Participate – Work as Part of A Team With Your Medical Providers


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Self-Care Tip – Work as part of a team with your medical providers.

Today I had the pleasure of speaking with managing editor of the Journal of Participatory Medicine (JoPM,) Kathleen O’Malley.  Ms. O’Malley spoke to me about the effort they are making in this online journal to collaborate the work between patients and physicians.  Ultimately, their goal is to eliminate the barriers that keep us each from seeking to learn from the other’s perspective and knowledge.  She tells me that,

We are a team.

When my brother Vance’s baby was born, she was damaged and premature, so tiny and needed help to live.  Now, one year later, I am playing ball with her on the floor.  Her intelligent smile, thriving body and especially the lovely nape of her neck with that baby-curl of hair lipping up makes remembering her near death-dive into life surreal.  I don’t really want to remember it anyway.  But when I cannot help myself, what I like to think of is how my brother and sister-in-law were treated.

The physicians at UCSD were unbelievable.  Vance told me, with somewhat pressured speech from his amazement, how they, without hesitation, included him in their daily decision-making and informed him of any medical study results.  In case you don’t know, in case you have never been sick or been in a medical setting otherwise, this does not always happen.

I know I am guilty of this too.  Hovering over charts, hiding laboratory results, many of us practitioners behave as if our patients were at any moment going to throw us into court.  It is embarrassing, even though the truth is, too many of us physicians are stalked by litigious intentions, whilst the hoards of truly awful practitioners seem to sail away on unsinkable malpractice without pursuit.

Ms. O’Malley and the JoPM are working with all of us to put the bows, arrows, guns and weaponry down and take two steps back.  It is Thanksgiving-day every day there (I call Pocahontas!  I look good with brades.) and at the safe-place that this journal offers, we can learn from each other.  We can collaborate.  We can be vulnerable and not be preyed upon.   We can be sick, we can teach, we can simply observe and hope that like my niece, in time, we will find ourselves growing up in health and love more so because of it.

Please take a gander over to JoPM.  Say hi to Ms. O’Malley.  Read some of the stories from patients and physicians.  Comment if you will and participate for self-care.  It is your right.  You are free to choose.

Questions:  When you have had, or been proxy to (as I was with my niece), a spectacular patient-doctor exchange – what made it so great?  How did you “participate?”  How did participating make a difference for you v. “being mere passengers?”  Please tell me your story.

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23 thoughts on “Participate – Work as Part of A Team With Your Medical Providers

  1. i allways wnated to be part of a team with my doctors etc but somehow it just falls apart im kinda stable at the momment maybe when i get that cpn and my mental health mentor i might see progress there most likely and the other hand i have been building my own team in the back ground with every thing going on and that things in the back ground etc i will be adding to my own team with my blog but i have put it on here for a reason becuase without that person i can no longer make progress becuase of time one person can do a lot but a couple can do more and a team well now they could build rome in a day

  2. When my daughter was 3, she fell on an escalator and her hand was severely damaged. In the emergency room, I heard a doctor and nurse discussing immediate amputation; they were speaking Afrikaans and didn’t know I understood.
    That is non-participative medical care.
    We immediately found a surgeon who, over a very long year, did four long operations to reconstruct our child’s hand.

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  4. My experience has been we may try to be participants in health management with our provider in various fields but the effort is often met with dismisiveness by the doctor. When I ask questions my doctors says “OK. Make it quick. I have sick people in the waiting room” or”Just take these pills. You’re not going to live much longer anyway” or “I’ma doctor,You’re not a med student” or “Take care of yourself, Carl”. If I could take care of myself I would not need a doctor or a surgeon, would I ? Then he says ” If I didn’t have so many bills to pay, you would not even be one of my patients”. My thoracic surgeon knocks out triple by-passes like giving flu shots. It’s “assembly line” medicine these days. Unfortunately the political,financial and other “complications of the system necessitate such an impersonal environment.

  5. Working as a team benefits all. My area has a group of hospitals, specialists, and offices that network. All info is computer based so that any dr within network has access to other patient information which makes treatment optimal especially if the patient is unable to convey information.

  6. We were so lucky. When my daughter was in 7th grade, she thought she had sprained her ankle playing tennis. The doctor agreed but suggested that we have x-rays done just to make sure it wasn’t a stress fracture. We went next door to his office to get the x-ray done and they handed it to me, NOT in an envelope, to take back to our doctor. No comments from the orthopedic doctor. I looked at the x-ray, because of course a mother would, and there was a two inch by probably three inch hole in my daughter’s leg! I sat with my daugher in our doctor’s waiting room for almost a half an hour, with this x-ray in my lap, trying to keep breathing and not cry. When we finally got to see the doctor, he was wonderful. The orthopedic doctor was fantastic. He was right there with us. Only problem was, although they were pretty sure it wasn’t cancer because it was too high above the ankle, they asked us to trust them…and give it a year or so. It was too large to operate on without causing her leg to be two or three inches shorter (and her having to learn to walk again because they would have had to take a piece out of each hip bone to fill the hole). We were told to call day or night with questions or concerns; both doctors saw us at bi-weekly and then bi-monthly and then every-three-months intervals. She couldn’t skate or ride a bike or take gym or even jump rope because she had less than 1/8 inch of shin bone, but, with constant encouragement from all doctors and a whole lot of them AND God…the fibrocordical (sp?) defect filled in by the time she was in her mid-twenties, she never broke her leg, never was in pain (after being on crutches for a while with what actually was a sprain), and, to her great delight, never had to take a gym class in her life! Without the support of the doctors it could have been at least an emotional disaster especially considering my rather frail emotional condition. And the doctors LOVED sending the worst defect they’d ever seen all over the U.S. and taking it to every convention they went to for years.

  7. Needless to say, I agree. Doctors and patients need to get along and work together more. Doctors need to treat their patients as equals, and patients need to stop suing. Doctors make mistakes! They’re people, too! My favorite doctors are the ones that give me a say in what’s going on and tell me what they’re doing and why. I have had a lot of rude doctors, but a few times I found some that were really great, especially a few dentists and hygenists.

  8. In my city where ten thousand people do not have a family doctor they depend on walk in clinics. Team – is lost. Each visit is a different doc. For those with family docs some tell the patient they can only come with one complaint or issue even though the discussion of a number of issues or symptoms might easily point to a cause. I am lucky and have had the same doc for thrity five years, but when he retires??????

    • it’s hard to think about, i’m sure. we r so vulnerable to the assistance of ones such as your familiar doc. please tell us as u progress through this experience. i pray u will feel safe along the way. keep on.

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