Take control of your kidney health: patient advocates
The American healthcare system is the biggest in the world, employing millions of doctors, nurses, technicians and support staff around the country. With all these people dedicated to better care, why is it still so easy for patients to feel alone? To feel lost in the system?
The solution is often simpler (and closer to home) than you might think. The third and final patient “homework item” in our empowered kidney care checklist is simply this:
- Bring a patient advocate (support person) to every doctor’s appointment.
Dr. Richard Gibney currently serves in the nephrology division at the University of Texas, Health Science Center San Antonio, and he shares that often a spouse or adult child is already outside in the waiting room: “One of the best tools we have is sitting right outside, and they’re not doing any good out there. Bring them in! Let’s work on this together.”
“The patient is the most important person in the room. Our job is to give them the tools and resources they need to be successful.”
Dr. Richard Gibney
Who needs a patient advocate?
Medicine used to be a family affair, with doctors traveling the countryside to meet with patients in their own homes. Today, we bring patients all together under one roof at hospitals and offices. Of course, this dramatically improves efficiency and access to world-class service, but some things get lost when we take people out of their element.
Inside a sterile new exam room, it can be hard to ask all your questions and understand everything the doctors say. Once you get home, it can be even harder to remember the instructions and guidance you have been given.
Especially because they often deal with multiple overlapping health issues, the average CKD patient takes more than eleven medications. It’s hard enough to keep track of that many drugs, let alone understand how and why you are taking them.
The solution? Every patient can benefit from someone who is simply looking out for their wellbeing. We call that a ‘patient advocate.’
“It’s challenging for patients to come alone, all by themselves. We want them to be comfortable. Together, we are going to serve them and find those tools and resources they need.”
Dr. Gibney
Who can be your patient advocate?
A patient advocate is often an immediate family member, but they can also be a relative or close friend.
“A spouse or family member can provide great support,” says Dr. Gibney. “When somebody lives with you, they have valuable perspective on how you are taking care of yourself and how you are feeling, day and night.”
He shares that this outside perspective can be useful when it comes to questions about diet and lifestyle. For example, some patients will say that their sodium intake is low, but their son or daughter might jump in to correct that they eat salty snacks every day. The patient isn’t trying to be dishonest; they just don’t know any better yet.
Other times, more senior patients may think that they are taking their medications consistently, but a spouse will report that there are often pills left in the tray. These close family members are likely already involved with medications, so we want them in the office visit to share that outside perspective.
Whoever they are, Dr. Gibney emphasizes that the advocate should be the champion for you: “Their job is to protect and help you. If you is concerned or confused about something, your advocate needs to speak up.”
What should your patient advocate do?
A patient advocate doesn’t need any specific experience or medical knowledge, they just need to care about you. They must simply be willing to pay attention and ask questions.
“They can be a sounding board for everything you hear,” explains Dr. Gibney. “It’s really important to have that second set of ears.”
Before, during, and after each doctor’s appointment, there are a few small, but important things they can do to help:
1. Before a doctor’s appointment, your advocate can sit down with you to discuss any concerns you have. They can help write down a list of questions to make sure nothing gets forgotten. Then, they can also remind you to bring your data and medications to every appointment. Office visits can be stressful at the best of times, but having that companionship can relieve such a big burden.
“At the doctor’s office, you don’t have to feel alone,” explains Dr. Gibney. “A patient advocate dramatically reduces any fear and anxiety. That person is really valuable, and they always ask good questions.”
2. During the appointment, your advocate has an important job to make sure every question gets addressed, and they can also voice any new concern or confusion that comes up during the visit.
“Any questions they want to ask are great,” says Dr. Gibney. “I do this for a living all day long, but they might have new ideas or want to clarify something that I have glossed over.” Finally, the advocate can also help take notes to compare later on.
3. Back at home, the advocate can help you create an action plan based on anything they have just learned. They say you can’t teach an old dog new tricks, but with the help of a friend, a family member, a teammate, the chances of success go way up.
Working together towards health
“With empowered healthcare, our whole emphasis is not looking for disease and trying to find problems, we’re looking to stabilize people’s problems and improve their health,” says Dr. Gibney.
“When patients come to see us, we’re offering them control, hope, and optimism. A big part of that is building the right support team around them, and that team should include a close family member or friend, whenever possible.”
To some, the idea of patient advocates might seem like little more than a nice idea, but Dr. Gibney stresses that their role is directly tied to improved results: “As healthcare providers, it’s our job to do everything we can to help equip the patient with the tools they need to be successful. Family members are one of the best tools we have, often right at home with the patient almost 24/7. Why wouldn’t we enlist their help?”
