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.