How do I convince my mother that the plural of anecdote is not data?

In My Humble Opinion
1

Back story: My wife was diagnosed with scleroderma four years ago. Sclerodermais an incurable, progressive, debilitating auto-immune disease that causes damage to the lungs, kidneys and digestive system, as well as causing the skin to become stiff and hard. Painful ulcers on the fingers are common due to poor circulation. The upshot is, even though she takes large amounts of pain-killers including fentanyl and hydrocodone, she still has breakthrough pain.

My mother loves her almost as much as I do, and she truly would do anything to relieve my wife’s pain. Mom was once a registered nurse, so she knows how medical science works.

However, she recently heard about a lady in her church that has scleroderma, and tried an alternative treatment known as the Antibiotic Protocol (AP). Within 1 month, her finger ulcers were gone, and with several months her disease had stabilized.

There is no scientific evidence that antibiotic therapy works, and a clinical study in 2004confirmed that. Yet AP is all over the scleroderma support websites, and many people are clamoring to try it, even though their doctors do not support it.

So I just got off the phone with Mom, and I vainly tried to explain that we had no way of knowing what caused her friends apparent remission, and without data, we don’t know how many others got no relief at all. Her reply was, “Why not just try it? What could it hurt?”

Why not indeed? Because my wife’s doctoris the the director of the scleroderma research center at Boston University Medical Center, and is a world renowned expert on this disease. He does not support this treatment, so we would have to leave him and find another doctor who supports a protocol with no scientific justification.

It seems foolhardy to abandon the best doctor we could hope to find on such flimsy anecdotal evidence, and go off on a wild goose chase pursuing a treatment with nothing but anecdotal evidence to support it.

But Mom became upset when I explained all this to her, and she hung up on me, and now we are both upset. I appreciate her caring, and I know she only wants the best for Mrs. Fear, but how can I get her to understand why we have to use reason to choose the doctor and the therapy for this illness, and not desperation and unwarranted faith in the anecdotal stories of strangers?

2

“What would it hurt?” is up to your doctor to decide. That’s all it takes. Doctor is an expert, you trust him, thanks mom, but no thanks.

It’s not necessary to explain minutae of the philosophy of knowledge to your mother, and is almost certainly a complete waste of time. IME, it’s one of those things that most people just don’t grok. Your mom’s trying to help, and you’re declining the offer. She’s going to take it personally, and there’s not much you can do outside of making very obvious, grand gestures that you love her. She’ll get over it.

eta: I go through this with my mom all the time, albeit with much more mundane issues, i.e. “I met a girl who graduated from your college 20 years ago and she studied something kinda similar to what you studied, you should call her.”

3

So what exactly are you saying.

You can’t have two doctors at once? Are you saying that if your “brilliant” doctor found out that your mother was seeking a second opinon he’d be offended and drop your mother as a patient? If so, I’d call him a jerk, not brilliant.

First it’s your mum’s life so if she wants to try you have to let her.

Second, find a doctor to treat her.

Third, if you’re “afraid” of your brilliant doctor, tell him your mother has decided to take a trip to Australia (or someplace) as she’s not long for this world. And that you’ll see a doctor to monitor her down there and you’ll be back with him in a few months or a year or whatever.

Get the treatment, when it doesn’t work then go back to “brilliant doctor” and you’re back to square one.

4

Consult with your doctor. See if you can have him put into simple, objective terms why antibiotic protocol will not work for your wife.

See, even though you, your wife, her doctor, and I all know that if the evidence isn’t there, AP doesn’t work. What your mom needs is something to latch onto that gives her a concrete excuse to release this particular hope. She doesn’t want to lose your wife, and she doesn’t want to see her suffer either, so she’s doing everything in her power to FIX it. Including getting all up in your face when it’s not your fault.

“Hey, Mom, I called wife’s doc and discussed the antibiotic protocol with him. He says she’s not an appropriate candidate because her velociraptor aversion levels are too low, which the antibiotics would aggravate and actually worsen the course of the disease. Turns out, she also has the wrong subset of smurf protein mutation distribution. And, on top of that, her glyph counter-demonstration makes it impossible to sequence the intestinal flora in a way that doesn’t recommit her vestibular orifice glands to overproduction of santorum. The doctor said it was really a shame, because when AP works, it works, but it just will not work for wife.”

I do hope your wife finds some relief with treatment or remission.

5

First off, you are confused about who the patient is. My wife has the illness, my mother is offering advice.

Second, I don’t know who you are quoting when you use terms in quotation marks like “brilliant doctor” and “afraid”. I never used those terms, so I can only conclude you were just being hyperbolic, which contributes little to answering my question.

No, that would be foolish to have two doctors treating the same disease with potentially conflicting protocols. I don’t care if he would drop us, I think it is a stupid thing to do. I choose a doctor based on his skill and reputation, and expect him to prescribe the treatment he thinks has the best liklihood of success. Choosing a doctor based on what treatment he will prescribe is bass-ackwards.

6

I was going to say something like what phouka said, with the addition that if your mother lives near you, maybe she could go with your mother to one of her appointments so the doctor could, if he’s willing, give her the straight dope in a non-dismissive way. Of course, if he’s a brusque person or if mom lives far away, that won’t work, but maybe doc would write something down specific to Mrs. Fear’s case like **phouka’**s example that would satisfy Mom Fear.

7

Why would your wife have to leave her current doctor to “just try it”? Is the antibiotic treatment harmful in any way?

8

You wouldn’t want to run two different therapies at the same time without both doctors being fully informed of what was going on, and I suspect that each physician would look very distrustfully on the other’s therapy, at minimum. The physician(s) may also tell the patient that they must not be on (other therapy) while on their recommended therapy, at the very least out of fear of bad drug interactions.

9

Also, I’m sure the antibiotic therapy costs money. Insurance companies are not fond of paying for treatment that has not been shown to be clinically effective.

10

Unfortunately I’ve become a bit of an expert at replying to those with best intentions around any medical treatments.

Along with CREST Scleroderma, I have MS, and at least two other autoimmune disorders (Hashimoto’s; Rhuematoid Arthritis). I don’t run in to a lot of people with Scleroderma and as I have only CREST - it’s not obvious and I don’t tell many about it.

However, anyone with MS will attest to the plethora of treatments (both science and cosmic) that show hope for treatment. From wild bark juices to untwisting my veins, everyone who loves me has a suggestion.

The best place to start is understanding (at it seems you do, Fear) the well-wisher’s motivation is a combination of love and fear. You have to (in my experience) address both of those conditions to have the other person really get it and then you are not on ‘opposite sides’ of anything.

If you acknowledge that your mother is understandably afraid and willing to try anything to help your beloved wife - but that you have the very best experts possible laying out the course of action - she will at least feel heard by you. I can imagine she feels frustrated as she has ‘proof’ of her friend’s response to the therapy and can’t understand why you’d be so obstinate.

I suggest you acknowledge how much she loves your wife and how you share her love and concern - leave the science out for the moment as this is an entirely understandable emotional response to things over which she has no control. Thank her for the information - and stay firm in saying that you’ll follow your doctor’s protocols.

Your wife is very lucky to have you and your mother’s love and support.

11

Plus from reading the linked page, it looks like they may want IV antibiotic treatments, plus followup blood labs, done weekly for even several years until they get the lab values they’re looking for. This is essentially telling the OP that they should incur insurance charges for non-approved therapies for years in the hopes that they will work. It’s one thing if the approved therapies don’t work or there aren’t any treatments that have even a chance of helping, but to get all grouchy because they don’t want to risk disrupting an approved treatment with something that will cost them a good amount of money and might well waste their time, well, that’s not very nice.