Saturday, January 12, 2019

A New Year - All New Challenges

A few years ago i remember a conversation I had with another parent who also has a son with a heart transplant.  I recall him saying how every once in a while, before heading to bed, he would go to his son's room and pause for a few moments.  In his mind he would reflect on the entire transplant experience and think to himself. "Wow!"

On December 30th, we celebrated Russell's 10th Transplantiversary and when we think about all that has transpired in the last 10 year...we have our own "wow" moment. 

It's nice that our anniversary of Russell's transplant coincides with the dawning of the New Year because it feels like we hit the reset button on a few different levels.

The funny thing about leading medically complex lives is that just when you figure things are under control and that things are heading the right direction.  Something usually happens as we hit the brick wall of reality.  We just have to roll with the punches and move on.

This week was a great example of that.  A great example of the highs and lows that we experience.  In this week alone, we started a reading program, did blood work, got called into the school twice, had a nephrology appointment,  an appointment with our family doc, started two new meds, discontinued another, we have a speech therapy session this afternoon, a few other school activities, and music lessons.  Somewhere in there I managed to go to work and get a multi million dollar project approved.  This was one week, and next week we will do it all over again.

So, as we approach 2019, we have many great aspirations for the year but we know that many things will happen that blow up a lot of our plans.  That is just the way it goes.

2019, will bring lots of new challenges, but it is important to realize how far we have come.  It is really interesting to talk to Russell about his medical experiences.  Now that he is a little older and has more understanding of his situation.  He has made huge strides this year in understanding his own medical reality.  His perspective is so different than mine or his Mom's.  Every negative experience he has ever had related to his health has been related to his transplant.  Why does he have to get poked so often and why does he have all of these appointments with doctors.  All because of his transplant.  When you think of his transplant through his eyes you begin to understand why he isn't such a huge fan of his transplant.

Over the past year, Russell has been asking a lot more questions about his medical reality.  We talk about his medications.  We are teaching him their names and what they do.  It requires some creativity to explain what happens if he were to stop taking his anti-rejection medications.  Looking at life through the eyes of a 10 year old is an interesting experience.  No doubt there will be many interesting questions yet to come.

It is also interesting to teach him some independence.  At some point in time Russell will have to learn how to be his own advocate.  Even now, he does his frequent trips for blood work almost completely on his own.  All I do is provide transportation and our medical card.

As much progress as Russell has made this year, we have seen a significant decline in Susan's health.  Without getting into the details and lengthy explanations.  It isn't good and it is unlikely to get better.  Failing hearts don't get better.  The only thing you can do is trying to minimize the damage.  This is my own opinion here, but I think we are at a tipping point.  I think I know what is ahead, just a matter of convincing Susan's doctors of that.

This WILL be an interesting year.  In spite of all of the challenges - we will do everything we can to enjoy every moment.  If there is anything we have learned these past ten years is that every moment is a gift and to do everything we can to enjoy the moments we have together.

 "For I know the plans I have for you - this is the Lord's declaration - plans for your well being, not for disaster, to give you a future and a hope."
- Jeremiah 29:11  CSB              

Monday, December 24, 2018

Merry Christmas...Maybe...Maybe Not

It's Christmas Eve.

All of the Christmas concerts are over and all of the shopping is done.

I decided to go into work this morning as I knew it would be a quiet morning.  The drive in to work was almost enjoyable.  No school buses on the road and noticeably less traffic.  Being less hectic you get to enjoy the drive a little more - as it is still dark when I head to work I could enjoy the Christmas lights and the holiday decorations.

Hoddinott Road, Birds Hill, Manitoba

As I had time to think about the season I recalled an email from one of my daughter's teachers.  A note of thanks sent to parents.  With Christmas, the school supports many initiatives to support those less fortunate in our community.  This message stuck out as one of the groups they were supporting was those who are going to be in hospital over Christmas.  I had felt compelled to say a "thank you" as 10 years ago - that was exactly what we were facing.  A Christmas in hospital.

As I have been working on my book over the past year, I had to re-live that Christmas.  Susan and I have had some interesting discussion about what that Christmas was like.  In same ways it was a great time.  Russell had bounced back from a tumultuous month and half in the ICU.  He had been through one open heart surgery to implant his Berlin Heart and was making spectacular progress on this "experimental" device...but there were many other things going on that were not quite so cheery.

Having been listed for a heart transplant since mid October, we knew we had some challenging days ahead of us.

We were hoping for a bit of a reprieve at Christmas.  A chance to concentrate on some other things other than "hospital world."  Knowing we could be in hospital for months we had a lot of time to prepare for a Christmas in hospital. Our biggest goal was flying Nicole from Winnipeg to Edmonton to be with us so that all four of us could be together at Christmas.  Anticipation was a nice distraction.  Having her spend time with us was even better.

What became a hallmark of our stay in hospital, once we had a moment of success or just when the pressure seem to ease off - something would happen that slammed us back into reality.

In early December, Russell developed a GI bleed.  This resulted in a return trip to the PICU to manage the situation and to get blood transfusions.  With that disaster averted we also got word that one of our little friends in hospital got their heart.  There were three of us in the same room who were all listed for transplants.  This left the two of us to wait.  That was frustrating but we accepted it as part of the process.  Surely, our turn would come...hopefully soon.

Russell was the highest priority transplant listing as he was on the Berlin Heart which was considered to be on life support.  We thought the transplant would come soon - but it didn't - the days and weeks slipped by.

During this time we did get to bask in the attention of being a Berlin Heart patient.  The staff seemed to take a lot of satisfaction in how well Russell was doing.  He was growing, gaining weight, and thriving.  This was great and it did give us some comfort but during rounds I still recall our Berlin Heart Doc urging the team not to be complacent.  He stated..."this is the time when something bad happens...we pat ourselves on the back...when we need to be vigilant"  ... he continued "we have to realize that we are only one blood clot or one hemorrhage away from disaster!"  He was right - and we were so thankful that he said it because he was saying exactly what we were thinking.

It seemed we couldn't escape our grim reality.  The final insult took place on December 23rd.  When we went to the hospital Russell was undergoing a Cardiac Echo.  These were not unusual events.  In fact we had become used to this constant attention.  However, we found out later why Russell was undergoing this test.  We found out that the little girl in the bed next to Russell was receiving her heart transplant...which ended up taking place on Christmas Eve.  The reason why the Echo was done was to measure Russell's heart.  Russell was at a higher status level than the little girl who eventually got the donor heart.  As we found our later, not one Echo was performed but two.  The cardiologist on service ordered a second Echo to be absolutely sure.  He performed the Echo himself.  Russell missed this heart by the smallest of margins.  It was slightly too large for him

This news crushed us.  There would be no Christmas miracle for us.  We would have to wait.

There were many people who made extraordinary efforts to make our Christmas Merry...but it wasn't to be.

...but there was one Christmas Elf who arrived on Christmas Eve who came by to visit us.  David - Russell's Berlin Heart brother.  David was also on A Berlin Heart and also shared Russell's celebrity status.  David was a young man who barely qualified to be in the pediatric program as he was in his late teens.

I don't know why he came to visit us on Christmas Eve...but he did.  We took a walk with him and we visited for a couple of hours.  A couple of hours that we desperately needed.  David had his own harrowing medical story and in a few months would also be listed for and receive a heart transplant.  It was perfect timing that led someone who knew exactly what we were facing to come and spend time with us.

For everyone, we all have unique memories of Christmas.  Good and bad memories.  For us, this was a Christmas we hoped to forget.  Our only thought was to get home and celebrate our next Christmas at home.  Thankfully, we have had 10 far better Christmases than our hospital Christmas.  Little did we know it - but as dejected as we were - our Christmas miracle was already in the works.  Russell received his heart transplant only 5 days later.  That was the beginning of our journey home.

For those who are working in hospitals we thank you.  For those unlucky enough to be a patient in hospital this Christmas, we hope you can have a Merry Christmas.  We hope you get to enjoy many more Christmases at home in the future.

Saturday, December 22, 2018

The Heart Cath Aftermath - A Matter of Trust

It has been over a month since Russell's Heart Catheterization.  It has been a crazy busy month as December usually is so I haven't had a lot of time for writing.  It doesn't mean I haven't been thinking about our experience.  I have....and one theme keeps percolating to the top.  The whole topic of "trust" and how it influenced our experience on that very long day in hospital.

How important is "Trust" when working with your health care provider?

I strongly believe that to fundamentally improve health care we need to enable positive relationships between patients and providers.  You cannot have that relationship without "trust."  Trust in the health care system is a massive issue.

When Susan and I took Russell to his Heart Catheterization a few weeks ago, we had a significant amount of anxiety.  Not due to fear of the unknown but a fear of the known.  Russell has done this surgical procedure numerous times before.  As a cardiac patient herself, Susan, has also been through this.  We know exactly what it is all about and what to expect.  This has been an awful experience for us in the past.  Not that there was anything done incorrectly or that the procedure wasn't successful but our path through the day had been unnecessarily stressful and fraught with many frustrations and miscommunications.

The bottom line is...our son is poked and prodded (for the millionth time) and no matter how prepared we are we always end up having at least one or two surprises.  To be bluntly honest we are completely sick and tired of subjecting Russell to this.  Probably, not the most positive of mindsets heading into the day.  To say we are skeptical of this process would be an understatement.

Regardless, of our misgivings - we signed up for the transplant roller coaster ten years ago and we can't exactly back out now.

Without getting into all of the details, we had to deal with all of the usual Cath Day silliness.  Confusion on med orders.  Russell's treatment plan being discussed at the nurses station without us - while we were within earshot.  The usual ridiculously long wait with a son who cannot eat (NPO) and is essentially starving.  The only thing that saved us was smartphones and video games.

Finally, we get down to the Cath Lab where we met the anesthesiologist and the anesthesiology fellow.  Both of which we had never met before.  Having done this several times we know most of the staff but these ones were knew to us so the apprehension got ratcheted up a notch.  They were both friendly and receptive until there was some difference of opinion in sedation strategy.  It was pretty clear to us that our carefully pre-discussed plan was being thrown out the window.  There were some concerned looks from both sides of this "discussion."  Anxiety cranked up another notch.

As we waited for our cardiologist to arrive.  We did the pre-op rituals of signing papers and doing the "consent" thing.  The nurse clinician was also a new face to us.  We've had a couple of retirements in our cardiology clinic and this was one of the new nurses.  Again, not unusual to be seeing someone new but it would have been nice to see a familiar face.  Then she began explaining the procedure to us.  A well rehearsed monologue that we knew well.  Except there were a couple of things that she explained that they were going to be doing that we questioned.  Again, this is where knowing the routine worked against us.  We knew some of the nuances of the procedure and we were being told some things that were new to us and had not been discussed.  Anxiety-once again-amped up a notch.

The funny thing in all of this stress for two parents who were about ready to explode - Russell was calm and joyfully playing video games.  At least some of our preparation seemed to be working with him.  All the more reason to realize that you are not treating the patient - but the whole family.

Then our cardiologist showed up.  Finally - a familiar face.

Thinking back now it is almost comical.  As soon as he showed up the stress vanished.  It was like air being let our of a tire.  Finally, someone was here who we knew and we trusted.

Our Doc, after saying some initial "hellos", disappeared into the cath lab and after a few minutes re-appeared.  He came and sat down with us and immediately started talking to us about what we have been up to.  We had not done a Cath for two years so we did have some catching up to do.  We have a long history with this Doc.  He was the Doc who was on service the night Russell crashed in Emerg ten years ago.  To say we have some history is an understatement.

With our visit out of the way our Doc began to explain the game plan for the day.  He mentioned several things that we were not aware of and explained he explained the reasoning behind them.  The anxiety was completely gone as we knew Russell was being taken care of by someone we trusted and someone who knew all of Russell's history without reading a chart.

The other thing that we noticed after this point was that everyone seemed more at ease with us after "our Doc" arrived.  The anesthesiology team who was quite skeptical of us, at first, were now more at ease with us - even their body language changed. They explained their strategy in more detail, and with more respect for our knowledge.  The cloud of mistrust was gone and the pieces fell into place.

Russell took a swig of a pre-sedation cocktail (Midazolam & Ketamine) and they rolled him into the Cath Lab.  The meds worked quickly.  Russell was very mellow when they started the IV.  Susan stayed with him the whole time.  It went remarkably smoothly.  While Susan was with Russell, I watched from the foot of the bed where I continued our conversation with our Cardiologist.

Russell and Susan in the Cath Lab.  When the sedation plan works right it allows a Mom to be a "Mom"  A few years ago there would have been about 6 people pinning Russell down and trying to get an IV started.  This is a huge improvement.

With Russell now completely out, we departed and headed to the cafeteria.  After a quick bite to eat we headed back to the cath lab to wait.  To our surprise one of the nurses came out and told us they were nearly complete.  This was remarkably quick.  In a few minutes we were wheeling Russell upstairs to the PACU.  Russell was still quite out of it while we transported him.

As we reached the doors of the PACU we were unceremoniously stopped and asked to wait in the waiting area.  Susan and I were noticeably irritated and we shared our opinion that it was our intent that we should be the first people Russell sees when he wakes up.  Our requests were ignored and we were relegated to the waiting room.  I was so frustrated - I thought this policy of banishing parents from the PACU had been eliminated.  So frustrating.  I think one of the things that frustrates me most about this policy is that I’ve never been given good rationale for this.  Trust me - I’ve heard them all.

What was even more frustrating is that they made us wait more than 90 minutes before letting us into the PACU to see Russell.  As the PACU was almost empty when we were let in I can only assume that they were waiting for Russell to wake up before letting us in.  Sepcifically what we didn't want to have happen.  I guess they don’t understand the torture that they put parents through by being separated from their children.  We assumed Russell was fine but when we are separated like that your mind wanders and imagines all kinds of things going on.  When you have witnessed bad things happen in recovery, in the past, the fears we experience are not unfounded.

Fortunately, after we were finally let in - we found Russell in a very calm and relaxed state.  This has not been the case in the past and it was nice to see him calm.  The sedation plan had worked very well.

The rest of our stay was uneventful and the initial results of the test were positive as well.   All things considered it was a very good experience...with some notable exception.

What I took away from the day was how much “trust” played a role in our anxiety.  Surgical procedures are not pleasant but they are necessary and something we cannot avoid.  There will always be some anxiety.  I got the feeling that some of our team may not understand how stressed we get during these procedures.  After all, we have done these things so many times we should be used to them by now.  To be honest, we will never get used to them.

I was also  amazed how upset and frustrated we got when we felt we weren’t being understood or listened to.  It was also interesting how we reacted when a person showed up who we knew and trusted - how our stress simply vanished.  Trust is such a huge issue.  I am sorry, but just because you have RN or MD behind your name does not mean we will trust you.  Trust is built on a relationship.  If you don’t know us or make any attempt to know us we won’t trust you.  Even a very simple statement can build trust.  A comment like “we are going to take very good care of your son today” can make a difference.  We would assume that is a given but it makes a difference to say it out loud.

The other point I wanted to make was how parents learn to read between the lines and use intuition to gauge what their care team is all about.  I think Susan and I have become very sensitive to reading body language and tone of voice.  We know when we aren't being told the "full" story.  We know when our input is being dismissed.  We have been at this for a lot of years and we have developed a keen sense of detecting when something isn't right.  When you spend hours waiting and observing you learn how to read nuance.  You analyze every word and facial expression.  It is all part of being in the health care pressure cooker and I don't think many health care providers fully understand how much analysis is being done.  This is why more communication is needed and not less.  If you aren't talking to patients and informing them they will draw their own conclusions based on incomplete information.  Do you really want them doing that?  If not.  Then talk to them! It is the very beginning of building trust.

Sunday, November 18, 2018

Heart Cath Tomorrow - Yay Us!

It was the night before the Heart Cath 
and all through the house 
not a creature was stirring
 except for Russell:
 who was killing zombies on Roblox.

Yes..tomorrow is Russell's Heart Catheterization.  Not a big deal you might think.  We've done this many times before, but with Russell, nothing is ever straight forward or simple.  In the past, we have had some horrendous experiences.  Anxiety stemming from severe medical trauma is nothing to ever be taken lightly.

It is a day surgical procedure to check coronaries and pressures in the heart.  It's all part of the protocol that a child with a heart transplant has to endure.  He has to undergo full anesthetic and the procedure itself takes a couple of hours.  He is required to stay in hospital for 6 hours following the procedure - so we will have a very long day.

It seems simple... just a few hours...but it's not.

The biggest complication is that we are working with a 10 year old who is VERY aware of what is going on.  He knows what is coming.  He's done this before.

This process started several weeks ago as we always start with a visit to our pediatrician who has to do an assessment and forward this on to the cardiology clinic to ensure Russell is healthy and that nothing has changed that would prevent him from having the procedure.  With driving and waiting this ends up killing half a day.

To try to manage Russell's fear and anxiety (which has been well earned) we have sought professional help.  We are trying to prevent a melt down which could actually put Russell's safety at risk.  Because we will have to do this procedure again we want to get to the point where Russell can cope better with this procedure.

We got some excellent advice and developed what I call his pain plan.  I have listed it below.  It is tailored to Russell's specific needs but I thought some of the ideas may be helpful, to other parents, so I thought it was worth posting.

When we went to the Pre Admit Clinic (PAC) on Friday.  (Another half day encounter.) we presented the plan to our nurse, child life specialist, and our anesthesiologist.  They were appreciative but none of them wanted to actually physically take the document.  It was as if they might catch something, or possibly take some responsibility for what was contained in the document.  In spite of the curious response we were able to discuss some of the concepts and the input was well received.  It also sparked some good discussion.  Mission accomplished.

The funny thing about the PAC is that the people we saw on Friday will not be the people we see tomorrow.  We are depending on the notes in the chart that document our requests being read by the day surgery team.  I'm not holding my breath.

It is likely that all of our discussion will have to be re-done tomorrow as any time we deviate from the standard protocol it touches off panic and confusion.  Been there....done that.

The one component that no one thinks of is the stress that this puts on the parents.  The thought of putting Russell through another experience like this sickens us.  We know it is necessary.  We know everyone will do their best...but we are so done with this.  I'm wondering if it is actually getting harder to endure.  We are completely finished with seeing our son poked and prodded.  So traumatized by this that it is definitely taking its toll on us.  The net effect means parents who are compromised in their role as advocates and caregivers for their son.  It is a vicious circle.

So tomorrow, we will suck it up, and get it done.  Just like we always have.

Until next time.

Saturday, October 27, 2018

Who Is Running Primary Care?

Who is really at the centre of health care?

Last month I was given the privilege of speaking to the Canadian College of Family Physicians in Toronto.  I say “privilege” in the most genuine sense.  The amount of intellectual horsepower that was sitting in that room was immense and a little daunting.  I know many will find this hard to believe, but I don’t like speaking to large groups.  I get the normal nervousness, that many experience, and then afterward I spend an eternity picking apart my presentation and how I could have said things more succinctly and hoping I didn’t say anything inappropriate or offensive. 

Patients don’t get a lot of time to speak to health care leaders so I feel an immense pressure to “make it count.”  This pressure also contributes to the anxiety when I speak.  However, this is why, when I speak I try to craft a specific message into the story that I tell.  A couple of specific points that the audience can take with them. 

After my presentation, at the conference, I was able to take my seat for a few moments and as is my habit I escaped the room for a moment to collect my thoughts and recover.  After nearly ten years of doing this it still takes an emotional toll on me to share our story.  Every time I tell our story I relive many of those moments again and again.  This is why it is important for me to spend some time alone after I speak.  A few moments to take a few deep breaths and perhaps pray a prayer of thanks for my family, who inspire me every day.

As I wandered through the concourse outside of the conference room, I headed for a coffee urn to indulge in some caffeine therapy.  I was soon met by one of the conference participants who introduced himself as Dr James Mold, who turns out to be an American physician and a guru on Primary Care Networks.  He approached me and by the look on his face I could tell he had a lot of questions.  It was clear to me that he was puzzled by some of the terminology I had used.  He thought it was interesting that a clearly identified myself as a “caregiver” and not a “patient.”  In the conference materials my slot was clearly entitled “a patient story” and that is one of the first things I address when I speak is that I am not a patient.  This seemed to intrigue him.

He also asked me a question that I thought was very interesting.  In my presentation I show an eco-map.  A snapshot of my family’s health care environment and the spider web of interactions we have with the many professionals that form our support team.  A team that now extends beyond the health care world.

My eco-map clearly shows our family at the centre of a hub that connects all of these people/clinics/organizations that play a role in supporting us.  Dr Mold took a great interest in my observation of how we integrate into this web that I had illustrated.  He asked me a very pointed question. 

“What would it take to change that map; to take your family out of the centre of that picture and have your family physician take on that role?” 

This understanding of how health care should be coordinated is not uncommon.  I have been told very often that our family physician’s role is to coordinate our care.  The term “quarterback” is often used.  In text book terms the family physician should be coordinating our medical care.  They should be orchestrating the process and be a central point of contact.  Sounds reasonable and logical.

I’m not sure my response to Dr Mold was exactly what he was looking for.  I clearly stated to him that I really didn’t think it was practical or even possible for that to occur.  Even under the most ideal circumstances.  We are just too complex.  In addition, much of the coordination that we are now involved in goes beyond the health care system and into other facets of our lives such as the educational system and social groups we are involved in.  

Because of our complex health situation, it makes every component of our lives more complicated requiring a great deal more planning and coordination.  The specific kind of “quarterbacking” we require goes far beyond the role of a family physician can offer.  Don’t get me wrong, I believe we have some great primary care physicians but they are limited, to what they can do, by their office walls.  We (as parents and caregivers) are ultimately responsible for executing the plan.  The plan may be developed in the Doctor’s office but we (as parents) are tasked with executing the plan.

Dr Mold is obviously a bright guy and he is certainly not alone in his opinion.  However, I found his perception of what families have to deal with quite surprising.  The reality is that family physicians lack the resources to effectively support families on a variety of fronts.  The scope of what we need is just to broad.  This is one of the takeaways that I took from our discussion.  Doctors really don’t understand what we go through on a daily basis.  Some of the very basic life situations that we encounter multiple times a day, because we are medically complex.  This is why patient stories are so important from the standpoint of learning and mutual understanding.

When Susan and I brought Russell home, after being in hospital for six months, we had one goal in mind.  To try to get back to normal.  We clung to anything that seemed ordinary or things that other families would be doing.  One of the hardest hurdles we had to overcome was the realization that normal was gone forever.  We would never be the same.  That was a very bitter pill to swallow.  Every day at 8:00 AM and at 8:00 PM we would have to give medications.  Bed time became Med Time.  There was no turning back.  We were reminded that we were no longer normal multiple times a day.

Over the next few months we had to learn to accept our new reality and develop strategies to cope with every curveball life threw at us.  Having been immersed in the acute care environment we now had to learn how to access and utilize primary care.  Our Family Doc and our Pediatrician also had to learn to deal with us.  There was a steep learning curve for all of us.  Russell is the only heart transplant patient in our pediatrician’s practice.  She learned right along with us.  There were many discoveries that we made together.  Our family Doc was no different.  This became abundantly clear to me when I started to explain some of Russell’s history to him and I would talk about his Berlin Heart and ECMO and he had to stop me and he flat out told me “I have no idea what you are talking about.”  That was an eye opener.

Although our adjustment to the “new normal” was excruciatingly difficult it was a process we had to go through.  We learned over the years how to work with our Primary Care Doctors but the funny thing is that there was never any illusion of who was in charge.  We were.  We (Susan and I) had to go to a variety of appointments and transfer information from one clinic to another.  We had to find child care and explain what having an immune compromised child entails.  We were the ones who had to prepare for the first day of school and explain to the school the ramifications of being a transplant kid.  No Doctor is going to do that.

Our Doctors have been a great source of information and support for us.  Note that I said…”support.”  They do not lead this process.  We do.  When we go to a medical appointments both of us try to attend to ensure we retain the maximum amount of information.  Information that is key for us to navigate all aspects of our lives.  A great deal of what we have done has been about learning.  Not only to understand how to manage our medical conditions but also to manage life.  How to explain complex medical concepts to family members, babysitters, and school teachers.  The process never stops.

I do take some exception to the concept of primary care physicians “quarterbacking” our health care.  I speculate that perhaps what we are dealing with is latent paternalism that exists in the medical field.  The need for Docs to feel like they are in charge.  A myth that was dispelled for us very early in our medical journey.  In hospital, our PICU nurses & docs reminded us that they weren’t in control of the situation.  It was the 10 week old baby who was lying underneath a myriad of wires and tubes who was really in charge.

The last thing that I would ever want to do is to diminish the importance of the primary care physician, in fact I believe the opposite.  We need to start having realistic expectations so that we can maximize the expertise of these essential health care providers.  We need to emphasize the critical support role that these physicians can provide so that patient, families, and caregivers can be empowered to get through the challenges of daily living without fear and isolation.  As one of our ER nurses stated in scolding some of her colleagues…”Dad is here…he is a resource…use him!”  Yes, parents have some expertise but we are not Doctors.  We desperately need that expertise so that we can manage our lives from a position of knowledge.  Primary Care Physicians are absolutely key in obtaining that knowledge.

Getting back to the question that Dr Mold asked me.  How can a family doctor take over for us as the hub of our health care wheel?  After some thought and considering to his question in more detail I respond “Why would you want them to?”  I really don’t see that as their role. 

To fully realize my goal of empowering patients/families to be able to manage and navigate their own health care comes many challenges that I am not sure the health care system really wants to address.  It involves a change in the power structure.  For patients to fully participate, and advocate for themselves, they need information.  They need access to their own health information.  They need more flexibility in how they access health care professionals and the ability to ask questions outside of a 15 minute clinic appointment.

Think of the ramifications this might have to the health care establishment.  Is this the real reason we get such firm resistance?  No one wants to challenge the health care power structure?  Are we just a little to comfortable with keeping the patient in the dark?

Note:  A special note of thanks to Dr Mold who asked me these questions and forced me to think about this topic.  Many people do not take the time to ask questions.  I wish more would be this inquisitive.


Saturday, September 1, 2018

Patients at Medical Conferences - The CMA Health Summit

It’s been a week and a half since the Canadian Medical Association inaugural Health Care Summit concluded in Winnipeg.  

A conference that I was able to attend.  Being local does have its privileges.

A unique feature of this Health Care Summit was that a group of patients were invited to attend and participate in the conference.  I was one of 27 patients who attended the conference as a patient/caregiver advocate (I am not a patient).  The CMA actively sought out patient reps from across the country to attend. 

Our plucky group of patients was joined by over 700 members of the CMA.  So this is one of the larger medical conferences that I have attended.

My first comment about the event was that the organizers did a good job of orienting the patient reps.  We received an orientation package a week before the event and we were all able to participate in a conference call where we could ask some questions and get some basic information on the event.  We also had a breakfast that was planned on the first day where the patient reps could all meet each other and connect.  This preparation that the organizers undertook was well received and I think we all appreciated the effort of making patients feel welcome.  

In addition to the organizers doing a commendable job of including patients in the preparations to the conference, I certainly felt a welcoming presence from many of the other attendees.  If the purpose of the Health Care Summit was to open up the proceedings to a wider audience than just CMA members, I think they did a good job.  I think anyone who is interested in Health Care and Health Care Policy would benefit from attending an event like this.

What’s In It for Patients?

One thing that I felt missing from the event was a specific purpose of having patients present.  I may have a jaded perspective, but whenever patients are invited to these events I skeptically ask “why?”  Is this just good public relations for the CMA?  Is there a specific deliverable in inviting patients?

For me, I was able to connect with many people who I know on social media who are involved in many facets of health care.  I took a lot of notes about some of the higher level policy issues that were discussed.  I certainly learned a lot.  I am speaking at a conference in late September so I was able to pick up some good talking points. 

Yes, I certainly learned lots and made some good connections but I still struggle whether it was worth it.  I have to book time off work and sacrifice a significant amount of personal time to attend these conferences.  I would consider it well worth it if I knew it was making a difference but many times I wonder if it is.

A Patient Perspective

A comment heard at the conference more than once was “Why is a patient not on a panel discussion?”  Good question.  Specifically when the subject matter is patient centric.  I think everyone realized this was a missed opportunity.

I think it would have certainly added to the discussion to have a patient be able to participate in some of the discussion and be able to take questions from the audience and participate in an expanded role.  

However, there is one small issue with this.

If I were to be invited to participate in a panel discussion, I would have one significant barrier.  I represent “A” patient perspective and not “The” patient perspective.  If you bring one patient rep onto the stage they can only represent their perspective and not of patients as a whole.  I try very hard to make that distinction.  That does not mean that patients can’t provide a lot of meaningful input but the audience has to realize that patient perspective is diverse and not in any way homogeneous.  There is not a patient lead organization in Canada that is specifically tasked with developing position statements based solely on the views of patients.  I know some organizations who are starting up but they are still in their infancy.  The vast majority of patient advisory councils or other patient committees exist at the whim of a larger organization that have other priorities, not just patient engagement.  I think that some organization that represents patients and ONLY patients is needed.  A united patient voice could provide a powerful message. 

I think the CMA did a great job of selecting patient reps who did represent several perspectives.  I think they also selected a group who are not shy about asking questions and participating even though they are drastically outnumbered.  This does not surprise me as many of these people have been die hard advocates for many years and they are used to being outnumbered and having to be a little more aggressive when they want their opinion heard.  

I think everyone at the conference was well aware of the group of patients in attendance.  Kudos to all of you (patient reps) who attended and participated so effectively.  You folks are awesome.

Lesson Learned

So if I had one take away from this event what would it be?  

This event was well produced and choreographed.  Lots of bells and whistles but one thought kept rolling around in the back of my mind.  A truth that I believed to be true before I attended this event.

Patient engagement is not about attending a fancy medical conference or being part of a patient advisory council.  Engagement is about meeting patients where they are.  In a Doctor’s office.  In a clinic, or in a hospital.  It starts out with “Hi, how are you?” …”What brings you in today?” It is about a relationship and developing trust between patient and physician.  It is the simple courtesies that we were all supposed to learn as children but seemed to have forgotten as adults.  It is about treating a patient where they are and it takes place all over this country.  From the largest hospitals of the UHN network to a family physician’s office in Williams Lake BC. 

When a patient comes in to see you, they are already engaged.  The question is are you?

That's patient engagement.

Saturday, July 21, 2018

The Power of Story

I’m done my manuscript! 

I’m sure in the next few months I’ll say that several times. As I do several edits.  What I have completed is a second draft.  I’ve moved the pieces around the chess board and I think I have things where I want them.  Until my editor tells me different.

Some may wonder.  Aren’t you getting tired of this?  It has been nearly 10 years since our son with Congenital Heart Disease was born.  We have been at this a long time.  That is true…but there are some things that I have never talked about…and some things I never will.  There are many questions that people have asked me that I have never been able to give a cohesive response to. This was something I wanted to do for a very long time and I’ve finally done it.  It’s on paper.  No one can take or edit that away.  Will it get published?  Who knows…and I don’t care.  What I set out to do. Is done.

I started this project in mid-January.  With some strong encouragement from Susan I joined a group of people who were taking a class on writing their life story.  The purpose of the class was for each of us (by the end) to have a manuscript or at least a rough first draft.  I had no idea what I had signed up for.

I met a group of people.  Most were significantly older than I.  All of whom had a story to tell.  As one who has been actively involved in the health care system and who has participated in many sessions involving patient stories, I have heard many stories.  Patient Stories.  In this class we were able to explore much more than one kind of story.  The sky was the limit.  The story of Youth.  Romance.  Stories of Financial Success.  Tremendous Tragedy.  It was a great experience to hear so many different experiences and how to capture those stories on the written page.  It drastically changed the way I have approached my writing.  I actually call myself a writer now.

I wrote many pages that I know will never see the light of day.  As part of the class we had several assignments that challenged many of my assumptions.  I have always had a fairly clear vision of what I wanted to write but this forced me out of that box.  It forced me to ask.  Who I was, and where did I come from?  I also found out that I have a distinctive writing style. As I wrote about the storm clouds in our lives I described a scene from my past.  The many prairie thunder storms that I had known all my life.  I found how we can’t escape the environment in which we grow up.  Growing up on a farm on the Canadian Prairies is something I had never written about before.  It was fun to explore some of these parts of my past.  Some things I had never thought much about.  It was a really unique experience and as all of my fellow writers from my class can attest.  It's a lot cheaper than therapy.

Photo Courtesy Mark Duffy -

So…where to from here? 

I have been fortunate enough to find an Editor.  We are also at the very early stages of the editing process.  We are taking it easy during the summer and will likely put in a greater effort in the fall.  So I’m not actively working on the book right now.  I’m letting it sit and percolate.  I did however let Susan read it.  She never read a word of Draft Number 1.  She finished the last chapter yesterday.  There is nothing more nerve wracking than let your spouse give you feedback on your writing.  Your “baby.”  With a great deal of fear and in trepidation I have been listening to some of her feedback.  So far it has been a positive review.  The one thing her review has confirmed to me is how hard it has been to relive some of our more difficult moments.  She refused to read one Chapter.  She read the first few lines (knowing what was coming) and skipped that chapter.  It’s difficult.  Even years later.

Now I am in the process of working on my strategy to getting published.  I could easily self-publish.  However, I have been encouraged not to.  So now I have entered the murky world of literary agents and publishing.  This should be interesting. 

I have always been a strong believer in the importance of sharing patient stories.  In many ways I think stories put health care in perspective.  Now I have learned the broader importance of stories not only in the health care context.  Everyone has a story.  Every story is extremely valuable.  This has been a great lesson to learn.