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 
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 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:

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.


Unknown said...

Excellent article. I wish health care professionals would listen more to patients. Especially those of us living with multiple chronic illnesses and rare diseases who spend more time with our various doctors than we do our families. It can get discouraging. I get tired of hearing "It's the corperation or insurance that requires me to do that, I don't like it either."
I completely agree we need to get people to hear the positive side of narcotic pain meds from the patients but no one wants to hear it. I've tried. After 10 years of pain doctors telling me I wouldn't be able to function on less than 175mcg fentanyl patches, being basically non functioning and still having pain between 7 and 9 most days my Primary Doc convinced me I would be better off to lower my dose.
It took a little over a year of tapering and going through hell every month but I know have a life. My pain level is typically between 1to 3, very seldom does it go up to a 5.
But my experience isn't exciting or dramatic so no-one wants to hear it. I had physical withdrawals for 5-7 days each month but no emotional symptoms and I don't have cravings. I don't fit the drug addict mold.

The Pained Ink Slayer said...

Deborah, thank you for taking the time to read the article and comment.

It is important that patients and advocates know there are people who really care. I am sorry to hear about your predicament. It is not the first such story I have heard. As a nurse who advocates for fellow patients, I believe it takes a multimodal approach to conquer the way we deal personally with chronic pain. Any drug, any therapy, any approach that improves activities of daily living and encourages patients to become an active participant in their care is the right one.

We are each different, and yes, there was a time when drugs were seen as the only treatment, along with painful and sometimes ineffective, costly interventional procedures for chronic pain. They are a great adjunct for some. The paradigm is changing, but the recommendations, insurance reimbursement, healthcare delivery and focus back on patient outcome must be in place. People should be able to make informed decisions regardless if it is a medication or treatment, including complimentary therapies, that are not based on ability to pay. Thank you again. In healing, Celeste

Unknown said...

Thank you Celeste. I'm so glad I found you on Twitter and your blog. You verify so much what I have come to believe through my experience. We just need to find a way to reach more people who are not aware of the choices they have.
The first thing I tell anyone dealing with chronic. Invisible or rare Medical conditions is research everything, they are the consumer and the doctor works for them. Ask questions and don't stop asking until you are satisfied you understand.
Had I done that instead of believing the pain mgmt doc when she said fentanyl had no long term effects I might not have central sleep Apnea today or missed out on so many years of my life. We must be our own advocate.
Thank you for being willing to tell the truth. We need more like you in the medical field.

The Pained Ink Slayer said...

Deborah, I find great rewards in helping others through the books and articles I write. As most nurses, I believe the patient needs a voice and a choice. It would be very disheartening to me if I didn't network and advocate with like minded people, and there are many of us. The fact is the standard of care for pain management is changing. With it will come more hiccups along the way, that's the way we learn. It will never be perfect, but we must always make patient outcome the focus. I am very nervous about the AMA discharging pain as the "fifth vital sign" as a standard of care. Depriving patients who find opioids help them regain function will not treat addiction. Doctors that treat pain need to be educated on the many aspects of pain.

I had many interventional costly procedures through the years that didn't work because they targeted the wrong spot, and I have lived with problems that were not accurately diagnosed (my major nerve problem was discovered when my present pain doc got a pelvic MRI). It is interventional medicine with minimal opioids that has helped me the most. I am grateful to have a rheumatologist too. Non-opioid drugs to treat pain (i.e. gabapentin and similar formulations, SSRIs and SNRIs can have similar effects (sometimes with far more interactions and side effects), so without understanding the physical, emotional, mental, spiritual, financial relationships of pain, treating with a pill is not going to have the desired effect, no matter the drug, no matter how new or costly it is. Are the benefits worth the risk? If the answer is yes, then it is the right thing for that patient.

Their is no drug that will alone relieve chronic pain completely. Moving through life in a fog is the better choice for some, it is not for us to judge. But everyone should have all the options available and on the table.

Addiction treatment for the poor is a joke. A 3-day detox will not give people the tools they need. Prohibition on opioids is not the answer. The answer is funding for education and access to treatment for both patient communities.

I am grateful you are now managing your pain with the least amount intervention necessary. Acceptance is sometimes our most difficult hurdle to cross, but from there it is productive if we make the choice to continue forward and focus on finding the right doctor, the right diagnosis, the right treatment, and the right support. The paradigm is shifting, but it takes a village. Consider joining us at PAINS.

Celeste's Website

Celeste's Website
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