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

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

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

SickKids VS: Undeniable - Watch the Video Here

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

Battle Metaphors

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

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

-St Crispin’s Day Speech – Henry V

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

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

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

Why Make this Video?

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

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

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

What Really Matters

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

The Doctor-Patient Relationship: Power Struggles

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

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

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

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

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

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

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

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

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

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

Reality Check

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

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

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

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

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

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

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

Patient Centred Design: Not so much

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

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

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

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

Getting Back to Basics

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

Patient Centred Care is not about "Feel Good" Experiences

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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