Be an Advocate

 

"America's Health Care System is neither healthy, caring, or a system."

~Walter Cronkite~

"Take care of the patient and everything else will follow."

~Thomas Frist, M.D.~

Our health care system is broken. And if you're part of that health care system (as I once was), you need to hear this. You need to read this and take it to heart. Our system isn't broken by government intervention (although Medicare is a  nightmare), by lack of training, or even by lack of highly skilled doctors, nurses, respiratory therapists, et al.  It's broken because we've become so highly specialized, and because there are now so  many moving parts, the left hand doesn't know what the right hand is doing. 

Despite the technologies of the 21st century, which seemingly allow doctors from every specialty to communicate seamlessly, it still doesn't happen. The ridiculous lack of communication between doctor and patient is incredible. In part, because like a good mob boss, doctors place layer upon layer of people between them and their patients. Nurse practitioners, Physician's Assistants, Nurses, and a host of other people, like receptionists, lab techs, pharmacists, home health specialists ALL play a vital roll in a person's care. That's a lot of moving parts. And if you couple that with caring for people from a generation with White Coat Syndrome who don't dare ask questions, you have a formula for disaster.

If you have a family member in need of care, or who is currently receiving care, and they seem lost, or if their condition is worsening, heed this. You need to educate yourself and become an advocate. This is the story of my mother:

About three years ago, my mother was told she needed to use supplemental oxygen as needed, especially at home while at rest and at night. A home concentrator was brought to her home and she began to use it. Also delivered were small oxygen bottles for her to use when she was mobile "if needed." Until recently, those mobile bottles weren't necessary. This is going to get hard to follow, so I'll apologize in advacnce. 

My mother has had low hemoglobin levels for as long as I can remember, so like an ignorant fool, I assumed her oxygen needs were related to that chronic issue. When I pressed my now 91 year old mother for info from her doctor about why she needed oxygen, she said, "I don't know. He just said I needed it." No questions asked, of course. And so that was how it went for 3 years...And then everything changed.

About 4 months ago, my mother started getting weaker.  She was losing weight, didn't eat much, and needed oxygen 24/7. Although I continued to blindly assume this had to do with her hemoglobin levels and the fact she was in her 90's (mentally, she is still sharp as a tack), I insisted on going with her to a follow-up appointment to her pulmonologist. This is where the whole thing started and what I began to see unfold was terrifying.

We didn't see her doctor that day. We saw his PA. She was polite and seemed knowledgeable, but I stopped her the moment she started to ask how my mother was doing. "Wait," I interrupted. "Why are we even here? Does my mom even have a diagnosis?" This young PA looked at me like I was from another planet. "Of course, she does. She has pulmonary fibrosis. Interstitial lung disease. You didn't know?" AHA!! The curtain was finally lifted. My mother didn't think to ask 3 years ago, and I wasn't smart enough to ask most recently.

So, the oxygen needs were because her disease had progressed AND she had a mass on her lung. Now it started to make sense. And here's where the communication continued to break down. The PA prescribed some different meds and ordered a PET scan. When the nurse came in to discharge us, I asked about using the new meds. "I don't know," she said. "I'll be right back." She came back with an answer which brought a host of other questions from me, which she also either didn't get, or didn't understand from the PA.

When we checked out to schedule a follow-up and a PET scan, the receptionist thought it best to schedule those on the same day, a month later!! So my question to her was, "Considering she has a mass on her lung that resembles cancer, would you not feel like that PET scan should be sooner?" She agreed and that particular procedure was moved up to the following week. My point is, had I not asked, my mother surely would not have and we'd still be waiting for a PET scan. The family you have in your care need an advocate. Speak up! But wait, it gets better. I'll try to move this along some, but it's horribly convoluted.

Only a couple days later, I called to check on my mom. Her voice was extremely hoarse, her breathing was labored, and her oxygen stats were in the 70's. To be fair, 70's weren't all that unusual for her, but something was amiss. I suggested we take her to the ER and she agreed without an argument. Now I KNEW she was sick. My brother scooped her up and took her to the ER and I met them there shortly after.

Here's the problem with ERs. They're horribly overcrowded, understaffed, and the doctors are asked to be specialists in a variety of areas. So, once my mom was taken to her room, a battery of tests were taken to get the answers to questions to which we already knew the answer. It's a horrible waste of time and resources, and in the end, the doctor came in to tell us, "All the tests are normal. She has fibrosis, which means this is just how it's going to be, so we're going to discharge her and have her follow up with her pulmonologist." And at first, this seemed logical.

Enter our first real advocate who was paying attention. A young respiratory therapist came in to do some final checking on some things. She was actually on loan from another department, but when I told her we were about to sign discharge papers, she was shocked. "She's not a candidate for discharge with these stats! I'll talk with the doctor. Is she on Medicare? If so, all she has to do is say so, and she stays." That was definitely information I didn't know. When the doctor came back, he asked if I had more questions. Short version: She stayed. The bottom line, again, is, if someone hadn't been there to advocate for my mother, she'd have been discharged, and probably be dead by now.

Once admitted to the hospital, things finally started to happen that should have happened a long time ago. We saw the pulmonary doctor (not his PA), we started steroids, upped her oxygen intake,  got her regular meals, tested her demands for oxygen while at rest and under exertion, got her nebulized breathing treatments and got several balls rolling in the right direction. You know what? She got better. Not cured (fibrosis only gets worse, never better), but she started eating, she had more energy, her color improved, and her oxygen stats climbed in to the 90's.

We set her up with high flow oxygen, home health care visits once a week, physical therapy and so much more. But you know what? Without an advocate from outside the healthcare system, she would never have been able to coordinate and figure this all out. And even if the healthcare system had come through with the coordination, it would have taken weeks. There were new prescriptions, some Medicare wouldn't cover from a retail pharmacy, someone needed to pick them up and show her how to use a nebulizer. She needed coached on when to turn her oxygen up and how. And it was a logistical nightmare she wouldn't have navigated just to get her the high flow oxygen equipment she now needed. And the most mind-blowing piece of that entire puzzle was that no doctor we saw at the hospital knew high flow oxygen for home use existed. Unreal. It took one phone call and one question from an advocate willing to ask the question to get her what she needed. She wouldn't have.

And just when we thought we had everything set up to run smoothly, a home health care nurse who was only trying to meet my mom's request, called the pulmonologist to get her smaller oxygen bottles with an on-demand regulator which wouldn't have met her flow needs. And the DOCTOR APPROVED IT!!  Someone, for the love of god, read a chart. Pay attention! I arrived in time to send the oxygen delivery guy back with all his new stuff and got messages to everyone involved to not make oxygen use decisions without calling me first. Again. the left hand didn't know what the right hand was doing and it almost put my mom right behind the 8 ball again.

Now, before you suggest she needs 24/7 care, this exact scenario would have played out the same if she were 41 instead of 91. She doesn't know what questions to ask. And her generation doesn't question anyone with a white coat. What she needs is someone to ask the right questions. More importantly, she and people like her, need someone to ask ANY question. 

To be fair,  I was blessed to have a career where I witnessed the happenings at some of the finest ERs in the country, so I have a fairly unique perspective when it comes to being an advocate for someone. The fine professionals in these ERs were grossly overworked, understaffed, underappreciated, and...human. If you learn nothing else from this short, hard-to-follow rambling, learn this. Doctors, nurses, techs, and everyone else in that hospital are human. They do and will make mistakes. And there is so much information from so many sources to be communicated, you can be sure information will be lost. 

YOU have to take responsibility for your care. Whether it's you or a family member, you have to assume people will make mistakes and drop the ball when it comes to communication. YOU have to be the coordinator. YOU have to be brave enough to ask the tough question or even the questions you might think are stupid. YOU have to educate yourself. Google makes it easy these days. And what happens if you don't?

It's not totally the fault of the individuals who are merely part of a broken system. But it's true that people get more sick and die every minute of every day because they didn't have an advocate to ask the right questions. 

Become an advocate.