Why Your College-Bound Teen Needs a Patient Advocate

Your Teen is in the hospital - they need a patient advocate

Of the many things we have talked about sharing on Our Bird Has Flown, writing about your teen’s need for a patient advocate was not at the top of our list. But a few weeks ago we had an unexpected visit to the Emergency Room, which led to a three-day hospital stay (can’t wait to see those bills!) and the realization that this was one more thing we parents of college-bound kids need to think about.

Our son is tall and thin, and evidently that (combined with a couple of weeks of a bad cough) made him predisposed to spontaneous pneumothorax. Basically air got caught between his lung and chest cavity, resulting in a partial collapse of his right lung. Yes, it was scary. Thankfully we have excellent health care services in our community and they identified the problem right away.

He was observed overnight, with an oxygen mask strapped to his face, and in the morning we were told he would need to have a tube inserted into his chest to suck the air out and get the lung fully inflated again. OK. Just fix it! They gave him some pretty powerful drugs prior to the procedure and once those wore off, they gave him some more pretty powerful drugs to alleviate the pain. Hours later, when the pulmonologist checked on him and rattled off a list of what was next, what was to be avoided, etc. I thought “What if I wasn’t here right now?”. He’s too drugged up to remember what she’s saying.

Sure enough, the next day I asked him if he remembered what the doc had said. Of course he didn’t. That’s when it hit me. In a couple of months from now, when he’s on the other side of the country, what happens if he lands in the hospital again? Best case scenario, we’re there in a day. But a lot can happen in a day and things can move fast when there is an accident or emergency.

That’s why, I expect our son to identify a patient advocate for himself by the time we show up for Parent Weekend in October.

What is a patient advocate and how do you pick a good one?

A patient advocate is someone who can advocate on behalf of someone dealing with a health issue. Often a patient is sick, tired, confused, overwhelmed or just plain drugged up. You need a person to listen to what the nurses and doctors are saying and watch out for your best interests; someone who isn’t afraid to ask questions. By the way, this doesn’t just go for your kid, it goes for you too!

According to the Institute for Healthcare Improvement (IHI)/National Patient Safety Foundation (NPSF) you want to select a person you can communicate with and trust. They have to be willing and able to advocate for you. Some of the things they may have to address include:

  • Clarifying your options for tests, procedures or treatment choices
  • Getting specific information about the diagnosis
  • Assuring that your wishes are carried out

And in the case of your college teen, they have to have the ability to communicate with you in real time.

Now that Jesse has had a pneumothorax, he is predisposed to have it recur. Since we know that, we need to take steps to ensure he has a patient advocate on campus. The plan is to exchange contact information and meet this person so there is some level of relationship.

If your college-bound teen plays sports, has a pre-existing condition or is a bit of a daredevil in their free time, I urge you to consider identifying a patient advocate and just acknowledge up front that if something were to happen, you can count on them to spring into action on your kid’s behalf.

It might not be the coolest thing to do when you first arrive on campus, but it’s probably one of the smartest.