Many years ago physicians were above all, they were not questioned nor doubted. They did not have to explain their recommendations nor the consequences of them.
However, nowadays it is not the case at all, and with the internet and open access to endless amount of literature and social media, patients are slowly learning more and more about their conditions. It is clear now that “health literacy” is important both for the patients and the caretakers.
Health literacy means that patients learn how to find information and services, communicate their needs and preferences. They learn how to process the meaning and usefulness of the information and understand the choices, consequences and context of the information and finally decide which information and services match their needs and preferences so they can act.
In today’s blog I will give some advice about how to prepare for a clinic visit and expand your “medical literacy”
Essential tool #1: Research and learn
Couple of months ago one of my patients arrived at clinic with information about a new clinical trial related to his condition. Within minutes, he had us researching the data he brought in and calling other medical facilities to inquire about the inclusion process. In a matter of minutes he was transformed from being “the patient” to a valuable, contributing member of the team.
There is a multitude of information out there, and the prospect of sorting through it all can be daunting, but don’t let that deter you. I recommend finding several sites that are up to date on new and groundbreaking information and starting from there. Another excellent place to find information is through support groups. Even if you are not a sharer, the knowledge gleaned from these groups is priceless. Join one, or several!
Essential tool #2: Build your own dream team
When a new patient was meeting me for the first time, I asked if she wanted to hear more about my previous experience. However, I was surprised when she refused.
“Education, training, publications...that’s all information I can search for easily,” she said. “What no computer can tell me is about the dynamics between us. I’ve been to many doctors, some a better fit for me than others, and after a particularly grueling experience, I decided it was
important to me to feel heard by anyone involved in treating me, and for them to acknowledge that I am an active participant in deciding my treatment plan.
Over the years, you will meet with dozens of doctors, specialists, nurses, nutritionists and more. Some you will like, some will make you feel uneasy, others will make you feel confident. It may take a few tries and false starts, but creating the dream team of professionals that are most suited for your needs, both physical and emotional, is one of the most important ways to ensure your success.
Essential tool #3: Don’t be afraid to speak up
My patient and I, along with six specialists,were in a meeting discussing a complex procedure that she was about to undergo. We were sharing ideas, various solutions and debating pros and cons.
“Please hold on!” she asked and said “I don’t understand! I’ve been sitting here for the past hour, and no one has spoken to me. I have no idea what is about to happen to me.”
The room went silent. She was right. Often times, physicians get so caught up in the process of treating the patient that they neglect the person.
In my patient’s case, she took control. She made us listen. She forced us to answer. She spoke up, and made her voice one of importance. In return, we shared our concerns and together came up with a plan that was ultimately better for her. Never forget that patients have the right to take an active, vocal role in their care.
Essential Tool #4: Find an advocate
While we hope that we will always be able to make our own medical decisions and have control over our wishes and wants, suffering from a chronic condition makes us realize that there can be unforeseen incidents in which the control is not in our hands.
“I was lying in the ER,” my patient recalled. “I couldn’t move or talk. I couldn’t get the doctors to understand me. As I felt things spiraling around me, my cousin, who has been involved in my health care from day one, walked in and took control. He was my voice when I couldn’t speak.”
It is important to have someone close to you as part of your team. Whether this is a family member or close friend, your advocate should be as involved as possible, knowledgeable of your illness, prognosis and wishes, and willing to be your voice when necessary. Remember, if your chosen advocate is not legal next of kin, it is important to have official documentation giving them power of attorney.
It is difficult to receive a diagnosis of a chronic lifelong illness, but remember, learning about your conditions, asking questions, seeking for answers, support and proper care, are essential for your journey. It is your lifetime!