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.

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.

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.

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.

 

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.

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 - FineArtAmerica.com

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.

#AxetheFax*

I’m on a mission!

Whenever I get an opportunity to take a shot at the health care system for their use of fax machines I make sure to climb upon my soapbox and share my utter disdain for the use of this device that should have been purged in the 1990’s

In my office, we have one of these fancy pants network printing workstations.  The thing probably costs a fortune.  It does colour…it scans…it also faxes.  In the past 10 years I believe I have used the fax function a total of three times.  Who did I fax?  A government office, an insurance company, and of course a Doctor’s office.  Both the government office and the insurance office that I faxed, are now using email.

How has my new mission to purge health care of fax machines gone?  Not well.  I have discovered that health care loves their fax machines.  They actually get quite defensive when you cast aspersions on their archaic devices.

On a recent visit to our pediatrician even my wife got in on my fax shaming mission, when our pediatrician, asked us to fax her an insurance form.  My wife literally laughed at the prospect.  This laughter was met with a 10 minute diatribe on how our Doctor couldn’t function without her beloved fax machine.  In fact, she now has software that takes incoming faxes and her office admin can take an electronic version of the fax (called a scan in the rest of the world) and can automatically file it electronically in our chart.  It doesn’t even need to be printed.

When my wife explained to me how this worked; I was flabbergasted.  Exactly how is that different from an email?  The health care system has actually developed software that facilitates and expands the use of fax machines.  Unbelievable.  

As an avid health care conspiracy theorist I hypothesize that the use of fax machines is an intentional way of keeping patients at arm’s length and away from their data.  What patient has a fax machine at home?  No one.  If we do have a fax machine  (at home)we probably should be getting counselling for being a hoarder.  By using a fax machine it makes it impossible to send documents to patients because they don’t have fax machines.  Conveniently most health care organizations have privacy policies that forbid the email of patient information via email due to privacy concerns.  Within our Health Region, by policy, if patient information is transferred via email it must be encrypted.  Who is going to do that?  This makes it very easy for health care organizations to make policy that disallows any transfer of information via email.  It's easier for them but not for you!  Just another example of provider-centric policy.

The fax saga gets worse.  I read an interesting report a few years ago.  Our quality team at one of the hospitals, where I sit on a Quality committee, did a study of how many faxes were being sent unnecessarily within the hospital.  As an example, when a patient is admitted to the hospital it starts a chain of events that are driven by policy and process.  These processes include sending documentation to various recipients by fax.  This is done automatically and without thought.  One document may be faxed to 5 different offices by policy.  What the study attempted to do was determine how many of these documents were sent and never looked at.  They were picked up from the fax machine, put in someone’s “Inbox."  A week later, when the “Inbox” was full the recipient may glance through the stack of faxes and throw the majority of them in the trash.  The fax equivalent of Spam.  The study found hundreds of documents were being sent weekly without any reason or purpose.  They were simply being put in the trash.  How is this the safe handling of patient data?

For those who think I am making far too big a deal out of this I have a few comments.  For me the fax machine is symbolic of a lot of problems in health care.  Fax machines are archaic and outdated.  The problem with getting rid of them is that it would create a storm of change in the basic operations of health care.  Policies would have to change and equipment would have to be upgraded.  Herein lies the problem.  Most administrators would rather develop band aid solutions to using a fax machine rather than go through the pure torture of drafting new policies on how to safely transmit data via modern means.  Policies that might take years to develop.  Administrators have nightmares about this kind of change as it is arduous and painful.

With change being this difficult within the health care environment one has to question how difficult it is to make other changes that effect clinical practice.  That is also depressing.  I have read that in some instances it can take up to 17 years for proven research to be fully implemented in the clinical environment.  17 YEARS!  That is an abysmal number.

The fax machine causes problems in health care!  It is a barrier for patients to access information.  It is not secure.  It is also a symbol of how difficult it is to change anything in health care.  Something we need to get much better at, if we are to change health care for the better.

Yes…I’m coming for your Fax Machine!

*Credit to Isabel Jordan @seastarbatita who posted the first #AxetheFax hashtag I came across, to which I have un-apologetically ripped off.

Go Jets Go

For the next few weeks there will be a recurring theme and topic of discussion in the City of Winnipeg.  Even conversations about weather and bad roads will be eclipsed by one pervasive topic.  Hockey! Playoff Hockey!

I have not always been a Jets fan.  I had only a casual interest in hockey as I watched the die hard Jets fans suffer through the earlier version; Jets 1.0.  A team that would bring so many conversations that involve "woulda"..."coulda"..."shoulda".  A team that showed a few flashes of promise only to have their expectations crushed.

The 2017/18 season has been a lot of fun.  This team has talent and it shows.  At times they are not just good; but really good.  Winnipeggers deserve this.  Whatever happens in the next few weeks I hope Winnipeggers, and Manitobans enjoy this.  This is fun and its a welcome distraction from the challenges and pitfalls of every day life.

In early December I traveled to Ottawa, for work.  I walked into one of our corporate boardrooms and deviously asked if anyone had heard the score of the hockey game last night.  All I heard was moans and groans as our Jets had crushed the Ottawa Senators the night before.  That was worth the price of a flight to Ottawa.  Yes, being a Jets fan has now become a lot of fun.

I'm proud of the work that the Jets do in the community to provide many people with a much needed boost.  In fact most NHL teams are very good at supporting their communities.  I enjoy seeing the Jets players go to schools, hospitals and help out in the community.  It means a lot to us.

We have a bit of a joke in our house.  In spite of our time in Edmonton we would never be Oiler fans.  It was just never meant to be.  When we were in hospital in Edmonton, with Russell, members of the Edmonton Oilers and the Edmonton Eskimos would routinely stop by the hospital and greet the kids.  In 6 months and several visits Russell never met one of these players.  We were always busy with a procedure or some test going that meant we were absent when the players would stop by. 

Regardless of our scheduling conflicts we appreciated the attempts these players made to brighten the day of patients.  It's been encouraging to see the Winnipeg Jets players continue this practice of supporting the community.  It means a lot to everyone.  I think everyone deserves a distraction as we all go through some very challenging times.  Sports provides us an outlet where people who have very little in common can come together to support our team.  I don't think we have seen any better example of this than the outpouring of support that we have seen, this past week, for the Humboldt Broncos.  The amount of support for the team and their families has been awe inspiring.

So for the next few days and hopefully weeks we can set aside our differences and be distracted for a while.  A very welcome change for a community that really deserves it.

Will the Jets make a deep run into the playoffs?  Will they crash and burn in the first round?
Who knows.  This is sports and anyone who is a sports fan knows you should expect the unexpected.

No matter how this season ends...this has been a lot of fun.  Buckle up and enjoy the ride.

The Awkward Silence

We’ve all been there.  

Uncomfortable situations where you aren’t really sure what to say next.  They happen all the time.  Something is said or done that makes you pause for a moment and say to yourself “what do they mean by that?”  or “who do you think you are?”

For the past few years, as we have gotten to know our medical providers.  We’ve had that awkwardness surface a few times.  Relationships are changing in health care.  I think that is a good thing.  However, as we redefine the relationships with our health providers we enter uncharted territory.  What’s appropriate? How much of ourselves do we emotionally invest in these relationships?  How much is too much?  Let me explain.

As a patient you are frequently being put in vulnerable positions.  Emotionally and physically.  Our personal space is invaded by poking and probing, often in areas we consider “private.”  Medically necessary? Yes.  Awkward and uncomfortable?  Definitely.  However, this isn’t new.

What is new and even more complex to deal with is the emotional and social side of the patient-provider relationship.  Over the years we have become very attached to our care team.  It is much more than a sterile professional relationship.  We have opened up to each other and shared ourselves.  This has been a two way street.  I have met some of our Doctors spouses and children.  They have shared their own stories of the challenges of being a parent.  We’ve also shared many laughs.  This has made a huge difference to us as we have grown to appreciate these people for the people they are and not just a title or position.  However, there are limitations to this relationship.  There must be some professional boundary; but where is that boundary?  What is appropriate?  The truth is that these can be high risk relationships.

Several years ago I was exchanging emails with another parent of a heart kid, as it turned out another transplant kid.  We had been introduced to each other by one of our Doctors.  It was this Physician’s informal version of peer support.  Over the next few months this Dad and my paths would cross related to some issues going on in the hospital.  We would communicate semi frequently, via email, as their daughter encountered some significant challenges.  It was difficult to read his string of emails as their health care journey progressed.  His daughter was admitted to hospital and steadily declined.  Many of the Doctors and Nurses that he knew, I knew as well.  We would talk about them by their first name.  We had a relationship with them.  They were a part of our family.

Then eventually the email came that I was dreading.  His daughter had passed in the ICU in Edmonton.  It was gut wrenching to read as the feeling of helplessness and grief consumes you.  A few weeks passed and we once again exchanged emails.  I recall an email he sent to me that described how alone and abandoned he felt.  When his family was in hospital they had support.  They had a team who was coaching and encouraging them.  They had a bond, in his daughter, who they were ALL caring for so diligently.  They were unified in their purpose.  When his daughter passed there was no reason to go to the hospital anymore.  His team was gone.  He told me in his email that he felt like he wasn’t part of the club anymore.  He even stated that it extended beyond the medical team.  He had been active as a parent volunteer and was involved in hospital activities.  Now, that too felt like it was gone.  It was tough to read but I understood exactly what he was talking about.

 

I too have felt this awkward distance from our health providers.  When Susan and I celebrated our 25^th wedding anniversary, last fall, we spent considerable effort in determining the guest list.  It became very apparent to that there was a gaping hole in that list.  There were 5 or 6 names that could have been added to that guest list, that were absent.  A few key members of our medical team who have spent the better part of the last 10 years with is through some of our most tumultuous moments.  It was also striking to think how integrated these people have become in our lives.  They really have become friends and family to us but yet there is that illusive “barrier” that exists.  That professional distance that must remain in place.

I raise this issue for two reasons. 

One, I think the closeness and camaraderie we feel with the people who look after our medical needs is phenomenal and has benefitted us immensely.  I would never discourage that relationship, provided that it is a healthy relationship.  Which brings me to my second point.

For this to be a healthy relationship there does need to be boundaries.  For there to be boundaries these issues need to be discussed.  This should all be part of the education that patients receive as they journey through the health care system.  Yes, we should learn about the technicalities of our illnesses, the medications, and the treatments…but there is a social and emotional component that is also extremely important.  You need to have a life.  A life outside of the hospital.  You can’t cut yourself off from your community.  Your supports.  Your family and friends who may have a difficult time relating to what you are going through and may not understand the biological/medical nuances of your experience.  This is a far more difficult balancing act than it may seem.  The bottom line is that we all hope to put our illnesses behind us, and once we do and re-enter normal society we have to be prepared for that as well. 

A difficult transition for many.

All Quiet on the Blog Front

I thought I should take a few moments and explain why my blog has been so quiet as of late.

Blogs are great tools for sharing brief stories or random opinions.  Short, sweet, and to the point.  I have enjoyed writing my blog posts and I hope some of you enjoy reading them.  I am always open to questions and comments as long as they are constructive.

So why I have not been posting on my blog as of late?

I have embarked on a book project.  This is something I've thought about for some time and finally I have decided it's time to do it.  This was my New Year's resolution this year.

I had several ideas and concepts for the book that I wanted to explore.  The one apprehension I had having never done this before was to get a little guidance on how to approach a fairly monumental project.  The answer to that question came early in January when Susan brought to my attention a course that was being offered, in my community, about how to write your life story.  Knowing that my book would be autobiographical in nature it was a great opportunity.

I started my first class in mid January and I'm now seven weeks in.  Wow, has this been a journey.  The class is being facilitated by Wilma Derksen.  A person very well known to the Winnipeg Community.  Co-facilitating the classes is Martha Stewart (no not that Martha Stewart) who shares fascinating stories of her life growing up as a missionary kid and travelling all over the world.  The real stars of the class are the participants who have shared so much of themselves.  Truly an amazing group who I am learning so much from.

The weekly classes are just the ticket I needed to be accountable for keeping up with my writing project.  As of today I have just eclipsed the 30,000 word mark and I'm just getting warmed up.  Pretty good for just a bit over a month.  I predict that my project will hit the 80K to 100K mark before I am done so I haven't quite got to the half way mark.  I still have a long way to go but I'm enjoying  the process and I don't think my progress to date has been a small achievement.

The best part about "Write Club" is the sharing and interaction that occurs.  The stories and experiences the group shares are quite amazing.  Everyone, absolutely everyone, has a story to tell.    As we are all writing our own stories and the adventures of our lives there are many difficult topics that come up.  As we have grown to be comfortable each other we have started to open up and share more openly and freely.  Honestly, this class might be the best from of therapy you could ever experience.

The Process

I am a long way away from publishing my book.  It is still taking shape.  My first draft is a fairly non-specific, non exciting, list of facts, and experiences from my life.  I am working in chronological order to try to keep my thought process in tact.  This is raw data at this point.

The challenge that lies ahead is that once complete (that I expect to be 80K words+) I then need to begin the process of editing.  Many other question need to then be asked.  What is the message of my book?  Who is it for?  How do I move the pieces of the story around so that it might be interesting for someone who doesn't know me to read.  I expect the editing process to be as much work as writing the rough first draft.  The pieces of my story will have to moved around like pieces on a chess board until it makes a cohesive story.  Many components will be edited out and re-written.  Now that I have written nearly a 1/3 done I think I know what direction I am heading.  The message behind my book is now becoming clear, although I'm open to tweaks here and there.

Regardless, of what this project will look like in the end, the process thus far has been quite cathartic. Writing about some experiences in my life that would seem quite innocuous have proven to be impactful and meaningful.  Amazing how some of life's trivialities form how we think and make a great impact on us years later.  Quite an experience to re-live some of those moments by writing them down.

For now I am enjoying the process.  I guess everyone will have to stay tuned to see if this book ever sees the light of day...and maybe you might be in it !

Reality Check

So the holiday season is behind us and life is getting back to its “normal” routine.  The kids don’t start back at school until Monday so that leaves some opportunities to take care of a few appointments that are easier to accomplish when the kids aren’t in school.

Today we met a new Doc.  My son Russell has had intermittent GI issues for most of his 9 years of life.  After a particularly nasty bout we got a referral for Gastroenterology.  Our appointment took place earlier today.

The official Emoji of Gastroenterology

I’m writing this post to remind myself about all of the quirks and nuances that have just become a part of our "normal" life.  Things we don’t think about any more or have intentionally forgotten.  The small things that stack up one on top of another and result in making our lives so complex.  I’m sure there are many who can relate.

The first reality check was on our drive to the hospital and realizing how long these issues have been around.  Russell’s GI issues have been with us going right back to when he was a baby and shortly after his transplant.  Given the complexity of his health issues there are many reasons he could have GI issues.  It could be medications, diet related, side effects of his serious health issues…the list goes on.  The bizarre part of this issue is that it has been with us so long and for the most part ignored.  We always had bigger, more serious issues going on.  A mild bout of diarrhea now and again was always dwarfed by other “supposed” more serious issues.  It is realizations like this that make you think you need to go back for remedial parenting school.  To give you an idea how long this has been an issue I realized that I wrote about this years ago in a previous post...from 2011.  Battling # 2 - Mar 2011

We expected our appointment with the Doctor this morning to be more or less a “meet and greet.”  This is a new GI Doc and we expected her just to want to get familiar with Russell.  Given that we aren’t currently having issues at the moment we didn’t think there was a great deal of urgency to this appointment. 

After getting settled into the exam room we met the nurse clinician, the Doc and a dietitian joined us.  I do appreciate when a team is prepared.  They had all of Russell’s information readily available and they had a clear understanding of why we were there.  You can’t always assume this happens.

The second reality check was reviewing and providing some of our history and past encounters with GI.  We discussed our past clinic visits and various tests that were done over the past years.  The issues we have had in the past and how they have changed over time.  Reviewing this information is a daunting task and time consuming.  We probably were at it for about an hour.  That is a lot of history for an ailment that is merely a footnote in Russell’s chart. 

This was a good review of all of the issues our little guy has had and how they are all interconnected.  Too much sugar in the diet does nasty things to the gut and messes with the blood sugar.  However, when your kidneys are compromised one Doc is telling you to push the fluids.  When your son refuses to drink anything other than peach juice with is loaded full of sugar it presents many complications.  For years we have had to do a balancing act with diet, medications, behaviour…over and over we had to adjust and adapt our approach.  This was all made even more complicated by a young child who is always changing and growing. 

I appreciated the appointment and the patience and time the Doc took in listening to us; and trust me there was a lot of listening.  Overall this was a productive appointment for all of us.  However, as I write this I think about the many short comings of this kind of approach to caring for a medically complex child.

GI is now the 6^th specialty that my son will see on an ongoing basis.  We do these appointments on a 6 month cycle.  That means that in one year we will have 12 appointments just to sit down, have a chat, and kick the tires.  These appointments usually come with tests of various form, which mean return trips to the lab etc.  This does not account for the unplanned trips due to normal illnesses or other complications coming up.  All of this time and effort is simply to maintain the status quo.  To add to the complexity; if one Doc orders a new med or new treatment, invariable the rest of the team has to be consulted with to ensure their “silo” is not adversely affected by said treatment.

It is this complexity and constant back and forth that results in a GI issue that can conceivably result in serious harm going unchecked for years in spite of almost constant interaction with the health care system.   A startling realization.

So today was another reminder that we aren’t “normal.”  We have a unique experience and our path ahead remains uncharted.  A very important realization as we start a New Year.  A chance to reflect, re-evaluate and keep moving forward.  One foot in front of another.