Lisa Drummond did what people are supposed to do when they feel sick, she went to see a doctor.
Then she went back, again and again. She was given multiple explanations for her symptoms, offered solutions and found temporary relief. But something was still wrong.
In December 2018, after two years and several doctor visits, Drummond got the answer she was looking for, just not the one anyone wants to hear: metastatic colorectal cancer.
Drummond said doctors told her she likely got the disease a couple years ago, right around the time she started to have symptoms. The five-year survival rate for colon cancer is 90 percent if caught early, according to the American Cancer Society. But at her stage of disease progression, Drummond said her options are limited to managing the pain.
The 53-year-old New Richmond grandmother to six said she wants to use her story to encourage others to be more aggressive when it comes to their health.
Her message to anyone living in pain and unsatisfied with their care: “I want them to know that they’re right. That feeling inside them is right. If they’re not getting clear answers from their doctor ... then go see somebody else.”
No simple diagnosis
Drummond is among the untold number of Americans affected by a medical diagnostic error each year. Exactly how many is difficult to determine.
“There isn’t a single health care organization in the country that’s measuring their diagnostic performance,” said Dr. Mark Graber, chief medical officer of the Society to Improve Diagnosis in Medicine.
A 2014 study published in the medical journal BMJ Quality & Safety found at least one in 20 U.S. adults will experience a diagnostic error each year. Many of those errors are trivial, Graber said, though an estimated 40,000 to 80,000 deaths are linked to diagnostic error annually. Beyond the consequences to a patient’s health, a misdiagnosis can also mean wasted money on unnecessary tests and treatments.
At the core of the issue is that diagnosis is complicated work and prone to human error.
“There are over 10,000 diseases, but only 200 symptoms,” Graber said. “So when you come in with a given symptom there’s on average 50 different things it could be.”
Doctors, with the help of modern tests, make the correct diagnosis in the vast majority of cases, but Graber said there is room to do better. The Society to Improve Diagnosis in Medicine was formed in 2011 to support education and research in the field and encourage efforts to address the problem by doctors, patients and health care organizations.
The nonprofit organization provides patient resources and a toolkit to help prepare for a doctor appointment at www.improvediagnosis.org.
No simple solution
Dr. Andrew Olson is an assistant professor of medicine and pediatrics at the University of Minnesota Medical School, as well as co-chair of the education committee at the Society to Improve Diagnosis in Medicine. He said one of the best strategies to improve diagnostic reasoning is to identify cases when diagnosis has gone wrong and to learn from them.
The reality, however, is that many medical schools don’t have courses focused on the diagnostic process.
Medical schools are starting to come around to the importance of diagnosis education, but surveys show more attention is needed, Olson said. At the U of M, for instance, he leads a class on diagnosis that teaches medical students through real-world cases.
Another important lesson for doctors is working with patients and engaging them in the diagnostic process, Olson added.
Finding a solution to diagnostic error will take collaboration among patients, family members and a range of health care workers, according to a 2015 report, “Improving Diagnosis in Health Care,” from the Institute of Medicine of the National Academies of Sciences, Engineering and Medicine.
The report identifies steps to reduce errors, such as:
Develop organizational cultures in health care that support discussion and feedback.
Recognize the importance of radiologists and pathologists as part of a diagnostic team.
Develop monitoring to identify and learn from mistakes.
Minnesota is one of several states with a law that requires hospitals and outpatient surgical centers to report medical errors. However, the list of 29 reportable “adverse health events” does not include diagnostic error.
Hospital associations in Wisconsin and Minnesota also run voluntary reporting programs to monitor hospital quality — including patient surveys pertaining to timeliness of care and communication by doctors and nurses — but there are no measures specific to diagnosis.
It started for Drummond around two years ago with a change in her bowel movements. She was on antidepressants at the time after her son, Jeffery Fauber, died by suicide. Drummond, a longtime nurse, said she knew to look up the side effects — which included diarrhea. She went to her doctor, but chose to stay on the medication. Then she said she started to feel fatigued.
This time it was suggested her diet was to blame. But as the weeks went on, she said she grew weaker and her abdomen became distended and painful. “Each time I would go in I would tell my doctor something’s not right. There’s just something, I can’t pinpoint it.”
She eventually had a colonoscopy that found microscopic colitis, or inflamation. Medication seemed to help, but Drummond said the pain would soon return. After the latest flare up, her daughter, Melissa Fauber, took Drummond to the emergency room.
A series of tests were ordered and, for the first time, a scan of Drummond’s abdomen. That’s when she said a tearful doctor pulled up a chair next to her bed.
“She took my hand and said, ‘Lisa, I hate to tell you this ... your abdomen is full of cancer.’”
Drummond was transported to a hospital in the Twin Cities where she said she surprised staff with her positive attitude.
Drummond said she has made peace with her previous doctors and has no ill will toward them. More than anything, she said she was relieved to know what was causing her all that pain.
“I’m glad I know what I have now,” she said, “and I can make a plan and we can deal with it.”
Family has been a source of comfort for Drummond post-diagnosis. Her support network includes daughter Melissa and son Allen Fauber, friend Shelley Barr, as well as extended family and grandchildren Starr, McKenna, Julian, Jaxson, Zakary and Alby. But Drummond said she wished she had brought in an ally sooner to advocate for her during the diagnostic process.
A friend or family member can be a helpful resource when facing a health problem. For complex medical issues or if geography separates a patient from their loved ones, that’s when a professional patient advocate can step in.
“Especially when its complicated or you really feel like you need someone to explain the processes to you, it's always a good idea to have somebody in your corner,” said Jill Fitzpatrick, who runs a patient advocate business in Minnesota.
Patient advocates offer a variety of services, from accompanying patients to appointments to helping navigate health insurance and billing woes.
Fitzpatrick said she takes a collegial approach when seeing a doctor that is respectful, yet firm: “I’m educated about me, you’re educated about medicine. Let’s work together to see that I have a positive outcome.”
Another tip if patients feel they aren’t being heard by their care provider is to look for a membership services phone number on their insurance card to inquire about seeing another provider in their network, she said.
Drummond said she doesn’t want to scare anyone into mistrusting doctors and to let people know there’s no shame in seeking a second opinion. She said she regrets not seeking one sooner.
“And your doctor shouldn’t be offended,” she added. “If they are offended, they’re probably not the right doctor for you.”