Home > doctor patient communications, health conferences, Twitter > "Putting Patients First" = No Patients (Time to go clean my room now.)

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

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.

………………………………………………………………………………

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)

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  1. July 12, 2009 at 5:36 pm

    OK, so I am giving you a chance to have a voice. I am not in charge of this thing, so I didn’t chose the panel. The best I can do is to give people a chance and to be accountable in what I say.

    I agree with the overall premise of your post, but I do think that patient advocates discount doctors’ opinions as well. Overall patient advocates only hear from people who need them. In other words, they don’t hear from people when things are going well. This means that your cross-section is also somewhat untrustworthy. The purpose of having the docs we do have at the conference is to use people who make their living in the exam room – seeing patients. We see good and bad in the system, and contribute our part in the discussion. The discussion is not complete with only us, but nor is it a good representation of patients’ needs when patient-bloggers are at the table. We all need to work together. That is the main point of this post, I see, so all this rambling is simply me saying: “I agree.”

  2. July 12, 2009 at 5:53 pm

    Doctor Rob Lamberts,

    Interesting that you see patient advocates as only hearing or understanding the negative side of a patient’s experience. In fact, an advocate participates to be sure that an experience is good. So, by definition, an advocate must understand both the plusses and minuses, the good and the bad parts of a patient’s healthcare experience.

    I’ve earned the respect I’ve earned from medical professionals because I absolutely see the good and the bad. I also write and speak about the positives and negatives on a regular basis. My input doesn’t come solely from griping patients, believe me.

    Please don’t paint advocates with any sort of brush that suggests we only see the bad. Those among us who continue to participate in the conversation — perhaps as “professional patients” — do so with the most collaborative of intentions, and not from a negative point of view.

  3. July 12, 2009 at 6:02 pm

    OK. I am corrected. My intent was simply to agree with the idea of collaboration. I do see a different angle of things that you do and see things that you miss. Obviously you do the same for me. A complete picture can only contain both.

  4. July 12, 2009 at 7:04 pm

    Great post, Trisha.

    Re: Doctor Rob’s premise, I really have to wonder…why does the fact that patient advocates may in some cases hear more from those patients who have problems somehow make the problems we are hearing about any less relevant to the discussion?

    When doctors sit down for a Morbidity and Mortality conference, they don’t sit there and talk about all the cases that went well and all the patients who were discharged without anything notable happening, and the routine successful surgeries. The idea is to learn from the mistakes, and to then apply what has been learned so that future mistakes can be avoided.

    The fact that mistakes are singled out for study does not make an M&M conference untrustworthy…it means that it is a filtering process, looking to ID the problems, and look for solutions.

    Patient advocates function in somewhat the same way. We do not just hear horror stories and problems of course, but perhaps it does skew more toward hearing about the problems, and not the things that went right. And why? Because as advocates for patients, we’re here to help patients solve problems.

    Legitimate, valid, problems that deserve a voice.

    We hear the stories that patients are too afraid to tell their own doctors.

    So we know what sorts of problems there are, at least for average people who are trying to feel and live well — the number of which far exceed the number of doctors in America. We hear all about the problems with the health care system — from the macro level of health care as a whole, down to one-on-one communications problems between individual doctors and patients.

    Anyone can organize a conference however they want…but the fact is, if you’re going to create a “Putting Patients First” conference, and not include patients as part of the discussion, then the title alone is oxymoronic, and the fact that such a conference was created and excludes patient voices pretty much ensures patients aren’t being put first.

  5. July 12, 2009 at 7:23 pm

    Just to be clear – the intent of the press conference was to give medical bloggers an opportunity to speak directly to politicians inside the beltway about their healthcare reform concerns. I invited medbloggers who have been the most outspoken about reform, and who have the largest reach – but sadly I couldn’t include as many people as I’d like due to budget constraints, etc.

    The conference needed a name – so as I thought about what medbloggers really wanted to communicate, it seemed to me that we cared most about putting our patients first, and that this message often got lost in the “who’s going to pay” arguments.

    The spirit of the conference is about expressing the need to preserve the patients’ right to choose (along with their providers’ advice and input) the best path for their care. It was never my intention to exclude patients from the conference in any way – patients and physicians/nurses are each others best allies, and we need to stick together!

    I will see if I can include a patient medblogger to add some balance – my apologies for any upset that this might have caused!

    Yours in the struggle for quality, affordable, healthcare for all,

    Val

    • July 13, 2009 at 8:25 am

      Dr. Val,

      Thanks for your clarification. I believe several patients intend to be present — check with Mary Shomon or Dave deBronkart. Either one would be an excellent addition to your panel.

      You should know that your conference panel is the third one in the past ten days (that I have heard about) that is supposedly focused on patients, yet to which no patients were invited.

      The world of healthcare is changing. Health and medical care needs to shift its model from paternalistic to participatory. We patients aren’t trying to be difficult. We just want to be seen as equals in the conversation.

  6. July 13, 2009 at 8:17 am

    Great post and discussion. I see two places where attempts at reform fall apart.

    First is collaboration. The only ones trained in it are those who have sought that training specifically. It’s not yet taught in professional health care education because it is only now coming on the scene. It’s hard enough for (most) conventional health care providers to collaborate among themselves. The idea of collaborating with a patient upsets the hierarchy and makes many professionals feel very vulnerable. And when collaborating with the patient means bringing in unlicensed health care providers, the challenges of communication and time further strain the situation.

    Second, the conventional approach of looking to ID what went wrong by only looking at the failed cases is flawed and tells at best only half the story. We can learn so much by also studying the successes, including those people who are so successful in maintaining their health and well-being that they stay pretty much out of the health care system.

  7. July 15, 2009 at 6:53 am

    It’s one thing to talk about and see how a patient lives from the eyes of a medical professional or advocate. It is completely another to have lived a medical nightmare spanning years where collaboration is left in the billing office of the doctor’s office.

    The only way to find care, in the end, was to find doctors who believed in patient collaboration. The only way for that to happen was for me to study for years how to be a lab tech, lawyer, doctor and project manager. It costs my family years lost, our jobs, our home, our cars, and our future income because, even with insurance, we are swimming in mountains of debt.

    You want to see the ugly side of un-collaboration, I have a list of friends with the same “rare” problem I have that have the same problems. We all seen different doctors and we all have the same problems with most of them. Un-collaboration is not something I stand for in a medical setting because it almost killed me, twice, and has damaged my body beyond what it can repair. I gladly live with it because the alternative is not living. The pain that un-collaboration caused will haunt me till my last breath and I will continue writing and speaking about what it can and does cause until that time. Thanks for listening.

  1. July 12, 2009 at 4:52 pm
  2. July 20, 2009 at 12:54 pm

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