Category: Advocacy

Hospital Warrior-Take II

You may remember the “Hospital Warrior” post from a few weeks ago, in which we discussed the importance of having somebody to go to bat to make sure that you get good hospital care, delivered on time, when you need it. 

Today I spent some more time looking around in the Hospital Warrior site and came up with this. Rather than focusing on having someone else be your advocate when you are down and out, this piece focuses on how to organize information when you are newly diagnosed with a serious and chronic disease, in this case MS, so that you can be your own best advocate. In this regard, issues such as how to start with getting an understanding of your diagnosis, identifying your needs, establishing your goals, learning to speak up and recruiting help as necessary are all covered in this handy-dandy guidebook. 

Bottom Line. The common theme here? Preparation! From diagnosis through crisis, it is imperative for a patient, and/or for a patient-advocate, to take an organized and forceful approach to gaining access to appropriate care. 

Letting the chips fall where they may is not a viable option!

How to Become a “Hospital Warrior”

Check this out. What you will see is the story of a layperson who has learned the hard way, i.e., by fighting for appropriate medical care for her husband, how to work the hospital system.  Terminology is, as always, important. At the Hilton Head Volunteers In Medicine Clinic, we use “Patient Navigators.” Frankly, many of our patients have never had a doctor before, don’t speak English, and need help getting to the right person at the right time. That’s different.

“Patient Advocate” is closer to what is being talked about here, but still falls short of some of the visceral feeling that is being discussed in this book. What we see in this tome is the advice that someone needs to actually get belligerent to get the right care for a patient in some circumstances in some hospitals.

An unfortunate case in point. At a friend’s birthday party a couple of weeks ago, on a Saturday night, I met a great couple. Happy. Healthy. Beaming. She in her 50’s, he in his early 60’s. That day, he had won a 5-mile kayak race. They had gone to a wine tasting, and now he was dancing at the party. My wife and I left at about half time, but the party continued until 1 AM. He had a difficult time walking the short distance to his home. Couldn’t breathe. Not COVID. In an ambulance to a local hospital at 2:30 AM. Three days later, I was told he was going to be intubated. The next day, I learned that in the process of being medevacked to MUSC, our tertiary care hospital in Charleston, he had died in the helicopter. A full five days after initial admission to the local hospital!!!

Bottom Line. As I looked at this book’s URL, I wondered. I wondered whether if a “hospital warrior” had been fighting for his care, would the chopper have lifted off days earlier and he might still be alive?

We’ll never know!  

This is Nuts!

Check this out. What you will see is a website dedicated to the support of those air travelers who have peanut, tree nut, or other severe food allergies. In particular, check out some news stories about flying with food allergies. Note specifically those dealing with auto-injectors on airplanes. EpiPens. Remember the scandal a few years ago when the price of these epinephrine self-injectors skyrocketed? Here’s an even bigger scandal. Airlines, you know the ones that serve peanuts routinely for some unknown reason, are not required to carry EpiPens.

Two points to be made here. The first is an obvious one. Why no EpiPen requirement on airliners? Although some airlines have added this piece of basic equipment to their inflight medical kits, there is still no requirement that all carriers do so.

Which takes us to the second and more general point. What kinds of medical emergencies should airlines equip their planes, and train their crews, to deal with? Medical emergencies onboard are scary propositions, and the old “Is there a doctor on board?” plea is of limited value. My son’s sister in-law, a physician on a plane returning from a stint volunteering in South America, responded to such a plea. The only problem was that the problem was a cardiovascular one, she is a subspecialist in ophthalmology, and the plane’s medical kit was devoid of any equipment that might be of assistance. The event did not end well.

Bottom Line. Isn’t flying scary enough for many people? Shouldn’t airlines be required to invest a few hundred dollars in some basic equipment and crew training to save a life that might be taken by a single peanut?