Life After the Bedside
I remember my first code as an Emergency nurse. EMS rolled the patient into the room, I watched as the entire team moved in what seemed like a choreographed dance. Everyone had a role. IVs, breathing tube, documentation, drips, suction, compressions. Everyone knew their place. As I tried to focus and will my body into the room to actually do something, I was handed a bag of the patient’s belongings and told to catalog the items. Even as a new nurse in downtown Baltimore, you learn quickly that you DO NOT blindly stick your hands in pockets. It wasn’t out of the realm of possibility to be stuck with a needle.
On a table outside the room, I gently shook out the man’s pockets. Some loose change, a few dollar bills, a business card, lighter, tiny plastic bag with residue in it, and a thin wallet fell onto the table. Of all the belongings, I will never forget the wallet.
There was nothing special about it. It didn’t have any fancy designs and wasn’t packed with cash. It was just a plain brown leather wallet with regular things in it: a license, a bank card, a check that needed to be deposited, and an appointment reminder card for an upcoming doctor visit. What struck me was how this wallet ended up in front of me.
This man started his day like any other. He got up, got dressed, combed his hair, slipped his wallet into his back right pocket, and grabbed his keys as he walked out the door. It likely didn’t cross his mind that he would never walk back into his house again or that he would end up like this: on an Emergency Room stretcher, clothing cut off, ET tube hanging out of his throat, foam coming from his mouth, a glazed over look in his eyes, and, if he was one of the lucky ones, family in another room when they heard the news.
I didn’t realize it at the time, but that thought would become a core memory in my nursing career. This same story would play out over and over in the next year as I worked code after code, and even though I was more actively involved in each one, I always took a moment to look at the patient’s belongings. Every time, it was the wallet of the male patients that struck me.
After the Emergency Department, I moved to Trauma Critical Care. There, it was an unavoidable truth that many of the patients would die. Multiple broken bones, shattered pelvises, fractured skulls, traumatic brain injuries, shock, multisystem organ failure…the list goes on.
At some point, you have to learn to protect yourself emotionally or you cannot effectively do your job. You will end up cataloging the belongings of the deceased outside a room every shift and then head straight to therapy after work and then home to your six cats. Emotional protection is also called “the wall” and it looks different for everyone.
Of all the patients I’ve had the privilege of caring for in my nursing career, I’ve only gone to one funeral. She was a sweet lady who had been in the ICU for almost 3 months in 2014 after being hit by a drunk driver on her way home from work. She was doing so much better when she was finally discharged. She still had a trach and was hoping to have it removed after a few weeks of rehab. She wasn’t at the rehab facility for more than a week and her son called me to tell me she passed away. Her trach was clogged with mucus (“plugged”) and she suffocated. It’s been eight years since she passed, and her kids still text me every Christmas, on my birthday, and on the anniversary of her passing to say thank you.
If you had asked me ten years ago in the height of my ICU days if I could ever picture myself doing clinical research in a nine-to-five office job with no nights, weekends, holidays, feces or vomit, I would have laughed. How boring! No one is trying to die on me all night long? No stress about whether my next patient will be the one to emotionally break me or if I can absorb any more stress and push it down deep into the abyss and show no weakness to become the biggest badass nurse ever? YEAH RIGHT. And yet, here I am. Still in bed at 13:15 on a random Friday afternoon, feeling completely lost, no motivation to do anything and intermittently sobbing, mourning the loss of a patient and a friend.
At some point, you have to learn to protect yourself emotionally or you cannot effectively do your job.
I met Jorge* in 2018 (name and some details changed for privacy). I was brand new to clinical research and he was one of my first patients. He was in one of our cardiovascular trials for a new PCSK9-inhibitor that was hitting the market. He was in his late 60s, about 5’6”, skinny, with salt-and-pepper hair, living only on his social security check, barely at the poverty line with minimal insurance, and cohabitating with his estranged wife because they could not afford to officially divorce. Of all the challenges life had thrown his way since retirement, he was remarkably friendly. He loved coming to the clinic. He liked to talk, and I always had plenty of time. I got to know him pretty well. I never met his kids, his dog, or his grandkids, but I felt like I knew them, too. And likewise, we talked about my kids and my husband, our new dog, the kitten we got for my daughter, and the old cat we had to put down. Every time he came in, it was like catching up with an old friend.
I once told him he reminded me of George Costanza from Seinfeld. He laughed. He immediately knew what I was talking about. It’s my big wallet! he said. Every time he sat down, he had to take it out of his back pocket because it was packed to the gills with receipts and pictures of his grandkids and his dog, a fluffy white Bichon Frise named Vader, after his favorite Star Wars character. He would set the wallet on the desk, and then he would sit down in the chair next to me, and we would start our research clinic visit. I would get his vital signs, draw his fasting lab work, refill his study drug in a refrigerated cooler bag, and review his last visit’s blood work. We would discuss his current medications, any changes in medications or dosages since the last visit, and any barriers to compliance he may be having like the cost of his meds. Once the required visit questions were done, we would chat about whatever he wanted. He talked a lot about his time growing up here. He was a “local”. Florida has been a red state for a long time, but he grew up in a family of progressives, which was not as acceptable to the general public in the 1960s. When he was 9, someone tossed a Molotov cocktail through his living room window and his house caught fire! Apparently, someone didn’t like the fact that his mom spoke up for a black family being harassed at the grocery store earlier that day. They fled the area and moved in with some family farther south for a few years.
Jorge had plenty of excuses to be angry about the state of the world, but somehow, it never phased him. Jorge loved people. I often thought of him in a Mr. Rodgers light. He was excellent at finding the good in people. There was always a silver lining. It was so refreshing, and I looked forward to our chats.
After the study ended, Jorge wanted to continue on the medication he was using in the clinical trial. The drug received FDA approval the year prior and, together with one of the local agencies that helped senior citizens at or below the poverty line obtain the medications they needed, we made the case for Jorge to be approved for the drug. Unfortunately, the insurance company didn’t see it that way and denied his request.
Jorge had plenty of excuses to be angry about the state of the world, but somehow, it never phased him.
In the months after the trial, I kept in close touch with Jorge. I would have him come in for a cholesterol check every so often. I had another trial he could join, but in order to qualify, his LDL-C had to be at least 70. Month after month, we waited. Finally, a reading of 71! We reviewed the informed consent months ago. He was ready. At the end of 2021, I randomized him into a double-blind, placebo-controlled trial for a new medication that worked very similarly to the previous medication he was on. He was so happy to be in another study with me and my team! Monthly visits meant more chats, more smiles, more laughs, and more learning from my friend from another generation.
This had been a tough year for Jorge. His son died suddenly and unexpectedly earlier this year. He was in his early 30s and started abusing prescription medications after a botched back surgery. I don’t know many people that would want to share those details. Some might feel shame to admit their child was a drug addict. But not Jorge. He told me everything. His son was a successful engineer. He made something of himself, he said, and I was proud of him. His son fell off some scaffolding at a job site and injured his back. He had surgery a couple of weeks later and the pain was even worse than before. He ran out of pain medication and couldn’t get it refilled. He borrowed some from a friend here and there, and even a few from his dad when Jorge couldn’t stand to see him suffer (Jorge also had chronic back pain and took a low dose of hydrocodone twice a day to keep his pain below a five). Unbeknownst to Jorge, his son found relief in some heavier substances and was found dead in his home. Jorge was devastated. I was devastated for him. Hearing the quiver in his voice as he talked about his late son brought me to tears with him. Where had my emotional wall gone?
A few months after that, Jorge’s best buddy Vader, the Bichon Frise that had been by his side for 17 years died in his arms. I am a dog person. I get it. Together, we cried in my exam room while he told me how much he would miss Vader’s stinky breath in his face every morning at 5:00 am. First his son, then his dog. I could not imagine how someone could weather both of those storms back-to-back, but somehow, Jorge carried on.
I could not imagine how someone could weather both of those storms back-to-back, but somehow, Jorge carried on.
At his last few clinic visits, he carried a satchel with him. He finally got new jeans and the back pockets weren’t stretched out enough to fit his overstuffed wallet. We chuckled as he poked fun at himself for carrying around a “man purse” or “murse”, another reference to his favorite show, Seinfeld. I last saw Jorge two weeks ago at his regularly scheduled appointment. He was in good spirits and happy to see me as usual. It was a busier than usual day in the clinic, but we still made time to chat. He told me his daughter and granddaughter had moved in with him and how he loved being able to spend so much more time with them. He was in charge of driving his granddaughter to school and he would wait for her at the bus stop every afternoon.
We received a call at the clinic yesterday from Jorge’s estranged wife, Jane. She called to let us know that Jorge had suffered a massive heart attack earlier in the week and died. He was transported to the local emergency room, his overstuffed wallet and murse with him, where he was pronounced dead shortly after arriving. He had a breathing tube, his clothes were cut off, his chest bruised from CPR compressions, his eyes glazed over, and his family sobbing outside the room. I don’t know how long it took his nurse to catalog everything in that gigantic wallet, but I do know that my name is on that list because he had several of my appointment reminder cards jammed in there among the receipts and photos.
I’ve cried in previous nursing positions, but those tears were from the shock of the situation, seeing things I never thought I’d see, and witnessing grieving families grapple with those first few minutes of processing such immense loss. I never spent enough time with a patient to miss them. Even my ICU patient whose funeral I attended, I wept for the family. For her son and her daughter with whom I had spent countless hours. I wept because I was sad for THEIR loss. Yes, I cared for her for three months, but she was only “awake” for the last couple of weeks and could never talk because of the ventilator. And, at that point in my nursing career, my emotional protection wall was SKY HIGH.
Today, I am crying because I miss Jorge. I miss my patient. I miss my friend. I’m heartbroken. I’m so, so sad. I wish I could tell the ICU nurse I was ten years ago that clinical research is nursing. THIS is nursing, and as a nurse, it’s okay to get attached. It’s okay to make a connection. It’s okay to be invested. And, it’s okay to grieve for patients when they are gone.
Rest easy, Jorge. I will never forget you.
By Jillian M. Agnew, RN, CCRC, Senior Clinical Research Nurse, St. Johns Center for Clinical Research
