Since 2000, I’ve worked as a registered dietitian nutritionist, providing nutrition counseling and consulting services in a variety of healthcare settings–hospitals, nursing homes, assisted living facilities, physician offices, independent living facilities, home health, adult day care centers, corporate wellness programs, and private practice. Now, for the first time, I’m learning what it’s like to be on the other side of the sheets. Without a doubt, self-care has enabled me to be a more empowered patient and the director of my own healthcare experience.
The Other Side of the Sheets
For most of my 40 years, I’ve been pretty healthy. Aside from regular preventive visits, and the occasional trip to urgent care for a laceration or other nagging symptom, I haven’t spent much time in medical office waiting rooms. In fact, I’d only been to the emergency room once in my life until recently. (When I was five I took an apple from our neighbor’s tree without asking and ended up in the ER. Stealing isn’t cool, and nothing says ‘life lesson’ like a near-death experience.)
A month ago I woke up in the middle of the night with intense chest pain. I assumed it was heartburn, but when every home remedy I tried seemed to fail, I feared I was having a heart attack and asked my husband to drive me to the ER. Thankfully, I hadn’t had a heart attack, but I did have a severe bout of esophagitis, which has since sent me straight into the mouth of the healthcare system. (And it’s scary in there.)
Last week I had an upper endoscopy to determine why I’ve continued to experience symptoms. Staff members were friendly and competent, but speed was clearly the objective (second to quality outcomes, of course). Listening to their steady stream of questions and instructions was like trying to follow SNL’s Judy Grimes. In hindsight, I could have just as easily been placed on a conveyor belt in the parking garage and spit back out when it was over. The experience probably wouldn’t have been much different.
Fortunately, the procedure didn’t turn up anything serious. No cancer. No stricture. No tortuous esophagus. No hiatal hernia.
But unfortunately, it still didn’t answer any questions about why I’m still miserable.
I realize that I’m now among the many who are doing their best to navigate the system, but it isn’t easy, even for someone who has worked in healthcare for many years.
Navigating the Healthcare System
The day after the procedure I began experiencing a strange burning sensation in my stomach — a new symptom, one that wasn’t included on my discharge instructions as something to watch for.
So, I decided to be proactive and schedule a follow-up appointment with my primary care provider. I needed a prescription refill anyway, and I figured she’d want to see me to review my test results. But when I called the office to schedule, my conversation with the receptionist went something like this:
Me: I’d like to follow-up on a medication refill that the pharmacy is waiting for approval on, and also schedule an appointment please.
Receptionist: What is the medication?
Receptionist: What is that?
Receptionist: I still don’t know what that is.
Me: It’s a proton pump inhibitor.
Receptionist: I’m not a nurse.
Me (to myself): Then why are you asking me these questions?
Receptionist: So, they said you needed to schedule an appointment?
Me: Who is they?
Receptionist: The pharmacy.
Me: No, the pharmacy isn’t asking me to schedule an appointment. They just need approval for the refill. I called your office yesterday for a new script and was directed to call the pharmacy to request the refill. The pharmacy is just waiting on my doctor to approve it. I’m the one asking to schedule an appointment because I’m experiencing pain and the medication isn’t helping.
Receptionist: Okay, I’ll put a note in.
Me: Thank you. So, what should I expect to happen next?
Receptionist: I’ll ask the nurse to call you.
That conversation took about 15 minutes, which doesn’t seem like a lot — except that I had six other similar conversations with a handful of other staff members before the day was over. The specialist’s office called to say they had forwarded my test results to my primary care physician’s office. Meanwhile, my physician’s office said they hadn’t received them, and suggested that I schedule a follow up appointment with the specialist since my new symptoms started while I was under his care.
As I watched the clock tick on a Friday afternoon, wondering if I would hear back from anyone before my medication ran out, I realized that this is just the tip of the iceberg. Those who are managing multiple medical conditions, and who bounce between specialists like a volleyball, have it far worse.
But the biggest source of frustration for me has been the fixation on symptom management – especially with medication — rather than further investigating the root cause. The explanations I’ve been given so far for my reflux symptoms range from “A lot of people experience this” to “Here’s a list of foods to avoid.”
No sh*t. I’ve spent most of my career as a dietitian counseling patients who have conditions just like mine. I know the drill. But that still doesn’t explain the underlying cause.
It’s true that certain foods can trigger gastric pressure changes that result in a malfunctioning lower esophageal sphincter (LES). When the LES isn’t doing its job, gastric fluids can back-flow into the esophagus. But, again, that still doesn’t explain why the LES is malfunctioning in the first place. Forty years of being fine doesn’t turn to crap overnight just because I ate a chocolate covered hazelnut.
Directing Your Healthcare Experience
What I’m learning is that being an active participant in our healthcare experience is no longer optional; it’s essential. We can’t continue to be passive recipients of medical treatments, blindly popping pills without asking questions. That’s where self-care comes in.
For example, the first appointment I was given with the gastroenterologist was seven weeks out. Had I not been persistent, making phone calls to find an earlier appointment, I would have waited in misery.Being an active participant in our healthcare experience is no longer optional; it’s essential. Click To Tweet
Why is medical care different than other transactions that involves exchanging dollars for services? We sometimes forget that medical providers are consultants who offer guidance and evidence-based recommendations, but ultimately we’re responsible for making the final decisions. We can say ‘yes’ or ‘no’ to proposed treatment plans. (Of course, that also opens up a different can of worms with the insurance industry, but we’ll save that for another time.)
Here’s where things get muddy: Just as we have the right to be involved in our care, our providers can say no, too. If we make unreasonable requests that carry significant risks, or are unnecessary (adding to the already increasing cost of healthcare) they have a right, if not an obligation, to refuse our request.
This 2014 article from PhysicianPractice.com explains Patient-Centered Care Versus Patient-Directed Care quite well.
But there’s a difference between being a demanding patient and being the director of your care. A good patient-doctor relationship is one that is respectful and solution-oriented. It’s more like a partnership than anything else. But the reality is that some providers are hesitant to relinquish their powerful position as the decision-maker; they feel threatened by empowered patients.
That’s why finding a provider you trust is so important.
I feel fortunate to have a provider who listens, suggests sensible treatment plans, and is attentive to my personal beliefs and concerns. We’re a team, and that matters as much to me as the evidence-based guidance she offers. I’ve said no to some of her suggestions in the past, and she’s convinced me that some of my suggestions weren’t in my best interest. Again, that’s where trust comes in.Self-Care means being the director of your own health care experience. Click To Tweet
As I do my best to navigate the convoluted healthcare system in hopes of finding relief and healing, I must continue to remind myself that I’m the director — I have a responsibility to ask questions, to make phone calls, to seek out providers that I trust, and to ensure my self-care strategies are supporting my healing process.
Self-Care means being the director of your own health care experience.