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.

Managing Procedural Pain: Moving from Theory to Reality

Tomorrow is the big day.  We are heading to the hospital at 6:00 AM for Russell's annual Heart Catheterization.  This is THE test we do every year to check on the function of Russell's transplanted heart and to do a biopsy that is used to check for any signs of rejection or coronary artery disease.  That carries with it it's own apprehension and stress.  The fear that something may be wrong.  Fortunately, we have had consistently good results in years past, and we have no reason to expect any different results.  However, the fear of the unknown does linger in the back of your mind.

The short term goal for tomorrow is to get through the day with the minimum amount of disruption for Russell as possible.  That has proven to be a significant challenge, and last year, despite our best efforts was an unmitigated disaster.  We're trying to turn that around this year.  For those who don't know what happened last year.  Here is a link to my blogpost from a year ago and a description of what happened.

Russell's Heart Cath - 2015

Susan and I have tried to get a lot more information on how to manage Russell's fears and anxiety.  This is challenging because Russell knows exactly what is coming and is quite knowledgeable in his own right.

Fortunately, we have a good team that has been very receptive to our concerns and have made many suggestions.  We have input from mental health specialists who have conveyed some strategies for dealing with the anxiety leading up to the procedure but we also have spent some considerable time at our pre admit clinic discussing a comprehensive sedation plan.   We had a good discussion about what happened last year and reviewed the chart and I think we have made some changes that should work better this time around.

The Challenges

There is a good deal of information available related to procedural pain pediatric patients.  Lots of good strategies have been studied and have been proven to be very helpful.  Reading some of the literature I wish we had some of this information years ago.  However, the important  thing to keep in mind is that is really important that you know your child and select strategies that you think have the best chances for success.

As an example, one of the strategies that many have become big proponents of is "numbing cream".  The idea is to apply a cream to an area of skin to "numb" the area so that your child does not feel a needle insertion.  Personally, I am not a fan of the product (for Russell).  The creams used usually take quite a while to take effect, and my criticism is that it heightens the anxiety of the procedure by dragging out the process.  Keep in mind, Russell knows exactly what is coming and he is also a little guy with a lot of anxiety.  For him, the numbing cream is just as traumatic as the needle poke itself.  The tried and true method with him has always been to get in and get out as fast and accurately as you can.  Absolutely, do not drag out the process.  I also know that some parents think using numbing cream is fantastic and have good results.  This is the importance of knowing your own child and using what will have the best outcomes for them.  My strategy may (and should) change for other children.  For instance, using a numbing cream may be a useful strategy if we were talking about my daughter, Nicole.  She has very little experience with any painful procedures and if we asked her I am sure she would be very receptive to using the cream.  In fact our pediatrician has used several distraction techniques with her and they have all been reasonably effective.  My point here is that you have to know you child and not be afraid to tell your health care providers what will and won't work.

The Plan

Our plan for tomorrow has actually been in place for a few days.  We've spent a significant amount of effort discussing this with Russell.  We are trying to a lot more work addressing his anxiety.  It's been a challenge.  He gets agitated when we talk about it.  Occasionally, we get a question.  Those are great opportunities to talk through the issues.  We're trying to get him mentally prepared.  We are acknowledging the process and his fears.  These are real and we want him to be able to verbalize how he feels.  We are also trying to reinforce his successes.  He has an amazing knowledge and he has been through so many of these procedures.  We reinforce these successes in which there have been many.  The limited discussions that we have had we have definitely tried to keep him included in the process.  He has a say on what happens.  Any bit of control we can give him we will.  I would have hoped we could have had some more input from Russell but we are very slowly working through his anxiety and we won't solve all of these issues in a couple of days.  We hope that Russell has a sense that he has been included in the plan and the we will be executing "his" plan.

What Will We Do Different this Time?

Last year at this time, we thought we had a pretty good plan.  It didn't go very well.  Some of the things we will do differently this year has included some of the mental preparation as I have already discussed.  This is what we will do at home to prepare.  Much of what will happen tomorrow is the plan we developed with the anesthesiologist, at pre admit clinic.  The input we have received has been really interesting.  In the past, we had requested pre-sedation, (benzodiazipines) which has not been effective with managing any anxiety.  We won't be doing that this time.  No pokes will happen in day surgery.  The IV will only be started in the operating room by the anesthesiologist.  We are trying to greatly reduce the poking Russell would have to do before the procedure.

The other key strategy change this time around is that we have discussed taking our time.  We will be in no hurry.  If Russell is upset, we will take time to get him calm.  Pinning him down to get something done will not be an option.  In the past, when we got to the OR there seemed to be a rush to get things done and get him "put under."  Not sure why.  This time we will slow things down.  We spend many hours waiting for Doctors and Nurses, I think it is only fair that they should wait for us every now and then.

Talking the Talk vs Walking the Walk

Tomorrow we will put all of the discussions and planning to the test.  All of the theories and speculation don't mean anything if they aren't implemented.  I've been fortunate to have had opportunities to discuss our experiences and what we thing works as it related to pain management and procedural pain.  I've been lucky to have input into research projects on the subject.  I guess tomorrow we'll find out if we know what we are talking about.

Review: Vital Bonds - The Nature of Things

Memories are the key not to the past, but to the future. - Corrie Ten Boom

Profound words coming from someone who survived a Nazi concentration camp.  Memories have a profound impact on how we look at the world and who we become.  Our lives changed on October 2, 2008.  What took place over those 6 months is difficult to explain.  Last Thursday, we came as close as we ever will to reliving our transplant journey.

CBC, through it's longstanding program The Nature of Things was given unprecedented access to the University of Alberta Hospitals including the Stollery Children's Hospital and the Mazankowski Alberta Heart Institute.  Territory we know very well.  The program chronicles the organ transplant experience.  It follows several patients, both the donors and recipients through portions of their transplant journeys.  The openness in which this is presented is quite astounding.  All of those who participated in this documentary, put themselves out into the public at their most difficult times.  The openness is quite remarkable.  I have placed a link to the program below where it can be seen in its entirety.

Vital Bonds: CBC The Nature of Things Nov 17, 2016

How Real Was It?

First off, the amount of insider knowledge we had of this programming was stunning.  Several of our Doctors were featured in the documentary including Russell's cardiac surgeon, and Russell's transplant cardiologist.  In addition, we recognised many locations in the hospital.  We recognised a lot of the subtle details.  The fish tank outside of PICU - the NICU - familiar signs - the rooms in which the family conferences were held.  It was so familiar.  Some happy memories that collided with some of our most awful recollections.  Seeing an infant laying on the operating room table, was particularly difficult to watch as I remember that like it was yesterday.  It was like we had rewound the clock 8 years and were back in the Stollery.  It was that vivid.

It was also amazing to see an infant child featured.  To have this strike even closer to home this was a family from Manitoba, just like us, who had left one child at home to take their other child 1400 kms away in hopes of saving their life.  It would not be surprising that we could see this family at one of our transplant clinics here in Winnipeg.

Tough to Watch?

An unequivocal....YES!  It was very difficult to watch but very worthwhile.  It was particularly fascinating to see a family go through the donation process.  A side of the equation that we are not familiar with but what we always speculate and wonder about.  I am very impressed by these people who chose to go through the process of donating organs.  After all, if there is something to be learned in this documentary is the life and death nature of the organ donation process and the euphoric highs and devastating lows that are involved for both donor and recipient.  A roller coaster ride of emotions that we were fortunate enough to be the beneficiary.

What was Missing?

It is clear that the producers of this program focused exclusively on the moment of donation and the moment the organ is received.  I think they did an admirable job and packed an hour long program with as much as they could.

The issue we (Susan and I) keep coming back to is that there is a compelling story leading up to the need for a transplant and then a lifetime of effects to deal with after receiving the donated organ.  All of those who fall ill and require a transplant will undoubtedly go through some very tenuous circumstance to get to that point.  The organ recipients are the sickest of the sick and endure numerous treatments and interventions prior to ever being considered and listed for the transplant.  The transplant process is completely out of their control as they have no way to determine when that "elusive" call may come with an offer of the donated organ.  The physical and emotional impacts are profound and will be felt for years to come.  In our case, our transplant saved Russell's life.  It also changed us as parents.  We are not the same people we were before.  Russell also has to live with all of the rigours that come with maintaining a transplanted organ plus he also has to live with the effects of the heroic efforts that were performed just to get him to the point where he could receive his transplanted heart.  Many of these realities he is just learning about as he is just a young boy just learning about his embattled infancy.

Yes...transplant changes people and those who care for them.  Perhaps, the subject of another documentary.

It's Official! WRHA Names New Board

Today it became official.  I've been named to the board of the Winnipeg Regional Health Authority.  Something I would never have even considered only a few short years ago.

This is a daunting challenge for someone who has only recently been hurled into the role of caregiver.  This has been an amazing education to me as I have become an advocate for patient and family centred care (PFCC).  The WRHA and health care as a whole have many complex and daunting challenges to address.  Some may say the challenges are impossible...but they aren't.

The Rise of the E-Patient

Many may consider my appointment as a bit odd.  I am not a health care professional.  I do not work in a health care facility.  What many members of the public may not realize is the growing number of patients, caregivers, and patient families who are getting more involved in their own health care and in the health care system as a whole.  For people like me who are immersed in the health care process on an almost daily basis, we provide a unique experience and perspective to the health care debate.  Patients and families are gaining a sophisticated knowledge of the health care system with the proliferation of social media, online medical resources, and most importantly through peer support. For many of us getting involved is much needed therapy.  Many people who are frequent users of the health care system are now becoming "e-patients" (engaged - empowered - equipped - educated).  For us, there is no turning back.

Nothing about us Without Us

At the infancy of the "patient and family centred care" movement there were many groups formed to try to address patient concerns.  Patients came to a point where they were no longer happy being subjected to anything the health care system would deliver to them.  We often hear of patient advisory committees.  Carefully managed groups that in some cases have become successful and in other cases not.  I would assert that the reason that some of these groups have failed is simply for the reason that they were token groups with little to no impact.  As soon as committee members would realize their concerns and feedback would have no impact they would quickly step back from non-effective committees.  Patient/family time is precious and finite.  As a volunteer, if you see no benefit you quickly become disillusioned and withdraw.  This is very common.  On the other hand, groups that were successful were given a voice with decision makers and were given opportunities to have their message heard.  These opportunities have taken many forms that may have included strategic planning, patient centred design, development of health care policy, or simply sharing your patient story.  These groups have thrived and have begun to make inroads in health care.  Smart health care managers have seen the benefit of these groups and have embraced the PFCC mantra of "nothing about us without us."  It is these health leaders who have insisted on garnering input from patient experts.  However, this kind of engagement is not widespread.

Having had some success in getting the voice of the patient voice heard, I believe we are at a crossroads.  The crossroads of patients stepping away from patient advisory committees and becoming health care leaders.   I hope my appointment is one of those steps, but I know that I am not alone.  Patients and caregivers are taking leadership roles all across our country.  This is a natural progression and a very necessary one.

Respecting the Patient Story

For myself I need to remember this is not about me and my family's journey.  It is about the many people who use our health care system and what is best for those patients and their families.  All of our experiences are unique and different. As I have gotten to know other patient advocates i am well aware that there opinions differ from mine, as their experiences differ from mine.  How can I best represent such a diverse group?  Very simply I need to respect the "patient story."  That is the most daunting task that I have.  As I take on this role,  it is incumbent on me to listen to, and learn from, the patient experience and the patient story.

"SickKids VS; Undeniable" Battle On!!!!

Many years ago when Susan and I began the adoption process, we were fortunate to take some courses on adoption that were very useful in understanding the process and issues surrounding adoption.  We were also trained in the use of politically correct language as it relates to adoption.  Common phrases that we may hear is why did your “birth mom” give up her child for adoption.  In our course we learned that this is not appropriate terminology.  The correct thing to say is that a birth mom made an “adoption plan.”  When we heard this we agreed that it was more appropriate and didn't give it a second thought.  In the years since we often hear from family and friends that use the “give up” terminology.  This does not bother us because these are our family and friends and we know they have no ill intent.  After all, they didn't take the course!

Recently, SickKids in Toronto has made a promotional video entitled “SickKids vs Undeniable.”  Some folks within my circle of health care advocacy have expressed some concerns about the aggressive nature of the video.  Yes…the video is intense.  It shows battle scenes and is very aggressive in nature.  It sends a message of children battling their disease, such as cancer, liver disease, autism etc.  

SickKids VS: Undeniable - Watch the Video Here

How did I feel watching the video?  Honestly, I could completely relate to the chaotic, violent, and graphic nature of the content.  Keep in mind that my experience in health care is not common or ordinary.  I look at this video through that lens and my perception is very different than most.  There were times when we were in hospital and intensive care that it felt very much like the video portrays.  A sensory onslaught.  An onslaught that resembles the reality of our experience.  Keep in mind that many people are intimidated by the sights, smells, and experiences that are faced by very sick children, in critical care units, every day.  Signs above my son's bed would read “Skin Closed – Chest Open” coupled with a mass of wires and infusions.  Our reality was not pleasant in the least.  It was not only our child; it was a room full of children.  Some of the sickest children in Western Canada.  Yes, many times my wife and I would walk to the hospital to “do battle” and I recall specifically using those words.

Battle Metaphors

One of my favourite books is “Band of Brothers” by Stephen Ambrose.  It was also made into an HBO mini-series several years ago.  It is based on the World War 2 experiences of E Company of the American 506^th PIR.  It chronicles the experiences of a company of men from basic training to the completion of the war, in 1945.  Specifically, it shows the bond that forms between people as they face adversity together.  The title “Band of Brothers” comes from Shakespeare’s HenryV as the English King addresses his armies prior to the battle of Agincourt.  This quote echoed in my head many times as we camped beside my son’s bed in PICU and observed all of the chaos around us.  We were not alone but with our own “Band of Brothers” in that PICU.  Parents and children who sat on the brink of life.  We watched and observed as some families lost their battle while some had remarkable successes.  There was nothing fair or equitable about that environment.  We had conversations with Moms and Dads that only we could understand because we had been there.  The quote from Henry V became very real to me:

From this day to the ending of the world,
But we in it shall be remembered-
We few, we happy few, we band of brothers;
For he to-day that sheds his blood with me
Shall be my brother

-St Crispin’s Day Speech – Henry V

For many of us who have been through horrific medical experiences, with our children, we do share a common bond.  We have many shared experiences and our humour can be “dark” and probably not fit for public consumption.  We talk about when our children “coded” or when they had “unspeakable” procedures performed on them. A bond forms, and it is this bond between families that we found so important and why I am such a big supporter of peer support. To this day we still keep in touch with some of these families that we "went to war" with.

Watching the SickKids video sparked some of those memories for me.  I know that there are people who are taking exception to this video, and I do agree that it is edgy and graphic.  Some take exception to the use of “war” metaphors being used.  I understand their concern but I respectfully disagree.  We all cope in different ways and we should be giving families tools to cope with their situations and not taking coping mechanisms away.

For those of us who have been through some of the most horrifying experiences in health care.  I think we've earned the right to use any metaphor we want to.  I have on several occasions used the quote from Henry V, which I shared above, because that was something that resonated with me.  We all process these experiences differently.  As human beings we have been given the gift of emotions.  We can be compassionate, respectful, thankful, express sorrow, and yes we even get angry and aggressive.  We use our emotions to cope with many of life’s difficulties.  The problem is when we resort to only using only one or just a few of our emotions.  We need to find that balance. 

Why Make this Video?

I think the video from SickKids has a place and a specific purpose but it is also important to realize it’s limitations.  Yes, there are sometimes we need to muster up our courage, play heavy metal as loud as we can, and scream at the top of our lungs.  The SickKids video has that vibe.  It is also important to realize that at times we also need to be quiet, empathetic, respectful, and be reflective.   As I have done some reading on the video and where it has been used, I understand that it has been shown prior to a hockey game at Air Canada Centre in Toronto.  Probably an appropriate venue.  It also would not be appropriate to play it at a remembrance ceremony.  We need to use some common sense.  This video is certainly not for everyone and every venue.

I also wonder who the target market is for the video?  Several years ago, at a CAPHC/CFAN workshop one topic came up that I found very interesting.  How do we engage more fathers in health care.  Many of the people who volunteer on parent councils and committees tend to be female.  Getting Dads involved is a real issue.  Do you not think that the SickKids video is aimed at a male audience? I do.

I also think that making a “controversial” video is a clear marketing strategy.  It has certainly sparked a few conversations.  As of this morning the “SickKids VS: Undeniable” video has received 299K views.  The next most watched video is 171K and 21K respectively.  It is certainly garnering a lot of attention.  Perhaps that was the intent all along.

What Really Matters

As I started this blog I related an experience we had during our adoption experience.  How people use terminology every day that isn’t quite appropriate but because they don’t have our experience they don’t realize it is inappropriate.  In cases like this I choose to look at the intent of what they are trying to say and take the good out of the conversation.  I am concerned that some in the patient advocacy and health care ethics world are reading far too much into this video.  I don’t get a great deal of benefit in micro analyzing every visual in this video.  I think we as a society spend far too much time on issues of political correctness and far too little time on actually problem solving.  In my case I could identify with the video from our own experience.  It resonates.  I understand that others may not feel the same way.  That is the uniqueness of the patient experience.  The patient experience is unique for each one of us; that doesn't give us license to look down on someone else because their perception or experience is different than our own. 

The Doctor-Patient Relationship: Power Struggles

In my previous post I discussed the need in the modern health care system to re-invigorate the relationship between patient and the health care system.  This seems like a intuitive exercise but when you start examining the process, as is the case in most of health care, the problem becomes much more complex than many in the public may realize.

When we, as patients, go to the Doctor's office we entrust our health and well being to these professionals.  Patients need (and should demand) that the only interest the physician has is the well being of you, the patient.  The goal is to achieve the right care at the right time.  Little do many patients know is that the most recent trend in health care management is to place a little voice inside the physician's head that says "do you really need to do that test?"..."is that referral really necessary?" 

Question:  Do I want my Doctor to make decisions based on their best judgement regardless of the cost or consideration of health care resources?

 It is true, many patients do not want unnecessary services.  We don't want to spend any more time in the health care system than we need to.  The problem with this subversive message being placed inside the physician's head is that increasingly physicians are being asked to consider scarcity of resources when they make medical decisions.  

An Ontario physician, Shawn Whatley, makes several important points, in a recent blog post, as he considered the conflict that exists when physicians try to balance "Relationship vs Stewardship"

"With unlimited money, doctors can pretend to put their patient’s interests first and try to please society at the same time.  But at some point, doctors must choose: Do they do what’s best for the patient in front of them, or do they do what’s best for the community as a whole?"

This conflict becomes even more disconcerting for patients when you consider proposals for how health care is being managed.  In recent negotiations between the Ontario Medical Association (OMA) and the Ontario government the concept of "co-management" becomes a key component of potential cost reductions in the Ontario Medical system.

"co-management" of the physician services budget. which would allow the government and doctors "to work together to jointly identify savings, update fee codes and account for technological change." -  Canadian Press

Call me paranoid but co-management sounds a lot like collusion, as the "true" voice of the patient is not represented in this scenario.  In this scenario, I am sure that the Ontario government and the OMA both claim the moral high ground of representing the interests of patients.  The problem is that both groups have an inherent conflict of interest.  The OMA at it's core has a mandate to represent the interest of Ontario physicians.  Many times what is good for physicians is good for patients but that is not true 100% of the time.  The same goes for government.  The goal of any elected government is to get re-elected.  Are decisions made in government based on political expediency, which can have a negative impact on patients.  Yes.  This begs the question; who is truly representing the interest of the patient.  In reality; no one.  You are on your own.  

I think the question that patients really want to know is how does this affect me?  Dr Brian Goldman is an Emergency Physician in Toronto, who also hosts a radio program on CBC radio.  The title of which I think is very appropriate...White Coat, Black Art.  I have learned to understand that medicine is in many ways a "black art."  Physicians have to use their considerable skill and training but in many instances are reduced to using "intuition" and "gut feel."  With limited resources in health care and the pressure to do more with less I think physicians do an admirable job of putting the patient first but in my role as a hospital administrator I hear all to often where we could have done much more for that patient.  In closing I want to share one anecdotal story that illustrates my point:

Reality Check

When my wife, Susan, was referred to an obstetrician when she was pregnant with my son, Russell, we "lucked" out and were seen by a specialist in complex and high risk pregnancies.  At the time, Susan's pregnancy was normal but she was in her late 30's and so the Dr took some extra precautions with her.  Susan had a heart murmur that had been discovered years earlier.  Simple mitral valve regurgitation (or so we thought.)  A very common cardiac anomaly.  During a routine prenatal checkup our Doc paused for a moment.  It was a "thoughtful" pause.  In his words, he wanted to order a cardiac echo..."just cuz". That sounded like a flippant response.  He was being careful and covering all of his bases.  Could he have rationalized not ordering the echo?  Susan had previously had a cardiac echo, several years earlier, and at the time she had no profound cardiac issues.  An argument could have been made this test was unnecessary and an example of "waste."  It was as a result of that cardiac echo that Susan was diagnosed with cardiomyopathy.  A cardiomyopathy which one of its symptoms is arrhythmia and can cause sudden cardiac death.  This diagnosis also resulted in a referral to pediatric cardiology to perform a fetal echo on our unborn son.  In time, this referral also resulted in a diagnosis of cardiomyopathy in our son.  If it had not been for that "thoughtful moment" from our obstetrician we may never have found out about the congenital heart conditions that both Susan and Russell had.  The result of missing this diagnosis would likely have been catastrophic for one if not both of them.

Getting back to my original question.  Do I want the voice of a cost conscious bureaucrat in my Doctor's head, questioning whether a test is necessary or not?  Absolutely not.  I want my Doctor to be using their best judgement and ordering the tests that are necessary and not having to worry about arbitrary metrics.

The Doctor-Patient Relationship: It's Time to Talk

I may be dating myself a bit but when I was growing up, One of the staples on our TV growing up was Little House on the Prairie.  It is a classic that depicted much of the pioneering spirit that as someone who grew up in a rural prairie community could relate too.  As I have contemplated the many complexities of health care I recalled what health care may have looked like a 150 years ago around the time when Little House on the Prairie was situated.  Those who recall the show will remember the doctor who served Walnut Grove, Dr Baker.  Dr Baker would have practiced medicine in a much more simplistic manner than our health care system today. He would have been an integral part of the community, someone everyone knew and respected.  His medical practice would have been based on the fundamental building block, of health care, the doctor-patient relationship.  A relationship that has been marginalized by modern medicine by encapsulating the relationship into 15 minute billable increments.  In today's world we have built a massive industrialized health care complex that has separated the patient and doctor resulting in a system which has lost sight of the needs of the individual patient.  Why?

Dr Hiram Baker as played by actor Kevin Hagen on Little House on the Prairie

I was involved in Patient and Family Centred care long before I even knew what those words meant. Because the complexity of the health care challenges, our family, faced we had frequent interactions with our health care team.  Over time, we communicated freely and easily with our doctors and nurses and developed a relationship with them.  That relationship spawned many benefits.  Mutual trust, understanding, and openness were amazing by products of actually getting to "know" our care team.  They also got to know us as human beings (not just a condition) which made immense improvements to how we were cared for.  I had never seen this level of cooperation before and it made me stop and think..."why doesn't all of health care work this way."  There is a very simple answer to that.  No one bothers to stop and talk to the patient.

Since the days of Doc Baker and 19th century technology the health care system has changed and evolved.  Hospitals, equipment, and the technology of health care are truly marvels of the modern world.  However, all of this change has come about with only occasional input from the people who require the health care system.  The patient.  We have created a leviathan in the health care complex that has forgotten it's roots.  The basic interaction between doctor and patient.

Patient Centred Design: Not so much

A good example of this was a workshop that i participated in a few years ago.  I was the sole patient representative of a team that was tasked with creating a process map of this particular hospital's Emergency Room.  We spent a day diligently identifying all of the key processes and decision points.  The day was nearly done when much to my surprise not once in the discussion did we ever discuss how each process and decision point was communicated with the family.  Yes, we discussed the impact to the patient but never identified how to convey the information with the patient.  We mapped the entire process WITHOUT any patient interaction built into the process.  WOW!

If you thought these kinds of "errors of omission" are uncommon you would be wrong.  I had a chance to share my experience about our ER process, devoid of any patient interaction, with a senior executive from Alberta Health Services.  When I shared the story I was interrupted by laughter.  Ironically, this executive had just been through a similar exercise when going through a planning meeting related to the renovation of an ER.  As part of the planning process the project team identified all of the key groups that would be impacted by this ER re-design.  Just as in my experience the whole process was completed without identifying the "patient" as a stakeholder in the project.

We have many systems within health care that were never designed for the easy access of patients.  Patients have far too often been a footnote in health care system design, an inconvenient necessity.  I am fortunate in the sense that I know enough about health care that i usually know the processes and if not, I usually know who to ask.  For those who are not familiar with how to navigate health care; the learning curve is steep.  I gained a significant amount of my knowledge having been exposed to the hospital day after day for 6 months.  Every day...day in and day out.  I learned out of necessity.  The challenge is how do we integrate patients into the health care system in a much more efficient and timely manner?  Not everyone should have to go through months and months of hospitalization to get the level of access that we do.  How do we orient that patient as soon as they walk into a clinic or the emergency room?  How do we open the lines of communication?

Today we have many resources that Doc Baker in Little House in the Prairie never had.  We have phenomenally competent people working in health care.  When I talk about the doctor-patient relationship I am talking more generically about health care practitioners in general  Not just Doctors.  Nurses and clinicians are very capable of assisting and communicating with the patient.  We also have many technological changes that can facilitate communication.  Why are we not picking up the phone and talking to patients; or better yet why are we not emailing and texting?

Getting Back to Basics

The most important thing we need to remember when we design new systems, or try to correct existing ones, is the basics of what health care is all about.  The basic doctor-patient relationship that was practiced many years before MRI, nuclear medicine, and open heart surgeries.  Patient engagement is not implemented by being part of a committee or an advisory council.  Engagement begins when the patient walks through the door of a health care facility.  By showing up, the patient has already shown that they are engaged at some level.  The patient did not show up to be "triaged" or to be on a "wait" list; they came for some form of treatment.  They came in to have someone explain and walk them through the process.  We need to remember the human element of health care and establish these relationships.  It is only by establishing these relationships that we will learn why the patient is there and what they are looking for.  When we understand what the patient is asking for then we can begin to treat them.  It's time to talk.

Patient Centred Care is not about "Feel Good" Experiences

Today is an emotional day.  Oct 3rd brings back a lot of memories both good and bad.  In addition to being Susan and mine wedding anniversary it is also the the anniversary of Russell being medivac'd to Edmonton.  This day still holds a lot of meaning and there are so many reminders that bring us back to that moment, as if it was yesterday.  Probably the most horrific 24-36 hours we have experienced.

Russell survived that night and the following 6 months in hospital.  The one thing that sticks in my mind is why we took Russell to the Emergency Room on that day.  There was nothing that was going on with him that was alarming or even profound.  As many times as we tell this story the only way we could have described Russell's health that evening was that he was a "little off."  So why did we take him to the hospital?  The reason likely goes back to the day we got his diagnosis of his heart condition only two months earlier.  Literally we had the "fear of God" placed into us on that day and believe me; that conversation has stuck with us to this day.

We received Russell's diagnosis of Non compaction Cardiomyopathy in Mid - August.  Russell was only a couple of weeks old.  We knew there was a genetic possibility that Russell could have inherited Susan congenital heart condition.  If he had, we assumed he may never have to deal with the symptoms until he was an adult and possibly not until he was into his 30's. This is the pattern that the condition had taken with Susan and her Dad.  Adult onset.  Something to worry about in the future.

Perhaps this is why on the morning that we attended the Pediatric Cardiology clinic we may have had a bit of a cavalier attitude to the whole process.  I remember going through the whole routine.  height, weight, etc.  Then we had the echo.  Again, a process that we were familiar with.  Then we were ushered into one of the clinic rooms to wait for our cardiologist.

This is where our visit departed from the norm.  Our doctor came in and started asking the usual questions.  I don't remember the specifics but I remember him explaining that he saw "something" on the echo.  He started talking to us about a version of cardiomyopathy that we had never heard of..."Non-compaction."  We were confused, this was not what Susan had...this didn't seem to make sense and the Doctor himself didn't seem sure of what he saw.  The next phase of the discussion was unlike anything I have ever encountered.  The Doctor suggested that we do a second echo and have one of his colleagues take a look.  This was strange and a whole lot unnerving.  The sense of panic was starting to creep in.  We did the echo and had a second cardiologist look at Russell's heart.  He confirmed the "Non-Compaction" diagnosis.  We were stunned.

The next part of our conversation with our cardiologist was not pleasant.  He started explaining what non-compaction was.  He started discussing the condition and prescribed some medications.  The gravity of the situation was starting to sink in.  This was serious.  The Doctor went on about what this condition could mean and what they can do about it.  In that conversation many hopes and dreams for our 3 week old son started to come to a screeching halt.  The Doctor went on, he pushed until he got a reaction.  When Susan started to well up with tears he stopped.  At that point he knew we understood.  Some may call it "cruel" or even "mean" but he pushed us until we understood the seriousness of what we were dealing with.  We walked out of that clinic appointment feeling like we had been hit by a bus.  This would NOT have been a good time to do a patient satisfaction survey.

We walked out of that appointment with a fist full of prescriptions and a date to come to be admitted to the hospital in the next week or so to start Russell on Captopril.  If that went well, we would then be booked for another stay at the hospital to start Russell on Carvedilol.  Our life as we knew it had ended but we weren't ready to accept that yet.

The next month and a half went by without event.  Our two stays in hospital in September of 2008 were uneventful and actually boring.  Russell, on the other hand, was doing great.  He was eating, and gaining weight and doing all the things a normal baby would do.  We were beginning to think that the dire warnings that we had received were unwarranted and that our Doctors had scared the life out of us for no reason.  After all our son looked absolutely perfect.

Then October 2nd came.  Russell stopped eating.  This was unusual.  He had trouble keeping food down the night before and now we couldn't interest him in any food at all.  Susan observed that his colour didn't seem right either.  Nothing profound but still he didn't seem himself.

We paged Cardiology.  We got a Doctor on the phone who had actually seen Russell in clinic and was familiar with him.  He assured us we weren't crazy and he suggested to bring Russell into Children;s Emerg and have the ER docs check him out.  In his words "if it was just a kid thing; they would send us home in a few hours" and it would be no big deal. It turned out to be a VERY big deal.

We arrived at Children's Emerg late in the evening on Oct 2nd.  We felt silly being there as Russell's demeanour and his colour had improved.  It was in Emergency only a few hours later when Russell went into cardiogenic shock and touched off a night of him being in the resuscitation room clinging to life.

Thinking about that night 8 years later we are still so thankful for the Doctors who scared us enough to take even very subtle symptoms seriously.  The message in which they were delivered you could describe as harsh but it was the right information at the right time and that is what matters.  Our Doctors also did something else.  They showed us their humility and openness.  We had one cardiologist who put his ego aside and let a colleague examine our son to confirm his diagnosis.  I am sure this happens in other situations but these Doctors went through this process with us in the room and with our full knowledge.  There actions conveyed a message that they didn't have all the answers and that honesty was refreshing.  We received a message loud and clear that these people were being open and honest and that was how we were going to establish this relationship.  In subsequent visits, we were shown emails from other specialists at other hospitals.  Doctors with who we were consulting with and seeking out the best information on this rare condition.

It was this openness and the willingness of our Doctors to deal with difficult issues that lead us to page cardiology, on the evening of October 2nd.  We felt comfortable doing it.  We didn't feel like we were using up valuable health care resources.  The reality was that we could have easily have said to ourselves..."let's sleep on it and see what Russell is like in the morning."  If we had rationalised in such a way; Russell would never have seen the next morning.  If there had been any barrier for us in contacting our Doctor, chances are, we wouldn't have.  That is why access to health care is so critically important.

This is why I am so frustrated by our health care system.  There are so many road blocks that exist for patients to access the system.  This goes far beyond wait times and structural barriers.  Many patients are made to feel that they are inconveniencing the system when they seek help for "small" issues.  There are whole campaigns, in health care, that are dedicated to forcing the patient to self evaluate and "choose wisely" before seeking care.  The general public should NOT be asked to self-diagnose.  That's bad medicine.  That is a subtle form of health care rationing and it is unacceptable.

Because of the openness we have with Russell's doctors we routinely ask questions via phone and email.  It is this level of access that has eliminated the need for many clinic visits and emergency room visits.  Access to accurate information and knowledgeable people is the most efficient way of managing health care and it puts the interest of the patient first.  Putting "patients first" or being "patient centred" seems to be a catch phrase nowadays, which is unfortunate because putting patients first is how the health care system needs to be re-organized.  It is not about making the public feel good it is about saving people's lives by listening and acting in collaboration with the patient.

My son's needs were put first 8 years ago.  Our Doctors put "his" needs first; even ahead of the hurt feelings of his parents.  Putting him first saved his life.  Sometimes we need to be forced to face harsh reality.  That process can be difficult and hurtful...but it is so necessary.