Being A Patient Advocate

I spend a lot of time in hospitals and clinics.  Too much time.  You spend to much time in hospitals when you walk into a clinic and you are greeted like "Norm" from Cheers.  Not kidding; this actually happens.

I am typically in the hospital for one of two reasons.  I am either advocating for one of my "patient" family members or I am advocating for patients as a whole and trying to share patient perspective with hospital staff.

Advocacy makes me uncomfortable.  In that role i am negotiating and sometimes pleading for the interests of someone else.  I am uncomfortable with that role because; who am I to even know or understand what "my" patient is going through.  I can easily get caught between the person I am trying to provide support to and the medical system.  For my family this is a lot easier as I know them very well and understand them for the most part.  When advocating for "patients" as a whole is a whole different matter.  This is why I always emphasize that the only perspective I can share is my own.  I cannot speak for other people's experience.  Since, I got involved with patient centred care, and have been asked to speak on behalf of "patients," I emphasize one very critical point.  Inviting one patient or caregiver to represent the "patient voice" is not meaningful engagement.  Patient experience is diverse and it is impossible for any one person to represent the perspective of all patients.

Being an effective advocate is not easy and as experience has taught me is extremely important.  It is easier to explain this as a caregiver with a child with complex health needs.  When my son, Russell, was an infant he obviously could not speak for himself.  As parents, we had to advocate for him on a constant basis.  There were many health decisions that we had to make advocating on his behalf. Many of these decisions involved subjecting him to procedures and processes that were not exactly pleasant.  We consoled ourselves with the logic that what we were doing was saving his life.  Susan, my wife, reminds me often about the times that we wanted to rip out all the lines and escape with him out of the hospital.  We had to be eternally vigilant with the care my son received as we were the only two people who were with him during his entire journey.  We often had to provide context to nurses and physicians that would read dubious notes placed in my son's chart.  It seems obvious the need for an advocate with a child.  This is why pediatrics is far more evolved when it comes to patient centred care as it is somewhat of a necessity.

In the adult health system, it is an entirely different ball game.  When I accompany my wife to her appointments I sometimes get disgusted looks as I present concerns or ask questions on behalf of my wife with her in the room. Keep in mind that she is living with a chronic illness and any physical activity leaves her exhausted.  Many times she needs someone to advocate for her because she is just too physically tired to engage in a discussion.   Although it is more common now to have a caregiver accompany a patient, it is usually an adult caregiver accompanying an elderly parent.  Being a couple in our 40's doesn't fit that mould.  That is usually one of the bigger challenges we face is that our health situation is somewhat unique and anything that is "unique" usually causes fits of hysteria from our health care providers who seem to function only on well established practices and protocols.  They don't do "unique."  After one of my wife's appointments we will usually discuss the appointment on the way home.  We always walk away having heard different things.  This is why it is so important to have two people in the room.  You retain a lot more information with two sets of ears instead of just one.

I live in constant fear for people who enter into the health care system unprepared like we were.  Not knowing what questions to ask, or knowing the "lingo" can present some real challenges which can be life threatening if real issues are not dealt with in a timely manner.  I am not exaggerating how important it is to be a strong advocate for yourself or the people you care for.

For me and my wife, we are constantly learning.  Every encounter we learn something new.  I certainly would not consider myself as an expert.  I often describe my level of knowledge as "just enough to be dangerous."

I wanted to pass along 3 key points that caregivers should remember.  These are not researched, peer reviewed, recommendation.  They are personal feelings from my own personal experience that have worked for me.  Having heard a lot of patient stories and being a volunteer these points seem to ring true for other people as well, but if you have another point of view I would love to hear about them.

Credibility

When you are caring for someone with a chronic illness you have to be prepared for the long haul.  I cannot tell you how important it is to be able to work with health care providers and get the service you need.  You become a part of the care team the same as Doctors, Nurses, and Technologists with one significant disadvantage.  These professional are not accustomed to working with "you" and they have a huge technological advantage over you.  You may be only working with a high school level of Biology which was the circumstance I was in.

How do you get a group of highly trained professionals to take you seriously and treat you like part of the team?  What I tried to do was establish my credibility.

One thing I repeat to myself as a supporter/caregiver is that I need to be part of the solution and not part of the problem. Offending the people who are caring for you or a loved one is not productive.  There are many approaches you can use to negotiate and convince medical staff to work with you and get things done.  Yes, you can demand and bully your way but i find that approach is effective only on a temporary basis.  Staff will start withholding information and the relationship may devolve into the "us" vs "them" mentality.  You will get less information and get more and more frustrated.  You CANNOT alienate the medical team who is caring for you.

One of the tools I use to be a credible care provider is to do my homework.  Do some research and educate yourself.  There is a wealth of information out there.  More importantly ask questions from your bedside nurse or when you get the chance, the doctor.  This is a lot of work and you have to pick your moments but you want to have intelligent questions ready.  Questions lead to interaction and two-way communication.  Take notes, or do what you need to do to make sure you are engaged.  This can also be therapeutic and give you a sense of empowerment.  To be very honest, most of what I know about health care I learned in the ICU.  Hours and hours in the ICU.  ICU nurses are some of the best educators out there.  Learn to be their friends.

When staff realize that you are engaged and are genuine in your concerns they are more likely to want to work with you.  The more comfortable they are with you the more likely they are to share information more readily.  It's about building a relationship.

I am stunned at some of the tidbits of information I have come across as the "professional" barriers come down.  You begin to realize these are more than doctors and nurses but real human beings.  The staff also begins to get to know you as a person as well.  This is the beginning of mutual respect (something i discuss later).  A really interesting example of this respect was when my infant son was being considered to be a recipient of a Berlin Heart (VAD).  Our team in ICU was conducting rounds with us and were encouraging us and sharing all the possible upside of the device.  During the conversation another ICU Dr walked by and over heard the conversation.  He stopped for a moment and commented that the last baby they had implanted with the VAD had died due to a brain hemorrhage related to complications related to anti-coagulation.  Boom!  That snapped us back into reality in a quick hurry.  The look the Dr received from the team who was conducting rounds was amazing...I am sure they wanted to kill him for saying that.  This was not the typical well rehearsed speech normally conveyed to parents; it was an example of a Dr letting his guard down and being bluntly honest with us because he knew we needed the truth and he had enough respect for us to share reality because he felt we were "part of the team."  Which leads me to my next point..."honesty."

Honesty

This is not about telling the truth as in "facts."  This is about feelings.  Having a serious illness is no laughing matter.  It sparks a lot of emotions and reactions.  Don't try to be someone you are not.  This is about being truthful with yourself.

Being in a hospital sucks.  Being sick sucks.  The medical processes usually suck.  No one chooses to be ill.  Keeping the stiff upper lip and putting on a brave façade doesn't help anyone.  If you are scared; say you are scared.  If you're apprehensive, admit it.  Maybe because I'm a man, and emotionally repressed, this may mean more to me than others, but there is something liberating about being honest about your feelings.  I am not condoning becoming an emotional basket case but you have to be honest with yourself about where your head is at.  If you are supporting a family member who is dying, don't go falling apart in front of them but if you are struggling with your feelings talk to someone.  It could be a friend, chaplain, councillor, whoever; but you can't keep things bottled up.  Maintaining your mental health is really...really important.  You can't be any help to anyone else if you are falling apart inside; it will eventually catch up with you.

I recall one night when Russell was in PICU, and this was some of his roughest moments.  I usually went back to the hospital in the evening as Susan usually did the early mornings.  I recall watching my son struggle.  Things were tense and very precarious for him at that time.  I was not in good shape, emotionally.  The bedside nurse knew it but didn't really know what to say.  I can't remember how it happened but we called the ICU Dr over just to get a feel for how he thought things were going.  I remember distinctly the question I asked the Dr.  "Can you tell me something so that I can go back to the hotel and sleep tonite?"  That was pure honesty.  It also caught the Doctor's attention.  The smile on his face got very serious and he paused, because he knew that the next few sentences out of his mouth would have a big impact on my frame of mind.  I shared blunt honesty with him and I got honesty in return.  I will never forget that.

Respect

Medical professionals are smart and highly skilled.  Don't ever forget that.  If you can get them to work with you, you can accomplish many amazing things.  I have been exposed to world class doctors and nurses and have been able to learn a lot from them.  I have some very specialized knowledge but I have to remind myself that I don't have the training and background that all Doctors have.  I am not a Doctor and I need to be respectful of my role.  As a care provider I am their for the patient.  Not to play armchair cardiologist.  My wife's cardiologist gets great joy in putting me "in my place" when i'm attempting to be a little too "smart."  It's just that gentle reminder I need to make me realize that I need to let her do her job.  However, living with the patient everyday I can help provide important info (context) that can help our doctors do their job.  Another role I have as a caregiver is that I can help with transition from the health care environment to our home environment where care does not stop.  Care continues at home and this is where a caregiver's role is even more important in helping create a continuum of care.  Because of this continuing care and the long term nature is why you have to be prepared for the long haul that can be life long.  Not for the faint of heart.

Giving medical professionals respect is even more critical when things don't go well.  Having participated in many committees and boards i have learned a little more about how the system works from the inside.  It is frustrating to see great doctors and nurses literally handcuffed by a fragmented and bureaucratic health care system.  Many people are trying to do the right things but they have so many systemic challenges to deal with they sometimes come off as less than competent.  In many cases this is a very unfair assessment.  In many instances I have now found myself working with staff to solve problems together.  Sometimes the voice of the patient or a caregiver with first hand experience is the nudge the system needs to make changes.  Through these processes I have gained a lot more respect for health care professionals and the frustrations they have to deal with.

The best advice I can give to people when things aren't going well is to be calm and focus on what is important.  The patient.  If you feel action is not being taken that should be; advocate.  Be respectful and ask questions.  If you need to be pushy, fine, but keeping in mind this is not about you it is about the best interest of the patient.  Work with the staff and not against them.  If you give respect; you will get respect.

Conclusion

I have discussed three principles I try to utilize as a caregiver advocating for my family.  Those being establishing credibility, being honest, and showing respect.  This is by no means an exhaustive list.  There are many more things that others could add but I think it is a start.  It is also worth noting that these principles are required by the patient and caregivers as well as the medical staff responsible for treating the patient.  It is a two-way street.  The bottom line is that you have to work together.  You shouldn't be doing this alone.

Participation Trophies

Much has been made over the weekend about Pittsburgh Steelers Linebacker, James Harrison, confiscating his kids participation trophies.

I have a couple of thoughts on awarding kids just for participating.

My son has had a very difficult first couple of years of his life.  I think the common term is "medically complex."  His medical history has had ripple effects for his development.  He is immature for his age and is overall developmentally behind other kids.  Because of his experiences many of his goals are a little different from other kids.  On the flip side he has skills other children don't have.  How many 7 year olds could act as a guide at Health Sciences Centre?

As a result my wife and I have had to adjust our expectations and how we encourage him.  In some instances, for my son, to participate in an activity, any activity, is a huge achievement.  Going to kindergarten was a huge issue for us.  There were times that we had to be pretty tough on the little guy.  I recall phone calls with the school where I had to talk to the principal and to my son and try to negotiate with them and not let my son take the easy way out on whatever task he was having an issue with.  We do need to hold the bar high and challenge our kids to succeed but we also have to be realistic.  Finding that balance is a big challenge.

My son is a really complex little guy.  I am immensely proud of him, he is one of the toughest individuals I know.  If he hadn't been tough as nails he probably would have not lived to see his first birthday.  He is also smart,  Most kids are a lot smarter than we give them credit for.  The know exactly when they have made a big achievement.  They also know when they have failed to meet expectation.  Trophies or certificates are meaningless.  It's how we as parents and adults react and interact with our kids that matters.

Last year my son was in swimming lessons.  He really enjoyed playing in the pool.  From the time he got in the pool to the time he left he had a huge grin on his face.  However, my son does like to make his own rules and listening to the instructor is not high on his list of priorities.  It was very obvious that one of the things holding him back was his fear of putting his head under water.  My wife and I talked to him about this and explained that learning this skill was important and that he would not learn to swim if he didn't set his fears aside and put his head under.  We tried a lot of things.  We would practise in the bathtub at home trying everything we could to encourage him and to address his fears.  He made a genuine effort but never quite got there.  When swimming lessons were done, we expected that he would not pass his level.  This didn't bother us as we were confident he would get it eventually.  To our surprise, our son actually passed his level.  When I checked the certificate and the evaluation I noticed that for this level he had to "attempt" to put his head under water; which he certainly did.  What surprised me was the reaction from my son.  He was angry when I told him that he had passed.  He knew that he was supposed to get his head under water and he knew he hadn't done it.  He took the certificate and threw it on the ground.  He was mad.

His reaction was partially my fault.  I had told him that he needed to get his head under water and he didn't make it.  Kids are smart they figure this stuff out.  With everything in life you need to have balance.  Not every kid gets to be an astronaut when they grow up.  That doesn't mean they can't achieve success in many other ways.  My son's greatest achievement is that he cheated death on several occasions.  He's had two open heart surgeries and has a heart transplant.  All before he was 5 months old.  He has achieved more in his life than many will achieve in a lifetime.  My son's participation trophy is participation in life.

A Walk Down Memory Lane

I had an interesting experience this morning.  I had a letter I had written, read on CJOB this morning.  In April of 2009 I was interviewed on Charles Adler's show.  This was the first time I had ever been interviewed or spoken publicly about Russell's or Susan's health care journeys.  This started what would become a passion for improving the health care system.  Before I started this blog I had a private blog where I chronicled our hospital experiences.  As I thought about this interview I pulled out my old blog as I was curious what I said about that first interview that took place in 2009.  Here is my only mention of the interview.  I think I've gotten considerably "wordier" over the years.  From this post I think you can tell I had other things on my mind beyond pandering to the media.

A Good Experience

Posted Apr 9, 2009 3:43pm

Well I'm glad that's over!

I wished everyone could have heard the conversation between the commercials. I must say that Chuck was very good to deal with and asked a lot of questions before the interview about what we wanted to discuss and things that were "off limits." I hope everyone got something out of it.

It was especially nice to get a visit from Susan and Russell after the interview. Russell had a Doctor's visit this afternoon and they never got to hear the interview. By the way, Russell is almost 16 lbs now...way to go Russell!

Donald  

Radio personalities can be polarizing.  I certainly don't agree with all of Mr Adler's opinions but there were many things that I think we definitely agree.  Diversity of opinion is a great thing.  It has been interesting crossing paths with media types over the past few years, but this first interview will be one I'll always remember fondly.

Here is the original copy of the email I sent to Charles Adler that I sent yesterday, which was read on the air this morning.  I really liked the way he read it and captured the tone I was trying to convey.

 Good morning,

 

First off, I want to wish you well on your move to the West Coast.  You will be missed from the airwaves in Winnipeg and I, and many others wish you all the best in the future.

 

On your last week here in Winnipeg, I feel we have some unfinished business that we need to resolve.  As you are someone who comes into our homes and offices, almost on a daily basis, I feel it is a worthwhile exercise to have a glimpse of how some of that influence has affected some of your listeners.  I can only share one experience and that is my own.

 

I had the privilege of being interviewed on your show in the spring of 2009.  This was a very tumultuous time for my family.  We had just returned from Edmonton where my infant son had spent 6 months in hospital which resulted in him receiving a heart transplant.  At the time, my wife was also very ill with her own heart illness.  We would be heading back to Edmonton for her own open heart surgery in June of '09.

 

This was the time when the story of Baby Kaylee Vitelli broke.  This was an infant who was diagnosed with Joubert Syndrome, a rare respiratory disease.  The story sparked numerous issues.  The parents in this situation were told by the Hospital for Sick Children in Toronto that their daughter would likely not survive the ordeal.  The story sparked a lot of discussion as the parents in this case wanted to donate their daughter's organs in case she were to die.  They not only wanted to donate the organs but direct to whom the organs would be donated.  This sparked a lot of controversy.  The whole story had a lot of moving pieces and was a media circus.

 

Having just had a child receive a transplant, and hearing about this story on the radio, I sent an email to your show. I was concerned about some parts of the story that did not seem consistent with the experience we had just been through.  Organ donation is an extremely important issue to me and my family and I felt there needed to be a better understanding of the organ donation process.  I still believe that to this day.

 

After sending my email, your producer contacted me and I found myself being interviewed on your program.  There wasn't a lot of time to prepare for this interview.  I still recall talking to you on the phone just prior to the interview and during commercial breaks.  I remember you checking with me to see if everything was "OK".  I was impressed that you were concerned about the direction the interview was going and that "our" story was being treated with respect.  It was a very positive experience.

 

It was on your show that I shared our family's transplant story for the first time in public.  I knew our story was rather unique but I did not realize until after I was on your program that I could positively impact others by sharing our experiences in a public way.  Since that radio interview in 2009, I have shared our story many times and I have become a relentless voice and promoter of patient and family centred care and an advocate for better health care.  My volunteer life has in many ways taken over my professional life.  I am on numerous boards and committees and have been exposed to some of the most brilliant people in health care.  It has been an amazing journey.  I have spoken at medical conferences, been interviewed on several occasions, and written a few op-eds.  I couldn't have ever imagined doing these things a few years ago.

 

Being on your show 7 years ago was not a life changing event but it certainly did start something.  Your show, and the topic you were discussing, prompted me to write an angry email and you were crazy enough to put me on the air.  Two crazy people trying to make a point and attempting to make things a little better in this world.  Your words do impact people, and although we may not agree on everything; you have on many occasions forced me and many of your listeners to think.  That is a great legacy.

 

Thanks for the memories, good luck in the future and God Bless!

 

Donald Lepp

Lockport, MB