A few months back, I was fortunate enough to spend a few hours speaking with health data activist Regina Holliday. Regina has a long and complex story but, to sum it up, her husband Fred was diagnosed with and eventually succumbed to metastatic cancer in a matter of months. During his illness, Regina had a heck of a time trying to get Fred’s health data including his medical records. I remember asking her why she thought healthcare providers were so opposed to giving over important information that patients have a right to by law. She said: “Because the records are full of errors.”
Honestly, I was a bit taken a back. As a nurse I pride myself on not making errors; or at least owning up to and correcting them if I do. And I had always been told it was OK for a patient to have his or her records, but a physician needed to be present to review and explain the records to the patient. After all, patients might not understand medical jargon and may need a professional to explain certain things.
I wasn’t totally sold on Regina’s idea at the time probably because as a healthcare professional you want to feel like you are doing the best for your patient. You don’t want to make errors. You want to explain medical records so there’s no misunderstanding—like the legendary story of a particularly cranky patient whose family became upset when they read, “Patient SOB,” in the chart. One of the family members approached a nurse and said, “We know he’s not very nice but did you have to write that?” Yes, he may have been a SOB but he was also SOB, i.e., short of breath.
I truly believed these types of incidents were the reasons we were so hesitant to hand over medical data to patients. We’re in healthcare to help, not harm. There couldn’t be that many mistakes lurking in a medical record to cause the entire profession to be afraid to give a patient his or her own information, right?
Sadly, Regina’s assessment of medical records being filled with errors was right on the money and recently I got to see this firsthand during a family member’s illness. I’m leaving out some of the details at the request of my family but you’ll very quickly see that Regina is right—health errors are everywhere and often right there for you to see.
It has been almost two years since my loved one noticed something wasn’t quite right health wise. It didn’t seem like anything major, just something was a bit off. We fair people sometimes develop funny colored freckles that change in size but are completely benign. The sun just does that to us. I guess it’s a hazard of not having been born a vampire.
So, in a family filled with nurses, you do what they tell you to do: Go get it checked out or quit complaining. You see the PA who tells you she can only do a simple shave biopsy to which you agree. Great news, the PA and her pathologist says the biopsy shows it’s just scar tissue. However, she isn’t comfortable dealing with your issue and removing the harmless little scar in the office.
What’s the big deal? Isn’t it just a scar? The PA tells you need an expensive specialized surgery with a very specific surgeon. For a little teeny scar? It’s seems to be an off-the-cuff suggestion by a PA who did not discuss the case with her supervising physician because the doctor was out on maternity leave. And, truthfully, this practice’s specialty seems to be more focused on injecting wealthy suburban women with botox and collagen rather than dealing with less glamorous and more icky things like scars, pimples or moles.
As insurance would have it, or actually wouldn’t have it, the surgery with the recommended surgeon would not be covered. So what does a family of nurses do? We get a second opinion. And what happens at the second opinion? The new doctor laughs in your face when he finds out that the expensive surgery had even been suggested. He removes the pimple right there in the office that very day. All’s well that ends well. It’s “just” scar. All the medical providers have said it’s probably no big deal. In fact that’s what the second pathology report said as what the second dermatologist reported to us. Nothing more than scar tissue. You and your gaggle of nurse relatives can be on your merry way and live your lives without worry.
Now enter massive errors. Actually the errors had been there all along, we just ended up in a position where we saw them with our own eyes.
One year later a swollen lymph node living in the same area of the “scar” had previously caught the attention of a primary care physician who had the good judgement to refer out to an ENT to rule out potential lymphoma. A biopsy was done and lymph node removal was done. What did it find? Great news, no lymphoma! But you’re not out of the woods because it’s something…but we don’t know what.
You remind the ENT that four other providers, a PA, a dermatologist and two pathologists had said it was just a scar a year ago. The ENT explained that the third pathologist to be involved in the case had a gut feeling something was up with this scar. It had migrated to the lymph node. It didn’t look unusual but harmless scars and pimples don’t usually take over lymph nodes.
So instead of just shrugging it off and using the now standard “looks like scar tissue to me” excuse, we got “Get us copies of all your records related to this for the past year. And sign this HIPPA waver.”
Off the slides and records went to a large teaching hospital. And as a bonus we got a copy of the records, too. I know most people find HIPPA irritating, but it got us the records we needed so if it was a person I would have given it a kiss. After reading the reports I felt like calling Regina Holliday and telling her how right–how unfortunately right–she was…errors are all over those medical records.
On a report from the second pathologist and dermatologist there is, for lack of a better word, a headline that says the growth was just scar tissue. But then I read two paragraphs down and saw a note from the second pathologist that the scar/pimple was suspicious for possible melanoma and there should be more follow-up with the patient. The words spindle cell melanoma popped out at me. But we were told there was nothing wrong by the dermatologist! Just a scar, be on your way patient. When I read it I thought differently. I thought, “You ignored something in a report that clearly states trouble could be brewing.”
The big teaching hospital gets back to the third pathologist and ENT. It’s not a scar, not a pimple. It was trouble—melanoma. Outwardly I tried to stay calm. Inwardly I thought, “Oh, sh*t.”
Melanoma treatments have improved in the past five years but in my mind melanoma equals death. I saw it kill a young pregnant woman who developed a brain tumor because the pregnancy hormones caused a little speck of melanoma that no one knew she had to grow into a giant brain tumor. I saw it kill my healthy, 30-something, marathon-running, mission-trip-going friend in just three months after it invaded her spine. It killed a dear family member who was one of the sweetest loving child care providers that I knew. You don’t usually hear, “They had melanoma but they’re doing great. It hasn’t come back for 30 years.”
The only exception to my melanoma equals death view is John McCain. He is a melanoma survivor. And even though I have more than once had the words granola, crunchy, liberal and hippie thrown at me, I have to say that McCain is likely tougher than the average bear. The man survived a POW camp AND Sarah Palin. He was an inspiration when it came to battling melanoma but not the norm.
It turned out in our case the melanoma cells were the exact same type of cells present in the first two pathology reports. In the second report, the cells were deemed suspicious and in need of follow-up in the second paragraph. This exact melanoma had indeed been noticed almost a year ago. And nothing had been done.
So we went on a trip to a renowned melanoma oncologist. The beauty of living in a place like Chicago is you can find respected medical experts 30 minutes away. In addition to the oncologist’s knowledge, I really admired his honesty: “Spindle cell melanoma often gets over looked because it can mimic scar tissue,” he said. “However, this is not an excuse. Quite a few people dropped the ball on this one.”
Fortunately, after a visit with him we were reassured. Unlike your standard melanoma, spindle cell is very slow growing, and though it can reoccur it usually stays local. Plus, the ENT and pathologist number three had the good sense to just remove the suspicious lymph node while they were doing the biopsy. A PET scan showed no signs of cancer in any part of the body. The ENT did a prophylactic removal of 11 lymph nodes and all were cancer free according to the third pathologist.
Just like Regina had told me there were errors abound. Some were written down. Some were just obvious bad practice right in your face. But I’m not here to complain about the situation. Complaining does not generate solutions. Instead I’d like to pose a question and get your thoughts.
Who needs to accept responsibility here?
A few weeks ago, our newest blogger, John Dzviak, wrote a thought-provoking post “Patient Generated Health Data: With Great Power Comes Great Responsibility.” Here’s a snippet from his post regarding the proposed rule in stage 3 of meaningful use that allows patient-generated health data to be included in medical records:
Because if this becomes a final rule, for the first time patients would be recognized as active members of their care team. This rule would incentivize the incorporation of documentation generated and controlled by the patient, into their Electronic Medical Record, residing side-by-side with Clinically Generated Health Data (CGHD), comprising what you and I have known up until this point as PHI. This recognition would give patients status in their care.
Do you think that this new method of documentation would have changed the outcomes in my family’s case? Perhaps in Regina’s case she would have been able to prevent medication errors by entering her own list of her husband’s medication. In my family’s case there would have been nothing we could have changed. We were repeatedly told there was nothing wrong. Are we supposed to upload into a chart, “Drs say nothing is wrong. We think something is wrong.”?
Now if we had had access to the medical records that said, “Growth is scar tissue but it could also be spindle cell melanoma. Follow-up with patient,” maybe then we would have had a fighting chance and could have asked for more explanation. However, not all physicians are very receptive to questions about their medical knowledge. Regina can tell you this first hand. She asked questions and even met with her husband’s physician. What happened? She was labeled “Little Miss Type-A Personality.”
I’m not saying patients should be off the hook when it comes to being engaged and participatory in their health. Diabetics would greatly benefit from logging their daily blood sugars and A1C levels. It could help their physicians better manage hypoglycemic medication and insulin dosages. But we also must remember that not all patients have at least six nurses or medical providers in their family. They might not understand that the words “spindle cell melanoma” is something they need to follow-up or push back on.
And while we try to use data and EBP to make health decisions, sometimes your gut or intuition can overrule something. If that third pathologist had gone simply by what previous reports said and not by the funny feeling in his gut that said, “Something is not right. I don’t know what, but it is something,” our outcome could have been much different.
Because this man was bothered, he took the time to be bothered to send out information for more guidance. He bothered to take action and because of this he probably saved a life.
The first providers who completely and totally missed that this was a melanoma? The second doctor and pathologist who appeared to know it was cancer and chose to do nothing? They weren’t bothered to do anything.
So is this the patient’s fault? Should a patient without medical knowledge be expected to be more aggressive with their healthcare providers?
We claim we want more engaged patients but how is a patient supposed to engage when the healthcare providers are totally and completely wrong or just don’t seem to care about what is going on? Can even an uber-engaged patient say, “Sorry doc. I think there’s more to this than scar tissue. Please find a different pathologist.” How is a patient supposed to know what is going on when four providers couldn’t get the diagnosis right?
Just because they are engaged and concerned it does not mean it is the patient’s responsibility to correctly diagnose themselves. Shouldn’t they be able to trust in the people with at least 12 years of education to get things right? I mean, I trust the guy at White Castle to get my order of onion rings right, and they have never once failed me. So, instead, we need patients to drive themselves up the wall in a state of panic trying to diagnose themselves on the Internet? In addition, they are supposed to make sure all the facts, dates, and diagnoses are correct in their medical record? In our case, professionals couldn’t even get it right.
If physicians can’t get things right how can we place the responsibility for recording data on the shoulders of the patients? How can we expect them to know what info is essential to record and what info can go in one ear and out the other?
The answer quite simply is that taking care of patients takes a village. Patients must be interested and eager to attend PT, lose weight or take medication correctly. That is their duty. Healthcare providers, on the other hand, must be knowledgeable enough to come to correct diagnoses and provide correct care instructions. It takes two to tango. For example, physicians must properly monitior A1C levels but patients must follow a healthy and diabetes-friendly diet.
And most importantly, both health care providers and patients must be bothered enough about their health to take care of it.
When one of our family members finally had the chance to speak with and thank pathologist number three, what he said touched my heart: “Nothing looked strange and those other reports said everything was fine. But I kept thinking, ‘No! Scar tissue doesn’t invade an lymph node.’ It bothered me. It really bothered me, and the more I thought about it the more it bothered me and the more I thought we needed to send it out.”
All I can say is, Doctor, thank you so much for being bothered to be bothered. You have given our family a gift.
Jennifer Thew, RN, MSJ
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