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Patients don't need permission.

Thursday, May 28, 2015



Our 2nd CF Care Model Design Meeting, which just finished yesterday, went really well.  I will soon post more about what we did.  Until then, feel free to check out these storify links: Day 1 and Day 2

But I wanted to share the biggest take-away I gained from my attendance at the 2nd CF Care Model Design Meeting and why it matters:

Patients don't need permission.

This new understanding has rocked my world and I think it will continue to rock my world - because it's implications will continue to reverberate through everything I do from now on in CF care.

I'm naturally an entrepreneur.  I like to dream and create.  I like to reevaluate and redesign.  I don't like accepting no.  And I don't like playing by the rules.  Sometimes, this gets me in trouble.  But more times than not, this actually moves me forward - especially when I can find others like myself who are doing the same thing.

I'm not unique.  Americans, in general, tend to be this way.  We make our own paths.  We live in a country and culture that encourages this somewhat-rogue behavior.

And yet, one area where I see myself and others struggle with embracing this idea is when it comes to health care.  When you have CF, health care is so much of your life.  So, it's interesting that I would struggle to embrace my entrepreneurial spirit in such an important way.

I am rule-maker in so many areas of life.  And yet, in health care, I've bowed to the implicit rule that patients must play by the rules - follow the doctor's orders - do what we are told to do.  I think it comes from a fear - a fear that if I don't do what the doctors say, I won't be given good care.

The health care system even as a name for this "do what I say" rule: adherence.  As a patient, if I don't do what my doctor says, don't take my meds the way to bottle prescribes, don't follow the medical protocol my doctor has created, I can be labeled as "non-adherent."  This fear of being labeled non-adherent is very real.  For those with CF being evaluated on the transplant list, being a non-adherent patient can actually keep them from access to a chance for healthy lungs.

Thankfully, health care is changing.  Slowly there is a shift in health care from a paternalistic way of doing things (the type of health care where the patient passively does what the wise/expert/all-knowing doctor says) to a greater partnership way of doing things (patient and doctor work together to address problems where the patient makes the ultimate decisions on his/her care).  But it's a slow process.

Even then, I thought I'd embraced this way of doing health care as much as I could.  I changed CF doctors several years ago so I could be more in control of the decisions in Bennett's care as I wanted our CF clinicians to be our CF consultants, no longer the all-knowing CF experts whom I had to agree with and "obey."

But, this past week has taught me that, unknowingly, I continue to play a passive role in Bennett's care.  I still tend to believe that the way CF care is going to improve is for someone else to initiate it - someone else to start it - someone else to lead.   I have looked to my CF doctor to do it.  I have looked to my CF Care Center to do it.  I have looked to the CF Foundation to do it.

In many ways, I have received the leadership I have wanted.  The CF Foundation, my hospital, the CF Clinic, the CF clinicians are also wanting change and they have made efforts to do so on varying levels. This blog post is of no indictment on their work. (It is, in fact, the CF Foundation who helped make it possible for me to learn, grow and gain this kind of insight this past week at this meeting.)  

My personal struggle is that the change that needs to happen is not happening quickly enough.  Foundations, hospitals and clinicians are, in many ways, large systems that, even at their greatest efficiency, are simply unable to move as quickly as the progression of Cystic Fibrosis in my child's body.

In my frustration, I have blamed.  I have felt neglected.  I have been disappointed.  I have thought myself powerless.

But, this week, I realized, I do not have to wait for hospitals, clinic, clinicians or foundations to make the change I want to see.

The power lies within me, the patient.  And I don't need anyone's permission to find that power and use it.  

The reality is the power lies in every stakeholder in CF care.

If I have a good idea, I need to share it.  If I have a community, I need to organize it.  If I have resources, I need to put them to use.

I'll be honest, I thought I was already doing this.  I thought, by being a Co-Chair of my CF Clinic's Patient Advisory Council, I could make movement happen.  But, like all those from whom I've sought permission, I have run into barrier after barrier...and I've waited for the people in charge to remove those barriers for me...completely unaware, the entire time, that I had the ability to do so myself.

For example, our children's hospital will not let our CF Clinic Patient Advisory Council create a website or FB page.  Our CF Patient Advisory Council has been told we cannot share our meeting minutes with our CF families.  One of my CF clinicians told me I couldn't continue to email several of our CF team members for they are too "busy" to hear about what we are doing.

As a CF mom, this is unacceptable.  Quality improvement and advances in CF care cannot happen within a closed system.  We need to open it for all to use and see.  Everyone should have access to information and to the community that exists.

For the last 6 months, I have felt frustrated, as though I could not move forward without my Clinic/Hospital/Clinician's approval.  But what I realized is nobody has to give me permission to make life with CF better - my life and those around me.

What keeps me from creating my own website to share valuable information with other CF families (I might not be able to use the hospital's logo but that doesn't mean I can't share)?  What keeps me from developing a network of patients like myself who are not satisfied with the status-quo in CF care?  What keeps me from emailing whomever I want to share about what we are doing for CF patients?  That's up to me.

What I've realized is the limitations I put on myself are imaginary.  When I believe that change must begin from the top, I am unknowingly telling myself I can do nothing from the bottom.  And that is absolutely not true.  The truth is: the power is at the bottom.

I must go forward, whether my CF clinic, my hospital or the CF Foundation chooses to come along or not.  We want them to be a part of what we are doing.  And I believe they will be.  But those who deal with this awful disease day in and day out, with no relief, have no time to wait for others to do it for us.

We are the experts in our own care.  We just need to recognize the resources we have at our fingertips and put them to use.  We need to wholeheartedly embrace the idea that we, as patients, don't need permission to make our lives better.   The permission is already there.

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