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"Putting Patients First" = No Patients (Time to go clean my room now.)

July 12, 2009 10 comments

I’ve just returned after being away for the weekend and logged into Twitter, where I find my favorite Tweeps discussing a Blogger-Politician-Healthcare Reform discussion being promoted by Dr. Val of Better Health, and some real dissention in the ranks regarding whether patients should be included in the discussion.

The doctors say “No, we can discuss what is good for patients.  Patients don’t need to be at the table.”

The patients, feeling very excluded, say, “How can you discuss what is best for us without asking us?  We are supposedly the focus of your conversation. Isn’t our contribution important?”

And the doctors reply, “We know what is best for you.  After all, we are all patients.  You are, therefore, represented.”

And Trisha says, “Not so fast!”

And here’s why.  In my attempt to help frame a conversation, to collaborate, to help you understand a patient’s point of view, please bear with me for a moment.

In the midst of healthcare reform, the word “collaboration” gets tossed around by those who think they want to collaborate. But the moment they must truly step up to the collaboration table, they opt out.  Why?  Not because they don’t want to, but because they don’t know how.  This seems to be a perfect example.

When you became a doctor, or a nurse, or whatever other medical profession you are part of, you studied medicine. But you also had mentors – attendings or higher level residents or nurse supervisors — someone who had been around longer than you — who taught you how to behave with patients.  Not treat them.  Behave with them.

You learned that you are in charge.  You call the shots.  You determine what is best.  You have the knowledge, education and experience, after all.

You behave with your patients not so differently from the way you behave with your children. Because you are in charge of them, and know what is best for them, too, right?

Think of it this way.  In your experience, and the reason you learned to behave with patients the way you do, is because you know that patients have not traditionally been good about taking responsibility for their health or healthcare.  (Your children have not been good about it either.) Therefore, for many, their health could not improve or be managed unless you DID care for them in that paternalistic, benevolent manner.  (Unless you insist your children clean their rooms, their rooms will never be clean!)

Not only that, it’s what your patients have expected.  (Kids know you’ll be upset if they don’t get their rooms cleaned.)

The problem is, that the healthcare world has changed.  I don’t have to tell you that.  You know that in many ways better than most patients do.

Included in that change has been a major shift in how patients see their care.  Many of us — those of us who have learned to take responsibility, and unfortunately, those of us who have learned that responsibility is necessary because of MAJOR hiccups with our healthcare — no longer want you to be or ask you to be so paternalistic.

We don’t want mommy or daddy doctor determining our care or “raising” us through our care.  We need you to help us be responsible patients.  We want to collaborate with you. Less parenting and more insistence on patient responsibility is what’s in order here.

And so we say to you — please stop telling us what is best for us.  Teach us to learn about our options and let us help decide what is best for us. Help us learn to be responsible.

We are not your children.  We are your colleagues, friends, customers, clients…. we are your patients.  We have opinions.  We have knowledge.  We are smart. We can understand. We can make decisions. We can become responsible.

But not if we are consistently excluded from the conversation.  Not if you only ever talk ABOUT us and not WITH us.  Not if you continue approaching your jobs as if you are parents, and not collaborators, even though — yes — I understand that you mostly can’t help that.  It’s how you were taught.

You are not a (pure) patient, too.  You are one half of a team. Professional and patient, together, will improve outcomes and attitudes for all.

I’m pretty good at keeping my room clean.  I can be a good collaborator, too.

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Learn more about Trisha and her work.

Learn more about Trisha’s book
You Bet Your Life! The 10 Mistakes Every Patient Makes

(How to Fix Them to Get the Healthcare You Deserve)

Why Doctors Aren’t Patients, Too

July 11, 2009 3 comments

Two reasons I write this post:

  1. As I wrote my book (to be published Fall 2009) I researched other books available to help patients become smart patients.  All but two I found were written by doctors.
  2. Healthcare reform seems to have spawned any number of conferences, meetings and gatherings where “all the important stakeholders” are represented at the table.  Except that many of them don’t invite or include patients — evidently we aren’t considered important stakeholders in healthcare.  (she typed as she shook her head….)

So it seems prudent to explain to you why we patients just don’t buy that opinion we get from doctors, nurses or medical professionals, that “we are all patients” or that “doctors are patients, too.”

I believe that no one whose makes their livelihood from medical care is a pure patient, not tainted by medical knowledge, education and experience.

Here’s why:  you can never subtract that knowledge.  You will always have your background to guide you.  Your level of fear, of the unknown, will always be affected by your knowledge of all that surrounds any experience you have as a medical professional.

Saying a doctor is a patient is like saying an auto mechanic is a car owner.  Or that the President of the United States is an American citizen.  Or that a university professor is a student.

And to us patients, it comes across as condescending.

In my book, I describe it like this:  You can never subtract your knowledge of medicine and the system just like you can’t subtract your ability to read.  It will always be with you.

A patient, on the other hand, doesn’t have that knowledge.  Fear of our medical problems is multiplied by our fear of the unknown.

Take a look at this and tell me what it says:

Ορκίζομαι να εκπληρώσει, όσο καλύτερα μου κρίση και ικανότητα, η εν λόγω σύμβαση που έχει:

Θα αφορά το κόπο επιστημονικά οφέλη από αυτές τις ενέργειες των οποίων οι γιατροί σε πάω με τα πόδια, και ευχαρίστως το μερίδιο αυτών των γνώσεων, όπως είναι η δική μου με αυτούς που είναι να ακολουθήσει.*

That’s what medicine feels like to a patient.  We don’t get it. We don’t understand it. We must learn it, beginning at square one.  And once we can do that, we can begin to get past the fear and begin to engage in the conversation.

So please, doctor (or nurse or…) — please don’t tell us you are a patient, too. You may “officially” be one, but you will never be able to think purely like a patient.

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*By the way, this is the beginning of the Greek version of something that should be well-known to you.  Something we patients expect you have embraced and practice every day.

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Learn more about Trisha and her work.

Learn more about Trisha’s book
You Bet Your Life! The 10 Mistakes Every Patient Makes

(How to Fix Them to Get the Healthcare You Deserve)