Saturday, August 5, 2017

9 Birthdays

Way back …many years ago…I started my first blog.  At the time I really didn’t even know what a blog was.  It wasn't even called a blog.  I was using a Care Page that was suggested to us by our hospital staff.  It was a way of keeping all of our friends and family apprised of our medical adventures when we were unceremoniously uprooted from our tranquil residence north of Winnipeg and became immersed in “hospital world” in Edmonton.

After a year and a half of seemingly non-stop thrills and spills it seemed like the right time to shut down the Care Page.  Time to close a chapter of our life that we would just as soon forget.  Unfortunately, those 18 months indelibly changed me and my family.  I doubt there is a single day that goes by that I don’t think of our experiences in Edmonton.  The PICU, the doctors and nurses, the families, the hotel where we stayed, and even the hospital cafeteria.  Those experiences changed us.  

We are still processing many of these experiences to this day.  Some may call it PTSD, I am sure there are many diagnosis that we could come up with.  The impact of our experience was (and is) profound.  Perhaps I dwell on these experiences too much, but that is something that we are working through.  This is a long process that is made even more complicated by the fact that it is ongoing.  The grim reality is that our story is far from over.
Russell at 2 weeks

August 5th is Russell’s Birthday.  A momentous occasion.  9 years ago he was born on a stunningly beautiful day.  On this day, I wanted to get back to the initial motivation for blogging in the first place.  

How is our little boy doing 9 years later?

That is a very complicated question.  I have to admit the first time we went for an ultrasound and found out we were having a son, I think I was like many fathers and was already planning all of our father – son moments.  I think we all do this.  Hearing him say his first word or watching him take his first steps.  Then there were the “guy things” you imagine.   Signing him up to play soccer, learning to skate, going to a football game together…the list goes on.  I was excited to be having a son.  Daughters are pretty cool…but sons are different.  I could imagine all of the cool toys I could justify buying.  Toy guns, Lego, video games….all for Russell….of course.  Although it is unrealistic, I think we all do this, and start setting some lofty expectations.

That all came to a crashing halt when Russell was diagnosed with his heart condition.  In a moment, these visions of father-son adventures had to be significantly altered.  Did I really care that Russell would play hockey? No, it was no big deal…but when someone tells you “can’t” or “never will” is a totally different scenario.  You can’t tell me what I can or can’t do is the attitude many of us have.  It was a very difficult reality to accept that Russell would never do many of the things that other children could do.  He may not have enough cardiac function to run or play like other kids.  He may never ride a bike.  In only a few moments with a devastating diagnosis we now had to adjust our expectations for our son.  Life had played a cruel joke on us.

In the months that followed, things went from bad to worse.  Instead of praying for a normal  life for Russell our hopes were lowered to hoping that he would see his first birthday.  What was worse was that our little boy was struggling.  It is a dark time when you ask your PICU Doc to intubate your son because you can see him struggle for breath and the cries he make are not the typical cries you hear from a healthy infant but a life and death struggle being waged in front of your eyes. 

Then we were offered a second chance.  The Transplant

We intellectually understood the concept of the transplant, but understanding what it meant emotionally was a completely different matter.  We asked many questions about what Russell’s life would be life with the transplant and we got many different responses.  It was not talked about as a cure…which it is not.  A cardiac transplant comes with its own complications.  This was something that we would have to deal with forever.  It wasn’t this magical solution.  However, the one word that was mentioned to us…was that it would give Russell a chance to be “normal.”  That word has stuck with me.  Don’t get me wrong…living with a transplant is far from normal…it has many risks and involves lots of management.  What stuck with me about the concept of “normal” was this opened the doors to many things we had given up on.  Our son may be able to run.  He might even play sports.  He could go to gym class in school.  He (we) were being given a second chance.

Since our early days of learning about life with a transplant…there have been many challenges.  The complications that were discussed way back when have certainly become a reality.  In many ways we are living on the edge.  We still have fears about the things we have been warned about again and again.  The fear of organ rejection.  The fear of kidney damage.  Many of the meds Russell takes have many side effects.  Immune suppression is a huge issue as we have to worry about every sniffle and cough, not only with Russell but everyone he is exposed to.  He has had RSV, and Chicken Pox.  He has had to be quarantined at home and could not attend school because of suspected measles in his school.  Then there are the challenges he is having at school.  This past year has been a nightmare.  There could be many reasons for some of the challenges Russell is having with learning and behaviour but we are now beginning to realize that medical trauma, the experiences he had as an infant, may be playing a role as he copes with the challenges in school.  It seems every bit of success we have had has come at a price.  As a parent, it is excruciating to watch your child struggle.  If anyone deserves a break it is him.

There have been so many challenges that it’s difficult to recall them all.  Perhaps it would be better in some ways that we could forget some of them.  However, the bottom line is that we have a son who is absolutely full of life.  I still recall some of his nurses, even when he was an infant, commenting on how such a little boy could have such a huge personality.  They couldn’t be more correct.  He is a real character.  A character who at times drives us crazy.  He is stubborn, strong willed, and at times a holy terror.  It is also often pointed out that it is that stubbornness and strong will that kept him alive.  He has a smile that lights up a room.  He is kind and has many deep feelings.  He is a leader and likes to be in charge.  There are also times where he just wants to be left alone and enjoy his quiet time.  He is a Lego Master Builder.  He spends to much time on electronic devices.  He has a distinct sense of humour.  Like any 9 year old he finds bodily functions hilarious (I’m not going to explain).  Many times he sneaks out of bed early in the morning, and with all of the stealth he can muster he will sneak into our bed and cuddle up with his Mom.  After all; he is a "Mama’s boy."

Every once in a while you have those “A-ha” moments.  With Russell it happens quite often.  He does something that leaves you amazed.  To many parents some of these moments would seem rather benign.  To us, many of these “benign” moments are huge.  Moments that at one point we thought we would never experience.  
video

A couple of weeks ago when we were at the lake.  Both kids were riding their bikes in the campground.  I couldn’t help noticing the smirk on Russell’s face as he went whizzing by us on his bike.  That would have never been possible without his transplant.  The gravity of that moment, makes you very humble as I recall the many people who made this moment possible for him. 
What's the fun in going to a football
game if you don't get to buy a few
souvenirs.

Last week I was able to take Russell to his first Football game.  Yeah…he drove me nuts because he can’t sit still for more than 5 seconds but he had a great time.  It was one of those father-son moments that become great memories.  We both had a great time.

I have said this many times.  If there is anything that we have learned in our journey over the past 9 years is the gift of being thankful.  Thankful for our son who has taught us so many life lessons.  The second lesson learned would definitely be to enjoy every moment.  Life is a gift.  We are not defined by our adversities but they are critical in making us who we are. 

We have no doubt been changed by our experiences of the past 9 years.  In many ways I feel like I’ve had to do a lot of growing up.  I am looking forward to watching Russell grow up, knowing there are many more chapters to be written about this boys’ remarkable life.

Happy Birthday Russell


Friday, July 28, 2017

Charlie Gard: A Matter of Trust

A complex medical ethics case has been playing out in a Children’s Hospital in London England.  Charlie Gard was born last August with a severe genetic disorder which affect his brain, muscle and ability to breathe.  In addition he has congenital deafness and suffers from severe epilepsy.  His parents, Connie Yates and Chris Gard were seeking to get treatment for their son outside of England, against the advice of the hospital’s medical team. 

This week it has been reported that Charlie Gard’s parents are ending their legal battle to seek treatment outside of the UK.  It seems this story is coming to an end.  A very grim end.


The hospital in the situation had sought a court order allowing them to turn off life support.  This has raised the issue of what a parents rights are in relation to their child’s care.  The parents, in this case, were doing what many parents posed with this tragedy would do, they would advocate for their child to the best of their ability and explore every viable treatment option.  The hospital is also trying to act in the best interest of the child and in their best medical opinion to mitigate the suffering of an infant that in their best medical opinion would not likely survive.  In their view, keeping this baby on life support would just prolong the inevitable.  Both perspectives are compelling and this case has sparked a furious debate over the future of this child. 

Syndicated columnist Charles Krauthammer, in a recent interview weighed in on this debate with some succinct and credible insight.  Credible in the sense that Krauthammer is a trained physician who also happens to be a paraplegic.  Dr. Krauthammer, provides a unique perspective through his medical training and lived experience.  Krauthammer’s opinion is bluntly stated “The merciful thing to do … would be to remove the tubes and allow the child to die, and to end the suffering.”  However, Krauthammer did not stop there.  He unequivocally stated that his personal feelings aside,

 "The decision to remove life support must be the decision of the parents."  


In spite of the fact he disagrees with the parents, the right to make this decision lies with the parents.

This issue strikes very close to home for me and my family as my own son hovered precariously near death only a few short years ago.  We had to sign waivers and give consent to treatments that were considered “experimental.”  Some of those treatments did do harm, harm that we are still living with to this day.  Those treatments that did harm also saved his life.  This is a massive burden for any parent and my heart goes out to the parents of Charlie Gard.  The burden is made even more difficult by the fact that these parents have to not only battle their own emotional conflict but also advocate against their own medical team. 

In patient advocacy circles we often talk about working collaboratively with our health care providers.  This means we work together to share information and come up with carefully considered and well thought out decisions.  In our medical journey, we had some fabulous clinicians who went to great lengths to explain our son’s situation and the pros and cons of every treatment strategy.  After several weeks in the intensive care unit we knew implicitly who was working with us and who we could trust.  “Trust” is extremely important in the health care environment.  We saw parents who went through the process of being told “there is nothing more we can do.”  We saw them devastated by that pronouncement and we prayed that we would never have to face that reality.  We were lucky.  We had a successful outcome.  Did we always agree with our care team? No.  Did they respect our opinion and give us the final say? Absolutely.  Could we have made the decision to remove life support … thankfully … we will never know; but the bond we built with our care team leads me to believe that we would have given them (our care team) the benefit of the doubt given their demonstrable support for us and our son.


It is clear to me that the trust between Charlie Gard’s parents and his care team was at some point broken or this protracted conflict could have been avoided.  We all may have some opinion on whether it is right to turn off life support in this situation.  However, it is not our decision to make.  Unless the parents are not competent to make a decision; the decision should remain that of the parents.  A decision made with competent advice from their medical team.  This is something we all need to consider when we interact with our health care system.  The fact that we need medical advice that we can trust.  This is the very basis of informed consent.  Health care is about more than diagnosis and treatments, it is about relationships and trust.  That is the tragedy behind the Charlie Gard story is the relationship breakdown between provider and patient.

Saturday, July 8, 2017

Can You "Care" Too Much?

December 2008:

We were in the 4C ICE Room (2:1 nursing) at the Stollery Children's Hospital in Edmonton with my son Russell, who was just a bit over 4 months old.  He was listed for a heart transplant at the highest status level.  He was being kept alive by a small mechanical pump that kept blood flowing to his tiny body, the Berlin Heart (shown below).  Yes...our plate was very full.

Russell: December 2008
Located in 4C: ICE - Stollery Children's Hospital
Waiting for a Heart Transplant kept alive by his Berlin Heart

In this room were 3 other children all less than a year old...Baby "M", "A", and "W"..  Two of them (Baby W and Baby A) were also listed for heart transplants and the 3rd  (Baby M) had an un-diagnosed genetic condition that made the rest of us look like we were getting off easy.  

These families were not the only one's we met when we were in hospital.  The interesting part of these 4 babies is that all 4 lived to go home from the hospital.  This was certainly not true of several of the children that we met.  It is why we have so many emotions related to our hospital journey at the Stollery.

Baby W was the first to get the call for a transplant, in early December.  Baby M moved to another room but hung around long enough so that our families could spend Christmas together.  Baby M has defied all odds and is hanging in there and we still stay in touch with Baby M's family.  We got our call for a donor heart just a couple of days before New Years.  That left Baby A who was still waiting for an elusive donor heart.

While we were recovering from the transplant surgery in PICU, in early January,  Baby A decided to join us in the ICU.  Baby A had a setback and also required a Berlin Heart.  We were once again beside each other.  Baby A's family was an immigrant family and did not speak any English and required a translator to talk to the hospital staff.  This is why we developed a real soft spot for Baby A.  When "A" joined us in the PICU I commented to his bedside nurse to be sure to take "extra care" with him as we were "looking out for him."  What was a casual comment was met with resistance and I was given a minor scolding about not getting caught up in what was going on in the next bed.  "Just worry about Russell" we were told.  I understood the intent of the comment.  We have enough on our plate and we shouldn't get emotionally involved with another patients journey.  It is true you can't obsess but you can show basic compassion and identify with what another family is going through.  In my experience the families we have met through our medical saga have been so beneficial and supportive of us I could never imagine cutting myself off from such a valuable support system.

I still wonder about Baby A and what became of this tiny bundle that we met in 4C ICE.  I still think of that ICU nurse; and her comments still bug me, but that attitude of closing yourself off emotionally is very pervasive in health care.  In fact, I have taken the exact opposite approach to what this nurse suggested.  I readily embrace other people's experience in health care.  We learn from each other and we support each other.  Perhaps this is just one more lesson that families could teach the health care system.  You can't "Care" too much.

In addition to the many families I have met in my medical experiences as a caregiver and a volunteer I encounter a tremendous amount of clinicians.  I get to observe how they cope with the triumphs and tragedies that their patients encounter.  Yes...to get to really know these patients on a more meaningful level is an emotionally risky proposition.  Not all outcomes are what we hope for.  That is the nature of the business.  However, getting to know your patients (really know them) can be such a life-affirming experience.  The benefits to building a relationship with patients is numerous.  It builds trust.  It makes difficult conversations much easier.  It becomes safe to ask questions.  It allows clinicians to bask in the successes...something that i think is so very necessary.  It also allows clinicians to acknowledge grief and loss.  Like it or not we are in this together.  We might as well work ....together.

Back in December of 2008 when we did finally get the call for our donor heart, we were called from our hotel.  We quickly made our way to Russell's room.  The reaction from the staff was tremendous.  I know Susan and I were still extremely nervous and cautious, but the staff were beaming.  They seemed more excited than we were.  There were "High 5's" and congratulations.  As word spread throughout the hospital we started seeing visitors come in who wished us well.  The outpouring of emotion was amazing.  It was genuine.  We had a whole hospital backing us up.  They had been there through the worst and they certainly not going to miss out on the success.  I wonder how many staff members went home that day feeling good about the profession they had chosen?

When you have an entire hospital supporting you;
You might feel a little like Sidney Crosby in this Tim's Commercial


How sad is it that so many Doctors and Nurses isolate themselves from their patients under the pretense of privacy laws and professional distance?  Furthermore, how many medical errors are caused by misunderstandings and miscommunication simply because no one bothered to ask the patient or family.  I know that dealing with some patients and families can be challenging.  However, give us a try...you might like us...we can be a lot of fun.  It's time to put the "care" back into health care.

After all we are the only measure of success that really matters.  Our success is your success.


Saturday, June 17, 2017

The Art of Complaining - Part 4: Going Rogue

Creative Complaining

We've all been there.  Frustrated, angry, and feeling like no one is listening.  You've tried talking to your Doctor or Nurse.  You've gone to the patient relations office and bared your soul to a very well meaning patient relations officer.  All you have received is the well rehearsed political response.  In your mind, your issues have not been addressed.  This feeling is all too common for those who have tried to deal with an issue in health care.  Health Care, in all its complexities, is extremely resistant to change and has become very adept at running patients in circles until they finally give up.  This is shockingly common.  We just give up.  I've done it and I'm know many others have as well.  In many ways we have come to the conclusion that it just isn't worth the emotional and physical toll it takes to keep fighting...but what do you do when you say to yourself..."No...I'm not giving up!" ... "No...what happened to me was unacceptable and there is no way I will ever let this happen to anyone else."  Are you prepared to do what it really takes to "Go Rogue?"



Warning:

To "rebel" against the health care establishment is a high risk proposition.  I am going to share some of the things I have done to challenge the status quo.  Some worked...some didn't...and some blew up in my face.  What I am about to share I do not recommend as I feel deviating from the formal processes of interacting with the health care system is potentially dangerous.  Before you do anything you definitely have to evaluate the risk versus reward.  Is it really worth it?  If you "pick a fight" are willing to see it through to the end?  Be very careful what you ask for...you might get it.

What do I mean by going rogue?  What I mean is that after exhausting all of the conventional ways of getting your message heard; you have been shut down.  As a result, you decide to go the non-conventional route. You go outside the conventional reporting structure and circumvent the system.

To give you some examples of things I've done:
  • Written Letters to Health Care Directors, Chief Medical Officers, and CEOs
  • Written Letters to my MLA, Provincial Minister of Health, and Health Critic
  • Writing this Blog
  • Written Op-Eds
  • Contacted the Media.
  • Used Social Media to raise my concerns
  • Conducted my own Incident Investigations
  • Become Politically Active
When it comes to creative complaining, I have tried a lot of different approaches but certainly not all.  I am sure others could come up with some creative ideas.  The one thing about every tactic I have tried is that there is never any guarantee how the approach will be received.  The reaction could go one of three ways.  It could be well received, negatively received, or ignored all together.  You have to be prepared for all three.

When trying to get my voice heard I have tried to tailor my approach to best utilize my skill set.  Many of the things I have done involve writing.  I like this approach as it gives me time to think and work through what I want to say.  Before I send anything, I can show other people what I have written and get some constructive criticism, ensuring the appropriate message is coming across.  Is the tone correct?  Do I come across as a "wingnut?"  Am I too negative...or too positive?  Writing something down gives me a great opportunity to take my time and not say something rash in the heat of the moment.  Writing also allows me to vent.  Many things I have written have never been sent to anyone.  In some cases, all I needed to do was express my feelings and writing is a great outlet for me.

There are many other approaches you can take, you have to figure out what works for you.

Circumventing the Chain of Command

Yes...I've done it.  I've skipped all of the processes and gone right to the head of the organization.  I'll share one experience.  In January of 2012, Susan had a car accident.  She was taken by ambulance to Seven Oaks General Hospital (SOGH).  We had a nightmarish experience in the SOGH Emergency Room.  In the end Susan required surgery to repair her "mashed" foot.  Our experience there left us speechless, frustrated, and angry.  As is usually the case, it wasn't an issue of any one person.  It was a series of events...a comedy of errors; except Susan and I were not laughing.  I waited about two weeks to let myself cool off and then I drafted an email which I sent to the Chief Medical Officer and the Chief Operating Officer.  A day or so later I received a very respectful and well thought out response from the CMO, Dr Ricardo Lobato de Faria.  He demonstrated a thorough knowledge of Susan's chart, and confirmed many of my assumptions.  What impressed me most was how he acknowledged the problems without throwing his staff under the bus.  In fact, he defended his staff and hospital without minimizing my concerns.  Taking my complaint seriously, he forwarded a copy of my email to their senior staff and to the staff in the Emergency Department.  In my mind, that was a win....but it wasn't over.

A couple of months later I was contacted by the Quality Manager at SOGH and  was invited to a workshop to provide patient perspective on their ER processes.  This was part of an overall improvement project.  I participated in this project and subsequently I was invited to take on a role on the Board of Trustees of the hospital.  An opportunity that has enabled me to share the patient perspective at the Board level.  This all stemmed from one email.

This all sounds like a great thing but in my time on the Board I witnessed another patient do the exact same thing that I did.  Write a letter to the executive and the board.  This letter was not received well and was dismissed in its entirety.  That was very disappointing to me.  This is the risk you take when you deviate from proper protocol.   You have to be prepared for either outcome.


MEDIA

Going to the media is a risky proposition.  If you contact a reporter they will be very happy to talk to you and listen to your story.  However, if you go this route you lose control over the message.  The reporter can put their own spin on the message or take the issue into a completely different direction than what you may have intended.  You can also get caught in the news cycle.  If there is an important breaking story your concern may get dropped all together if other stories seem more pressing.  This is why when I originally started sharing my opinion publicly I wrote my own narrative and submitted it to a local paper as an op-ed.  Then I was the one who controlled the story.  Some of the content I have submitted has been printed; and some has not.  That is the nature of the game.

One of the Op-Eds I wrote for the Winnipeg Free Press.
Feb 22, 2016 

I have also received some unexpected reactions.  When I started being more public about my opinions and found myself writing op-eds and being quoted in news articles I experienced something unexpected.   Little did I know, I opened myself up to the dreaded "Comments Section".  One Op-Ed I wrote prompted a comment stating that "I" was the problem with health care.  Another anonymous troll commented on a piece I had written about adoption and accused me of being complicit in "human trafficking."  Yes...you have to take the good with the bad.

POLITICIANS

Twitter Exchange between myself and the Minster of
Health for Manitoba, Sharon Blady
Whether you take your case to a Health Care executive, or the media, or other public forum you have to keep in mind people's motivation.  They need a reason to listen to you.  Politicians, on the other hand, are a different type of people to try to access.  You have to understand what motivates them.  Some take issues very seriously and are truly looking out for their constituents.  They also need to be elected.  The primary motivator for any politician once elected is to get re-elected.  Something always to keep in mind when trying to solicit support from a politician.  Politicians like to use patients for political purposes.

Health Care policy in this country does not come from researchers or hospital administrators.  It comes from politicians.  Too often health care policy is ideologically driven.  The advantage that patients have when trying to get support from a politician is that most politicians know squat about health care.  Unfortunately, they run health care.

I have had an absolute blast tweaking politicians (on social media) about health care because, without their staffers to advise them, I have the advantage.  I have interacted with many politicians on social media.  Several follow me.  Yes...it has put me in some odd predicaments.  I once invited the Minister of Health, Sharon Blady, to take a tour of our Cardiology Clinic.  Much to my amazement...she accepted and asked me to contact her office to setup the details.  The only problem is that I extended this invitation without asking anyone at the hospital for permission to do so.  After the exchange on social media...I very quickly and sheepishly emailed our Section Head of Peds Cardiology to ask if this was OK??  I think she must have thought I was nuts (which I am).  She seized the opportunity and enthusiastically accepted the offer.  She's smart...anytime someone who holds the purse strings wants to stop by for a visit...you accept...and you get out the whole grocery list of things you need funding for.  Unfortunately, I was never able to meet the Minister, but the MoH did come to the clinic in an informal capacity.  Our cardiologist did get a chance to give her a tour.

This isn't the only time I've put myself in hot water with politicians.  I have taken up the habit of live tweeting some of our health care experiences.  Some people follow our story fairly closely and this is a good way for people to stay current with what is going on with us.  The interesting twist is that if you do this live...you have no idea what your experience will entail.  It could be a great experience or a train wreck.  I live tweeted one of our ER experiences which turned out to be a train wreck.  One of my followers on Twitter was the Health Critic, at the time, Myrna Driedger.  She was horrified by what I was describing in my twitter feed.  She contacted me and invited me to the legislature to sit in the gallery while she raised our concerns during Question Period.  That was different to say the least.  Got to experience my first media scrum.  One of the Legislative Assistants for the Minister located me in the gallery in about 5 mins and was already offering to assist in any way they could.  This is where things got really fun.
Someone should have told me that if you want to be a hot shot media type
...perhaps you should smile!!!

I met with the Legislative assistant later that day and gave her a little more information.  At this point I had some time to think about what I wanted and what I wanted to achieve.  The Minister's office offered to conduct an investigation into our ER visit.  I gratefully declined.  At this time I was a family rep on the Child Health Quality Committee at Children's Hospital.  All of the people I would need to conduct my own investigation sat at that table.  I decided to conduct my own investigation, with the weight of the Minster of Health backing me (or that is what I implied.)  I contacted the chair of the Quality Committee and booked time on the agenda to discuss our case.  Wow...did I freak some people out.  When I presented at our meeting...i got the look of death and quite literally i got the "Who the ---- do you think you are?"  attitude.  Thankfully with a lot of support of some of the staff I got some great input and we actually solved a policy issue that contributed to our negative experience in the Emergency Room.  What happened to us will not happen again.  This was a huge win...and was so much fun to do.  I forwarded a copy of my investigation to the office of the Minster of Health and was proud to do so.  Patients and families are a force to be reckoned with and I was proud to contribute to finding solutions.

LESSONS LEARNED

I must admit I've had some very interesting experiences being a patient advocate.  My experiences have left me with a very positive outlook.  Yes...there are problems in Health Care, but there are so many amazing people and patients who are involved and want to make things better.  That is very hopeful to me.  I've done some strange things to get our message out and its taken a long long time to make any progress.

Many have asked me, how on earth does an "average Joe" like me get invited to meet with executives and high ranking health care officials?  The key word here is patience.  I did not attend my first patient advisory meeting expecting to take on the world.  I sat...I listened...I tried to ask thoughtful questions...and I learned.  I learned how health care systems work.  In my many hours of volunteering I have built relationships with many people in a vast variety of roles in health care.  Many of these people I would now call friends.  I was respectful and I tried very hard to not let my ego get the better of me.  My wife Susan, also played an important role.  She supported me even when I didn't have time for some of these activities.  She asked me questions like...why are you doing this?...what did I hope to accomplish?  She forced me to focus on things that were important and forget about the insignificant details.

Many of the opportunities I have been given did not come about by accident.  I first had to build a relationship with many people in health care and get their respect.  Once I achieved that, I was able to have very open and honest discussions.  They realized i wanted to help...and I still do.  The down side is that I know that in my experiences I have rubbed some people the wrong way.  There are some circles in health care that are less then welcoming to me.  Another harsh reality of "going rogue."

Patients, Families, and Caregivers have a tremendous amount to contribute to Health Care.  However, all of us need to learn how to make our voices heard.  It is vital that patients raise issues, and when necessary,...complain.  Perhaps some of the suggestions I have made you don't agree with or you have other ideas how to make your concerns heard.  More power to you...go for it!  Nothing will change if we sit silently and accept the status quo.




Saturday, June 10, 2017

The Art of Complaining - Part 3: Formal Complaints

In my previous post I discussed informal ways you, as a patient or caregiver, you can raise issues or concerns without going through the formal complaint process.  When given an option this is always the fastest and least painful way to address a concern.  However, all too often the patient and the medical team come to a point where they don’t agree or an adverse event has occurred that requires going through the formal complaint process.
I am not a pessimistic supporter of the formal complaint process.  Too often the process is time consuming, bureaucratic, and marginalizes the patient point of view.  However, these processes are necessary to investigate complex situations and generate evidence based recommendations with the goal of improving the system.

The Formal Process of Health Care Complaints

To repeat, it is important to try to resolve concerns directly with your front line health care providers.  If there is an adverse event or other concern the front line staff have some tools available to document and rectify the concern.  That is always the place you start.  There is a way to escalate concerns but you have to start with your bedside nurse, charge nurse, attending physician, or unit manager.  If you cannot come to a satisfactory outcome it is reasonable to contact “Patient Relations” or whichever formal organization is tasked with addressing patient complaints/concerns.  

Photo Courtesy: www.notstandingstillsdisease.com


When a Patient Relations officer receives a complaint they have to assess the nature of the complaint.  The reason for this is that the types of complaint can span a wide variety of issues and severity.  Each type of complaint may have its own process to follow to rectify the situation.  In some severe cases their may be legislated processes to follow.  The types of complaints can vary greatly.  They can range from a complaint about the cafeteria food, parking concerns, and all the way to a medical error causing death.  All of this “triaging” of complaints can be time consuming.  If a complaint is medically related and of a serious nature the complaints can be categorized as “occurrences” or “critical incidents.”  These are very important legal terms that require specific response laid out in “Critical Incident Legislation” that most provinces now have.  The following is an excerpt from the Manitoba Health website that defines what a Critical Incident is:

Manitoba’s legislation defines a critical incident as 
“an unintended event that occurs when health services are provided to an individual and results in a consequence to him or her that is serious and undesired.” This can include death, injury and disability, and “does not result from the individual’s underlying health condition or from a risk inherent in providing the health services.”  -source Manitoba Health

That being said just because you, as the patient, thinks a complaint meets the criteria of a critical incident, that doesn't mean it will be categorized as one.  There is a committee or investigative team that makes this determination (patients not included.)  The reason the system is very careful about what they define as a "critical incident" is because there are legislated requirements and a prescribed process to follow. The health system is required to follow these processes and perform them in a prescribed timeline.  That means it is time consuming and expensive.  Unfortunately, input from the patient or caregiver is limited as the focus of any investigation does not consider the motivation or purpose of the patient who may have raised the concern in the first place.  The only purpose of a critical incident investigation is for the purposes of learning and system improvement but NOT to address the concerns of the patient.  It is hoped that those goals would be mutually beneficial but that certainly is not always the case.

Here is another excerpt from the Manitoba Health website:  

(Critical Incident Reporting is a) mandatory no-blame critical incident reporting across the health system to support a culture of learning and openness. Critical incidents are not reported to lay blame on individuals. The purpose of reporting is to look at what can be done differently and what improvements can be made to the way health care providers work.   - source Manitoba Health

This is why the formal processes of filing a complaint can be so frustrating from a patient perspective.  These processes and investigations take a long time to complete.  The actual input or involvement by the patient is relatively limited and if the patient has specific questions that they want answered they may (or may not) get these concerns addressed depending on the way the investigation proceeds.  It is also worth noting that Critical Incidents can be initiated by anyone in the health care system.  Any investigation can be initiated without the patient even being aware it is going on.  I have first-hand experience with this.  The whole purpose of this process is to look at “system” issues NOT “patient” issues.  

Many patients enter into the process with the idea that “Finally, I will get some answers” but end up very disappointed when their specific concerns are not addressed.  The other issue that inevitably frustrates patients is the time consuming nature of these investigations.  To do a proper investigation and to engage all of the different stakeholders who may be involved is a time consuming proposition.  Health care is complicated, and trying to investigate an adverse event within health care is even more complicated.  From a patient point of view, the waiting is frustrating.  Not being aware of all of the inner workings of the investigation is even more frustrating.  This process was never setup with the patient in mind.

The Power Imbalance

A significant concern and a likely reason that many patients do not complain is that they may be in a situation where they need their health care team for ongoing care.  If they do all of the right things and talk to all of their providers and still cannot get their issue resolved, their next step may be to escalate their complaint and file a formal complaint.  I feel that for many patients this is one step further than many are willing to go.  This has been the case for me on a couple of occasions.  Patients worry that if they file a formal complaint that they will be treated negatively or be isolated by their health care team.  Patients live in fear of being labelled as “difficult” or “non-compliant.”  

For patients with complex health issues there may be only one specialist or clinic in their community that deals with "their" specific health condition.  If you alienate that team you risk losing any support you have.  You don’t have any option of going to another Doctor or clinic.  The potential of being isolated, trapped, and alone is a frightening prospect.  In addition to living with a complex medical condition you are now faced with the stress and anxiety of being forced to work with a medical team where there could be a palpable level of mistrust or animosity.  

Solutions

There are ways that the formal processes do help patients and I certainly want to stress the importance of these processes.  The formal processes are also necessary as they do provide helpful feedback that can result in system change.  

Patient Relations

If you go to patient relations and talk to a patient relations officer they can represent a conduit for you to address your concerns.  This can happen in a couple of different ways.  The officer can play an intermediary role between the patient and the health care provider.  Many times a skilled patient relations officer can identify where communication broke down and bring all the parties together and re-establish the lines of communication.  Patient relations can also help the patient better communicate their concerns in a way that may be non-threatening or frame their concern in a more effective way.  (Be able to translate from medical speak to patient speak and vice versa.)


Patient Relations can also present opportunities to the patient that they may not have thought of.  Many patient advocates, that I know, started out being advocates by going to the patient relations office and making a complaint.  Through this process the patient was asked to participate in a patient advisory group or similar organization.  This afforded the patient an opportunity where the patient can share their experiences and attempt to make changes through a patient committee.  In some cases this is all patients want...an opportunity to share their story and be heard.

Some health care organizations are also initiating “peer support" programs.  A patient may be put in contact with a patient “peer” who may have specific training in peer support and has the benefit of having their own health care experiences.  Patients have an inherent credibility among other patients.  It gives the patient a different perspective and resource to draw upon for support.  Many times peer support can provide a patient a peer who may have been in a similar situation or had a similar negative experience.  Shared experience can be a powerful tool.  I am a huge fan of peer support and continually advocate for health care organizations to expand these kinds of programs.  Patients can be a great support to other patients.  

The patient relations office can be a great resource for the patient but the inherent risk is that ultimately the patient relations office is a function of and accountable to the health care system.  The perception (and in some cases the reality) is that patient relations ultimately represent the hospital and this message can come through loud and clear to the patient.  This is something that all patients should be aware of when they make the decision to take a concern to patient relations.  When all is said and done, the patient relations office is working for hospital administration and not the patient. 

The Patient Ombudsman

Ontario has initiated a new avenue for patients to file a formal complaint.  In recent years they have established the office of the Patient Ombudsman.  I think many in health care are watching this development closely to see if this concept brings improvements to the complaint process.  This process is by all evidence is still a lengthy and bureaucratic process but the fundamental change is that the ombudsman’s focus is to address the concerns of patients.  The purpose is to address patient concerns and communicate with the patient on an ongoing basis to ensure the patient is apprised and involved in any of the steps in the process.  The big question is ...will recommendations by the Patient Ombudsman have any real effect?  Does the office of the Patient Ombudsman have any real "teeth."?

The Bottom Line

My perspective on this topic is rather unique.  I have experienced this process from the patient perspective, have talked to many patients about their experiences, and in an interesting turn of events I have reviewed patient complaints in my role as a hospital board member.  So I have seen both sides of the process.

My overall impression of the formal complaint process is that I recommend that patients and their families use the processes that are provided, but the reality is that many go through the process and are left disappointed by the experience.  We have to be realistic about our expectations, but that is not an excuse not to try.  Like everything in health care, you truly have to understand how the process works in order to maximize your benefit.

I believe there are many improvements that can be made in these processes and I have seen some isolated cases where some very encouraging improvements are happening.  From what I have seen, and I know I sound like a broken record here, most complaints have their root cause in some kind of communication breakdown.  Reading a critical incident review is an exercise in futility.  When reading these reports you can take a highlighter and identify dozens of opportunities where with some improved communication a serious incident could have been prevented if people were just talking to each other.  There needs to be a fundamental shift in how we communicate in health care to be more inclusive of patients and to break down the dreaded “silos” that exist within the system.  Communication is not just a  "patient-provider" issue it is also a "provider to provider" issue.  Aside from financial constraints, I believe, improved communication represents the largest opportunity for improvements in health care delivery.  The patient complaint process is just one component that would benefit significantly.

Next Post in my series on Complaining:
Part 4: Creative Complaining: Going Rogue


Saturday, June 3, 2017

The Art of Complaining - Part 2 - Informal Complaints

What is a complaint?  Complaint sounds like a negative word.  In the context of this blog I don’t think of a complaint as a negative.  The reason I complain about issues in health care is to create dialogue with health care providers.  As a patient advocate I want to raise expectations.  Do we not deserve the best care available?  Is the purpose of health care to be “average” or is the purpose to be “excellent”?  The quickest and easiest way to understand areas where we need to improve is by listening to the complaints of patients.



When I talk about complaints many immediately think of the formal processes involved in doing so.  Contacting patient relations and filing a formal complaint.  The problem with this is that when you get to that point you have probably missed several opportunities to reach a positive outcome.  If you are at the point of going through the formal complaints process, then it is likely that communication with your care team has degraded significantly or harm has already been done.  The whole point of this exercise should be prevention.  This is why informal complaints are the best tool a patient has of enhancing their care right here and right now.  Not 8 months from now.  It is also important to raise issues effectively while maintaining a good relationship with your care team.

What is an Informal Complaint?

When I talk about informal complaints what I am really talking about is communication.  The skill of raising concerns and complaints in a constructive way to achieve a mutually beneficial result.  These kind of complaints usually involve front line staff who interact on a daily basis with patients, not the high powered executives who manipulate the levers of the health care system.

When you talk to many patients and they explain some of their frustrations with health care, many of the concerns are not medically related.  Numerous studies show this.  Many times, patients are frustrated by a lack of communication or not being given information that is relevant to them.  Patients frequently complain about not have a clear understanding of the diagnosis or the treatment plan.  Having talked to many people who work in patient relations the biggest issue that comes up over and over again is poor communication.  Simple misunderstands that erode trust until the health care relationship is damaged so badly that quality of care is negatively impacted.  Communication is a massive issue in health care.

We have to remember that health care is a world unto itself.  They have their own language and processes that are completely non-intuitive to those who do not experience it on an ongoing basis.  Many who are patient advocates are trying to help change this culture but it isn’t going to happen anytime soon.  So what do you do today?

Ask Questions

Many of us who are not medically trained can be easily overwhelmed by the health care system.  Even clinic visits can be very challenging if you don’t know the processes involved.  You have to ask questions to figure things out.  When making an appointment ask about parking.  When arriving at a massive hospital stop at reception and ask for directions.  When arriving at a clinic ask how long you may be waiting.  Do they have Wi-Fi?  If you step away to go to the bathroom and they call you will you miss “your turn?”  All of these questions are simple (and necessary to survive) but did you notice how many very subtle complaints were contained in those questions.  Parking is horrible, your clinic is impossible to find, Wi-Fi is an absolute must, and your cattle call waiting room system is archaic and demeaning.  If every patient asked these questions and staff had to answer these questions over and over again…perhaps someone may get the hint and realize they need to improve.  This is a great way to complain in an informal way that doesn’t get anyone upset as these questions are all very legitimate.  In this example the questions I posed served two purposes.  It provides you the information you need to survive your appointment and it also provides feedback to the health care system about the types of issues that are important to patients.  

Modes of Communication

It happens to all of us.  We wait 6 months to see a specialist and we dutifully do our homework and prepare for the appointment.  We prepare questions, bring a pen and paper to take notes, and do all of the right things we as patients are supposed to do.  We have an engaging 10 minute conversation with the esteemed Doctor and feeling empowered at a job well done we leave the appointment.  Inevitably, on the way home we think of a couple more questions and then recall one really important issue we failed to bring up.  You arrive home feeling like an abject failure feeling the entire appointment was a waste of time.  Here is my problem with the conventional Doctor’s appointment.

If you met a really nice girl, engage in some conversation and after several requests she finally agrees to go out on a date with you.  After the date, what message would you take away if she never gave you her phone number or any way of contacting her in the future?  Probably not a good sign.  So if a Doctor gives you no way of contacting them after an appointment, are they sending you the message that they would prefer to never see you again?

When an appointment is concluding there should ALWAYS be an exchange of information of how to contact either the Doctor or a Clinician who works with the Doctor if there are any questions or follow up.  We have so many methods of communication today this should not be a difficult request.  Ask what works best for the Doctor.  Phone…email…text… what works for them?  This is not an unreasonable request.  If your physician refuses to offer any effective way of communicating outside of a planned clinic visit (that you may have to wait weeks for), maybe you should think about finding another Doctor.  Which brings me to my next point.

Build Your Care Team

When you ask questions or make inquiries about your health, the hope is that you start a conversation.  In a conversation you can learn much more than reading a pamphlet or dutifully listening to a well-rehearsed speech.  In a conversation, two people interact and learn about each other.  You start to build a relationship.  If anyone in health care is willing to engage with you… hang on to those people.  As you start to build a relationship, from that relationship you begin to build trust.  Trust is a huge issue.  What is the point of having a physician who is highly regarded and the “best in their field” if you can’t communicate with them?  In spite of their list of qualifications, if they can’t communicate effectively they can easily alienate a patient and trust becomes a factor.  When we are admitted to hospital we always try to make a connection with someone (anyone) who is willing to engage in conversation and explain what is going on.  The trust that you build gives you the confidence to leave your child’s bedside and actually stop, go to the cafeteria, and have a meal without the fear that “something” might happen when you are gone.

Our care team is our life line.  The beginning of our care team was formed on the day of my son’s diagnosis.  In addition to our Doctors, we were introduced to our nurse clinician who gave us all of the clinic’s contact information, the 24 hr pager number for Cardiology, her office number and her own personal pager.  We were encouraged to call if there were any concerns.  They were available 24/7 for us.  We felt like we had support.  5 weeks later we needed that support.  It was the openness and engagement that we felt that prompted us to page our cardiologist, without the fear that we were taking up someone’s valuable time.  That phone call that likely saved our son’s life.  To this day I trust our team implicitly.  When we have a negative experience in their clinic or in the hospital I have complete confidence in them to address any issues and openly communicate with is.  We may not always get the answer we want, but we do get the best information available. Trust also adds the benefit to our clinicians who don't feel like they are being second guessed when we ask questions.

Minor Communication Errors can have dire consequences

It's the Little Things that Matter

Yes, many of the things that I have discussed are small things.  Little frustrations that we all face.  However, when we don’t say anything we facilitate the gap that exists between us (the patient) and our health care system.  There are many things we can do to engage our health care providers, establish relationships, and build trust.  If we don’t question policies & processes we are admitting failure before we even start.  It is important to challenge the status quo as we need to give our health care providers the feedback they need to improve and succeed.  They will never succeed if we aren’t providing feedback.  Even in an Emergency Room environment it is possible to make a connection with a doctor or nurse, engage with them for only a few hours in spite of the fact you may never see them again.  We are all capable of this.  Health care relationships should not be sterile and unfriendly. 

The whole point of addressing the small issues is so they don’t become big issues. 



Next Blog Post: Part 3: The Formal Complaint Process aka “The Slow Boat to Frustration”

Saturday, May 27, 2017

The Art of Complaining

Over the past few weeks I have been working on a series of blog posts.  A topic that is not talked about a great deal but that I have learned is an important skill for everyone who advocates within the health care system.  The “Art of Complaining.”

I strongly believe that most of my adult life I have been preparing to be a patient advocate and a caregiver.  That seems odd given that before our diagnosis a little over nine years ago I had almost no involvement in health care.  Let me explain.

In my entire professional care I have found myself in management positions with very little line authority (direct reports).  I have been an "influencer" but not in "command."  Only on rare occasions, in my career, have I had a large staff reporting to me that I could delegate work to.  I have usually been in situations where I have to "borrow" other people in the organization to get things done.  You are entirely dependant on other people.  I’ve mostly worked in Human Resources and as a Project Manager.  These are two roles where you are usually in a position of trying to support or enlist the support of others.  Both of these roles usually force you to try to enlist resources be it equipment, people, or time for you to be able to get your work or project done.  Many times I’ve worked in the background, doing things that many other people didn’t have the time to do.  Over time I’ve actually learned to enjoy the challenge.  Then I had the distinction of becoming a caregiver and having to do many of the same things that I did every day at work.  Try to advocate and support a patient in a system where I had little to know authority.

I laugh now when I look back at our first “serious” encounters in the health care system and realize how completely clueless we were.  In every sense of the word “we didn’t know what we didn’t know.”  Inevitably, we had some situations come up where we questioned what was happening.  Some issues were small like the “attitude” we got when we didn’t know something.  Then there were the bigger things where we felt significant pieces of information were being withheld from us.  These are serious issues that need to be addressed…but where do you turn to?  Who do you talk to?  When you are new to the system you have a difficult enough time trying to find a place to get a coffee never mind if you have a legitimate complaint.  Who is the right person to talk to?  What is the process?  No one teaches you how to do this.  However, the art of complaining is an essential skill that every patient and caregiver needs to know.  It is an essential Health Care Survival Skill.  I do not claim to have all of the answers or a magic solution but what I wanted to do was share some of our experiences when we had to learn how to complain…and in some cases it became a matter of life and death.  This is important.  Hopefully, from some of our experiences there can be some lessons learned.  There may be some people who may be just starting their health care journey can take something from it.  It is safe to say that we have had some successes and some failures.   It’s all about learning and improving and questioning the things that need to be questioned.



Why Complain?

The first thing I would ask anyone who feels they want to raise an issue in health care is…”why do you want to raise the issue?”  Is it to help themselves, to help others, or are they just angry?  Not everyone who complains has noble intentions.  Some people are angry and just want to tear a strip off of anyone who will listen.  I’ve encountered this many times.  I get it.  I’ve been there, but it’s not constructive.  There are many blog posts I have written, that have never been published, and that were definitely written in anger.  I was able to convey my feelings and write them down and “purge” them.  It works for me.  Others may have different coping mechanisms.  Going to the gym, music, confiding in a trusted friend.  They can all be legitimate means of “letting off some steam” in a way that will not jeopardize a relationship with a health care provider who you may need to rely on in the future.  

If you want to address a concern or go through the formal complaints process always ask yourself…”Why am I doing this?”  “Am I being part of the solution or am I contributing to the problem?”  “What do I hope to accomplish?”  These are important questions to ask as I have encountered many people who have less than genuine intentions when they complain, or write a nasty letter, vent on facebook, or go to the media.  If you are on a personal mission of self-promotion…just stop it.   You’re not helping.  This comment is directed at myself as much as anyone as I have asked these questions of myself many times.


It is vitally important that “real” issues be addressed.  This is how change happens.  Many positive changes can start out as a simple complaint from a patient or family member.  That is why it is so important when we decide to “take on” the system that we do so in an effective manner.  Being effective in an organization that you have little to no authority is not easy and we need every tip and trick possible.  This is why I want to share some of our experiences.  I know there are many out there who have their own ways of “getting things done.”  The experiences I share are just a few examples. 

...next post...Part 2:  Informal Complaints