Monday, April 28, 2014

The symposium "Patients as Teachers," "Clinicians as Learners," a synopsis by Celeste Cooper


Center for Practical Bioethics
Patients as Teachers
Clinicians as Learners

April 25, 2014

Let me start by saying that this was a day packed with important, ethical, and usable information. The Center for Practical Bioethics, the organization that put on this symposium in honor of one of their benefactors, Joan Berkley, presented a program that Joan Berkley would be proud to represent.

There was a powerhouse of information offered by people with passion and compassion. Following is what "I" took away from this symposium.

Practicing physicians, bioethicists, researchers, educators, professors, journalists, hospital administrators, psych-ologists and patients, yes patients, took the podium or sat on a panel. You will find it interesting to know that some of the presenters wore two hats, that of professional and patient and everyone was willing to field questions. The media was there in full force too. I apologize for not remembering the names of who said what, but suffice it to say, everything that everyone shared was important and thought provoking.



Rethinking the Paradigm (the model)
"Patient" vs. "Person experiencing illness"


The learning health care system

We started the day discussing the importance of a LEARNING health care system by asking questions like, are clinicians serving and promoting well-being? What are the insights on scientific evidence and are they capturing the real meaning of patient outcome?

Rethinking the Paradigm
"Healthcare system" vs. "Learning healthcare system"

We heard about society's investment, particularly important because of political and legal influences on medicine. We know people make mistakes and so do healthcare systems, but how can we improve if no one admits it? I ask, should we be so caught up, all of us, in the legal implications of mistakes to the point of defending them instead of learning from them? What is the incentive for a "learning" healthcare system? Can we see our way clear to think of healthcare delivery as a human interaction between patient and provider? Shouldn't "people with illness" be more than blobs of cellular mass that accumulate in medical care waiting rooms?
           
We were provoked to think of questions about how we can transform the present model by identifying incentives, improving communication, and understanding moral imperatives to do something. We learned about ways to do this, very specific ways to do this, and all agreed that it begins with the patient, with our community, our physicians, our learning institutions, and a shift in our present way of thinking about healthcare. Being a change agent involves everyone.

Societal impact, patient priorities, and outcome

Chronic pain and illness has an impact on society, there is no doubt about that, but the impact pain and illness has is not limited. It affects patients, those who treat us, and those who provide the means for treatment. Everyone has a stake in the process. One way we can affect healthcare for the better is to have research and data collection that is not based on political, personal, or corporation gain. Instead, it should focus on patient outcome. When patients do better, society also reaps the benefits.

Rethinking the Paradigm
"Empirical Research  vs. Data Collection"

Improved delivery of care should equate with improved patient outcome. Novel idea, the patient improves and healthcare consumption declines. Our current system has every aspect of healthcare delivery circling the drain. The reasons are multi-factorial so there is no room or time for placing blame. We must accept what it is and move forward by creating incentives that will affect necessary change.  

Our means of data collection in the U.S. is poor due to political agendas and fear of legal implications. We can fix this if we are able to collect data that prioritizes patient outcome and provides follow up for everyone involved. Study participants want to know the results of studies; this could be a huge incentive in getting us to participate.

As an RN with a clinical background in emergency nursing, we treated patients, we stabilized them, but we rarely knew if the patient was able to return to their previous level of functioning. Where is the data on this? How can we assess information on success or failure of interventions if the data on long-term outcomes is not available? This type of informatics is a huge undertaking but it is possible, and there are people willing to help. Think of the database we could learn from if we weren't shackled by the small sampling we currently have. Every chronic pain patient or patient with a chronic illness knows medication side effects and medical devise failure. We also know that true results are born from a vastly larger sampling, the public. Even then, not all reactions are reported and if they aren't reported, they didn't happen. It is as simple and as complicated as that. This doesn't mean there still isn't a need for empirical studies, it only means that we have a great deal of information that isn't being utilized effectively, a sad commentary in lieu of our present technology. As patients, we have a primary role.

I was inspired by bioethicists, representatives from healthcare systems, hospital administrators, physicians, and other clinicians that see it is a moral imperative to look at gaps in our current system.

Rethinking the Paradigm
"Filling the potholes"

Our present system is also mired down with legal and political entanglements regarding privacy. We have seen all the paperwork. Do you feel any better about how your information is shared since these privacy acts were implemented? Do you feel they have improved your outcome? I know I don't. To me it seems like a costly exercise in futility where money could be used more effectively and efficiently. Yes, we need privacy, but I suspect most healthcare providers understand this importance without being told and those who share your information will do it despite any law. How many read every word or understand those pages of paper shoved at us before a physician can legally see us? The same is true for education by a pharmacist on our medication. I know if I had a question, I could always call the pharmacist and get an answer, I don't need to sign a document every time I pick up my prescriptions. Ninety percent of law is the intent and in my opinion, these laws are creating a healthcare cost conundrum. As patients, we can affect change, but we must speak up, give our opinion when the opportunity presents, and be willing to let our data be used for the greater good. There are ways to protect our information and still share it. We have a moral imperative to contact our legislators and let them know exactly what we think. (See helpful links on my website here.)  

The affect of media hype regarding opioids

Journalists, patients, and professors brought up some very good points regarding media hype on opioids and the demise of our country as a whole because of them. Now, peel yourself off the ceiling.

First, both sides of this human factor are not represented equally. The media needs personal stories to publish regarding the good side of pain treatment. We can share our stories and we can encourage our pain doctors to do the same. It needs to be a polarized issue, meaning equal time. People in our society who are not touched by chronic pain don't hear about how opioids improve function. Pharmaceutical companies have deep pockets to pay for press releases and influence the DEA, which makes physicians fearful. Of course, there are always concerns that opioids will fall into the wrong hands, but there should also be concerns that millions of Americans will be left untreated leaving them at a higher risk for suicide. Why should a chronic pain patient have to pick up and move to a state where medical marijuana is legal? The general public doesn't understand that when opioids are administered and followed closely by an educated healthcare professional, the risk of abuse is no more than it would be for alcohol. They don't understand there are many forms of marijuana that relieve pain without causing a euphoric effect. What they should understand is that having pain treated is a basic human right and if in the same position, they would fight for their rights too. We have a basic animal instinct to avoid pain. Why are we letting people with financial agendas brainwash society? Reporters report news; we need to give it to them. One physician in the audience made a statement that stuck with me when discussing the use of opioids to treat "legitimate pain"...

"What is legitimate pain? Isn't all pain legitimate?"
Rethinking the Paradigm

Human experiences

Many shared their human experiences, which provided us with thought provoking, learning opportunities.

Rethinking the Paradigm
"What the doctor says vs. What the patient hears"

Does there come a time when we as patients become weary of being talked at, instead of with, and after a while, do we turn a deaf ear? The answer is yes. Skillful communication is an issue; there are plenty of studies to show why physicians don't communicate better. One of the psychiatrist's speaking offered the suggestion that physicians ask open-ended statements such as, "How is your family?" I am still uncertain if he understood the implications of that question for the person living with chronic pain. If asked, the answer to that question could give the physician an inside look at coping strategies and the support someone living with pain has at home. If we employ good communication skills, maybe it's possible to be the example. There are some tips on my website here

Rethinking the Paradigm
"Speaking, using closed-end questions, interrupting 
vs. 
Asking, answering, listening, clarifying"

Facing reality

What we do, what we teach, what we talk about with our loved ones may not be what happens when we are faced with hard realities. I think this is very personal and unique. It doesn't mean we shouldn't have a plan, it only means that we may not hold to our way of thinking until a situation is presented. We have no control over the future. No one knows this better than the bioethicist who was interviewed on live radio (KCUR) during the symposium. To listen to a compelling personal story on end of life decisions by someone who teaches and speaks all over the world on this issue, click here. You will not hear what you think you will hear.


In conclusion

You know I raised my hand quite a lot. I had some questions that were answered before the mike came around to me, which holds true to my belief that if one person has a question, someone else in the audience has the same question. A journalist for the Kansas City Nursing News was there and she interviewed others and me. I was in awe of the degree that people care about these important ethical issues.

If I could have added any final comments, it would have been, "We have been fed, go forth - teach others to fish." Following that analogy, I am doing that here and I hope you will do the same.

People from all walks of healthcare are becoming change agents for finding a new way of delivering care and treating pain. We can be willing partners. (See www.PioneersResearch.org or similar resources in your area). Participation in patient focused research is a privilege that affects not just us as individuals.

It all starts at home and future generations will be affected by our decisions today.


~ • ~ • ~ • ~ • ~ • ~
Update as of April 2015

"Adversity is only an obstacle if we fail to see opportunity."  
Celeste Cooper, RN
Author—Patient—Health Central Chronic Pain Pro Advocate
New Website
Celeste’s Website: http://CelesteCooper.com

Learn more about what you can do to help your body function to its potential in the books you can find here on Celeste's  blog. Subscribe to posts by using the information in the upper right hand corner or use the share buttons to share with others.





Sunday, April 27, 2014

Moving into the Month of Specific Spoonie Awareness by Celeste Cooper



As April 2014 ends, here is a recap for this month's awareness into conditions and methods of coping and re-energizing our body, mind, and spirit.

From Broken Body, Wounded Spirit: Balancing the See-Saw of Chronic Pain, Spring Devotions

"No man is great enough or wise enough for any of us to surrender our destiny to. 
The only way in which anyone can lead us is to restore to us the belief in our own guidance."
~Henry Miller


Looking Back at IBS by Celeste Cooper



As we prepare for one of the biggest awareness month, it's only fitting to share a short but important poem that will provide a bridge from April to May.

Pain Facts of an Advocate© by Celeste Cooper 

Fatigue challenges us,
Action defines us.
Collaboration empowers us,
Tenacity unveils us, 
Spirit enlightens us, 
Pain and illness unites “The Advocate”

Preparing for May...

Ribbon Colors for May Awareness:

  • Autoimmune Rare Diseases - Black or orange
  • Systemic lupus erythematosus (SLE) - orange
  • Fibromyalgia (FM) - Purple
  • Myalgic Encephalomyelitis/Chronic Fatigue (ME/CFS) - Blue
  • Complex Regional Pain Syndrome (CRPS/RSD - Orange with yellow and red
  • Ehler's Danlos Syndrome (EDS) - Blue with Black and white stripes on one side
  • Chiari Malformation - Purple
  • Arthritis - Navy blue
  • Allergy 
    • Asthma = Gray
    • Food = Teal (I have seen varying colors)
  • Allergy-sinusitis - I could not find one ribbon for this most important reaction to environmental triggers so I am going with true green to represent the color of common triggers.
  • Lyme Disease - Lime Green
  • Osteoporosis (OP) - Blue vs white
  • Neuropathy - Purple


For everyone who knows what it's like to live with rare, autoimmune, or poorly understood conditions or disease , spoonies, my greatest hope is that you will take up arms by representing this vast community. Change your profile picture and feel free to use the spoon picture to spread the word for all who endure the many effects of chronic pain and illness. Make the choice to be visible. Support your organizations by sharing information, making a donation, encouraging others to make a donation, or offer up a few words of support. 


Whatever it is you have in your wheelhouse, USE IT!


~ • ~ • ~ • ~ • ~ • ~

All answers and blogs are based on the author's opinions and writing and are not meant to replace medical advice.  

Celeste Cooper is a retired RN, educator, fibromyalgia patient, and author of books related to chronic pain and illness. You can read more about Celeste and her work on her Amazon Author Profile, here , or look to the right of this blog for direct links to her work.









Saturday, April 19, 2014

Did you know that April is "Qi Gong Awareness" month? by Celeste Cooper



The deep meditative breathing practice, Qigong, is shown in the research as a valuable tool for helping us cope with chronic pain. That is because there is a biological effect of this ancient practice. From a scientific approach, we know oxygen is needed in the Krebs cycle for cellular metabolism and without oxygen, cellular damage will occur. We know from the research that oxidative stress is prevalent in both FM and ME/CFS, and has been identified in other chronic pain conditions.  This is why such a gentle approach to movement also has a beneficial physical effect on both the body and the mind.


Read more about Qigong and Tai Chi in an Interview with Bill Douglas by Dr. Andrew Weil, What benefits can Tai chi and Qigong bring to others?here.



We are privileged that Bill Douglas, author of "TheComplete Idiot's Guide to T'ai Chi and Qigong and inductee to the Internal Arts Hall of Fame in New York, and Founder of World Tai Chi and Qigong Day has written an endorsement of "Spring Devotions"  in the Broken Body, Wounded Spirit: Balancing the See-Saw of Chronic Pain Series.


Here is what Bill Douglas had to say:


"Broken Body, Wounded Spirit Balancing the See Saw of Chronic Pain" one of four seasonal daybooks' holistic approach to chronic pain challenges is a powerful tool to everyone dealing with these issues. It is a self-empowerment tool, making you the cartographer in the adventure of your evolving future.

My 20 years of working with people challenged by chronic pain issues have revealed to me just how deeply the mind, heart (emotions), and body are intertwined and how a holistic approach is a powerful one. Often our mind drives us to push, push, push because of old programming in our lives. This habit overrides the body's requirements, and needs to be untangled. This book will support and help you get back in touch with your body', so you can become an 'ally' rather than a brutal taskmaster. You can re-learn how to 'play' with your body, rather than dictating to it. This book's advocacy of Tai Chi is just one of the many insightful and valuable gems it has to offer everyone dealing with chronic pain."



More information on Qigong can be found in Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: The Mind-Body Connection, and the Broken Body, Wounded Spirit: Balancing the See-Saw of Chronic Pain Series by Celeste Cooper, RN and Jeff Miller, PhD available at all major online retailers in the U.S., Canada, and the U.K.



For "How To" instructions, pick up a copy of "The Complete Idiot's Guide to T'ai Chi and Qigong by Bill Douglas and Angela Wong Douglas, here, and learn more about Bill Douglas and the benefits of Qigong, here.



Available here




Breathe
Relax
Grow
Let Go and Let it Flow


~ Celeste


Monday, April 7, 2014

Looking Back at IBS by Celeste Cooper


Because irritable bowel syndrome is a comorbid condition to fibromyalgia, and because it is IBS awareness month, I decided to look back at what I have had to say about this painful and embarrassing condition. Following are blogs, information from Celeste's website, and information as fibromyalgia health expert on Dr. Mehmet Oz' et al. online health site, Sharecare.

If you have IBS and you haven't read these, you will find helpful information. I know what having IBS means to you, as you read, you will understand why.

  • What is Irritable Bowel Syndrome? By Celeste Cooper, here.
  • Coming Clean on a Dirty Secret, Irritable Bowel Syndrome by Celeste Cooper, here.
  • As Fibromyalgia Expert on Sharecare, here.
  • Celeste Cooper’s Interview with Dr. Wangen, IBS specialist, here.


~ • ~ • ~ • ~ • ~ • ~

All answers and blogs are based on the author's opinions and writing and are not meant to replace medical advice.  

Celeste Cooper is a retired RN, educator, fibromyalgia patient, and author of books related to chronic pain and illness. You can read more about Celeste and her work on her Amazon Author Profile, here , or look to the right of this blog for direct links to her work.

Celeste is a fibromyalgia expert for Dr. Oz, et al., at Sharecare.com, here, and she advocates for all chronic pain patients as a participant in the Pain Action Alliance to Implement a National Strategy, here. You can read more educational information and about her books on her website, http://TheseThree.com


April is Poetry Recognition Month by Celeste Cooper



Take a Stand by Celeste Cooper 
Swirling ideas, each significant to plan.
Upholding brave principles and taking a stand.
Provisions of nature and all living things
Gives fortitude, fulfillment of what life can bring.

Taste the climb; take pause, ageless, forever;
Ours for the taking–precious gift to endeavor.
Inherited by forefathers, a guide for our path,
Achievement secured when we learn from the past.

So stand up we shall, securing our position;
When acted on, they are more than conditions.
Comrades, principles, nature, history, at hand

Are the tools that endure when taking a stand.


Excerpt from Broken Body, Wounded Spirit: Balancing the See-Saw of Chronic Pain, SPRING DEVOTIONS, here.

  
"Poetry is writing about yourself waiting
to see what will show up, the words are
the finger points of your soul.”  

~Sandford Lyne, author of
Writing Poetry from the Inside Out





Inner Expression:
 Coping with Pain and Fatigue through Poetry

Coping with chronic pain is challenging. Maintaining forward momentum in the face of unpredictable symptoms and fatigue is daunting.

Poetry is a conduit to our soul, providing energy to hurtle over the many obstacles we meet in life. It provides an endless path by heightening our senses: sight, sound, touch, and smell. It is the feel, the texture, and all that may not be present but is in the mind. Poetry knows no time, no era, no restraints; it is an ever-present expression of self or circumstances through the written word...

~ • ~ • ~ • ~ • ~ • ~

All answers and blogs are based on the author's opinions and writing and are not meant to replace medical advice.  

Celeste Cooper is a retired RN, educator, fibromyalgia patient, and author of books related to chronic pain and illness. You can read more about Celeste and her work on her Amazon Author Profile, here , or look to the right of this blog for direct links to her work.

Celeste is a fibromyalgia expert for Dr. Oz, et al., at Sharecare.com, here, and she advocates for all chronic pain patients as a participant in the Pain Action Alliance to Implement a National Strategy, here. You can read more educational information and about her books on her website, http://TheseThree.com





Celeste's Website

Celeste's Website
Click on the picture