After leaving my job at the hospital I took a job at a local pediatric clinic. I must say, I was NOT excited about working more days per week, but loved the idea of being home with my family in the evening, weekends, and on holidays. Working only 3 days a week at the hospital was nice, but if that those 12-hour shifts landed in a row then that was 3 days I didn’t see my babies. Asleep when I left & asleep when I got home. For a new mother that was very hard.
For my first year at the clinic I worked alongside a physician as her personal nurse. It was busy but definitely not fulfilling. I had very little patient interaction and didn’t have the opportunity to use all the skills I had developed. Hurry up and room patients, grab a blood pressure & weight, move onto the next and keep them coming. Draw up shots, give them, then the next and the next. The fast pace made it difficult to connect with families let alone take time to really concentrate on giving them a good experience. It was what I would imagine herding cattle is like- or in the case of the 1 year old who’s parent is letting her walk the loooonnnngggg hallway back to the room when you are already running behind it’s much like hearing cats.
Frankly, over time it made me bitter and angry, impatient with people and hard. I hated it. It had very little of the aspects that I liked about nursing and a lot of the ones I didn’t.
Luckily, other positions opened up within the clinic and I was able to eventually transition to working as a care coordinator with our special healthcare needs children and their families. I’ve been dreading sharing this part of my story as it seems to be the most difficult to explain and has the most potential to ruffle some feathers. But if you’ve been around awhile then you know my policy on honest.
In a nutshell, it was the most rewarding job I’ve ever had and one of the worst, as well. It’s the job that drove me away from my family and ultimately from nursing and made me reexamine my life. In hindsight, it was a blessing in disguise, I suppose. Not that it felt that way at the time.
The care coordinator position was something new that developed out of a nationwide need for reform within healthcare. The push for some time has been to make healthcare more patient and family centered allowing them to be fully involved, informed, and making decisions regarding their care. Thanks to a wonderful grant we were able to bring care coordination for complex patients to our clinic. However, because the role was so new, there was really nothing in place, anywhere, that showed us how to do it. There was no job descriptions or workflows or support people who had done it before. It was a fly by the seat of your pants, learn as you go work day. Every place across the country was doing it their way so no two systems looked truly the same. And the way it worked for a small 2 physician facility was much different than it looked for our large clinic. There was a lot of trial and error.
At the heart of it, we envisioned the role to be an advocate as well as a direct contact within the clinic for our parents of children with special healthcare needs (CSHCN).
Need to get diapers ordered and covered by your insurance for your child over 5 yrs?
Questions you didn’t get answered or didn’t understand?
Not sure who to contact regarding an issue?
Need help with health insurance or other community resources?
Need to arrange a meeting between your physicians here and your specialists elsewhere?
Need to go to the ER but have had issues in the past with them not following your care plan?
And that’s just a drop in the bucket. We did it all. It was great for the triage and physician nurses who didn’t have time for all of the paperwork that many things took or calls to specialists, schools, the county, or insurance companies.
Much of it, particularly regarding community or county resources, wasn’t something we had ever dealt with before on the healthcare side. But the healthcare community as a whole was starting to realize that there are so many factors that impact a person’s health outside of diet and exercise: spirituality, financial situation, language barriers, cultural beliefs, transportation, etc. If you can’t pay for your meds you can’t take them. If you can’t get to the doctor you won’t get or stay healthy. Sometimes there are deeper issues that you can’t get to unless you have someone to build trust with the patient over time. Previously, there was really no one to help you. It doesn’t take long to see the average county worker is overworked, underpaid and each facility is housed with more people who will redirect you rather than take the time to help direct you. If you don’t ask the right questions you don’t get help- but who is going to teach you what to ask?
Essentially, when a family came to us we spoke with them regarding their child’s health issues, their family’s struggles, any questions, etc. We helped them to develop a care plan that would be a document they could use everywhere they went to inform people all about their child and his/her medical needs. We would help them obtain any resources they needed. We would be a phone call away whenever they needed anything and best of all we could pick up where we left off rather than leaving them to start from birth with the random nurse they got on the phone before our program. Parents seemed to love it. Finally, someone who could help get to the bottom of an issue that plagued them across all their health system visits and they had a document they could take with them that made it easy for everyone to be on the same page. For the most part, I believe the physicians loved it as well. It helped to take a lot of work off their plate. The right questions got asked the first time, everything they needed to know was in an easy place to find, someone was making sure notes came back from the child’s specialists at other clinics/hospitals. We were able to make ER visits easier on family and staff or prevent them all together.
The complexity of some of the patients was astounding. One patient had over 20 physicians they followed with and that did not include physical therapists, dietitians, and more. Another patient needed help aligning appointments because they didn’t have transportation but had 5 different specialists they needed to see in the same day- we made it happen. There were refugees who didn’t understand why their child was different and had not had any help for years; suddenly they found themselves in a strange country with a language barrier and no good understanding what all these new appointments were for let alone why their child wasn’t better after the first appointment or couldn’t just get a drug to fix them. Hours were spent on the phone explaining and reexplaining through interpreters- time that didn’t before exist. There were patients that monopolized an entire day because of issues- the record was 16 phone calls in one day (and it wasn’t you, C, if you are reading this!); a patient that would have just been punted to the ER otherwise.
All of that was exciting- stressful at times, but I love a good challenge and I love learning & growing. It was the peek behind the curtain that was the hardest. A reform of healthcare requires a reform on thinking. So many physicians and staff were ready for this or saw the benefit and were more than excited to jump on board. But change is not easy.
First, to make a change, for the benefit of the patient or not, you need to show that it is financially beneficial. That was a really rough pill for me to swallow. It seems so easy to say, “This is what is best for the patients. Let’s do it.” That’s not how business works and healthcare, like anything else, is a business. Patients had to pay out of pocket for our service if their insurance didn’t cover it. It is really hard to explain that to parents who feel like they’re drowning- you only get the life preserver if you buy it… This also meant that we were taking on astounding case loads and were not able to get more help. Managing over 150 patients is not possible and the parents that were there from the beginning could feel it.
Second, the change in job roles also meant a change in the types of interactions I had with my co-workers. Though I worked for a clinic I clearly saw myself as a patient advocate first and foremost. When you are in that role there are times that you have to speak up on behalf of the patient with a sentiment that may not be popular or well received. More often than not providers were receptive. Many of the providers I worked with went above and beyond regularly- it was so inspiring. They put in 10+ hour days, sacrificing time with their families, so they could fit in that one extra patient and prevent an ER visit. But it was difficult at times when what the patient needed wasn’t what someone was willing or able to give. Often it’s a lose lose situation and you’re stuck in the middle. On top of it all, like in any bushel there are always a few bad apples; there were people who didn’t get it, didn’t want to try to get it; and made it abundantly clear. Disgustingly clear. And I get it.- there are two sides to every coin. Many of the arguments sounded legitimate:
Why should the people who made their appointments 2 months ago have to wait an extra 30-45 minutes because ONE person’s kid had to be fit in?
Why should a physician or nurse have to stay late and miss out day after day with their family to accommodate others- after all, that’s why hospitals have after hours services.
I don’t know that patient any better than the ER doctor so why can’t they go there? [When their primary doctor was out of clinic]
Third, there were the patients & families. There were the days when a patients sweet smile would come into our office and brighten our day. There were the parents that cried with gratitude. There were the Christmas cards that remembered you and the phone calls to just see if you were feeling better because they noticed you were out yesterday. There were families I built lasting connections with and I still think about them often. Then, there were the patients that died. There were the patients that were neglected and abused but you really had no “proof” and were helpless to do anything. There were the phone calls from mothers where all you could do was give them the mental health crisis number and hope everyone was okay. That they would call it. Working with people isn’t always easy, particularly when you’re the middle man. There were your typical ass-reamings and the times I had to tell people they were being unreasonable. There were the times that I had to relay horrible news or say the really tough things they didn’t want to hear. It’s exhausting. Something I wish I didn’t have to admit, but I feel like I have to if I’m to share this story honestly: After a particularly bad day I hit my all time low and actually said out loud that I wished that one of the patients would just pass away already so I didn’t have to deal with her mother anymore. Yep. I said it. After that, I finally sought help. I had gotten to the point where I was nauseated for the most of each morning, having headaches, chest pains, eye twitches, diarrhea and extreme fatigue. And finally I said that. I am lucky to have an amazing doctor and I told her everything. We talked a long time. It was then I first heard the diagnosis of Generalized Anxiety Disorder (GAD) and started meds. I definitely improved and saw big changes in my ability to handle my stress. But meds can only do so much.
No matter how hard I tried I can’t just shut my mouth *wink*. I’m not capable of “just showing up” and doing my job and going home. I even tried to look at just doing an amazing job for my patients and being content with being the best care coordinator EVER- but that lasted all of about 1 minute because it all circles around, you know? I can’t tell a family I won’t help them because they don’t have the money. I can’t tell a family to go to the ER because no one wants to see them today because it will take too much time and feel good about it. I won’t not speak up when someone tells me a patient won’t get good care if they chose to come in to the clinic late in the afternoon and that the patient should “just be happy to be seen.” I don’t want to attend the funerals of any more children. I don’t want to be caught in the “it’s not my area” doctor ping-pong matches when families have questions. I don’t want to have to harass a specialists office because no one is calling the family back and I don’t have any answers for them.
Again, I want to stress that the things I saw providers do for patients blew me away. There were so many examples of selflessness and grace. Providers that would add a patient in after the clinic closed. Providers that would call and speak with families for an hour or more on their day off. Providers that opened up blocks of their day off to see patients who needed to be seen. It was amazing. And like me, they get stressed and burnt out. Like everyone else in healthcare they are demanded to do more with less. I’m sure that is what much of the negativity I heard stemmed from. It weighs on us all. That’s why I’m writing this. Because this is a very hard line of work to be in and do it well. To open your heart up all day to help others leaves it vulnerable to being wounded. An exhaustion builds up. After bleeding empathy and support and fire all day it is hard to go home and have anything left for others- at least it was for me.
Each day I came home and wanted to just be left alone! I didn’t want kids crawling on me; I didn’t want my husband needing to be touched or talked to or need anything. I wanted to cocoon up in a blanket and hide and try to recharge before the next day started all over again. Anyone that has a family knows that this isn’t possible. You know that there are also a million things to be done around the house and with extended families and every thing else that then just started to feel like a burden. My life outside of work just felt like a burden. Art. Friends. Love.
It occurred to me, I had stopped being “Kelly” long ago. I wasn’t fun and my coworkers were exposed only to endless complaining sprinkled with witty, dark sarcasm. I wasn’t someone you would want to hang out with let alone be around for a prolonged period of time. I couldn’t talk about anything other than the politics of it all and how mad it made me. I wasn’t quiet about any of it. I tried, believe me, I tried to change the program, the people around me, myself. I tried hard to fight for what I knew was right, but when much of your battle is with some faceless beancounters and people who never see the faces of patients it becomes apparent that it’s a pretty useless fight. Some things changed, but unfortunately not for the better. What became evident was that it was going to continue until either I quit or was fired. Then there was the final straw and I sat at my desk, wrote my resignation and handed it in with a 2 week notice my husband knew nothing of. My BFAW (best friend at work) thought I was crazy, but I think was more than a little bit jealous.
I think telling my husband was the scariest part. I really had no idea how he would react. We had been talking about and planning for this for a couple months, but had not really yet established if his new location would bring in enough clients to support us. In the end, though he could have screamed and fought and been angry with me, he was instead amazing. He took it all in stride and though he was totally freaked out, supported me and my decision. At the time, I think I was so fed up with everything that I didn’t have room to be freaked out as I was too busy feeling relieved.
But it wasn’t just about leaving a job that was too stressful. That was what might have sparked it. Ultimately, it was about changing our way of life. You see that job, more than any other, showed me how tender and fragile life really is. A simple accident and our world could be changed forever. Parents were given bad news every day and would have given anything to have a child healthy enough to drive them nuts and scribble on the walls and here I was working away all of my time with mine. And it wasn’t just daycare; once they started school they would go each day for 6 hours and then to after school care for another 2-4 hours so I could rush them home to feed them and ignore them while I made supper and did my share of the chores. I didn’t like it. It wasn’t the kind of life I wanted for me or my family. It wore on me with every shitty diagnosis given. So I did the only thing I could to change it. I quit. And you know what? It was the best damn decision I ever made.
Missed the rest of the series? See them HERE.