Johns Hopkins estimates that medical errors are the third leading cause of death in the U.S.
My mom died as a result of a “laparoscopic cholecystectomy.” Removing the gall bladder before 1988 required a large incision, a multiple day hospital stay, and a six-week recovery. The scope form of the surgery, introduced in 1988, was considered a miracle that would transform it to an outpatient procedure.
Doctors and patients face a hard reality with new procedures, however. In the case of “lap choli,” a statistically verified “learning curve” showed that the first 50-70 surgeries a surgeon performed carried significantly greater injury and mortality than the next 50. At 100 surgeries, errors level off. The most common error was severing the bile duct. If this happened, standard practice was to convert from a scope surgery to an “open” surgery. Although it was a serious injury, most people survived—if their doctors recognized and responded to the injury.
My mom was the first scope surgery her doctor had completed alone on a human being. My mom entered this doctor’s career at the worst possible time, at the steepest part of the learning curve since she had only practiced on pigs and assisted. She severed my mom’s bile duct, refused to recognize the injury and then sent her home. My mom died a few agonizing weeks later.
Among the regrets I have in my life is that I didn’t demand sooner that my mom get a new surgeon. She did not have to die at the age of 52. She could have found a better surgeon to start with if doctors were required to tell patients about learning curves. My mom could have asked her surgeon how many lap cholis she had done. We could have fired the doc as soon as the radiologist showed us film of the severed bile duct.
You don’t get do-overs. If these kinds of stories don’t scare the crap out of you, they should. But, I’d prefer that they motivate you into taking more responsibility for your health care. These are the things I recommend you do, because your life may depend on it.
Health Care Disparities
The first step in getting treatment is being diagnosed and not everyone gets a fair shake. For instance, African American women, African American men, and women generally are more likely to have a delayed diagnosis of bladder cancer. Their mortality rate is higher, too. The latter may have something to do with the biological nature of the cancer, but the former is straight up human error. If you see blood in your urine, get a referral to a urologist. Don’t wait. Don’t assume you “just” have an infection. Take action.
Second Opinions and Treatment Protocols
Pathology is as much art as science, I’m told, and errors happen. If you are diagnosed with cancer, get the biopsy slides and get a second opinion. Even if you have to pay for it out of pocket like I did, it’s worth it. You can’t be treated properly if you aren’t diagnosed properly.
In this era of evidence-based medicine, treatments follow protocols. Ask to see the treatment protocol for your disease. If you are diagnosed with cancer, go to the NCCN website and download the treatment protocol for your type of cancer and use it to inform your conversations with your doctor. And know this, in 2011 Science Daily reported that
"out of the 4,545 bladder cancer patients included in the study, only one received the comprehensive care recommended by the American Urology Association and the National Comprehensive Cancer Network."
If you have cancer, go to an NCI-designated cancer center. Even if you don’t get your treatment at this hospital, a specialist can give you a second opinion, look over your treatment protocol and give you good direction.
You don’t have to become a specialist in your own disease, but you need to do more than go to a doctor’s office and follow directions. You can find out about your doctor’s training and their reputation. I always recommend asking nurses. They usually know the really bad ones and the really good ones.
In addition, the ProPublica website has several resources that can hep you. Dollars for Docs reveals how much money your physician has taken from drug and equipment companies. They also put these numbers into context. In addition, you can find out about your doctor’s prescribing habits, knowing that the docs who get the most money from drug companies prescribe those name-brand drugs more frequently. Finally, ProPublica has done research on some of the most common (probably overly recommended) surgeries and their readmission rates.
Records and Accountability
Keep your own records. Keep track of blood tests and MRI results and CT scans. Carry with you a detailed list of all of your prescriptions. I have almost zero confidence in my doctors’ and hospitals' ability to keep track of and coordinate my health records. This doesn’t mean that my docs are unreliable. But medical records in this country are still scattered.
You should have a doctor that encourages you to take notes, to bring in written questions, and to understand your health. If you can’t repeat back to her why you’re being prescribed a particular medication then you’re unlikely to use medication correctly. In addition, you have to follow the protocols, too. Treatments require follow-up and testing. If you’re due for a CT in six months, put a reminder in your phone. And then, show up. Refill your medications on time. Take your meds at the right time of day.
It's impossible to prevent all medical errors. Medicine is an art practiced by human beings. But, you can assert some control and make better decisions.
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