I like to communicate with my doctors by email.

Having spent a great deal of my career talking on the phone, the embracing of email in the work world has had a profound change in the way I do business.   Once upon a time, I might spend as much as two-thirds of the day on the phone.  Today, there’s an awful lot of time between phone calls.  Sometimes a whole workday goes by.

Anyway, it’s not always easy – sometimes it’s impossible – to get a doctor to agree to email communication.  When I asked my primary care physician for his email address, he got this deer-in-the-headlights look.  And he never did give it to me.

I can understand the terror that email communication can strike in doctors’ hearts.  I think they envision getting emails such as these:

Doc –

I just discovered I’m out of Viagra.  Could you call in a prescription asap?  I need it like NOW!

Dr.,

I haven’t been feeling well all day.  Been nauseous, out of breath – haven’t really been able to do anything.  Didn’t want to bother u, but now it’s the end of the day and I’m not better and I’m worried about going through the night like this.  Is there something u can give me?  Oh, and I have this terrific pain in my left arm and my chest feels like there’s an elephant sitting on it.

Doctor

I was just watching television and saw this ad for a drug that sounds wonderful for treating my condition.  Why aren’t you giving it to me?

I like to think that most of us patients are a bit more responsible, or that we know when something is happening that requires immediate attention and a phone call to the office.

Unfortunately, from things I’ve witnessed in medicine, both professionally and as a multiple myeloma patient, I know that isn’t quite so.

Recently, the Kaiser Health Foundation and the Washington Post called our alarmingly low levels of health literacy “one of the most pervasive and under-recognized problems in medicine.”  Too many of us, it seems, are woefully lacking in the ability to obtain, understand, and use health information.

Kaiser and the Post used some extreme examples of this, including:  A young mother pours a drug that is supposed to be taken by mouth into her baby's ear, perforating the eardrum. And a man in his 70s preparing for his first colonoscopy uses a suppository as directed, but without first removing it from the foil packet.

The article also pointed out that a U.S. Department of Education study found that 36 percent of adults have only basic or below-basic skills for dealing with health material. This means that 90 million Americans can understand discharge instructions written only at a fifth-grade level or lower.

Well, what doctor wants to confront that problem through an email exchange in which he or she is trying to be intelligent and lucid about something that may be medically complicated and the email recipient perhaps doesn’t have a clue about what’s being said?

Most of the myeloma doctors who’ve treated me, or to whom I’ve reached out, have been receptive to my wanting to use email as a method of communication.  Surprisingly, the higher up the “myeloma food chain” you go, the more willingness there seems to be to communicate by email.  I’ve been surprised by how readily some physicians – especially well-known, highly regarded myeloma doctors – have handed over their email addresses to me.

One of the most important aspects of myeloma treatment is having a good rapport with your doctor, and a lot of that is communication.  Being able to shoot off a quick email is a part of that.

As a patient, though, you need to be responsible and judicious about your email communications.  Sometimes, the email should be directed to your nurse, or nurse practitioner.  You certainly shouldn’t email about symptoms that require immediate attention.  For that you need to call.

On the other hand, when I’m going through something – an infection or side effect, for example – I’ll occasionally drop off an email note to the nurse, and perhaps the doctor, just updating them on how I’m doing.   Putting it in writing can prevent confusion or misinterpretation, which can happen when messages are passed around by conversation.

There was one occasion, however, when I sent one of these little updates to a fill-in nurse, who called me a couple of hours later and lit into me.  She didn’t even say “Hello” when I answered the phone, instead she launched a firm and lengthy lecture about “Never, ever email about symptoms.”

I was bemused by this, and let her go on and on.  I never said a word.  And, I never did enlighten her to the fact that she had completely misinterpreted my email.  We had talked earlier in the day, and I wasn’t looking for a response from her.  I just wanted to let her know how I was doing.

Recently, I was facing something new in my treatment regimen and, after reading up on it, became a bit concerned.  I dropped off a couple of lines expressing my worries to my cancer center doctor.  She wrote back saying she’d call me the next day.  She did, and she was reassuring and patient with me as I asked my questions.

That type of response is important to me.

One of my favorite myeloma doctors, who used to treat me but moved elsewhere, still remains a resource.  When he departed, he gave me his new email address and encouraged me to contact him.  I thought that was a really nice thing for him to do.

He does have a way of putting things in perspective, though.  At one point, I’d taken an online continuing medical education course on myeloma on the website Medscape, and I aced the final exam.  I bragged about this in an email to him, but he seemed less than impressed.

He simply wrote back, “That’s nice, Lou.”