When A Missed Diagnosis Creates Mistrust

Oh man, I didn’t want to write this blog today. Someone I know reasonably well recently was diagnosed with cancer. The woman mentioned that she had been to several different doctors, and none of them could determine what was making her sick until it was too late. She now fights stage 4 pancreatic cancer. It was like déjà vu dealing with my dad all over again. I could feel my heart come out of my chest with sadness for her. Her family faces losing her, and she’s making final preparations while still here.

Unfortunately, healthcare has lots of these stories. Thanks to the insurance companies and their greed, many doctors cannot order the proper tests to find out what’s going on with the patient because insurance won’t cover them. There’s a lot of things that could discover if the proper tests were allowed. Had my dad’s doctor not been interested in picking up his sports car and evaluating my father correctly, we would have known that he had a stage 4 brain tumor. It might not have changed the fact he was dying from cancer, but it definitely would have changed how we gave him his quality of life.

I’ve always heard that knowledge is power. In many cases, I do believe this to be true. However, there are cases where ignorance has been Bliss. For instance, if we didn’t know that my father had a stage four brain tumor instead of Parkinson’s, then, my father would have probably worried himself to death. I knew something wasn’t right with dad when he could barely move. He was slow-moving, and his reflexes had gotten very slow. He lost his voice which we thought he had permanent laryngitis and had no clue that it was cancer that stripped him of the ability to be heard. There were a lot of red flags along the way that we should have noticed. We did notice a few and thought we were getting the correct diagnosis for it, but we found out that even after multiple doctors evaluated him, they were still very wrong.

My Grandmother died of a broken hip. I don’t talk about that much. You see, all of the doctors couldn’t find what was going on with her, or rather they wouldn’t find why she was hurting. She had fallen at the local Masonic home, and everyone thought that she was making a mountain out of a molehill. We were all wrong. She could barely function, and it was only later when we found out she broke her hip. The agony she felt and tried to convey to all of us made every one of us in the family feel like crap. When she died, the funeral home that performed the funeral services infuriated me. They were about as professional as Daffy Duck. They would have made a great comedy hour routine. Except it wasn’t amusing at the time, and it still isn’t.

When something is physically wrong, you may tend to get checked out. After all, healthcare is supposed to give us answers. For a very long time, I was undiagnosed with ADHD. Then when I went to college, I had a professor who suggested I get tested. Sure enough, I had ADHD. But, I grew up in a time where ADHD wasn’t much of an issue. In the late seventies and early eighties, it wasn’t something that the doctors even thought was a possibility for me. I couldn’t focus well and had memorized my way through most of my elementary school, but everyone thought I was lazy when I got to junior high. They had no idea that the inability to focus stemmed from ADHD. I guess you could say that when I finally received my diagnosis and got treatment, I began to flourish. But it took a lot of hard knocks to get me there. I know I’m stubborn, but geez, I would have thought someone would have picked up on the symptoms before then.

And then there is another acquaintance of mine fighting breast cancer. The first few times she went to the doctor about a lump in her breast, the clinic assured her that the Mammogram did not find anything abnormal. I guess her lump decided to get bigger before they realized it was a stage four tumor. I recognize that mistakes happen, but this is supposed to be something modern medicine should pick up on. As many commercials and speakers are out there about breast cancer, you would think that the doctors or technicians would have caught her cancer before it became that serious. The sad thing is that the healthcare system she sought treatment for has a reputation for not being a good institution. For legalities sake, I won’t name them. But make no mistake, if I meet people locally who ask me about them, I will have no trouble warning them away from their hospital system.

I understand that doctors, nurses, technicians, and other healthcare workers are overworked and overwhelmed. I don’t know why the insurance fields refuse to cover tests that could save people’s lives. Yes, it costs money, but the more people that die can also equate to more money lost in the long run. Maybe that’s why more people go to doctors who don’t take insurance but have a higher pay upfront cost. For example, some doctors have gone into private practice that even though a person pays a high fee to see them, that fee usually covers a year. Those doctors listen to the patient and try to find out the actual problem in that year without blowing off a patient’s concern. I know of at least two internal medicine doctors between Hilton Head, SC, and Virginia that do this. They have much respect in their fields, and their success rate is impressive. The physician in Hilton Head is the one who discovered dad’s cancer. Through him, we got answers, and for that, I will forever be grateful to him. He got into medicine because of his mother and another family member. He worked in the traditional healthcare system and became infuriated with insurance companies after losing patients who might have survived with the proper tests.

To the insurance companies, I say this. All they care about is money. They could care less about the people that they are insuring. Many doctors and healthcare professionals went into their fields because they genuinely care about the patients and making a difference. Some of them don’t. There will always be people who are in it for the money and power, and they will find ways to consistently reach the top and not care who they hurt along the way. Karma will be a bitch for them someday. But to the number of people in it for the right reasons please know we thank you. Doctors and insurance companies who don’t care about their patients make people less trusting. When there are groups who are willing to own up to their mistakes, be there for the patient, and do everything in their power to save lives, that’s powerful.

It meant everything to me and my mom when the doctor who referred dad to a friend that misdiagnosed him owned up to his error. No one is perfect. What matters is that the systems that are constantly misdiagnosing people find ways to change the system. Saving lives should be a healthcare system’s top priority. Money and people go hand in hand, and when people start dying off in droves, the funds will eventually drop off. If you suspect you face a misdiagnosis, I urge you to get multiple opinions. Please don’t take one doctor’s word for it. Have tests run, and if you can’t afford those tests, see if there are options available. Our health is up to us. It’s our bodies. Pay attention to yours. You know when something isn’t right. You are the best advocate for you, and if you have a loved one that is sick and can’t get answers, please step up and be their advocate. They might not have the energy or education to fight back.

Our healthcare system has many problems, but so many good people are working in them. Most of them are sick to their stomach with the stipulations that insurance companies and politics put upon them. Arm yourself with knowledge and enough courage to stand up for yourself and others. Who knows. You might save a life, perhaps even your own. Have a great day, everyone.

2 thoughts on “When A Missed Diagnosis Creates Mistrust

  1. OMG, this made me shed a tear, because this is exactly what happened to my father-in-law. He was just getting sick and going from bad to worst and no doctor could tell him what was going on until it was way to late – stage 4 pancreatic cancer. He fought and fought, but before you knew it, he was gone. So sorry to hear about your friend as well. The entire health system and insurance is so confusing to navigate. I often times ask the questions of what’s the point of having health insurance when they are selective with their coverage and you have to come out of pocket with the bulk of the money? Makes no sense.

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  2. I hate that it happened to your father-in-law. It angers me so much because insurance and politics suck!!!!! There’s nothing like losing loved ones when it could have possibly been prevented. In my friend’s case, she was losing weight so fast and knew something was very wrong. Little did anyone suspect it was cancer. I hope things greatly improve over the next few years but to be honest, I’m very scared about the direction we’re going in healthcare.

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