When Evidence Says No, but Doctors Say Yes

[jj]

Where online can you find rational discussion of the peer-reviewed options on care that is evidence-based?

Even on the Rightcare Alliance site there are no links.

 

[audreyh1]

Where online can you find rational discussion of the peer-reviewed options on care that is evidence-based?

Even on the Rightcare Alliance site there are no links.

It’s all spread out on the internet and takes a lot of combing through, plus for some diseases a book or two may be worth reading.

 

[jj]

It’s all spread out on the internet and takes a lot of combing through, plus for some diseases a book or two may be worth reading.

That's what is suspected. So, how on earth does one, when faced with an emotionally devastating diagnosis, sift through all this to work out if the doctor they're seeing is giving them the best advice?

My reaction is to keep away from doctors as much as is humanly possible, and that may not always be best...

 

[MRG]

Yes, doctors want to treat symptoms. They rarely ask the patient to change diet or behavior or lose weight. I once had high cholesterol, and my physician wanted to put me on cholesterol meds. I asked him if I should instead change my diet, lose weight, and exercise more. He seemed surprised, but said yes, I should try it! I did, and my cholesterol was lowered to the normal range. All without the side effects of meds!

+1

Good point. One thing that I didn't realize is how little education doctors get on nutrition and diet. Pitiful.

 

[mountainsoft]

Especially in post-menopausal women, since we're no longer baby machines. "Hey, you won't even miss it, right?" Well, from what I've read, that's bogus and women do "miss it."

My wife had a hysterectomy a few years ago after enduring painful fibroids and bleeding for years. Her doctor said they were leaving the ovaries in place so there would be no outward changes. My wife was happy to be rid of the pain, but within a few months her libido dropped to zero and hasn't returned. Vaginal and urinary issues have also been more frequent.

Of course, it's hard to say whether the issues are due to the hysterectomy or just normal menopause and aging. It just seemed odd the issues would suddenly appear so closely after the hysterectomy.

 

[braumeister]

When a doctor is quickly dismissive of your concerns or your wishes to review alternatives, and has a “just do as I say” attitude, it’s time to talk to another doctor or two before taking a big step. You are the one who has to live with the outcome.

Yes, this can really be a conundrum. As an example, both my current and previous doctor were (and are) on statins and wanted my to do likewise, but both were willing to listen to me and respect my decision not to use one. So I can respect them in return.

OTOH, my mother's last doctor saw an elevated BP in the office because she had white coat syndrome, and insisted she go on permanent medication for it. Every time I had taken Mom's BP at her home it was normal, but the doc just waved me away when I tried to explain. The result was that her BP went too low and led to a couple of nasty falls that required hospitalization. So there's a case where if she had disregarded the professional she would have been better off.

 

[Scratchy]

Where online can you find rational discussion of the peer-reviewed options on care that is evidence-based?

Even on the Rightcare Alliance site there are no links.

As a physician I use the website "uptodate". In my opinion this is the best website to start a search for the most current evidence based information on any given topic in medicine. Topics are continually updated by experts in the field and when a recommendation is given, the evidence upon which it is based is cited and quality of the evidence rated. It is a fantastic resource.

The website provides quite a bit of information for free. Glancing at the non-subscription content, it seems quite good. For more detailed information, which is what most clinicians would use, unfortunately a paid subscription is necessary. It seems there are very short term subscriptions available (1 week for $20). In that time, one could download articles on all the topics of interest to them and that would seem to me to be a good bargain considering the quality of information you would receive.

 

[6miths]

Where online can you find rational discussion of the peer-reviewed options on care that is evidence-based?

Even on the Rightcare Alliance site there are no links.

Uptodate was mentioned but it is very heavy and detailed even for some MDs. It is about as good as it gets as far as evidence based general reference for MDs although it is not nearly as evidence based as some might like.

For the general population the website NNT was mentioned and has been posted before. As well, doing a search with what you are interested in and adding the word 'Cochrane' may bring some helpful evidence based information. The Cochrane Collaboration has it's origins in the 80's in the UK, Canada and the Netherlands. I have linked the statin for primary prevention of heart disease review as an example. Finally, the US Preventive Services Task Force is the go to in the US for recommendations but covers limited topics. The best set of guidelines in the world are likely the NICE (National Institute for Health and Care Excellence) guidelines out of the UK. These have also been mentioned in the past. The Brits still have a way of pulling no punches when it comes to recommendations.

 

[sengsational]

...
As a physician I use the website "uptodate"
....

unfortunately a paid subscription is necessary.

....

Never used it, but thought I'd comment on this snippet.

Some free sites, like maybe some government funded sites, might have a wholesome agenda aligned with the health of the population. As for this site, I was thinking "I'm grateful that it's a "pay site"; if it weren't then I'd wonder who's motivated to offer the site and why. And just because it's a "pay site" doesn't mean it's good; it might be good, it might not be. The point I was trying to make is that any site that's "free" likely has an agenda that may not be obvious, and might not be aligned with the patient's best interests.

 

[Teacher Terry]

Thankfully my doctor discusses health issues and doesn’t get bent out of shape if I decline a medication.

 

[6miths]

Never used it, but thought I'd comment on this snippet.

Some free sites, like maybe some government funded sites, might have a wholesome agenda aligned with the health of the population. As for this site, I was thinking "I'm grateful that it's a "pay site"; if it weren't then I'd wonder who's motivated to offer the site and why. And just because it's a "pay site" doesn't mean it's good; it might be good, it might not be. The point I was trying to make is that any site that's "free" likely has an agenda that may not be obvious, and might not be aligned with the patient's best interests.

It's main agenda is to make money from MDs using it as a resource. It has taken the place of many medical textbooks which still generally cost $200-$500 per and are usually 3-5 years out of date when published and seem more likely to be influenced by the views of their authors. I can't imagine a subscription to uptodate would ever be worth it for a non-healthcare professional. My impression is that most MDs don't subscribe. Some may find that their local library or college/university has a subscription but even that is rare and it is hard to get around the pay wall. Students have told me that Iceland has a national subscription so some of them may find a way around that way if they are web savvy.

A benefit of Cochrane, NICE and USPSTF is that they often have patient directed summaries. Society and College specific (e.g. AHA, ACS, ACFP, etc) sites also offer similar summaries but historically seem more likely to be subject to biases from individuals or outside interests.

 

[joeea]

Well, I think it's implied even if the author didn't flat out say it. The two vignettes at the very beginning of the article kinda made it explicit. The executive who did his research (googling on his phone in the ER) lived while the other who blindly followed his doctors' recommendations sadly didn't.

Google is fun. Maybe that's what is meant by "research" these days?

 

[aja8888]

OTOH, my mother's last doctor saw an elevated BP in the office because she had white coat syndrome, and insisted she go on permanent medication for it. Every time I had taken Mom's BP at her home it was normal, but the doc just waved me away when I tried to explain. The result was that her BP went too low and led to a couple of nasty falls that required hospitalization. So there's a case where if she had disregarded the professional she would have been better off.

Same thing happened to me 10 years ago (WC syndrome) and the doc put me on BP meds. Took them for 10 years and when I had SVT last Fall, my Cardiologist told me to get off the BP meds since my BP was low. Off for 10 months now and my daily BP is averaging 110/70 with pulse of 56 resting.

 

[audreyh1]

My wife had a hysterectomy a few years ago after enduring painful fibroids and bleeding for years. Her doctor said they were leaving the ovaries in place so there would be no outward changes. My wife was happy to be rid of the pain, but within a few months her libido dropped to zero and hasn't returned. Vaginal and urinary issues have also been more frequent.

Of course, it's hard to say whether the issues are due to the hysterectomy or just normal menopause and aging. It just seemed odd the issues would suddenly appear so closely after the hysterectomy.

From what I read, it’s not uncommon for ovaries to suddenly stop working after partial hysterectomy or other treatments of the uterus. This sounds too sudden and coincidental to be a normal menopause transition. 51 is the average age for menopause although I somehow made it to 57, and obviously for some women it occurs earlier. Hard to know for sure.

BTW - the treatment I used for fibroids was UFE uterine fibroid embolization which blocked the blood flow to the fibroids. It was done by a radiologist and did not involve cutting me open, so recovery was quite fast and mostly a couple of days of pain management. I had very large fibroids, they shrank quite a bit and eliminated my symptoms. But I still had an enlarged uterus until a couple of years after menopause by which time the uterus finally shrunk a lot more.

 

[kcowan]

My cardiologist declined to install a stent when my angiogram indicated 50% blockage. He said it was general build up and if it got to be over 90%, he would do a bypass. Similarly, he treated my sudden rapid regular heartbeat (90 versus 50 pulse) tachycardia with drugs rather than ablation.

He is also a research scientist part-time. I consider myself lucky.

 

[daylatedollarshort]

Where online can you find rational discussion of the peer-reviewed options on care that is evidence-based?

Even on the Rightcare Alliance site there are no links.

nutritionfacts.org. It is all evidence based, written by a doctor and nonprofit. The book versions are How Not to Die and the How Not to Die Cookbook. It is vegan promoting but you don't have to go full vegan to get the benefits from the site. The site recommends a plant based, whole foods diet similar to the one in the Blue Zone book. We've had some amazing health improvements between us so far after just a few months even though we probably only adhere to it 70 - 80% of the time.

 

[aja8888]

My cardiologist declined to install a stent when my angiogram indicated 50% blockage. He said it was general build up and if it got to be over 90%, he would do a bypass. Similarly, he treated my sudden rapid regular heartbeat (90 versus 50 pulse) tachycardia with drugs rather than ablation.

He is also a research scientist part-time. I consider myself lucky.

Just curious, but 90 HB does not appear to be that high. When my SVT showed up last Fall, I was recording 200+ HB.

Monitoring now with just walking, my HB is 90 - 100 with moderate effort.

Could be that we are all just a bit different.

 

[Scratchy]

Not sure if this has been posted, but thought it relevant.

https://getpocket.com/explore/item/when-evidence-says-no-but-doctors-say-yes

Very well written and interesting article which is noting among several things that

-Physicians often do not follow current evidence based guidelines
-Even the process by which medical science/evidence is published is subject to a host of confounding issues

I have no solutions to these problems but I wanted to offer my thoughts on what may improve the odds you will get good care, based on my experience as a health care provider and also as a patient and family member of patients:

-Try to get health coverage that preserves choices in providers-both doctors and hospitals. Favor regular Medicare over Medicare Advantage plans. Favor PPO's over HMO's.

-If you require surgery or have a complex medical condition, seek care or get a second opinion from a physician with a university based medical center. In my opinion, the clinicians at these centers are often more up to date and have less of a tendency to be influenced by factors not related to the patient's best interest.

-Be an informed patient. use websites like "uptodate" (my favorite) or as mentioned above by 6miths to learn about your disease and treatment options.

-If you or a loved one have a serious illness, be ready to do some hard work and recruit other family/friends to assist. It should not be the case, but there is a strong correlation between effort invested and quality of care received. I have been the primary person arranging medical care for several family members who were very ill and I don't think anything I have ever done was more high stakes, challenging and exhausting. Among other things, be ready to do battle with health insurance companies, research treatment options, health care facilities, health care providers, and spend hours arranging appointments, getting prescriptions, obtaining and delivering records.

-If you have a family member in the hospital, be there as much as possible, ideally around the clock. Keep a notebook in the room and keep it updated with information on what has happened and what is planned. As much as possible, double check everything being done-there is still no perfect system for preventing medical errors. Try to make sure everyone and everything that touches the patient has gloves or has been sanitized.

The above is of course all my opinion, very generalized and by no means applicable to every situation.

 

[Scratchy]

Never used it, but thought I'd comment on this snippet.

Some free sites, like maybe some government funded sites, might have a wholesome agenda aligned with the health of the population. As for this site, I was thinking "I'm grateful that it's a "pay site"; if it weren't then I'd wonder who's motivated to offer the site and why. And just because it's a "pay site" doesn't mean it's good; it might be good, it might not be. The point I was trying to make is that any site that's "free" likely has an agenda that may not be obvious, and might not be aligned with the patient's best interests.

Good thought. Sometimes you get what you pay for....

 

[braumeister]

Just curious, but 90 HB does not appear to be that high. When my SVT showed up last Fall, I was recording 200+ HB.

Monitoring now with just walking, my HB is 90 - 100 with moderate effort.

Could be that we are all just a bit different.

Keith is Canadian, so I think he must have meant 90 Celsius.

 

[Chuckanut]

The site recommends a plant based, whole foods diet similar to the one in the Blue Zone book. We've had some amazing health improvements between us so far after just a few months even though we probably only adhere to it 70 - 80% of the time.

FWIW, I was once told by a nutritionist that if a person adheres to a healthy diet 80% of the time, a 'bad' meal is not an issue. He pointed out that eating good food 20% of the time will not overwhelm the bad effects of the 80% junk food meals. It makes sense for the opposite to be true; 20% bad food will not overwhelm the benefits of the 80% good food. It's the constant ongoing consumption of poor quality food that is the issue. 80% means that for most of us we can have one 'bad' meal every other day. 90% still allows us two 'bad' meals a week. That's really not that tough, IMHO.



Obviously, allergies and certain trigger foods cause exceptions to the general rule above. We are all different. And, rather than start another interminable nutrition discussion, I will let us each decide what are the good and bad foods we eat.

 

[Chuckanut]

The site recommends a plant based, whole foods diet similar to the one in the Blue Zone book. We've had some amazing health improvements between us so far after just a few months even though we probably only adhere to it 70 - 80% of the time.

FWIW, the 80% rule works for me.

 

[braumeister]

FWIW, the 80% rule works for me.

When I began eating a LCHF diet a number of years ago I struggled with cravings until I got a great piece of advice from someone who was more experienced with it.

Every 6-10 days (no set schedule, just as I feel like it), I abandon my diet and have an "anything" day. Seems to work really well for me.

 

[daylatedollarshort]

FWIW, I was once told by a nutritionist that if a person adheres to a healthy diet 80% of the time, a 'bad' meal is not an issue. He pointed out that eating good food 20% of the time will not overwhelm the bad effects of the 80% junk food meals. It makes sense for the opposite to be true; 20% bad food will not overwhelm the benefits of the 80% good food. It's the constant ongoing consumption of poor quality food that is the issue. 80% means that for most of us we can have one 'bad' meal every other day. 90% still allows us two 'bad' meals a week. That's really not that tough, IMHO.

We went out with friends over the weekend to an expensive (for us) restaurant, and if I'm going to pay those kind of prices I'm not ordering a simple salad I could chuck together in 10 minutes at home. I think I ate my meat quota for the week in one sitting.

But I've lost weight without any effort (other than cooking healthier) or exercise and some scars I've had for a long time recently healed over, so I even with the 80% we're seeing the benefits.

 

[ls99]

It is not always the doctor's fault in prescribing marginally useful meds.
Pharma companies do hide negative info at times. Example: Tamiflu.
"
But the full clinical study reports from those trials were locked away. There wasn't even a list of what trials were conducted; Cochrane initially figured there were about 36 and sought to read them all. It began negotiating with the drugmaker, filing freedom of information requests to the FDA and the European Medicines Agency (EMA), Europe's FDA equivalent, and backing pressure campaigns in the media. At one point early on, Roche offered to give Cochrane 10 reports, but only if it signed a confidentiality agreement keeping everything secret—including the existence of the agreement. Cochrane refused to sign.
After five years, Roche and the EMA opened up (the FDA has not, and did not respond to requests, both from Cochrane and Newsweek, to explain why). What Cochrane uncovered was more than 70 Tamiflu trials and well over 100,000 pages of unpublished reports. Among them were many trials where the results were negative or inconclusive. With this more complete picture of the testing, Cochrane concluded the trials don't prove that Tamiflu prevents hospitalizations, contagiousness or complications. The only thing it definitely does do, Cochrane said, is shorten the duration of symptoms, by about a day."
https://www.newsweek.com/2014/11/21/medical-science-has-data-problem-284066.html