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By Trish Pooley

What is Patient Empowerment?  Part 1 of 3

There are many different models of “patient empowerment” depending upon the origin of the model. Is it a hospital, clinical practice, physician’s organization or patient advocacy organization defining the parameters? Models tend to vary. I am going to adopt a definition provided by the European Patient Forum: Patient empowerment is a process that “helps people gain control over their own lives and increases their capacity to act on issues that they define as important. Developing a sense of personal control over your health is itself empowering. The empowered patient is confident in their ability to manage their condition.” For those of us who are living on TPN, this is critical. The path to patient empowerment often begins when we discover we have no voice in decisions being made or we don’t know how to use our voice to get what we need. We may experience frustration, stress, anxiety and fear as an acute change in our bodies leads to a diagnosis of chronic illness which is going to radically change how we live. Intestinal failure with a need for TPN qualifies.

The Nutrishare Model:

Many years ago when Nutrishare’s founders, Rod and Tom, decided to create a pharmacy to focus exclusively on IV nutrition  therapy, they developed a model that embraces the primary elements of patient empowerment. It starts with information through education because “patients make the best decisions when armed with the right information.” Before I started TPN, one of the Nutrishare PharmD’s contacted me to let me know he would be flying to Los Angeles where I was in the hospital about to start TPN. Richard arrived the next day to begin showing me all the pieces of equipment I would be using. He demonstrated how to do a sterile dressing change and after covering an overwhelming amount of information, he asked what other information I needed to cope best. I only had one question that we hadn’t covered; How do I have sex safely with my partner now that I have a line hanging out of my chest? Richard laughed, but took seriously my concern, and had a ready answer…VYGON tubing…that would eliminate my fears over the length of line available to me. He then explained how to protect the catheter itself during intimacy.  What a relief!

I was so impressed as a Nutrishare patient because when my kidneys failed and I started dialysis, the education I needed didn’t happen until much later, so my anxiety increased as I watched “things done TO me” without understanding why. Nutrishare made it clear that I would be taking an active role in my care to optimize my quality of life. I felt safe.  While access to information is a key driver of patient information, health literacy is defined as “the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate decisions.” Do you feel confident in your ability to ask questions and get the help you need when you need it? Nutrishare provides this confidence by providing 24/7 access to a PharmD for help in solving problems.

Testing the System!

I can easily recall the first time I had to test this system. It was 3:00AM when I had a problem with my pump. I called and waited for my PharmD to answer. The first thing he said to me was “Trish, thank you for calling to ask for help. Even though I haven’t talked to you before, I want you to know I have all the information about your health history right here on my computer so let me know how I can help.” I described the problem as I was sweating bullets on my end of the phone, alone in the middle of the night while needing to solve a problem I had never encountered. Ian was very calm, very patient, very clear with his instructions, and 45 minutes later, I was once again infusing my TPN. Before we ended our conversation, Ian remarked “Trish, you made a really good decision to call. This is what we want you to do when there is a problem or you have a question. Thanks for trusting us to help. It was nice to meet you. Don’t hesitate to reach out again.” WOW. He reinforced me for doing exactly what I needed to do but feared doing in the middle of the night.

I contrast this with the last time I needed to call the answering service in my hometown to talk with my PCP who was on-call.  She answered the phone with a degree of petulance, along with the question “Just what exactly do you think I can do for you at 11:30 at night?” It had been over three years since I’d made such a call, but I let her know I had just returned from a 12-hour visit to the ER due to intractable diarrhea requiring hours of IV fluids. Despite a white blood count of 24,000, I was not permitted to be examined by a doctor. My request? “Please secure a hospital admission for me to be tested for Clostridium difficile and placed in contact isolation for treatment.”  An hour later, she had secured an admission. The next day I did receive a diagnosis for C. diff which turned out to be the trigger for my intestinal failure.

Clearly, respect, reciprocity, and collaborative decision-making is key to our health, especially in emergencies. How do we go about building such a relationship? If the anxiety you are experiencing in trying to get answers isn’t being addressed, it needs to be. Stay tuned; I’ll be sharing more concrete ways to go about becoming an empowered patient.

 

Stay Tuned for part 2 & 3