Friday, February 22, 2013

Your Input, Please

I've been asked to be part of a panel discussion addressing student nurses next month, for which I'm honored. The topic of the discussion is Communicating With ePatients: Patients who are 'educated, empowered, equipped, and engaged' in their care, and here's how the organizer of this panel views the issue:

"Patients in this group may be proficient at online research, active in health-centric communities (on or off line), or medical professionals.  They may be caregivers who are versed in their loved one's condition or self-advocates.  They come to appointments with notes, questions, ideas, and detailed input, and expect to be heard and taken seriously.  They don't (as a rule) believe they know more about medicine, but that they do know more about themselves.  They typically have chronic issues and want to partner with their medical team in their ongoing care plans.
Often times, their educated presentation backfires.  Chronic pain sufferers who know which medications will or won't work, claim allergies to a lesser medication right away, or come in the door asking for something by name are labelled drug seekers (not to diminish the issue of real drug seekers, but there has to be a way to separate the addict from the sufferer).  People who've researched diagnoses and diagnostics are hypochondriacs.  People who rattle off terminology are, at best, show offs and more often, labelled as attention seekers.  And unfortunately many older, more established physicians consider the involved patient a nuisance who couldn't possibly suggest something the doctor didn't consider on his or her own.  This is also seen in brand new practitioners whose wet ink on their licenses clearly tells us they know all the latest information and we should trust them implicitly."
Do you consider yourself an ePatient? Have you had experiences similar to the ones described above?

If you were given an opportunity to help educate health care providers on this topic, what would YOU want your future nurses and doctors to know?


Laura said...

This is a BRILLIANT topic. It is not just chronic conditions, though, and I wish they'd not put that label on it. It's probably most frequent with chronic conditions, but also recurrent-but-not-chronic conditions.

Of which pregnancy is a good example and the L&D and OB group are an excellent example of the kind of lack-of-respect that can be shown to such women in some cases.

But, ignoring pregnancy which is its own hotbed, there's still other stuff. I don't have chronic sinus infections by any means. But I do have allergies and get colds easily, so I do get sinus infections occasionally.

And mine are usually atypical. I don't get a fever with them. I do get the classic pressure symptoms, and you can definitely tell when it's gone from "congested" to "infected".

Thank goodness for my current doctor, who listens to my symptoms, my attempt to treat at home, where I am now, and gives me the antibiotic I need. What used to happen with a previous doctor is they'd see me and send me home to monitor it for a week. After I'd already been monitoring it for a week or more and it was no longer responding to decongestants and (additional symptoms here that are, actually, kinda icky, this being a sinus infection).

I got so very frustrated about that. Not only did it mean I had to come in when it DIDN'T need treatment if I wanted to be able to get treatment when it DID - a total waste of my time, the doctor's time, the facility's time, my money, and my insurance's money, *ESPECIALLY* if it subsequently didn't need treatment because it resolved - but if I didn't, which I didn't, I got to suffer for a week.

So yes, I really like my current doctor, who confirms I *have done* what she *would have* recommended had I come in earlier, and proceeds to get me the medicine I need if I come through the door in that shape.

It's heck on patients when the doctor doesn't take their knowledge and information into account. But it also can cost the doctor reputation (word of mouth), *and waste their time*. If you have a patient who has given you, say, information that two drugs don't work for them, insisting on prescribing one not only guarantees they'll go through misery until the chance to try to get you to revise that (or, if they're smart and lucky enough to have options, seeing another doctor and giving you the old heave-ho), but it's also a total waste of your time that could have been spent helping that patient. If they do stay with you, when they come back to get the fact that it's not working addressed, that is an appointment that was directly and totally unnecessary. (If a follow-up would have occurred anyway, then the follow-up to the follow-up would be the one that wouldn't have been needed...somewhere along the chain you waste time trying and failing the one they already knew would fail.)

The biggest cost, IMO, is to the patients. But it's not a "free" piece of ego for the doctor, either. It wastes their time.

One thing I wish and hope is that doctors who have patients who are educated about their condition and who KNOW that is the case, and who know about drug allergies etc., would add that to their record. So that if the current doctor retires or moves, and the next doctor is skeptical, they'll have the word of the previous doctor that yes, this is really the case, listen to this patient.

Shouldn't be necessary. The doctor should in many cases be able to tell from what the patient is saying that they have a clue. But I'm not sure that's always possible, and in any case if you have someone who is hesitant, perhaps the word of the previous authority would help.

Kate S. said...

You've given me my morning essay question. Great question! More later, but another (related) problem is when you are trying to bring a new doctor up to speed, and you come in with a summary of all the tests you've had, treatments that have been tried, and what your current treatment is, and they look at you and say "I don't have time for all this".

And want to go back to square one of tests and treatments.

Blogger Mama said...

Great blog post. I may have to follow this up with a blog post of my own. :o)

What, I think, I would want them to know is.... That often when patients are in the beginning stages of diagnosis it can be very frustrating for the patient. Patients can leave the office feeling overwhelmed or crazy after having so many tests done. Blood tests, ultra sounds, this and that. It makes a patient's "journey" to diagnosis SO much easier to handle when the doctor you are dealing with seems genuinely dedicated to finding the answers. Rather than a physician who throws a couple of tests at a patient and then never follows up.

Also.... Bedside manner. Bedside manner. Bedside manner. I reiterate because it is just THAT important!!!! Honestly, if someone told me to choose between these two doctors.... 1. A doctor who was brusque, seemed uncaring, and a little skeptical about my symptoms, who would discover a diagnosis in 2 months....or.... 2.A doctor who genuinely seems to care, appears to be empathetic to me, and is understanding, who would diagnose me in 3 months. I would, hands down every time, be willing to deal with symptoms for an extra month rather than deal with the first doctor!

Annette/@Anetto said...

I'm finding that Health Care Professionals don't even know the term "ePatient", let alone what to do with them.
With the movement towards self management the health care system is going to want us all to be epatients and work towards better health on our own.
Also health literacy is a major prognosticator of better outcomes. I'm sure you will do a great presentation

Annette/@Anetto said...

Here's someone else talking about it from a different point of view. I wanted to steal his like

ShEiLa said...

Yes, Julia... I resemble an ePatient.

In almost every experience... When I go to
an appointment prepared having done my
research I am told that most of what I read
Is not true.

I would just like an open minded medical team...
One that is willing to listen to the patient. I would
like to be validated. Believe me I would not be
spending so much time in doctors offices if I did
not need help.

I trust that you , having experienced chronic
illness and pain yourself will brilliantly convey
the message that we ourselves would love to
say. Good luck!