DC Medical Malpractice & Patient Safety Blog

A long article in the New York Times brings home the dangers of women undergoing disfiguring surgery or radiation for breast cancer they never had. The story is a familiar one to malpractice attorneys but not well enough known to the public: The critical job of determining if breast tissue is cancerous or not is sometimes left in the hands of inexperienced pathologists who are prone to error.

The problem is worse with diagnosis of "ductal carcinoma in situ" (DCIS), an early form of cancer that may or may not progress to truly invasive cancer. The criteria for DCIS are sometimes subtle and not all pathologists agree on them.

What can patients do to protect themselves?

As I write in my book, "The Life You Save," you should never have any kind of cancer surgery without at least one second opinion on the biopsy. You can have a top cancer pathologist review your tissue slides for a cost of at most a few hundred dollars, and it might even be covered by your insurance.

Second, make sure the pathologist who interprets your specimen has enough experience. The College of American Pathologists now says 250 cases a year are the minimum for competence in this field, and it is starting a special certification program for breast cancer pathology.

The Times' article features Monica Long, a nurse in northern Michigan who had disfiguring breast surgery for DCIS, only to learn later that she never had it. She also learned too late that the pathologist at her hospital had only seen 50 cases a year and was not yet certified in any kind of pathology when he gave the reading on her tissue.

Some women get so scared by the diagnosis of DCIS that they have BOTH breasts removed. As previously reported in this blog, having a healthy breast removed does not improve a woman's statistical odds of survival. And as many as two out of three cases of DCIS never progress to full-fledged cancer. But such is the power of the "C" word to frighten people into doing anything -- even undergoing mutilation unnecessarily -- to try to stay alive.

This makes it all the more imperative for the pathology community to develop better criteria for the diagnosis of DCIS, and to improve the certification program so that this scary diagnosis is not made unless it's truly warranted.

The Times' "Well" blog has compelling accounts written in by other patients. Click here to browse them.

Reading these stories compels me to make another point: Unless you are financially destitute, I think it's a bad idea to let insurance coverage drive important medical decisions. If the insurance company won't pay for getting a second reading on the biopsy, scrape up the dough and get it done yourself. You'll be glad you did.

Among other second opinion providers, the Armed Forces Institute of Pathology in Washington, DC, gives second readings at a modest cost.

Every hospital patient needs someone with them at all times to help prevent medical errors and keep them safe. That's a mantra I have advocated for years, and another example of why it's good advice comes with a riveting story in the Washington Post by health writer Sandra Boodman.

Ms. Boodman's article tells how a Washington area woman's advocacy in the emergency room and hospital helped lead to a correct diagnosis of baffling symptoms, and likely saved her sick daughter from harm. The article interviews Patricia Dawn about her 4-year-old daughter Brooke's illness, that was eventually discovered to be Kawasaki disease, an unusual heart condition.

Brooke got the right treatment in time, but only because of her mother's persistence. Mrs. Dawn refused the recommendation of the emergency room doctors to take her daughter home at 2 a.m. when she wasn't feeling any better but they had run out of things to do. At her insistence, her daughter was hospitalized, and an infectious disease specialist eventually figured out that the red lips, red eyes, fever longer than five days, and swollen lymph node in the neck all were signs of Kawasaki, which affects about 2,000 American children a year.

It was also at the family's suggestion that the infectious disease doctor was brought in who made the correct diagnosis.

The story underlines the importance of having a good advocate present at all times with a patient in the hospital. Even a lay advocate can see when symptoms aren't improving and can insist on action.

I discuss this subject in depth in Chapter 12 of my book, "The Life You Save: Nine Steps to Finding the Best Medical Care -- and Avoiding the Worst."

That question was asked in a New York Times column by Dr. Pauline Chen, and her column prompted a number of thoughtful comments by both doctors and patients. Clear communication is a critical element to good diagnosis, and that puts burdens on both doctors and patients.

Some of the comments on the column which I found most helpful:

I think the most important thing to avoid missed diagnosis is to improve the communication between doctors and their patients. It is especially important to encourage patients to be pro-active and be involved in their care. For example, I give my patients copies of all their test results when they come to visit and encourage them to read them and ask questions if they do not understand specific terms (and they frequently do). I tell all my patients not to assume anything; “If you call to find about test results and no one return your call, do not assume that they are ok. Please call again and make sure that you speak to someone.”

As a cancer specialist in a referring center, many of my patients ask whether they had their cancer for a long time, and whether an early diagnosis was missed. I perfectly understand the concerns. However, it is my experience that patients who are involved in their own health care and are well informed, usually have less chance of having missed diagnosis than those who blindly trust the system and passively participate. Blaming never resolves any problems. It is more tragic if one (patients or doctors) did not learn from their mistakes.
— Anas Younes, M.D.

And this one from a doctor in training:

I appreciate the 2nd half of the article, particularly highlighting the social characteristics of the patients most likely to not follow up with something they should have. However, in contrast to the comments above, I believe that it is always the physician’s responsibility to make sure that he/she and the patient are on the same page. I say this as a physician-in-training, and as a patient as well.

Patients are sick, scared, and, for the most part, worked pretty hard to get through the clinic door. it is the physician’s responsibility to understand the patient’s perspective, and act accordingly. We need to understand their disease as they understand it, even if we don’t agree with it.

All too often, we ignore or fail to appreciate the power differential latent within the patient-physician relationship. If a physician authoritatively tells a patient to schedule a mammogram or colonoscopy, it takes a strong patient to go against that edict. However, when the patient doesn’t follow up in the way we want him/her, it is our fault for failing to understand their position. Within each encounter, we need to strive for a truly shared decision-making model. If we solicit the patient’s thoughts, feelings and concerns about the plan we have for them, they will be on board with the plan, because it’s their plan too.

Granted, this is a tall order, However, it is our responsiblity as physicians to ensure that the patients we see are on board with us. Now certainly there are some patients and some reasons why a person may not follow-up when they say they will, but, from my experiences, a patient chooses not to follow-up when he/she hasn’t been part of the decision-making process.
— Alex

Patients who want to communicate effectively with their physicians and be joint participants in the care plan should take a look at my system for going to the doctor's office, in Chapter 3 of my book, "The Life You Save: Nine Steps to Finding the Best Medical Care -- and Avoiding the Worst." The system is "Make a List, Leave a List, Take a List," and it involves putting in writing all our worrisome symptoms before the visit, leaving that list with the doctor, and making sure to take home a list of the action plan. This helps focus both you and the doctor on what is important and helps cut way back on the potential for miscommunication which is the source of so much misdiagnosis and missed opportunities for cure.

When someone over age 55 develops memory problems, it is often diagnosed as Alzheimer's, or another type of dementia, or perhaps Parkinson's disease, all of which are progressive and non-reversible. But families should be aware of one condition that can masquerade as any of these but if accurately diagnosed, can be treated successfully. The condition is called normal pressure hydrocephalus, or NPH, and as Jane Brody reported in the New York Times, because it is so frequently missed, no one is sure how many people have it, but estimates are up to 375,000 people in the United States.

Hydrocephalus involves a buildup of pressure inside the brain from lack of drainage of the cerebrospinal fluid that bathes and cushions the brain and spinal cord. Every person makes about two soda cans' worth of the fluid every day, and if it is not reabsorbed into the blood stream, pressure can build and cause damage to nerves and structures inside the brain.

Typically NPH presents first with a walking disorder -- the victims walk slowly with feet wide apart. It then progresses to urinary incontinence and loss of memory. These three issues are considered a "classic triad" for NPH.

If NPH is suspected, imaging of the brain will reveal one or more enlarged ventricles, the holes inside the brain that are filled with cerebrospinal fluid. The treatment is to put a tube into the ventricle to drain off the accumulated fluid and divert it into the abdomen. This surgically implanted shunt is reported to benefit 70 to 80 percent of patients with NPH. The manufacturer of a programmable shunt has a web site with more information: www.lifenph.com.