Power to the Patient: Finding your Voice.
By Paula Erwin-Toth
Patient empowerment in healthcare is a common topic in articles and discussions. You may hear a variety of terms used such as “self-care efficacy” and “patient centered care.” You might say it certainly sounds logical and seems as if it should be an easy thing to accomplish, right? After all, without a patient where else would any kind of health care be centered? Surprisingly, it is not as easy as you might think.
For years, the health care provider-patient relationship has been very much like a parent-child relationship. You went to your doctor for a problem. Studies indicate they would decide what is wrong with you within 30 seconds, often before you even had a chance to explain what exactly was going on. They decided what you needed to do and you went home and did exactly so. It was often a one-way communication process. If you did not do it you were labeled difficult, non-compliant or non-adherent. If their plan failed because you may or may not had been able to follow it, and the failure was deemed pretty much your fault.
Be an advocate
In my many years of nursing, I am proud to say that being a patient advocate has always been an integral part of my practice. I had terrific mentors that helped develop and refine my approach to care, but living with several chronic conditions related to birth defects had a huge impact as well. There has never been a time in my life when I have not been a patient myself. My first memories were of hospitals, and I was a very observant and communicative child. My mom (who was a modest, mild manned woman) was a tigress when it came to advocating for me. In the days before computers, the internet, and even photocopy machines, she searched libraries trying to find the most current medical and surgical information on options being developed to help children with my condition. I clearly remember one time, I think I was about 5 years old, when my mom pulled out a sheet of paper where she had written down questions to ask my doctor. He looked at her with derision and said, “I see you have been reading again.” She calmly replied, “Yes, and I would like for you to answer my questions.” Whoa, go mom! Not surprisingly, my mom and dad found another doctor.
Communication is key
Effective communication is the key to all great interactions and relationships. As a person living with scleroderma you know what it is like to interact with many different healthcare providers. They, like you have their own experiences, pressures, knowledge and biases. I have no doubt you know more about scleroderma than the average doctor or nurse who does not specialize in autoimmune diseases. All of us bring something to the table when it comes to healthcare. You bring the fact that you are living with a chronic condition day in and day out; your healthcare providers bring varying levels of education and expertise. You want to feel better; healthcare providers want to help you feel better.
5 Tips to become an empowerment patient
There is a clothing store in my area that has been in business since the late 1800’s, their slogan is “An educated consumer is our best customer.” From my perspective as a nurse: “An empowered patient is the BEST patient.” Patient empowerment is a shared learned experience that requires respect, patience and excellent two-way communication skills from both parties. Most of all it requires commitment by all involved. Here are a few tips that might help you:
- Be honest, but also be tactful. Let’s face it, most of us respond best to questions presented in a way that is not angry or challenging.
- Have your thoughts organized and prioritized so your major needs can be addressed right away. Most healthcare providers have patients booked in rapid succession and you want to make the most of your visit.
- If you interact with someone who is unfamiliar with scleroderma use the opportunity to educate them in a positive manner and direct them to helpful resources like the Scleroderma Foundation.
- If you are being seen in a teaching facility and want to ask your attending physician a question that may be uncomfortable for you to talk about in front of a lot of people, ask them if you could see them alone for a moment. I have had the privilege of working with (and being cared for by) some of the greatest in medicine and surgery. They will be happy to kick out a roomful of residents and nurses to chat with you alone.
- Last but not least, don’t be afraid to speak up!
Remember, the better prepared you are, the more successful your doctor’s visit as well as the relationship with your doctor can be.