Thursday, December 29, 2016

Use the Force Luke: The "Dark Side" of Health Care

Are "Patients and Families" the "Jedi" of the health care system?

For many years I have watched in frustration as our health care system languishes in mediocrity.  We spend more per capita in this country than every country in the world except the United States.  However, our health care outcomes are in the middle of the pack of industrialised nations.  Monique Begin, a former federal health minister stated that we have all of the information to solve our health care issues but we have failed to implement (loosely paraphrased).  My question is how can this change come to fruition?

Without the Jedi, there can be no balance in the force
-  Lor San Tekka - Episode VII - The Force Awakens     

Bringing Balance to the Health Care "Force"

In May of 2010 I had my first experience as an advocate for patients and their families.  I was invited  to participate as a family representative to discuss the paediatric cardiology program at Stollery Children's Hospital.

I must admit I was sceptical going into the day. Were a few families invited to be token representatives?  Were we there to share an emotional personal story, and then be ignored for the balance of the day?  These are probably the concerns many patients and families feel as they attend these kinds of meetings.

What happened during that day changed my attitude on patient engagement.  The day began by the expected sharing of a patient story.  What happened next amazed and astounded me.  As the day progressed what started out as a "whisper" from the families in attendance began to gain momentum until a "clear and distinct" patient voice was heard.  We were equals...we were being listened to!  Recommendations were coming directly from families in attendance.  When we had breakout sessions we were asked to report back to the entire group.  Parents were seizing the microphone and conveying talking points on behalf of the health care professionals in their group.  It was a fantastic day and this is when I saw the impact and powerful role families could play in developing policy and being health care leaders.  I have been trying to recreate that level of engagement ever since.

Having had a glimpse of patient and family centred being put into action; I am spoiled.  I have seen what improvements can happen when the patient is truly considered first and foremost. Patients and caregivers need to be given authority to access information and make informed decisions.  I thought that the principles of patient and family centred care could be easily replicated, but I quickly found out that it is not easy.  That isn't how the health care system works.

"We'll figure it out. We'll use the force"  -  Finn
"That's not how the force works" - Han Solo
-  Episode VII - The Force Awakens     

The "Dark Side" of Health Care:  The Health Care Establishment

The Health Care Establishment as viewed by the patient
Photo : Courtesy of
Since my first foray into patient advocacy I have been involved in numerous groups and committees under the pretence of patient engagement.  The terms "Patient Engagement" and "Patient Centredness" have become health care industry buzzwords.  In may respects these terms have lost their meaning.  I am sad to report that many patient committees are carefully managed by the health care establishment.  They view patients and their families/caregivers as a group that needs to be managed rather than genuinely listened too.  Many times families are relegated to the "kids table" of the decision making process.  Health care administrators claim to be inclusive but are merely "checking the check box" of patient engagement.  Many times patients are not being genuinely listened too.  I have seen this far too often.  This is when I changed my approach. This is when I decided to use the "force".  I decided to use the patient story to make an impact.

"The force is strong with this one"
-  Darth Vader - Episode IV A New Hope     

The Patient Experience: The "Force"

As someone with a compelling patient experience, I would occasionally get asked to speak at meetings or conferences.  I was thankful for the opportunity.  However, there was no way I was going to let those opportunities pass me by without striking a blow for patient and family centred care.  I would get asked to share our patient story and trust me; I could get the waterworks started.  If I was coming to speak to your group you had best make sure you had a box of kleenex at the ready.  Just when I had the audience emotionally vulnerable I would make the case for how patient and family centred care made a difference for us.  How we work together with our health care providers and get superior health care.  The patient story becomes more than anecdotal it becomes theory put into action.  I started to make some waves and that was when I knew I was having some impact.

The next step for me was to get in front of the decision makers to state my case.  I was using the "force" to directly confront the "dark side" of health care.  The side that resisted change, that seemingly knew better than patients.  Powerful patient experiences are the conversation ender.  It's very difficult for program managers, section heads, and exeutives to pat themselves on the back when they have to stare across the table from someone with lived experience who has been a witness to their failures.  The political spin cannot survive that level of scrutiny.  My experience and the experiences of other families form a powerful narrative.  I am certainly not alone in this endeavour, there are many other powerful advocates speaking the same message.   The "rebel" forces were (and are) growing in numbers.

"The Resistance will not be Intimidated"
-  Poe - Episode VII  The Force Awakens      

Tempted by the "Dark Side"

Then a unique opportunity presented itself.  I was asked to join a hospital board.  I didn't think a lot about it at the time but this turned out to be a game changer.  When I went to meetings I was not the token family representative.  I was now a board member...a decision maker.  I could ask a question and (in my new role) health care professionals were "obligated" to provide the information.  This was a completely new perspective for me.  Being a leader in health care provided an entirely new perspective.  Now that experience on a lone hospital board has evolved into a position on a regional health board.

In a dark place we find ourselves, and a little more knowledge lights our way.
-  Yoda - Episode III Revenge of the Sith     

It would be easy for me to be passive and enjoy the ego boost that being on a health care board entails.  It would be much easier just to go with the flow and not make waves...but I can't.  I can't afford to as health care is not an occupation or an income for me.  Health care is a reality of me and my family.  The stakes are much higher for me.

"Do or not do...there is no try"
-  Yoda - Episode V The Empire Stikes Back    

Being on the other side of health care I have learned many things.  It has been an eye opening experience.  What I have found most compelling is that most people I have met and worked with (in health care) DO care a great deal about health care and the patients they serve.  Unfortunately, the system we have created makes change exceedingly difficult.  Difficult even for those who are at senior levels of the system.  In many ways we are a victim of the system we have created.  

After all that I have seen and experienced I still strongly believe that patients and their caregivers are our best opportunity to make meaningful changes.  We are at a stage of health care gridlock and patients questioning the status quo may be our best chance at meaningful change.  Through lived experience I have learned how powerful partnering with patients can be; if we could only be able to be true partners with our health care providers and finally change the discussion.  We just may be able to make the changes that so many people want.

Now that I am on the inside, perhaps I should be looking for plans to the "Death Star" so that we can finally destroy it.

Exploding Deathstar photo: Wired

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