Of all the disparities in the healthcare system our patients face, there is one that does not discriminate. It has nothing to do with finances, access to care, or transportation. I see it day in and day out with my infusion patients, and its onset can rarely be predicted or prevented.

Depression.

We have all heard about depression and may have seen it in people we know. Maybe some of you have personal experience with it. As a specialty centered on the physical well-being of our patients, rheumatology providers are not specifically trained in the management of depression, but it sure is something that always needs to be on our radar screens.

Through my time as a rheumatology nurse, I have learned that depression doesn’t simply present as “I am sad.” Instead, there are two primary scenarios that I have become attuned to.

SCENARIO 1:

The Patient Left Swaying in the Wind

This is the patient who is going along in life happy and healthy until one day they have this weird combination of symptoms that pop up out of nowhere that can’t be attributed to any one thing. They go to their doctor, typically a primary care provider (PCP), and are told that they probably have a viral illness that is going to be short lived. All they need to do is take “Drug XYZ” for a few days or weeks and everything will get better.

A month later, nothing is better (and is often worse), and there is still no answer. Instead of a more thorough workup and referral, they get sent home and told, “It’s just a function of getting older.” And so the patient suffers for months, sometimes years, not knowing exactly what is going on, but knowing all too well that something isn’t right with their body. They have symptoms they can’t explain, pain and stiffness in their hands and wrists that don’t seem to have any cause. Maybe they develop an unsightly rash on their skin that triggers weird looks from people at the beach. Family members grow tired of the patient’s complaints and keep telling them, “You look fine. There is nothing wrong with you. Deal with it.”

This is the patient who begins to shut themselves off from society, stops doing things they enjoy, and avoids being around the people they love. Depression sets in heavy and hard. They begin to lose hope that things will ever get better until one day they finally reach the world of rheumatology. This is the patient who comes to us with a hangdog look on their face who just doesn’t seem to have any energy.

“While acknowledging their feelings and thoughts, I also do what I can to encourage them to take things one day at a time and rebuild themselves little by little.”

SCENARIO 2:

The Discouraged Patient Who Has Given Up Hope

This is the patient who is fortunate enough to have a PCP attuned to the possibility of an inflammatory condition. The PCP questions their initial diagnosis when things don’t immediately improve and orders lab tests to assess the patient’s C-reactive protein levels, erythrocyte sedimentation rate, and other relevant values. Those results then trigger a referral to either rheumatology or dermatology. While this patient gets fast tracked to a specialist and forgoes the lengthy diagnostic period, they still face a series of challenges. They expect instant results from medications and don’t understand why their prescription doesn’t dull the pain immediately. Maybe their first and second medications don’t work at all, and they begin to wonder if there is anything that can truly help. This leads to a questioning of their provider and medication noncompliance. Which puts them back at square one. As an infusion nurse, I see lots of patients like this. We don’t often see patients until they have tried and failed to respond to multiple oral and/or subcutaneous medications. By the time they get to the infusion center, they think this will simply be another waste of time and are completely closed off. I see the despair on their faces and have to work really hard to try to get through to them.

Seeing Through the Haze of Depression

While I do see some patients who are seeing a psychiatrist and being treated with an antidepressant, there are many who show signs of depression but have never been formally diagnosed. Regardless of which group the patient falls into, my approach is the same—I begin by sitting down with them and explaining the infusion process from start to finish, telling them about the medication they are receiving and what we think/hope it’s going to do. I also review some of the potential side effects so as not to sugarcoat things too much and describe what they should expect from the infusion process in general.

I find it important to try to gauge patients’ state of mind when I first meet them, to assess where they are in the disease process and get a sense of any concerns or barriers to care that they face. I listen wholeheartedly and empathetically. I literally tell them I am going to be “all in your business,” which makes them laugh but expresses how serious I am about helping them get better. While acknowledging their feelings and thoughts, I also do what I can to encourage them to take things one day at a time and rebuild themselves little by little. There are no massive strides to be made in the morning with a chronic rheumatic disease.

In the end, what I am trying to do is prevent my patients from going into an emotional dark hole and, if they are already there, try to pull them out by letting them that it’s OK to feel the way they do. I am proud that I have many patients who specifically ask for me to take care of them on their infusion days and some who tell me things that they admit they don’t feel comfortable sharing with their provider. This always puts me in a tricky spot—I don’t want to betray my patients, but I also know it’s ultimately to their benefit to speak openly with their provider. For some patients, we are the only support system they have. I had one patient recently who came to us with a terrible rash over nearly her entire body. A few months after I met her, she brought me a gift, which surprised me. When I asked her what I had done to deserve it, she told me that I was one of the very few people who treated her like a human being and wasn’t scared off by her rash. I told her that her rash had nothing to do with the beautiful person she was and that she shouldn’t let other peoples’ opinions derail her life. After I left work that day, I cried. I cried because of what this woman has to go through on a daily basis because of something on her skin. I cried because I knew how cruelly she is treated by others and because I wanted her to be proud of the beautiful person she was inside and out.

One last point—don’t forget our role as mandated reporters. This means that any time one of our patients expresses an intent to harm themselves or someone else, we must report this up the chain of command, typically to their rheumatologist. That individual can then determine if the patient needs to be sent to the ER for evaluation or, in Louisiana where I practice, execute a Physician’s Emergency Certificate to detain the patient for 72 hours. Luckily, I have not been forced to go down this road with any of my infusion patients, but this happened frequently in my previous role as a post-op and ER nurse. Your patient may never forgive you if you betray their confidence to their provider, but emergency situations leave us no choice.

So many of us make a profound impact in the lives of the patients that we care for. Having simple, honest conversations can open a door of trust and help develop a rapport that establishes yourself as the guiding light that instills hope for your patients who are looking for something, anything, to hold on to. Especially in these trying times, our patients need us more than ever.

AUTHOR PROFILE: Joni Fontenot, RN, is an RN Staff Nurse at Ochsner Health System – The Grove – Infusion/ Rheumatology Infusion in Baton Rouge, LA, and Chapter Development Chair on the Rheumatology Nurses Society Board of Directors.

Participants will receive 2.75 hours of continuing nursing contact hours by completing the education in our course: Rheumatology Nurse Practice: Healthcare Disparities in the Management of Psoriatic Arthritis