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.