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TOPIC: Article about over-treatment

Article about over-treatment 2 years 5 months ago #60189

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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The PDSA posted this on their Facebook page and I couldn't agree more. Second opinions are very important and patients have to advocate for themselves. Over-treating can be more harmful than a watch and wait approach or taking a less aggressive stance.


MEDIGO, a global digital health company headquartered in Berlin, Germany, recently surveyed 1,500 Americans to ask if they had been over-treated by their doctor and had this confirmed by another physician, and almost 10 per cent answered that they had.

The company said that the cost and resources crisis in healthcare is magnified by the over-treatment and over-diagnosis of patients, resulting in wasted resources and patient harm.

“When an industry is delivering between 15 to 30 per cent of all its services unnecessarily, it’s extremely inefficient, very costly, and – in the case of the healthcare sector – it's harmful to people,” commented Dr Marty Makary, surgeon at Johns Hopkins Hospital and MEDIGO advisor. “We are throwing a lot of money into healthcare without getting better outcomes out of it. This is a frustrating issue for patients and businesses that have to pay for healthcare.”

Dr Makary also said that, in some instances, people are being harmed not from the illnesses that lead them to seek care, but from the care they receive. “This is what we call iatrogenic harm, and it can be tragic,” he stated. “In some specialties in medicine, over-treatment has become endemic.”

According to Dr Makary, patients can be part of the solution by asking doctors the right questions about their treatment and making informed decisions, which includes getting a medical second opinion. Dr Makary also said that when patients are more educated about their healthcare, they become highly powerful consumers that can participate in shared decision-making with their doctor about their treatment options.

www.ihmt.global/story/356
The following user(s) said Thank You: poseymint, mrsb04

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Article about over-treatment 2 years 5 months ago #60191

  • mrsb04
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  • Diagnosed in 2014. I'm a retired renal specialist nurse
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Good post Sandi.
Over here in the UK at the start of 21st century a programme called the Expert Patient was initiated, nurses saw it as a revolution whilst the medics were not so sure. One of the most important aspects of nursing is educating and empowering their patients. Unfortunately despite such initiatives as the EP programme many still are of the opinion that doctors know best and blindly accept whatever they are told, despite our best efforts. And of course there are still doctors who are convinced they know best,

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Article about over-treatment 2 years 5 months ago #60192

  • MommaBear
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So glad you posted this Sandi. Yes, every patient has to be their own advocate. You need to educate yourself and if you don't feel comfortable with something, SPEAK UP!

When I was first diagnosed with ITP at 16, my mother decided to take me to who she thought was rated the "best hemo" for ITP. Well he almost killed me! My 5'1 frame and 130 pound body could not handle the 100 mg dose of Prednisone he put me on. I cannot tell you how many side effects I had...gained 20 pounds literally overnight (blew up like a balloon), had severe migraines for which he offered me nothing but Tylenol (I threatened to commit suicide because there was no relief), suffered from high blood sugar (for which he blamed me), dizziness, panic attacks, tremors, Interstitial Cystitis, terrible insomnia, etc. I even developed Shingles from the Prednisone. The times I was hospitalized for a low platelet count, he wouldn't even let me go home until my platelets were over 100,000. I wasn't allowed to shower, drive or do anything. I eventually developed supra ventricular tachycardia because my heart could not handle the dose of Prednisone! I was taken to the hospital by ambulance for an SVT episode and he told my mother I just had a panic attack! He always said my symptoms were anxiety and basically labeled me a hypochondriac. He had zero compassion and dismissed my every complaint. I finally had a splenectomy and after I came out of recovery, had an episode of SVT, most likely from the combination of Solumedrol and Prednisone they gave me before surgery. They tried everything to slow my heart rate and nothing was working, They finally told my mother that if my heart rate did not slow down, I would die because my heart could not sustain that rate much longer. I slept through much of the episode...so it could not be a panic attack! By the grace of God, my heart rate slowed after being given 3 or 4 different heart drugs and I did not die!

When the doctor tapered me off the Prednisone, he did it so quickly, I developed IBS, joint pain, severe panic attacks, etc. I continued to suffer from the affects on my heart for years. No one ever thought any of my symptoms were related to side effects! My mother took me from doctor to doctor trying to treat all of the symptoms I had. I look back now and I realize, my symptoms were nothing but side effects of the high dose of Prednisone and Solumedrol he gave me. It harmed my body. As soon as I turned 18, I immediately switched doctors and told my mother as an adult, I would decide who I went to. (I was done with Dr. Doom!) At the time, she was one of those people who thought that the doctor always knew best and questioned nothing! Now she knows better. My father who has had bypass surgery has had a similar experience with a particular heart drug. I am amazed at how many doctors just dismiss their patients. They refuse to believe drugs can cause side effects or even damage. I can't tell you how many doctors have told me that you can't believe anything that you read on the internet! They would do well to search the internet themselves instead of believing what some drug manufacturer or medical journal says. How about a consensus of patients who have the disease and have been through the treatments?

I have had 4 different hemos since leaving Dr. Doom (it's been 30 years) and I haven't met one who didn't think that was a mega dose of Prednisone. One doctor even commented "holy s*** that's a huge dose of Prednisone."

My advice to anyone who is just beginning this journey with ITP or any other disease: do your research, listen to your instincts and question everything. If you have a doctor who becomes offended when you ask questions, FIND ANOTHER DOCTOR! Never hesitate to get a second or third opinion. You are in charge of your own body. You have to live with your choices and the side effects, even the ones that come down the road, not the doctor treating you! What works for one does not always work for another. You may need a smaller dose or different medication. There are many options. And, there are so many new drugs, they don't know the long term effects yet. You are nothing but their guinea pig. Find someone who will listen, and if at all possible, take someone with you to your appointments so you have a second set of ears! If you can't, then take notes!

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Article about over-treatment 2 years 5 months ago #60204

  • poseymint
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Yes, over-treatment is a big problem with ITP! Good to get the word out. Sorry you had to go through that, Mommabear. wow What a terrible doctor- but sadly there are a lot of doctors who don't know what they are doing! or they don't care, too busy. We must take our health, healing into our own hands, and that means second opinions. I am on my third hematologist and he is the best. So glad I left my first one. I was afraid to leave him, afraid he would get angry- hahaha I have come a long way since then! I have had many medical people angry at me since then- nurses angry when I refused platelet transfusion. Doctor angry when I refused splenectomy. Even the cancer clinic pharmacist was angry when I refused to be over-dosed on Nplate- she measured the wrong dose and didn't want to waste it. (?!)

I have heard of a woman with ITP who was killed from over-treatment and it was just really senseless. She was given steroids, Rituxin, and had a splenectomy within a few weeks. Nothing was working so they gave her strong immune suppressants- cyclosporine I think. She was in the hospital through all this- one month, caught pneumonia and died. Her immune system was so suppressed, there was nothing the doctors could do to save her.
Its the patient's responsibility to be educated but its hard when the doctor acts like its a crisis. Great we have forums like PDSA, I've learned so much here.

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Article about over-treatment 2 years 5 months ago #60217

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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The main thing is, you have to balance benefit vs risk. There are risks on both ends...risk of bleeding and risk of treatments. But there are sensible ways to go about it all and an informed patient is much better off than an uninformed one. Some doctors are put off by patients with knowledge, but honestly, some doctors are just not up to speed with ITP. My Hemo wasn't and he admitted it, but in time he was willing to learn from the information that I gave him.

Making treatment decisions can be hard but if you do your research and know the risks, you can make better decisions.

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