Help connect those near and far when it matters most. caringb.org/eM
Navigating a diagnosis and treatment plan can be frustrating and confusing. But what if you could take steps to be a great advocate for yourself or a loved one? Dr. Emil Lou, an oncologist with a passion for patient advocacy, shares some tips below.
Patient Advocacy Tips
Take a Deep Breath. When someone is diagnosed, it’s a natural reaction to be nervous or overwhelmed. Don’t let that stop you from taking the time to find the right path and the right care team for you.
Build Your Care Team. It’s important to find someone that you click with—they should fit your personality and it should feel like a partnership.
Get a Second Opinion. It’s never wrong. I strongly encourage it, especially in complicated cases.
Keep Track of Your Records. Make sure you know where your records are and send them well in advance of an appointment. I might even coordinate care in advance, so everything is lined up before you come in.
Maximize Your Visits. Set an agenda of what you want to talk about. Rank the issues—often, not everything can get solved in one sitting. We can then tackle the most pressing ones first.
Avoid Dr. Google. I tell students and colleagues, just because it’s published doesn’t mean it’s true. It’s often a patient’s first instinct to Google in a panic. But sometimes that data is outdated, untrue, or irrelevant to your case.
Understand Medication. I tell people to put all the bottles they are taking pills from in a plastic bag and bring them to the appointment. Then we take them out and they show me exactly how many of each they are taking. Sometimes you’ve misunderstood the directions on taking them. Sometimes a doctor wasn’t clear. This makes it clear.
Write Down Questions. Every patient says, “I had questions but now I can’t remember what they are.” Keep a log or pocket notebook with you that you can write down thoughts or questions as they occur. You can also ask your doctor to send you home with his notes. And, above all, don’t be afraid to ask for clarification if you don’t understand something.
Call. Every clinic is structured differently, but in my clinic someone picks up the phone. That’s where our partnership comes in. If my nurse answers a call and I’m needed, she pages me and we solve the problem in real time.
Demand Privacy. If you have someone join you at an appointment, it’s OK to ask them to leave to have a private conversation with your doctor.
Be Honest. Don’t leave out any information about medications you may be taking or other activities that could impact your health. It’s important to me to know whether something might interact with your chemo, for example.
Ask What You Can Do. The best question you can ask a nurse or patient coordinator is this: What do you need for the doctor to help make decisions at the time I am seen? 95 percent or more of your care happens behind the scenes, not at your appointment.
Show Up on Time. If you show up early, I might even see you early. Getting checked in and settled keeps you calm, which leads to a clearer mind during your appointment.
CaringBridge has been a lifeline for his family to talk about their hopes and fears and get the help they've needed to get through their journey.
Get an inside peek at how their healing process has come along: http://caringb.org/eR
For Kimberly Wright, CaringBridge was the lifeline her family needed after her father, Tom Ess, was diagnosed with colon cancer.
How CaringBridge Helped
CaringBridge assisted Tom’s family in two ways.
First, his family was able to quickly and easily get updates out to family and friends. According to Kimberly, without CaringBridge her mom and dad would never have been able to physically and emotionally communicate everything that was happening.
Second, the CaringBridge Guestbook comments gave Tom the encouragement, motivation and hope he needed to continue his cancer journey. Kimberly says, “CaringBridge allowed both my parents to feel the love of others when they needed it most during this very difficult trial.”
Tom beat all the odds and lived for three years after his initial diagnosis. After his funeral, Tom’s family found great comfort in those that continued to leave supportive and loving comments on his CaringBridge website.
Raising Awareness Worldwide
After Tom’s passing, Kimberly wanted to spread the word about CaringBridge around the globe. To raise awareness, Kimberly and her daughter Haley decided to walk the Camino de Santiago, wearing CaringBridge shirts each day.
The Camino de Santiago is a 500 mile trail that begins in the French Pyrenees and ends at Santiago de Compostela in northwestern Spain. People from all over the world come to walk the grueling Camino path for a variety of reasons including outdoor exploration, exercise, and spiritual and religious pilgrimage.
The Most Rewarding Part
For Kimberly and Hailey, the most rewarding part of their journey was meeting people from every corner of the globe and chatting to them about CaringBridge. As they encountered people from South Africa, Australia, Belgium, Germany, France, Spain, Argentina, England, the United States and many other countries, they told everyone about the benefits of using Caringbridge.
Nearly everyone they met had never heard of CaringBridge. According to Kimberly, once they were told about CaringBridge, many replied that they had a friend or family member that could use it. Additionally, people were impressed that creating a personal website was available to anyone, anywhere at no cost.
Kimberly says, “Hopefully, through our efforts spreading the word, many more people from all over the world will be able to experience the healing and hope that CaringBridge provides to those who are in the midst of a challenging journey.”
All the best,
CaringBridge is a nonprofit that supports love and connection when it matters most, during a health journey. We provide personal, protected websites where you can share updates, receive messages of encouragement and coordinate everyday help.
We believe that in times of need, the greatest source of hope and healing is the love of family and friends. Thanks to the compassion and generosity of our donors and volunteers, CaringBridge connects and serves millions of people each year.
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