Change in Winnipeg's Health Care

Every 6 months we go to Transplant Clinic with my son, for his semi-annual “tire kick.”  Of the seemingly endless number of appointments we endure, this one is one of my favourites.  Not that we like clinic visits, this is just one that is much more enjoyable.  Why is that?  One unique feature of having a kid with a heart transplant is that your treatment is rather unique and that there are very few of us (probably only about 20 pediatric patients in the province.)

To make everyone’s life a little easier, Transplant Clinic usually involves bringing the transplant families in on the same day.  We get the pleasure of meeting many of these unique families.  The waiting is made much more enjoyable as we get to know these people on a more personal level.  These are families who I know share a story similar to ours and who I know have been put through unimaginable horrors.  Most of us still have difficulty talking about our experiences without showing the frustration, fear, anger, joy, and depression that comes with complex medical journeys.  These people have my unending respect.  In addition, these are true health care experts who have extensive lived experience.  Their experience is much more compelling than any research study or "key metric" the health care system can conjure up.  They are also a group of people I will defend with every breath in my body or keystroke from my fingers.

Photo Courtesy Health Sciences Centre, Winnipeg MB

These were the families who were on my mind as I sat in the 4^th floor Boardroom of the corporate offices of the Winnipeg Regional Health Authority (WRHA).  In this meeting, the Executive and Board discussed the plan ( http://healingourhealthsystem.ca/ ) to change the direction of health care in our city.  This was the plan that was made public yesterday by our Board Chair and CEO.  I had studied the plan for several weeks and I am well aware of the impact this direction may have on many families just like mine.  As was made public in the press release the vote from the board was unanimous.  So it doesn’t take a detective to figure out that I voted in favour of this plan.  A plan that will force many difficult changes in the health care system in Winnipeg. 

Last Tuesday night, after the vote, I spent a very sleepless night thinking about my decision.  I guess we all have moments when we second guess ourselves.  I wasn't second guessing the plan.  I think the changes identified in the plan are solid and long overdue.  The implementation is what gives me pause.  This is not a minor tweak to the system.  This is large scale change that will effect patients and providers alike.  Change is never easy.  Then I thought of the families I see every six months at Transplant Clinic.  What would they think?  Then I thought of the staff who we work with on an ongoing basis. Might some of them chose to retire rather than go through significant change in their job?  These are momentous changes with many consequences.  I don't believe the changes will stop there.  This is a first step.  I also believe our transplant families may understand this plan better than most.  They understand the impact of consolidation.  Especially pediatric cardiac families.  I think once the plan is explained without all of the political hyperbole, this plan will make sense to them.  Regardless, I am always willing to listen to their concerns.  I may get an ear full at our next Transplant Clinic.

In all of this change what I think is truly unique is that a caregiver...a patient family was given a voice at the decision making table.  It is a very different role to go from sharing your story at a conference or in a classroom - to sharing your opinion when health care policy is being deliberated.  When I share our story at a meeting or as part of a patient advisory group there is no risk for me.  I can quite literally share anything I want to.  I share positives and I also share negatives.  No one objects when I am critical of health care in that environment.  I am just a parent sharing a "feel good" story and when I leave, the "adults" can go back to making the "adult" decisions of health care.  My presence is quickly forgotten.  I have no authority there.

 It is a much different experience being a board member where you get a chance to be a decision maker.  Questions posed to executives must be addressed as we provide oversight to the management of the Health Region.  This role cannot be taken lightly.  It's also unique that an end user of the system is able to question health care managers with lived experience. Reality is sometimes a bitter pill to swallow.  However, I also have to realise that I have much to learn as well.  The most significant lesson I have learned being on the administrative side of the table is that many leaders in health care - the people we all like to criticise - are in reality very caring people who want the health care system to improve.  They have very sincere intentions but they just work in a very convoluted management structure where change is nearly impossible.  I have gained a great deal of respect for everyone working in health care.  They also need our help.  They need to see health care through the eyes of us who live the system on a daily basis.

Change is happening in Winnipeg.  Some patients and caregivers have and will be given some input to the process.  That input needs to be expanded.  I sincerely wish other caregivers and patients would take leadership roles in health care.  I hope that we can create many opportunities for families to give their input, especially in a time of significant change in health care.  I hope families like the one's I see every 6 months at Transplant clinic, get an opportunity to influence decisions though lived experience.  These are the true patient experts and they have a lot to offer.

Don't Call Me "Shirley"

It's probably one of the more quoted lines in motion picture history.  The quote from the 1980 movie Airplane!

 -Airplane (1980) - Paramount Pictures

I think of this quote every time the subject of appropriate language comes up in health care. I have spent hours discussing the topic of how address each other and the terms we use.  I am hearing more and more about this issue and I think it is much bigger than some may think. There are many questions.  Is the term  "patient" a title to be revered or despised.  Is the term  "health care consumer" or "client" more appropriate?  Other subjects come up.  Should you refer to your Doctor by their first name without the "Dr" prefix.  I know many parents who dislike being referred to as "(name of child's) parent"  Many view that as a loss of identity or a minimisation of their role.

How we are addressed is something that is personal and many of us view this very differently.  In my own case, I am often referred to as "Russell's Dad" or "Nicole's Dad." I am someone who is immensely proud of my kids I am quite proud of that title (I may feel differently when they are teenagers).  That is my view; but I know it isn't shared by others.  The one thing I do know, that I think we all agree, on is that how we are addressed is something that does matter.

My argument is that if you were to review many critical incident reports or negative occurrence in health care you will find one striking similarity.  Many of these "incidents" have a root cause in basic communication. A misunderstanding or an omission.  Communication is absolutely critical in the health care process. How you address someone is the start of that communication process.  If that initial introduction goes poorly that can tarnish the entire process going forward.  I strongly contend that the first couple of sentences, out of your mouth, when you arrive at an Emergency Room Triage will influence your entire experience in that ER visit.

So how do we know what is the "right thing to do" or how do we know "what not to say?"  I have some very simple advice.  Take a few seconds and ask the question.  Yes...i know this is revolutionary thinking but it seems like we tend to over think most issues and I think we could really benefit by simplifying these issues.

Is it so difficult to ask a patient, whether they be a child or an adult, how they would like to be addressed.  This can be a great ice breaker to get to know someone.  When people discuss the "Doctor-Patient" relationship you need to emphasise the "RELATIONSHIP."  That means interaction between two people; not a one sided lecture.  In the health care environment I have experienced a connection with some people I have met for only a few minutes.  On the other hand I feel much less connected with some that I have dealt with for years.  The difference is simply because "we" took the time to interact as opposed to keeping each other at arm's length.  Isn't it an expression of respect to ask someone how they would like to be treated or addressed?  Isn't that what so many people who become patients want is just an ounce of respect. All it takes to satisfy that need is to show a small amount of interest in the person?

Hello Donald, is it OK to call you Donald...or do you prefer Don?

What I am saying here is that in many instances (in my opinion) it isn't what is said but how it is said that matters more in the long run.  I don't care for being called Mr Lepp, but it is my name and if someone is simply trying to be more respectful, by being a little more formal, by using that rather than my first name it doesn't bother me.  I can easily ask them to use my first name and life goes on.  No big deal.  I can also be called "Mr Lepp" in a derogatory or sarcastic manner and that has to be dealt with differently.  My point is that in many cases it is not what is said...but how it is said that can be offensive.  If you are being talked down to, that is completely different than someone using a term that is not your preference.

Health care is an intricate web of systems and organizations that are difficult to navigate at the best of times.  Basic communication is critical for enhancing the patient experience.  Don't start off the process by getting hung up on language that you may not care for.  If something bothers you...say so...don't let it escalate.  Chances are, you may not be alone in your concerns...but whatever you do..."Don't call me Shirley."