5 Tips on Being a Loved One’s Patient Advocate

Just a few short years ago, we had the honor of helping a young boy who diagnosed at age 2 with a rare genetic disorder and his mother, Erin, as they battled the fight of his life.

Erin’s journey was not much different than many of our own. To find answers and advocate for her son, she realized the complexities of healthcare and balancing her other responsibilities can be confusing and exhausting. However, by sharing our experiences, along with some insider knowledge, we were able to ease the burden during such a difficult time for Erin and her family.

Maybe you are overwhelmed by taking care of a loved one with an ongoing illness. Or perhaps you’ve left a doctor’s appointment more confused than you were when you got there. It is completely natural to feel nervous as you or a family member is experiencing a stressful situation when it relates to health and wellness.

These are issues that many of our clients grapple with daily at 2×2 Health, a team of experienced healthcare professionals who fill the gaps by providing coordination of services, clinical companionship and recovery care for individuals and their families.

As clinicians (Wendy Benson, an occupational therapist and Beth Meyers, a registered nurse) and the owners of 2×2 Health, we’ve worked with many different patients, each who has their own unique situations (various ages, and stages of illness or conditions). After more than 40 years of combined clinical and leadership experience, we noticed common themes:

1. Feeling intimidated or overwhelmed
2. Not knowing what questions to ask
3. Having difficulty knowing where to go or what to do next

These themes and our understanding of our patients’ needs motivated us to write The Confident Patient, which coaches individuals and their families through the complex health system by providing real-life stories, sample questions, and advice from medical professionals.

A significant portion of our book discusses strategies we have identified to make a significant difference in becoming a confident patient. The following are the top five strategies to becoming a confident patient and becoming an advocate for yourself or your loved one:

1. Prepare for a doctor’s appointment in advance. It is natural to be unfamiliar with the “language of healthcare.” Every industry has specific lingo and acronyms and it is natural to not necessarily understand all the terminology that is being used. One way to prepare for this is to be ready with some questions to better clarify what is being discussed.
   • Take someone with you and have them take notes
   • Bring your medication bottles or medication list, including over-the-counter vitamins and supplements
   • Write down questions in advance and bring them to your appointment. If you don’t know where to start, even saying something like, “I really want to understand this in a way that I can describe it to my family members of all ages. Can you please explain it to me in that way?”
2. Effectively manage your healthcare information. “Healthcare Information,” which is also known as “Patient Information” and “Medical Records,” can be intimidating. It is helpful to be familiar with the information so that you can speak to and refer to tests and labs you have already completed. Communicate with your doctor and support care between visits.
   • Register for any patient portal (secure online website) platforms that your medical team utilizes (MY CHART, eClinicalWorks, Medfusion, etc.)
   • Download and bring all diagnostic testing results to all appointments
   • Document all usernames and passcodes and share with loved ones
   • Communicate to the healthcare team with whom they can share your information
3. Prepare for a Successful Procedure. When you or a loved one are preparing for surgery, it is natural to feel somewhat anxious. In addition to the following steps, it is critical that you and your family pay attention to preparation for the procedure as well as plan for the “after.”
   • Identify and communicate your primary goal for surgery. For some, this may be an increase in range of motion or function; for others, it may be pain relief or removal of a tumor. It is important that your surgical team is in alignment with your goals of the procedure.
   • Select your surgeon/surgery team based on volumes, outcomes, reputation, and communication style.
   • Be sure that you understand the procedure and information well enough to explain it to your family members of all ages.
   • Confirm that you know what needs to be done prior to surgery, what restrictions will be in place after the surgery, and typical recovery timeframes and plans.
4. Prevent and Minimize a Healthcare Crisis. Whether we are trying to stay healthy in our day-to-day lives or working to maintain our loved one’s health while he or she is dealing with a healthcare situation in the hospital, both are critically important.
   • When we are working diligently to prevent a healthcare crisis, it is important to follow through with our primary care physician appointments, dental health priorities, screening appointments, and maintaining our overall physical and mental health.
   • When it is important to minimize a healthcare crisis while our loved one is in the hospital, the following guidelines are beneficial:
     • Know who is in charge—if you don’t yet know, be sure to ask. It is important to know who is overseeing the plan of care, the physicians and services responsible for your stay in the hospital. If you are having difficulty determining this, ask to connect with the charge nurse.
     • Hand-washing hygiene—it is not only important that your healthcare team is paying attention to hygiene—even as family members and as a patient—it is critically important to wash hands regularly before physical contact, eating, and after using bedside tables, remotes, bedrails, etc.
     • Follow safety recommendations as it relates to call buttons, safety rails, bedside commodes, etc. Even for those who “don’t want to bother anyone,” it is far better to wait for help than to risk falling and further injury.
     • Take notes. It is not unusual for multiple people to go in and out of hospital rooms, and it is easy to become confused about who recommended what. Be sure to write down who you talked to, their role and a summary of the discussion points to help coordinate plans going forward.
     • Discuss your discharge instructions with your medical team before it is time to physically leave the hospital. It is far easier to discuss key points regarding medications, rehabilitation activities, or restrictions prior to being discharged than when you are at home.
5. Develop and Maintain Connections. Having connections is essential of all stages of our lives. Our connections can be even more important when we or our loved ones are dealing with a healthcare situation.
   • Take time to make a written plan—what activities can be outsourced to others while you or your loved one is dealing with a healthcare priority: meal prep, grocery or pharmacy store run, childcare, etc.
   • Actively engage with and build rapport with your medical team—ask them what has helped others in your situation
   • Familiarize yourself with regional or national organizations who can assist with transportation, meal supplements, emotional, support, etc.
   • Whether you are the one seeking medical assistance or your loved one is—take good care of yourself by:
     • Doing or watching something that makes you laugh
     • Engaging with others, especially in a way that has meaning
     • Discussing what is important to you with someone you trust
     • Taking time to celebrate along the way

We hope that through this article, we have helped you step more fully into being more empowered and confident as you navigate your health and wellness journey as a patient, as a person, and as a loved one. We’d love to connect with you and wish you great confidence and health!

We hope that through this article, we have helped you step more fully into being more empowered and confident as you navigate your health and wellness journey as a patient, as a person, and as a loved one. We’d love to connect with you and wish you great confidence and health!

For more information or to purchase a copy of The Confident Patient visit 2x2Health.com.

This essay was featured in the November 3rd edition of The Sunday Paper. The Sunday Paper inspires hearts and minds to rise above the noise. To get The Sunday Paper delivered to your inbox each Sunday morning for free, click here to subscribe.