I just attended a conference, Coalition for Compassionate Care of California in Newport Beach.
I learned about the “e-patient” movement. I had no idea how organized this movement was.
Patients are changing healthcare! Hallelujah!
E-patient Movement is a call to action to patients to become:
… and become active partners with their physicians and nurses.
There were many stories shared, instructions to access the resources available and a plea to get the message out!
Physicians, who have been converted, are proclaiming that patients are the most under-utilized resource we have in healthcare.
Most of us are seeing regulations driving some of these changes throughout the system now…
But my Ah-ha was deeper when I heard one e-patient say:
“My doctor said that I would not have survived the treatment had I not gotten maximally informed from other patients across the country who had gone through it and had not educated him (the physician) before we went into the process.”
The patient got himself prepared and then his doc. That was a partnership. And there are physicians and systems that are practicing in this way.
The Paradigm Shift-
- Information Asymmetry
- Physician and Nurses as Oracles
- Information Symmetry
- Physician and Nurses as Partners
Information asymmetry and symmetry has to do with more than what the regulations are driving.
- yes, Easy access to PHI (protected health information)/ medical information
- and, Internet searches – sharing and full discussions (between doc & pt)
- and, Clinical language literacy
Great laughs and tears were shared from this…
Clinical language Not understood by the public resulting in … “too afraid to ask” or “wrong message sent”, etc.
NEVER use these terms:
- “Progressive” – patient thinks- “That means I’m better, right?”
- “Prognosis” – patient thinks- This always means dying
- “Advanced” – patient thinks- “ yea… like my child’s advanced placement?”
- “Goals of Care”- patient thinks- “whose goals?”
- “Multi system organ failure” – patient asks- “Is that dying?”
Regarding End of life-
Just say….. “You are approaching end of life”
- “ Do you want us to do everything?” (who doesn’t want that and what is everything?)
- “Withdraw care” (no one wants that, be specific and you’ll get different answers)
- “… when he dies, do you want us to bring him back.”
- “… when her heart stops, do you want us to make it start again.”
One in Five, 1/5 deaths in the US happen in ICU.
Sites and resources:
- epatientdave.com (Dave deBronkart)
- Smartpatients.com (Online community where patients and caregivers learn from each other)
- participatorymedicine.org/ (Society for Participatory Medicine)
- ACOR.org (Association of CA Online Resources)
- Katybutler.com ( Knocking On Heaven’s Door: The Path To A Better Way of Death. New York Times Bestseller 2013. By Katy Butler)
- slowmedicine.com/ (Slow Medicine Movement)
Watson advised us …. healthcare change will happen when nursing and medicine and the people we serve are aligned (1999).
Watson J. Postmodern Nursing and Beyond. Edinburgh: Churchill Livingstone; 1999.