Health Literacy - Do You Get It?

Health literacy. Health care buzzwords of 2013. Two words that can make a grown adult feel like a child. The elephant in the room. How do I explain health literacy without making people feel like idiots? Life gave me an example.

Last week I needed to have my internet provider send over a technician to troubleshoot some crazy problems I was having with email. I’m not new to computers or the internet, having bought my first machine in 1987, but I didn’t understand why more than a thousand emails that I had deleted weeks, months and years ago were reappearing in my inbox. The technician arrived with a trainee in tow. I described my problem for what seemed like the millionth time. The technician turned and looked at his trainee and explained what they’d be doing to check my signal strength, modem and router. I had no idea what they were talking about. I know what a modem does. I know what a router does. I installed both of them. But I had no idea what these two young men were talking about, didn’t understand what those numbers and graphs on their laptops were telling them, and I could guide them no further about my situation, never mind try to decide the next course of action. Clearly my computer literacy level was not as great as I thought it was. I felt pretty dumb, pretty computer illiterate, so I went and sat on the couch with my dog and let the guys do what they do.

Translate that experience to your own health care situation. You’ve owned your body your whole life, and you have a kind of communication going with it. One day your body tells you that you’re not feeling well, maybe starts a cough and fever and sends up an urge for chicken soup. So you call your health care provider and explain your problem in order to get an appointment. Then you go to the office and explain your problem again to the person who has the machines that measure your weight, vital signs and oxygen level. Then you get to see the provider and explain it all over again. Maybe they’re paying attention, maybe not. Maybe you’re giving all the information they need, maybe not.  All you know is that, when the provider starts explaining what may be going on, what tests you’ll need, and how you should take your medicine and take care of yourself, you’re suddenly lost in a language you don’t quite understand (“medicalese”) and you start to rely on faith that whatever that person told you is the best thing for you to do. You stop participating in the process, just as I did with the computer technicians, and you step aside and let the providers do what they do. And that’s just wrong.

Enter 2013 and health literacy. Today we’re telling you that you own your body, and you’re empowered to make all the decisions about it – but no one explains just how you’re supposed to do that! How do you know if you have the information you need and that you’re processing it correctly so that you can make decisions about your health? You probably don’t. Many millions of Americans have basic literacy issues to begin with, which means they can only read at or below the 5^th grade level. When it comes to health literacy, it’s not only those with low basic literacy levels who run into trouble; even a person with a PhD in rocket science can be completely baffled by what’s going on with their body. Anyone can have low health literacy. So don’t feel ashamed if your provider is speaking a language you don’t understand, because that’s exactly what’s happening – and it’s happening to many millions of people. Health care has a language and a culture all its own. It’s a club, and you don’t get to know the secret handshake. But we expect you to understand what we’re saying and to make decisions about your health. We expect you to understand your own anatomy, physiology, pathophysiology, pharmacology, mathematics  and all kinds of special topics that are second nature to us - but that are totally foreign to you. 

There’s hope. Don’t go sit on the couch with your dog. In my next post I’ll explain what we’re doing to help you understand - so that you can make decisions with confidence.  It can be done!

It's Getting Scary Out There in Healthcare-Land!

That healthcare in the U.S.A. is in a state of upheaval is a given.  The ‘game’ has changed at every level. National health policy is being written, monitored & enforced in part by people who’ve never been near a patient. Hospitals are closing and merging and giving way to giant medical centers, limiting access to care, in the name of savings and profit. We’re in the midst of an unprecedented shift in the health insurance model that’s as much a leap of faith as anything. Private health insurance companies continue their stranglehold on policy coverage, but the Affordable Care Act has set new terms about at least pre-existing condition coverage and preventive care screening tests. Pharmaceutical companies continue to push drugs during family television time, though not without regulation intended to give at least the appearance of propriety. 

The traditional model of medical care delivery, where most decisions about a person’s care are made by the attending physician, is slowly giving way to a patient-centered delivery model where the patient makes the decisions, and that also allows for nurse practitioners and physician assistants to function as primary clinical providers. The American Medical Association is trying to hold on to the traditional model, but the tide is changing.

With that, the nursing profession also seems to have lost its footing, at least temporarily, by virtue of a persistently nebulous definition of what the profession has to offer in today’s health care delivery system. Recently, in an alleged cost-cutting move that speaks volumes to the ease with which the nursing profession can be beaten down and manipulated, Vanderbilt Medical Center circulated a memo directing that nurses are to assume duties such as cleaning bathrooms, sweeping and mopping floors, and emptying trash. (Sent to me by a friend). http://www.wsmv.com/story/23364976/vanderbilt-medical-center-to-have-nurses-cleaning-up. 

Today, minimally trained nursing assistants perform many of the patient care duties that RN’s once considered the domain of the profession, and the hierarchy within the profession creates confusion as to who should be providing the care – the ADN, BSN, MSN or PhD-level nurses!  Everyone wants to be the boss, and the bosses all want the least trained people to be administering the care to the patient, who is supposed to be the center of the care.  If Vanderbilt has its way, the nurses will be the housekeepers. How much more upside down can it get?

For all the changes, I always believed that there was one stronghold of the nursing profession that would never give way to those who would overpower it. Advocacy. The soul of the nursing profession, in my opinion, is advocacy. Nurses are the guardians of the patients. We keep safe those under our care, provide education, help with decision-making, assist with efforts, walk with our patients and their loved ones wherever the path leads, help guide to autonomy, independence.  Nurses have always been advocates.

Ah, but advocacy has changed as well. It seems today that random people can hang out  shingles and call themselves “patient advocates” – and get paid for it! And so they are, regardless of whether or not they’ve ever been near a patient, or if their entire healthcare experience occurred when they once had to take care of a family member at home. This so-called “patient advocacy” is an unregulated industry that has no legislative mandates and demands no license, particular training, standard of practice or code of ethics. There’s absolutely no national entity that is creating, monitoring or enforcing rules, and the potential for fraud and abuse is chilling. The catastrophe that could occur when a lay ‘advocate’ would dare to practice medicine or nursing, by so advising the patient, is downright scary.  Yes, there are emerging programs that are moneymakers for colleges and others who’ve never laid hands on a patient. Sadly, some nurse entrepreneurs have become the trainers. 

Why are nurses giving away, or selling, what little is left of the profession – the very soul of it – just to turn a quick buck?  Will the profession be rendered obsolete by delegation and sale to the highest bidder?

2013-09-29 - Why I'm Doing This

The question has been asked. Why, in the middle of my career, am I dropping everything to start another venture – this time combining health communication with healthcare advocacy.

The explanation for the first part of the combination is easy.  Health communication & medical writing are part of who I am. Writing is my favorite communication channel by far.  I love to write, and medical writing is a logical choice for an experienced health care professional like me.  I love to know that whatever I compose is somehow helping a person to learn something new, reinforcing what existed, or being the final light bulb that shows them the way. That’s why I write continuing education courses for nurses, and self-care pamphlets and brochures for patients, and many other types and topics in writing.

My passion for healthcare advocacy is not so easy to explain. I’ve seen a lot of change in health care since I first set foot in a hospital as a candy striper some forty-four years ago. (Wow – I’ve been in the business for a long time). From candy striper to nursing assistant to registered nurse; from staff nurse to supervisor to business owner and freelance writer/editor. In the hospital setting, I became a burn care nurse, then an ER nurse, and I dabbled in several other in-house specialties. I moved out of hospital care into home health, community health, case management, and medico-legal consulting.  And I taught programs and seminars and classes for anyone involved in the health care industry, from attorneys to physicians to nurses and assistants. Yes, I’ve been in the thick of things in many areas of healthcare for many years, and I’ve seen some things.

I’ve seen the advent of non-clinicians taking lead roles in policy-making and implementation, leaving the clinicians with hands tied and confused about how to practice safely. I’ve seen patients refused needed care because of insurance company decisions. I’ve seen the ranks of nursing staff decimated in the name of cost savings. I’ve seen nursing assistants, with only weeks of training, being delegated duties well beyond their training and education, and how the stress shows itself in all the wrong ways.

I can say only that I’ve been an advocate for my patients every moment I’ve been in healthcare. No matter where I practiced, no matter who was running the show, or what the staffing or political situation; whether the patient was conscious or unconscious and on life support, whether they were innocent victims or criminals - I’ve been an advocate for the person in my care, and for the loved ones who suffered alongside.  

A nurse walks the path with the patient, with the loved ones. It is an intimate path. We’re often together for 8, 12, maybe 16 hours a day. We support, we comfort, we explain, we take action when things go awry, we fight for the best outcome, we let go when it’s time. For a brief moment in all of our lives we have a relationship like no other, and we are molded by that experience, surely in preparation for the next person who needs our care. We are forever affected by each relationship. We take all of you home in our hearts and sometimes wonder if there was more we could have done.  And that is how a nurse becomes an advocate.

Today, with all the changes in health care, from the Affordable Care Act to the new structure of “how things work” in a Patient-Centered Medical Home (PCMH) system, the people who may become patients often have no idea what’s going on or where they should turn for information.  I’m stepping in with blog posts about healthcare issues - with a Facebook page that contains current articles of interest and a Pinterest page with more visual, motivational pieces.  I’m also on Twitter, LinkedIn, and email… whatever it takes to get you the information you need to be the center of your care, to be an informed consumer and empowered decision-maker.  And, should you prefer, I can meet with you in person on Oahu to help make sense of the mayhem and pull things together.  Ask Nurse Santos.

 Education and guidance lead to empowerment and informed decision-making.

Welcome to my website that is dedicated to health communication and healthcare advocacy.  Whether composing educational materials for nurses, writing about current issues in healthcare, or helping patients and their loved ones through difficult times, I am doing my best to improve healthcare delivery for all.