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 FanPop.com

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

Christmas in Hospital: A Look Back

This has been an interesting year.  We got a chance to relive some of our hospital experiences in the summer which was a surreal trip down memory lane.  Several times this week I have been reminded of our Hospital Christmas 8 years ago.  Those were difficult times.  Russell was being kept alive by an artificial heart and we were waiting for an donor heart.  We were hoping for that elusive Christmas miracle.  Our frustration peaked on Dec 23rd and 24th when the young girl in the bed next to Russell received her heart transplant.  To make matters worse...Russell had two echos to assess him to determine if he could be the recipient of that heart.  The first echo showed that the donor heart was physically too large for Russell.  Apparently, it was very close to being a fit as a second echo was ordered and measurements were taken a second time.  It just wasn't meant to be and Russell missed his chance.  This made for a very sombre Christmas Eve.

It was times like this that writing was a very welcome distraction.  I hunted through my archives and found my blogpost from Christmas Eve - 2008.  It is really interesting to read some of these old posts and try to understand what I was thinking at the time.  I think I was obviously looking for a distraction.  It seems odd to compare a trip to the moon to our hospital journey, but we certainly felt like we were certainly in an alien environment and honestly it was nice to think about something other than "hospital world."

These are the kind of thoughts that go through your mind when you are a long way away from home and have been living on the edge for three months.

Christmas 2008:  Stollery Children's Hospital - 4C-ICE

Dec 24/08 - Christmas Eve

Posted Dec 24, 2008 2:03am

40 years ago on Christmas Eve, three people were in the midst of an epic journey that captivated the world’s attention and united the world in admiration of man’s accomplishment of space flight and man’s first journey to the moon. Those three astronauts, Frank Borman, Jim Lovell, and William Anders, addressed the entire human race from lunar orbit on Christmas Eve 1968. Realizing the magnitude of this achievement they were overcome with the desolation of the lunar landscape. In their address to the world they acknowledged a much greater achievement than the technological marvel of space flight but instead the grandeur of the creation of the heaven and the earth by an almighty creator. This trio of astronauts were the first to see a lunar sunrise and to see the earth from a million miles away. The experience must have been exhilarating.

As we also consider our journey of the last few months. We also marvel at the technological achievements that medicine and science have achieved through the Berlin Heart and ultimately through organ transplants. We consider ourselves fortunate to live in an age where our son can have a chance at life where only a few years ago that hope would not have existed.

Ultimately, we share the message of the crew of Apollo 8 and choose this Christmas to celebrate in a unique way. The following is the transcript taken from NASA archives as the crew of Apollo 8 addressed the world on Christmas Eve 1968 by taking turns the crew read from the Book of Genesis.

William Anders:

"For all the people on Earth the crew of Apollo 8 has a message we would like to send you".

"In the beginning God created the heaven and the earth.

And the earth was without form, and void; and darkness was upon the face of the deep.

And the Spirit of God moved upon the face of the waters. And God said, Let there be light: and there was light.

And God saw the light, that it was good: and God divided the light from the darkness."

Jim Lovell:

"And God called the light Day, and the darkness he called Night. And the evening and the morning were the first day.

And God said, Let there be a firmament in the midst of the waters, and let it divide the waters from the waters.

And God made the firmament, and divided the waters which were under the firmament from the waters which were above the firmament: and it was so.

And God called the firmament Heaven. And the evening and the morning were the second day."

Frank Borman:

"And God said, Let the waters under the heavens be gathered together unto one place, and let the dry land appear: and it was so.

And God called the dry land Earth; and the gathering together of the waters called the Seas: and God saw that it was good."

We too marvel at the creation but in different ways as these three astronauts. This Christmas we see the amazing creation of life. I have often referred to the day Russell was born as a truly “perfect” day. I do not know why we were chosen to have such a unique family. Nicole and Russell are our two miracles which have certainly changed who we are. As we wait for a heart, we know that there is certainly a lot in store for us. We take comfort in the knowledge that there is a plan for our family and that as we have been cared for over the last twelve weeks we will be cared for in the next twelve.

One thought I had while I was reading about Apollo 8, was the recurring thought of the climax of their mission. That once they had reached the moon...they still had critical task ahead of them. They had to return home. Like the astronauts, we know our journey here will not be complete until our family is once again ... home.

To all of you who have been such a great support these past few months, we say a huge thank you and Merry Christmas.

The previous post from 2008 was also very incomplete.  We did not get our heart transplant Christmas Miracle.  Just like the crew of Apollo 8 in 1968...they returned to earth and completed their mission on Dec 27, 1968.  Our mission to get Russell a new heart was completed Dec 30, 2008.


Merry Christmas All!

Managing Procedural Pain: Moving from Theory to Reality - Part 2

I wanted to follow up on my post related to Russell's Heart Cath.  My first post talked about all of our preparations prior to his surgery.  If you remember a year ago we thought we had a great plan as well and the results were not exactly fantastic.  Far from it.

So how did we do?  Now that we also have lab results back I can share that as well.

The lab results are all two thumbs up.  No indication of organ rejection.  All indicators are nil...nada...nothing.  Also negative for viruses which are a real concern for immune suppressed transplant patients.  So we are really happy about that.  Although we know Russell's health has been great...when you perform these tests there is always the anxiety that is associated with it.  It's nice to get a clean bill of health.

So the other big question was...with all of our preparation and worrying how did the day go?

It was a very interesting day and a very different experience.  At Pre-Admission Clinic we had a great discussion about the sedation plan and the anxiety leading up to the procedure.  We spent a lot of time on the anxiety issue.  Kids who are as medically "experienced" as Russell carry a lot of baggage with them when they go for these procedures.  Especially, given that this procedure has never gone very smoothly.  We (the Doctor, Susan, and myself) did a deep dive into Russell's chart and discussed why we thought things didn't work in the past.  Russell was present for this discussion, which I think is important.  Never underestimate what kids comprehend.  They may seem like they are not paying attention...but they are.

Our day started with our arrival at Children's Hospital at 6:45 AM.  The game plan involved doing the minimal poking and prodding when we arrived at the day surgery unit.  The day unit nurses would do basic vital signs and that was it.  We also utilized video games as a distraction to make the waiting a little more bearable.  That worked very well....thank you Minecraft.  When the time came to take Russell down to the Cath Lab we stopped at the waiting area and did not go into the lab. The cath lab is essentially an operating room with lots of unfriendly machines.  Not an inviting environment and obviously quite intimidating.

In the waiting area were several beds.  We got Russell comfortable on one of the beds.  The anesthesiologist setup monitors to keep track of Russell's vitals and then he prepared a cocktail for Russell to get him settled.  The Dr used an oral sedation to allow Russell to fall asleep with some pharmaceutical assistance.  Russell takes oral meds very well because he does it every day - twice a day.  Getting him to drink the med was very easy.  The plan was to give the med and just sit back, monitor his vitals, and wait for him to fall asleep.  The Dr told us this should take between 5-15 mins to take effect.  At 20 mins (and Russell still playing video games) a second dose was prepared and given.

Our son "the stoner".  Picture taken

20 mins after his first oral dose 

of Ketamine.  

The anesthesiologist commented that he had never given that big a dose to a child before.  Just another vivid reminder that our son is not the average patient.  He is extremely drug tolerant given his past medical experiences.  After dose # 2 was on board Russell started to show signs of being drowsy.  The anesthesiologist, with our permission, started the IV that would be used to administer the balance of the anesthetic throughout the procedure.  Russell went "out" completely calm and without any commotion.  This was a complete and total success.  However, this process was time consuming from beginning to end. We probably spent 30 minutes at this.  This is where I have to give the medical team, who were anxiously waiting to get started, a lot of credit for being incredibly patient.

So part 1 of our adventure was a success; he was out.  Now we wondered how he would react when he came out of the anesthetic.  This is where we got into real trouble last year.  Our anesthesiologist suspects that Russell may suffer from post op delirium.  Probably a result of his traumatic medical past and his age.  Knowing what it was, didn't make us feel any better but it was nice to know we had someone trying to understand what was going on.  Our Dr gave Russell an extra dose of med prior to heading to the recovery room (PACU).  The idea was to let him rest in recovery and very slowly wake up.  Wow...was that effective.  Usually, Russell is in the PACU for an hour and then back up to the day ward.  Not this time.  Russell was asleep for the full hour in PACU and was giving no indication of waking up.  Again, our medical team was extremely patient.  They didn't let Russell out of PACU until he was awake and we waited nearly 2 hours for that, and no one was rushing us.  In addition, given our esteemed status and Russell's reputation for waking up rather grumpy, we had a private room reserved for us in the PACU.  So our extended stay in the PACU was quite comfortable.

Russell was still fairly stoned when we finally got up to the day surgery ward.  It is sad for a parent to admit this but Russell was actually quite hilarious in his intoxicated state.  Because of the breathing tube that was in place during the surgery Russell's throat was a little gravelly.  In his intoxicated state he reminded us a of a belligerent little drunk.  I feel kind of bad now...poor little guy.

When we finally went home at 6:00 in the evening (after our 12 hour stay).  Russell still couldn't walk straight.  He got the 5 star treatment with a wheel chair ride down to our vehicle.  Even when we got home he was still very unstable or as Russell called it "wobbly".  By morning he was great and began running around like his old self.  He took the day off from school but by mid afternoon you would hardly have known he had been in hospital.  Kids are extremely resilient.

What did we learn?

Keeping in mind that this is our 8th or 9th day surgery it is a little frustrating to admit that after all this time it seems this is the first time we got it right.  Every year seems to have provided a new challenge.  We not only are dealing with a very wary patient we are also dealing with one who is growing up as well.  Kids change so fast as they grow up.  Every year when we do this we are dealing with a very different little boy.  He changes and our strategy should also change.  I don't anticipate this process will be remotely similar when he is 12 or 16.  We have to keep the US Marine Corp credo in mind "...Improvise...Adapt...Overcome."

We learned a ton about patience.  My advice to anyone going through any kind of procedure is to not be shy about asking everyone to slow things down.  Getting in a rush heightens anxiety and usually makes a difficult situation worse.  Our medical team was absolutely fabulous at taking their time.  We never felt rushed and that had a remarkable effect on us, as it gave us a chance to relax a little as well.

We hope our successful day is the beginning of a trend.  Gives us a lot more confidence when we face down our next procedure.

Nurse Found Guilty of Professional Misconduct

Carolyn Strom, a Registered Nurse who posted negative comments on Facebook, about the care of her grandfather has been found guilty of professional misconduct by the Saskatchewan Registered Nurses Association (SRNA).  The Facebook post described "sub par" care in the St Joseph's Health Facility in Macklin, Saskatchewan.  The staff of the facility filed a complaint with the SRNA.

Article Link:

Nurse Found Guilty of Professional Misconduct - the Star Phoenix

Today we live in an era where health care administrators are openly seeking patient involvement and feedback regarding the patient experience .  It seems that the Saskatchewan Registered Nurses Association (SRNA) is taking a position that counters the principles of meaningful patient engagement, and patient and family centred care. 

As someone who has raised many concerns about my family's health care, I have had to face a harsh reality.  It is exceedingly difficult to be heard and more importantly nearly impossible to effect meaningful change.  As a hospital board member who has listened to numerous complaints and concerns, I sympathize with those who choose to go through the formal process of initiating a concern through patient relations.  The process is bureaucratic and exceedingly slow.  As a caregiver I have felt the frustration of not feeling you are being listened too (wanting to raise concerns) but without an effective avenue to do so.  I am embarrassed to admit it, but I have on numerous occasions used unconventional means to make my concerns known.  This is just harsh reality of a broken patient complaints system.

The story of Ms. Strom highlights an even bigger issue.  An issue I hear about from many health care professionals.  In this case, Ms. Strom, a Registered Nurse would have specialized knowledge of health care and is in a position to speak with some authority on her grandfather's care from the perspective of a family member and as a nurse.  This is a perspective we should be seeking out, and not trying to discourage.  I hear this complaint often.  Nurses, and in some cases Doctors, encourage me to "speak up" because I can say things (as a parent or husband) that they cannot, as they fear disciplinary action.  There is a great deal of fear among staff in health care that raising legitimate concerns can result in disciplinary action similar to what Ms. Strom is facing.

Relating to the specifics of the charges levied against Ms. Strom, I find it ironic that SRNA is accusing Ms. Strom of violating her grandfather's confidentiality.  As a family member, I believe she has a right to do that.   I routinely blog about the health care experiences of my family members, and I have the right to do so.  I believe there is a distinct separation from my role as a "caregiver" and the role I play as health care leader (as a hospital board member or a board member of the Winnipeg Regional Health Authority).  Do the rules change if you are an "RN?"  The basis of that question likely lies in the determination of whether "legally" she was posting comments as a family member or in a role as an RN.  The SRNA contends that because MS Strom identified herself has an RN that she is subject to the rules of conduct stipulated by the SRNA.  Labour law would tend to support that argument, as social media can be viewed as an extension of the workplace.  Having written social media policy, and referring to the policy in my own workplace it is common for employers to ask employees, when they post on social media, that they NOT use a pseudonym and clearly identify who they work for.  This is important so that comments made by the author can be put into context and there is no deception.  If Ms. Strom wanted to malign or attack the character of a person or an institution she could have easily created an anonymous account to do so.  I think this is an important point when you consider the intent of her post.  I think intent is a very important consideration in this instance.  This the question I often ask myself when I post something on social media; "am I being part of the solution or part of the problem?" 

Health Care in this country has many challenges.  We need much improved methods of identifying failures within the system.  I hope Ms. Strom's intent in posting her concerns on social media were a genuine attempt to try to raise valid issues.  We need many more people who are interested in solving problems and not trying to limit appropriate communication.  I hope this incident prompts SRNA to more clearly define its Social Media Policy and educate its members on how they can effectively engage in meaningful improvements.  My fear is that disciplinary action taken by SRNA against Ms. Strom will further discourage these nurses from raising valid concerns and that would be a huge step backward for engagement in our health care.