Caregivers Write: A Lesson from Palliative Care
To Be Alone with Agnes: I didn’t want her to die. I stood on the other side of the curtain with my eyes squeezed shut and listening hard. I could hear the gentle whir and click of the IV pump against the local weatherman’s spiel detailing the day ahead, and I could hear Agnes. I counted only six deep, slow, and jagged breaths in the minute that I hid behind the curtain.
I hooked a finger around the edge of the mint green curtain and slowly peered into her room. There she was. Eyes slightly parted, distant milky gaze, mouth agape. The thick, white hospital blanket had been pulled up under her chin, and someone had laid a cheery green and blue crocheted blanket across the foot of her bed. The early morning sun was streaming across the room, illuminating the dust particles silently swirling through the air.
The report I received had been brief. Agnes was 94 years old and actively dying. She hadn’t had any visitors during her stay, and her only family consisted of a nephew who was incarcerated in a different state. She was admitted to the hospital after falling and hitting her head when getting out of the shower. She was taken to the emergency room on Sunday, transferred to the ICU on Monday, was made a DNR/DNI on Wednesday, and then transferred to the Palliative Care Unit where she found me on a sunny Friday morning.
Since I graduated from nursing school in May 2012, I have kept part-time hours on the Palliative Care Unit in addition to my full time job in Pediatric Intensive Care. I strongly believe in the importance palliative care. I aim to optimize the quality of life of each patient I take care of, whether they are approaching death or not. I especially take pride in managing pain, reducing the symptoms, and alleviating any suffering for my patients in the end of life. I am truly passionate about end of life and palliative care, but I am terrified of those final moments leading up to the moment of death. I had never been with someone the moment when they passed, and I had especially never done it alone.
I took a deep breath, told myself to quit being such a wimp and strode across the threshold. It’s a strange thing, being in the room with someone who is actively dying. You feel like you’ve broken into their house while they’re sleeping, so you tip toe through vitals, gently turn them, and quietly administer medicines so as not to wake them up or really, so as not to catch them on their last breath. In most cases, there’s a daughter or a husband or a friend sitting bedside, but not Agnes. Agnes was alone.
Despite being NPO, completely comatose and unable to eat, let alone order from the menu, someone had delivered her a meal tray and positioned the table across her lap as if she would be able to dig into her French toast once she got her hands on a fork. I got rid of her tray, rolled the table across the room and began my assessment. With my stethoscope on her chest, I prayed that each time it rose and fell that it would not be her last. I listened to her heart, trying to separate her slow and steady beats from my own racing rhythm. I quickly shined my penlight into each eye, illuminating pinpoint pupils set into her deep and cloudy brown eyes. I pulled up the blankets at her feet to feel for long gone pedal pulses, and smiled upon seeing her perfectly painted fire truck red toenails.
I began to wonder, who painted those toenails? Was it Agnes? A friend? Had she gone to get a pedicure before she fell? Was she still driving? What was Agnes like? I had so many questions, and there was no one to answer them. I couldn’t bear the thought of Agnes being and possibly dying alone, but I was simultaneously petrified that it would be me who was at her side when the time came. Perhaps I could ask a more senior nurse to switch assignments with me, or maybe a Care Partner wouldn’t mind sitting with Agnes. While the idea of passing her off her last moments to someone was admittedly attractive; my heart steadfastly rendered this impulse unacceptable. I was crossing her path for a reason, and I was in no position to argue with the universe. Despite the growing trepidation in my gut, I smoothed the blankets back over her feet, and took a step back. I promised Agnes she would not be dying alone, because she would be dying with me.
The charge nurse had blessed me with an assignment consisting of only Agnes, so I could provide true one on one care. The Care Partner and I gave her the bath of all baths; Florence Nightingale herself would have been impressed. We changed her linens and tidied her room. A volunteer even brought a handful of daisies that she had arranged in a paper cup. After I had ensured the bag of Fentanyl locked in her PCA pump would last through my shift, I dragged my computer on wheels into her room and parked myself by Agnes’ left side. I finished up some charting, played some music on Pandora that I thought she might like, and constantly looked over to make sure she was still breathing.
As the day trudged on, so did Agnes. Her respirations were few and far between, but remained steady. Besides turning her every two hours, nothing about her had changed. I was growing more comfortable by her side, and I began to wonder if she would pass on my shift. At some point during a rerun of The Price is Right, I looked over at Agnes. Had I not known she was actively dying, I might have guessed she was taking a leisurely afternoon nap.
I turned her wristband around and read her birthday: 9/14/1921; just a few days shy of my own. Born just before the Great Depression hit, Agnes had been a first hand witness to so many of the historical events that have shaped our world. How I would have loved to have a conversation with her. I began to muse about her life. I imagined Agnes as a young woman, would we have been gotten along? I wondered if she was sweet and motherly with a knack for baking, or if she was crabby and short-tempered with a great sense of humor. Had she been the owner of a clothing store or had she tirelessly ran the family pig farm? It was all a mystery. I assumed based on her pedicure that she had an eclectic sense of style, but I couldn’t be sure. The only thing I was certain of was that she had been stunning. Even as her life was coming to a close, her high cheekbones, full lips, and large eyes gave away her timeless beauty. As the game show host on the television called his next contestant to come on down, I decided that Agnes and I were now friends.