PJ Bird

Portland, OR, United States

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PJ Bird
Posted almost 4 years ago
"WHY is the patient the most under-used resource in healthcare?? How did that happen?" (Follow-up to LIVE TED Conversation July 27)
http://well.blogs.nytimes.com/2011/08/11/letting-doctors-make-the-tough-decisions/?smid=tw-taraparkerpope&seid=auto I feel like a pest, Dave, with all my comments. Please accept my apologies. After reading this, all I can say is that this "study" needs a do-over. HCP's joining the circle of care is a very important step. Patient centered care and patient autonomy is a subject near and dear to me. Keep up your good work! (Making decisions for oneself does not equate "evicting" a professionally educated HCP, it merely means a person has a sense of control in a situation that may actually be out of control.)
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PJ Bird
Posted almost 4 years ago
"WHY is the patient the most under-used resource in healthcare?? How did that happen?" (Follow-up to LIVE TED Conversation July 27)
AGREE! Open Courseware is available for FREE online now! iTunes offers lectures from legitimate institutions. Many universities, including MIT offer free classes, as well. When I'm in need of information that I don't currently have the knowledge of, the internet is my friend and often my 1st source. Not all on the web is credible, but I expect that MIT or East Tennessee Univ, or any otherwise reputable source of information/education can legitimately help me fill in the "blanks". Some expect HCP's to know EVERYTHING about their problem. Sometimes, that's impossible. Why do drs feel so insulted by a person educating him/herself? "I don't know, I'll get back to you" makes me feel important & worthy. The 21st century has arrived, I don't always like it either. Transparency is good. Our doc recognizes our tech savvy and has gone so far as to cite journal articles to support his HC decisions. Guessing that he doesn't offer that to all, only after an interview of pt to see how much info is too much or how much the pt actually wants to receive. Seems like a good practice.
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PJ Bird
Posted almost 4 years ago
"WHY is the patient the most under-used resource in healthcare?? How did that happen?" (Follow-up to LIVE TED Conversation July 27)
Local culture /age play an enormous role in this subject, too. My mom was a RN educated in the 60's in the Western medical model in the midwest USA. She developed cancer, she was an extremely compliant patient. She followed every order from her team of MDs. She immediately changed her diet to nearly completely Indian vegetarian, + supplements even though she was born & raised in the midwest eating meats, vegetables, fruits usually in desserts only. She never questioned any "advice" she was given by any doctor. Professionally, she was strong and a critical thinker. When she got sick, she changed. She became passive and meek. She never once considered going to the "city" or the university hospital even though it was< an hour away. She died less than 2 years later in early 60's, after a grueling, painful attempt to survive. (She is the only family member to develop cancer). She was physically fit & active) .My dad is in hospital now (midwest) with many problems. CA, sepsis, pneum., etc. His wife is overwhelmed. She records all conversations with drs @ my rqst. I visited him in ICU and tho' I have his permission to get info about him, his pulmonologist told me, verbatim, I don't have time to talk to you. Talk to your stepmom. I was speechless.He abruptly left the room. I'm a nurse in addition to my other job. It is unethical in my part of the country to tell a client's family that you're "too busy to talk to" family. I would have gladly made an appointment. I was never given that opportunites.I looked around,I realized there were many differences between where I have experience and where my dad is cared for. Don't like comes to mind.Simple things: no hand sanitizer in halls (ICU!),no visitors for 2 hours at shift change, etc.I can't imagine what info has been gathered during his care that will never be shared with them and they don't have the savvy to ask for. A letter is on the way to the administrator! "Hostage patient" even if HE doesnt' feel that way! Not empowered
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PJ Bird
Posted almost 4 years ago
"WHY is the patient the most under-used resource in healthcare?? How did that happen?" (Follow-up to LIVE TED Conversation July 27)
My husband and I had/have the benefit of working for a legacy airline. When it became clear that his melanoma was changing pace, I began scouring the web for trials, world-wide. I called our- and I mean OUR doctor (cancer is a FAMILY disease) to request some additional testing, in a hurry. At first, I felt like I was met with some resistance. Then, after my DH failed to meet the criteria for that trial, on the other coast, I found another trial. He didn't quite make the criteria for that one either. The third one, had just closed- the 20 clients (or whatever small number of participants permitted) had been selected. It was with a very sick feeling in the pit of my stomach that I called our dr again to agree to a meeting about IL2. When we got to the clinic for that meeting, the dr was on the phone with a colleague in another city, on our coast, and had made an appt for the next day to actually ENTER the study. Our dr specializes in breast CA, melanoma is second. Thanks to Dr. Smith of Portland OR and his willingness to listen to our dedication n committment to try anything, anywhere, I was blessed with 4 more months of love from my husband. I will NEVER be able to express my gratitude to him for listening (a lot more than I had given him credit for). Somewhere along the way, we made an impression on him that made him take notice of our passion. Perhaps it was our 4 yo son sitting on my DHs lap during treatments 8 yrs earlier, perhaps it was my persistence...never will know. And naysayers, 4 months is a VERY long time! Having the info we needed, when we needed it made all of this possible. Insisting on copies of everything, everytime helped.A lot.And more than Dr. Smith made it possible, he's just our favorite. And having an advocate-either self or someone else- is absolutely critical. As a widow now, I fear for my health if it fails suddenly. My 13yo son will be of little help. Better get my hc info in writing very soon-and tell him where it is stored! Thanks Dave
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PJ Bird
Posted almost 4 years ago
"WHY is the patient the most under-used resource in healthcare?? How did that happen?" (Follow-up to LIVE TED Conversation July 27)
Thank you! Can you cite the regulations that state I'm legally entitled to a copy of my records? I'd like to pursue this for a reason other than being an empowered patient. Not to sue, by the way! And, perhaps, you've inspired me to "design" a form that would have been helpful and easier on my elbow/shoulder! And could be emailed, like you say you do before an appointment with your HCP.
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PJ Bird
Posted almost 4 years ago
Dave deBronkart: Meet e-Patient Dave
"How Doctors Think" should be required reading for all aspiring doctors AND nurses (both for the benefit of the nurse & doctor but for the benefit of the patient being cared for!) Critical thinking is a learned skill, not an innate part of any education. Critical thinkers are the patients (or people in general) often referred to as "challenging". "What else could it be" or what other choices do I have often force a change of thought processes that steer the "authority" down a different path. While I recognize & respect the "authority's" role, busy schedule, other's waiting, etc. he/she has put himself/herself in a position to tend to that person and IMO that is exactly what he/she should consider at that point. AND if an answer can not be provided immediately, a committment to follow up should be the next step. An empowered patient will follow up if a reply hasn't been received in a REASONABLE time frame.
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PJ Bird
Posted almost 4 years ago
Dave deBronkart: Meet e-Patient Dave
Thank you! I can think of nothing more to say than thank you for at least offering an opportunity for your students to at least hear from patient before taking on all of the responsibilites of being a good doctor!
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PJ Bird
Posted almost 4 years ago
Dave deBronkart: Meet e-Patient Dave
Oh Peggy....your last sentence is THE most important statement I've read here yet. How unfortunate that we are put on the "care conveyor belt" when desperately ill and HCP's don't have time to spend educating...even if only in the form of a brochure or even a website or two.