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.

Saturday, June 9, 2018


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.

Wednesday, April 11, 2018

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.

Saturday, March 24, 2018

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 25th 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.