they decided–and why. Some decided to go ahead with the procedure; some don’t.
Watching the videos, a patient often sees someone whom he identifies with: “That’s just how I feel!”
When the patient next sees his doctor, the physicians talks to him about what he read and saw, asking him questions to make sure he understands the risks and the odds.
A few years ago, I wrote an article about shared decision-making for Dartmouth Medicine.
You’ll find it here http://dartmed.dartmouth.edu/fall07/html/choice.php
(I recall that at the time, my editor asked me whether “Joe Rubin” was a
real individual or a composite character. I explained: “That’s no composite: that’s my husband!) .
.
Save the rustbelt–
Even though the patient is given a list of risks, he may not understand them, or how they apply to his case.
Sometimes he is given an “informed consent” form right before surgery. (Your friend is right; if in doubt, he should refuse to sign. )
There needs to be a conversation (and it’s not a short conversation)
explaining the risks, possible side-effects, and the “odds” that a patient who fits a particular profile (in terms of age, other health problems, etc.)
is at high, moderate, or low risk.
If doctors don’t volunteer this information, patients should ask questions.
If the physician still isn’t forthcoming, the patient needs to find another doctor.
Jack D–
Under today’s laws, a patient can’t sue arguing that he wasn’t in a position to give “informed consent” only if he can prove that a hypothetical
“reasonable person” would not have agreed to the treatment if he had known all of the risks.
This is a very abstract standard which makes it very difficult for the patient to win. Legal scholars have argued that the standard should take into account the individual, and his values. For instance, would he rather no have the operation than risk having a stroke and winding up paralyzed?
I spent the morning reading a 245 page medical chart, in which informed consent was only one of several difficult legal and regulatory issues, not to mention a bunch of clinical issues. When the “wheels come off” medicine can be very ugly.
On another note my favorite nurse hangs up her stethoscope Friday at 11:15 pm, the end of a long career of compassion and competence.
I am 57 and will not accept any sort of treatment for cancer. Were I significantly younger or was raising young children it would be likely that my opinion would be different nor am I suggesting anyone else should make the same choice but for me, the potential complications of cancer treatment are too much, I choose hospice instead. Would that my uncle had made the same choice, he could have had another 6 months/year w/his family & friends, instead, his last six weeks were spent lying comatose in a fetal ball in an ICU…
“I just wanted him to listen.” The first thing I have ever read in any article regarding malpractice and how to avoid it in your practice is related to that statement. All the doc has to do is take the time to listen and discuss and almost all the doc’s malpractice worries will go away.
So simple.
With that, yes surgeons are different. In researching my states medical practice act, surgeons were specifically listed as a distinct medical group under the stated definition of “schools and systems of medicine”. That did change over time.
Also, I can tell you that after spending 30 weeks in anatomy lab cutting up an actually human body, that had been sitting in formaldehyde long enough so that the body looked liked dehydrated wet meat and was so dissected that what was left was packed up into a 2 x 2 cardboard box…I know how easy it is for someone to become less real about that patient (note I did not say person) they are about to cut open.
Lastly: …Dr. Robert would solicit my feedback, listen closely, learn from me and then adjust his methods.
It is supposedly why they call it practice. But, how long did it take to go from a radical mastectomy to a lumpectomy? 20 years?
Hi Daniel:
I have to agree on surgeons. My heart surgeon, while good, he was an ass. I was preparing to get up and have a few words with him 2 days after the surgery; but, the nurse’s assistant asked me where I was going and the pain was too great. The best were the PAs and the nurses.
Darms–
As the mother of grown children, I feel exactly the way you do.
When they were young, if I were diagnosed with cancer, I simply would have turned myself over to an oncologist.
Now, I would not accept treatment unless I could be assured that the cancer was completely treatable (perhaps breast cancer that definitely had not spread.) Too many cancers cannot be cured.
As I often tell HealthBeat readers: there are worst things than dying. (Moreover, dying is inevitable. We can’t dodge it. But we can decide not to prolong it.)
Daniel–
Yes, the example of a radical mastectomy vs. a lumpectomy is a good one.
And shared decision-making research shows that if you give a patient time to think about options, and the medical evidence which shows that she is
not more likely to die if she has a lumpectomy (though there is a risk that she will need a second surgery) most (not all) will choose the lumpectomy.
But, as one shared decision-making coach told me, when they first hear
“breast cancer” their initial reaction is “take it off, take them both off.”
This is how terrified we are of breast cancer. The nurse explains: “First, you have to get them down off the chandelier. Then when they’re calmer, you can explain that there’s time to talk and think. We don’t have to operate next week. . .
Maggie,
The legal standards on the cause of action for lack of informed consent vary from state to state. It would be wise for a potential plaintiff to confer with a qualified trial attorney to assess the chances for success should the person be motivated to sue. Not all persons are, of course. My comment about maybe more should really had to do with changing physicians behavior.
Run 75411–
You have always been so positive about what was clearly a very painful surgery–and you have always made it clear that your nurses were wonderful
But you never said much about your surgeon.
Now I know why.
I hope you might write a letter to the hospital CEO and ethics committee —
first, letting them know how good the nurses were,
and secondly letting them know how uncaring the surgeon was. (Make it clear that this is your opinion; the nurses were all very positive about the surgeon. You don’t want the nurses to get into trouble.)
The hospital won’t do anything. But if enough patients begin to complain, hospital CEOs will begin to realize that such surgeons make them vulnerable to suits. This is what worries hospital CEOs.y
As more patients make their feelings know, things are more likely to change.
.
Maggie:
We did personally thank the nurses and the nursing assistant with gift certificates to Target. They seem touched by it. They really took good care of me and made it a point that I never over did as I was ready to leave the next day. I remember the one nurse (Cherie) who was in my room each hour the first night. The next morning I thanked her for watching over me. Tish and Keily were also extremely good to me. Connie the nursing assistant sailed across the room one day to grab my computer as I was working and extending to set it down. Since it was just before Christmas, Jan brought in a huge tray of treats for them to share. Even the surgeon had some and asked from where it came.
How can you get angry with a man who found places on my heart to tap into with three veins? He was a former Cleveland Clinic surgeon who moved there. He never lost anyone on the table after 5,000 operations and MedCentral was in the top 5% of hospitals for this operation. I remember joking with my wife about the banner in the lobby lauding this accomplishment three months earlier after having my gall bladder out . . . “at least, I will never need that operation.” I was a runner, weight lifter, ate healthy foods, and yet I needed it.
Run 75411–
You have always been so positive about what was clearly a very painful surgery–and you have always made it clear that your nurses were wonderful
But you never said much about your surgeon.
Now I know why.
I hope you might write a letter to the hospital CEO and ethics committee–
first, letting them know how good the nurses were, and secondly letting them know how uncaring the surgeon was. (Make it clear that this is your opinion; the nurses were all very positive about the surgeon. You don’t want the nurses to get into trouble.)
The hospital won’t do anything. But if enough patients begin to complain, hospital CEOs will begin to realize that such surgeons make them vulnerable to suits. This is what worries hospital CEOs.y
As more patients make their feelings know, things are more likely to change.
.
Run–
It’s good that your surgeon has never lost a patient on the table–but one
can’t help but wonder–how many unnecessary surgeries has he down?
Research shows that about half of the patients that undergo that surgery
do not benefit. It does not lower their chances of dying of heart disease.
I am Not suggesting your surgery was unnecessary.
But as Dr. Atul Gawande ( a surgeon) has written the number of surgeries–particularly heart surgeries–has sky-rocketed in recent years and this is NOT why fewer of us are dying of heart disease.
Changes in diet and exercise–as well as what we have learned about using inexpensive medications–have reduced fatalities.
Maggie:
I know what you mean. While not as knowledge as you are on the topic, I am pretty well versed. I was running 10ks up till a few years ago. Through my forties I was into the weight lifting thing and got pretty good for a man with arms and legs too long. I was a backpacker and white water rafter taking teenage boys on trips up north or out west. My diet was healthy if one follows the recommended regime sans the leaky gut syndrome. My weight is ok and I could lose 10-15 pounds to be better (damn pills are not helping). I did everything right and yet when I walked into the ER that day, my heart was fluttering. The pain was mild and I felt like I was catching a severe cold or pneumonia.
I do not know why I had blockages as my cholesterol was 110 that day and was never above 200 at any point in my life. My heart efficiency rate was 67% or good. I do not know why the blockages other than maybe stress. They will be doing the carotids eventually too.
Run:
Some of the best surgeons I have worked with are total bleeps.
The whole God syndrome I think.
Take care of the ticker, we need you around here.
And nurses are the glue that holds the whole system together.
Thanks, Maggie, for taking the time to respond!