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 ?  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 and 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

Who Speaks for the Patient?

The Lorax 2012, Universal Studios

"I am the Lorax.  I speak for the trees.  I speak for the trees for the tress have no tongues."

-Dr Seuss, The Lorax

In the remake of the Dr Seuss story of " the Lorax" the movie promos describe the Lorax as "the Legendary...Slightly Annoying...Guardian of the Forest."  The story of the Lorax is (at it's root) an environmental story but I take something else from it.  I see an interesting comparison between the Lorax, who speaks for the trees, and health care providers who claim to " speak for the patient."

The fundamental difference is that the "trees" in the story could not talk but "patients" in the health care system; can speak.  They can do it quite well.  If given the opportunity.

For the last 25 years the patient & family centred care movement has been steadily gaining acceptance within the health care system.  It has become so important that we are seeing many health care leaders speak fluently the language of patient centred care even if they have no idea what those words actually mean.  We are seeing quotes in the media and policies being written, all that espouse the virtues of "patient centred care."  It has evolved to the point where the words "patient centred care" are almost meaningless.  Today, we slap the label "patient centred" or "patients first" on any policy or promotional item without giving the words (and their meaning) a second thought.  Only in limited circumstances are patients allowed to truly be an effective partner in their own health care.

Patients need to participate and be heard.  To my esteemed friends who work in health care; you are NOT the "Lorax" and you DON'T speak for the "patients."

Photo Courtesy of the Winnipeg Free Press - April 26, 2017

I think early on, when patients started to gain their voice, they did so through sharing of their own stories.  A patient story is a powerful tool.  Typically, patients were brought in to share their story at the beginning of a meeting or at a conference.  They would spend fifteen minutes, or so, baring their soul and after everyone was suitably moved they would conclude their talk and would get up and leave.  Once gone, the "adults" of the health care system could get on with the job of managing the health care system.  I know this from experience. I've been one of those people.  Not a second thought would be given to trying to learn a lesson or derive some knowledge from a person who just opened themselves up and shared some of their darkest moments.  To listen to someone share some of their most personal experiences and not try to learn from them is about as insulting as it gets.

Realizing how powerful the patient experience can be, some brilliant strategists have taken a different approach.  If they could position their organization be it a union, drug company, hospital, government, or regulatory body as the "champion of the patient" they could promote their own organization and their own goals by positioning themselves as a group that is an "advocate for patients."  This has now become common place.  I find it ironic that there are so many groups out there from doctors to nurses to administrators who all claim to be fervent advocates for patients but are capable of treating patients with such disdain.  The reality is that there is no one group who speaks for the patient, but the patient.

And The Patient Will Lead Them

It is time to flip the tables on the health care power structure.  For many years patient advocacy groups including the Institute for Patient and Family Centred Care has been talking about collaboration.  Collaboration between patient and health care provider.  An excellent concept and I truly believe that some of our providers truly embrace this concept, but they seem to be the exception rather than the rule.  True collaboration in health care is rare as we have found out through personal experiences.

To move the cause of the "patient" a step further beyond collaboration I think it is time for the "patient" to lead.  Any great leader knows that they wouldn't get very far without superb staff supporting them.  Please don't misconstrue these comments as minimizing the wealth of knowledge that Doctors and Nurses can provide.  Any decent leader knows that they can't know everything and must rely on other's expert knowledge.  At the end of the day the patient should be the decision maker.  To make intelligent decisions the patients needs good information.  The question is where will that information come from?  Your Doctor or Dr Google?

The other benefit of taking on the role of leadership in your own health care is that you will look at your own health care much differently.  It is an unfortunate reality in today's health care system that unless you advocate for yourself you are likely to receive sub-par care.  Nurses and Doctors tell me this all the time.  As long as you are firm but respectful you will stand a much greater chance of getting better health care.  From my own experience, when I think I have been a little too "pushy" or might have crossed the line.  I invariably receive a comment from a Doctor or Nurse that "I am just being a good advocate."  Most competent health care providers welcome patients who "own" their own health care.  These are the people they want to work with because they know that empowered patients are the one's who will receive the greatest benefit from their expert care.  They also know that all of their hard work can be undone by someone who doesn't take self-care seriously.  A great deal of medical expertise, resources, and expense can be undone rather quickly by a patient without the resources (or information) to continue their care in their own home or community.  The reality is that in your health care experience you actually spend very little time in contact with Doctors and Nurses.  Would it be 1%?  Who is looking after your health care the other 99% of the time....that is you...the patient.  A patient should have a great interest in being engaged, educated, and empowered.

Patients can (and should) be leaders in their own health care!

My challenge to you...the next time you see your Doctor ask them a question.  "How can I help you do your job of providing care for me?"  I guarantee this will change the tone of your next visit.  Remember being leader does not mean being a dictator.  You can work collaboratively, but at some point someone needs to make the decisions related to you health.  Wouldn't you prefer that your health care decisions be made by you with the best information available?


NOTE:  This post is dedicated to Lea Legge, Nurse Clinician with the Variety Children's Heart Centre in Winnipeg.  She retired a few days ago and she will be greatly missed.  Thanks Lea for helping us find our voice.  Words cannot express the gratitude we feel toward your many years of service to the families of heart kids across Manitoba.