When patient advocacy fails

Access to care, patient advocacy, health disparities: These are all buzzwords in health care now. We, as health care providers, understand that we must do the best for our patients in the hopes of providing a positive outcome. So, despite our perceptions that we may be doing a good job, we may find ourselves in a bad position. Or worse, causing significant pain to those we have vowed to protect.

I understand with the current opioid crisis, that perhaps pain may not be as important in some people’s minds as it used to be. My perception of this is that it stems from a fear that the health care provider may have to prescribe pain medication? To be honest, I don’t really know. However, what if a patient calls a physician’s office, tells them they are in pain and is not asking for pain medication? What if they have an autoimmune disorder, which causes pain, and the solution is a prescription for a biologic medication? Why the resistance then?

In my practice, I have advocated for numerous patients over the years. I am what my son calls a “doctor nurse.” No, I am not an MD, nor do I wish to take that role, so please do not misread my meaning. Merely, my son defines me by my degrees.

I have a practice doctorate, am a PhD candidate, and I am a nurse. My job is to advocate for my patients. But what happens when I, as a patient and advocate for myself, am ignored?

As health care providers, we often put ourselves aside for our patients; in my case, I am the patient. I was diagnosed with psoriatic arthritis eight years ago.

My days are filled with fighting general fatigue and pain. Most days, I drink enough caffeine and take my NSAID to get me going. I depend on my biologic to keep my disease in check. I get my labs done when I am supposed to. And life goes on. Every few months or so, I have to go in to see my dermatologist. This month, there are no appointments that I can go to. I am a nursing professor, and taking a day off, like many in health care, sometimes isn’t an option.

So when I called this morning, after struggling to put my shoe on due to the severe swelling in my right foot, to come up with a different solution, I was basically told: “It’s my way or the highway.”

No appointments available for a month and getting my labs drawn without seeing my physician this time, with a one-month script that would get me to the next available appointment, is out of the question.

As I write this, I am in the worst pain I have felt in years. I have no biologic to take, so my arthritis is in a severe flare. As an endurance athlete who does the sport to keep my joints moving, I know how to endure immense pain. The point being is that I don’t complain — ever.

And I face two of the three buzzwords that I started with: no access to the care I need and no care about patient advocacy. Please do not misunderstand me; I understand the legal implications here.

Patients must be seen. But there are ways, aside from making a patient waiting over a month to see someone, that can be done. I know this as a nurse, a wife, a mother, and a patient. My labs are the holdout, so I’m happy to go get them done. The physician can review my labs and bill the encounter as an “e-visit” or call me, have a talk over the phone, and bill it as a “telephone visit.” I know, legally, that is all that needs to be done — a check-in and labs to assure the drug is not causing adverse effects. My visits in the office total five minutes or less with my MD. So why the roadblock? And then it made me wonder, how many other patients are suffering because of situations like this one? How much more pain and anguish are we causing because we do not wish to compromise?

There is so much frustration about patient satisfaction, but there are times when we have to listen to our patients.

Otherwise, we are, in some way, turning our back on the thing we vowed not to do: cause patient harm. This is the cost when patient advocacy fails. This is a lesson I often teach my students in the classroom and in the clinical setting.

Being loud and making a fuss will get many of us nurses nowhere. But to be strong and vocalize our opinion in a respectful manner and emphasizing the patient’s needs may be effective. However, when it still does not work, continue to protect the patient until someone does listen. Do no harm. We do that as best as we can. As I sit here in pain, I hope someone can be effective somewhere for people in my situation. As a nurse, I want my patients to be heard. As a patient, I want to be heard and effective action taken. Because what it boils down to is all I wish for is a little help once in a while.

Emily Gesner is a nurse informaticist.

Image credit: Shutterstock.com

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