How to Be Your Own Best Medical Advocate

Jun 16, 2015

Whether you’re someone with a seriously ill child, an aging parent, or struggling with your own illness, it’s important to realize that you must be your own medical advocate. This is particularly true if you’re hospitalized.

Make no mistake about it. Once you enter the hospital, the stakes become much higher. Yes, our medical care and our technology is unsurpassed. Still, the system is complex. With so many players on the field, there’s a lot of conflicting information. It’s difficult to wade through it all, and decisions must be made.

Your team of doctors are there to offer expertise. Even so, it’s wise to take responsibility for your own care. Being a self-advocate means that you understand how the system works.

Looking back over my own experiences, here’s a few pointers that will help you step into the role of medical advocate for yourself or someone you love.

Enroll Another Set of Eyes and Ears

When you’re ill, it’s virtually impossible to absorb all the information thrown your way. Part of being a good self-advocate involves having the right people around you. Whether it’s a parent, spouse, or friend, you want to have another person walk along side you through the process of hospitalization and recovery.

This person can help you make sense of the information, see patterns of recovery or regression, help you hear and remember what the doctors or nurses are saying, and follow through on medical recommendations.

More importantly, this person can offer encouragement and support along the way. In a hospital setting, things are constantly changing, and people are coming and going. You want to make sure that you have personal support to help you maneuver your way through the maze of changes that are ongoing in both your body and the medical system.

Know Your Doctors and The Role They Play

The first thing to know is that the attending physician on board acts like a quarter back. He may or may not be one of your primary care physicians depending on how you came into the hospital.

For example, when we entered the hospital with Michael the first time, I was surprised to learn that Michael’s primary doctor did not have hospital privileges. Not all doctors are associated with every hospital. We wound up with an attending internist that I had never seen before, and he became our primary care doctor over the next four years.

The point is, your attending will be the one to request consults from specialists—many of whom you didn’t even know you needed. He will discuss options with you based on test results, but ultimately, it’s your responsibility to know who these specialists are and what role they play.

It’s equally important to know that all doctors are not created equal. Chances are your quarterback won’t know what the specialists know. And, your specialists are just that. Experts in their particular chosen field.

This factor is vital to how you manage your hospital stay. Don’t waste energy telling every doctor everything that’s going on in your body. When you communicate your changing conditions to one of your specialists, you want to speak to the specifics of his area as much as possible.

It’s important to remember that most doctors have a limited amount of time to visit far too many patients. They are trained on precision. This means that a cardiologist cannot answer your questions about why your hormones are raging or your toe nail has turned blue. Don’t ask.

Understand whom you’re talking to, and the role she plays. Be direct and specific with both your questions and the information you share. This helps you and your doctors make informed decisions about your level of care.

Create a Paper Trail

Please don’t assume that the computer holds the key to your recovery. Yes, the medical team has immediate access to your history, test results, x-rays, blood cultures, and all that goes on.

In reality, however, I’ve witnessed far too many instances where the medical team either fails to read written orders, misinterprets them, or just chooses to do things a different way based on their own training or expertise.

In other words, it’s difficult for communication to occur between a team of 20-30 players—no matter how much technology is in place. In a hospital setting, people are moving in and out of your room.

Remember this: You are the only constant in that environment.

Anything beyond a one week visit, and you’ll want to begin keeping a journal of which doctors are saying what, names of medications and exact dosages, why you’re taking them, and how you’re responding, to include time of day and circumstances. You’ll also want to keep track of any diagnostic tests and the results so that you can intelligently talk with your doctor.

Such information helps you track patterns of response. Patterns help your doctors make sense of your progress.

Bottom line. The system includes politics between doctors, nurses, and the hospital. This is not necessarily a bad thing because it keeps people from getting in each other’s way. You don’t want to assume, however, that everyone on the team is speaking on a regular basis. Your doctors respect and appreciate when you’re knowledgeable and able to share real-time data about what’s going on with your body.

Be a Decision Maker

The good news about putting two complex systems—your body and the medical community— under the same roof is that, together, they adapt to one another and create options.

In order to know what those options are, it’s your job, as a self-advocate to ask pointed questions. Don’t ever assume that just because a doctor orders a procedure, it’s the best one for you. Remember, our health care system is only beginning to explore preventative measures. Most doctors are trained in treating a diagnosis. This means that they sometimes order medications, tests, and exploratory procedures—well, just because it’s “protocol.”

Research alerts us to the fact that when an elderly patient goes into the hospital, they often come out worse than when they went in. Too often, they are subjected to a host of medical procedures that only compromise their system further. Before long, they find themselves down a never ending rabbit hole of ongoing medical complexities.

You don’t want to be a bystander to your own health. Be as informed and proactive as the system allows.

Your doctors and the surrounding medical team are there to help you resolve your medical issues. It’s a tough job, and the more actively involved in the process you can be, the greater your chance of full recovery.

Never underestimate your role as an advocate. It’s vital to the outcome of your health or the health of someone you love and care about.