Hiatus

Life is a crazy ride, that is for sure. It is amazing to me how life comes full circle. When we went around the classroom on my first day of nursing school everyone was supposed to explain why they wanted to become a nurse. Classmates had touching answers about watching a loved one suffer, wanting to change the world or going through a harrowing medical experience themselves. That day I said the one thing on my mind, "I just want to hold babies and get paid good money to do it!" It was a sincere answer (I mean I really DO want to hold babies and get paid for it! Who doesn't love to hold babies?!) but listening to those heart felt responses....the answers of people who were truly answering the sacred call of nursing, I felt inadequate. I genuinely like people and truly wanted to make a difference but I didn't exactly have the life experience to rationalize WHY. As my career has taken me from pediatric medical nurse to adult emergency department nurse to pediatric oncology nurse I have had the ultimate blessing of being a witness to some of life's most sacred and vulnerable moments. Last year I had the incredible blessing in disguise of being a patient.  What started as a sore throat turned into a severe, life threatening case of epiglottis with no known cause and no known cure. My throat was so swollen my cervical spine curved the other direction. Initially the doctors thought I would need to be intubated for 24 hours, that turned into eight days. Followed by a two month recovery in which I had to regain the strength to walk, eating and drinking were excruciating, and the sound of a fan would trigger debilitating panic attacks related to the post traumatic stress of fighting for my airway for eight unimaginable days. For eight days I was completely vulnerable, unable to even breathe on my own completely at the mercies of the nurses around me. It was absolutely terrifying. I would desperately ask questions related to my care, trying to understand what has happening around me. Eventually my words on that tattered journal became a desperate way to communicate, "trach?" I pleaded, hoping the nurses would realize the immense pain I was in and take the ET tube out, replacing it with a tracheostomy tube. The pain was coming from my epiglottis and the ET tube felt like a constant railroad spike jamming it's way through the most swollen and tender part of my throat, I was bronchospasming around the tube constantly, it was excruciating. The torture seemed to go on and on, days stretched into nights. The combination of the steroids and the pain made it impossible for me to sleep. I eventually asked my nurse, "Do you still have hope?". She tried to be positive but I could tell she was concerned. The doctors had not seen such an unusual case and did not know what the outcome would be. Hope was fleeting. Every morning they would perform a scope to assess the swelling with plans to extubate and every day the swelling remained the same. Finally, on the eight day the swelling had gone down enough they thought it was a good day to try extubation. The tension in the room was immense. I could feel my nurse's hand shaking as she held the straps of the ET tube. I was literally scared for my life and yet the pain was insurmountable. They were able to extubate me that day, it was one of the most terrifying moments of my life...after 8 days of being intubated, almost losing my life...I survived. Those eight days taught me more about myself than I've ever known. It also gave me the opporunity to be a student to the impact of bedside nursing. I was touched by the incredible effort my nurses put into my care. The impact they made on my will to LIVE was something I will never forget. Now I have had the opportunity to translate the lessons I learned as a patient back to the lives of those I serve. It was a humbling reminder of how quickly life as we know it can be taken away. My best friend came to visit me in the hospital the day the tube came out with her little boy. When they walked in he asked me, "Where is Ashley?" to which his mom replied, "She's right there!" He did not recognize me. Who was this stranger? Who was pale and sickly, riding in a wheelchair, unable to stand on her own? Illness changed me. It was a journey I would never wish upon anyone but at the same time I am so thankful to have lived through it. It is truly impossible to empathize until you're the one, lying helpless and vulnerable in a bed. To wonder if you will survive another day heightens the days you are given, I don't take a day for granted. Even as I filled my prescriptions at the pharmacy a week later I told the pharmacist, "Look outside! See that sunset? Isn't it beautiful?!" Because life is beautiful, even in the dark and painful times there is beauty in the experience. What is pain if we don't learn something from it? Than it is a wasted experience. We have to make something from it, we have to grow, we have to pour that into something constructive and meaningful.

A 'Good' Death

One of my favorite patients was a young adult I had known for many years. He did not have a supportive family so the hospital staff became his family. He and I developed a very close relationship. When there was bad news I was asked to accompany the doctor as she told him, when he had to make a decision, I was asked to discuss it with him to support him through the process. He was an incredibly smart and brave kid who endured quite a bit of pain and suffering. One day the attending physician found me and said, "Hey, your buddy in the PICU saying he wants to die, can you go down and figure that out?" ...Seriously...that's what she said. I went into his room and held his hand and listened as he talked to me, "I'm in so much pain" he said, "I just want this to be over." Than he said, "You give prisoners a lethal injection, why can't you do that for me?" Those words continue to haunt me to this day. Now this kid was not a whiner, he was a chronically ill young adult who spent the majority of the last year fighting for his life in the hospital. He was isolated from his friends, he had no visitors and he was truly suffering in unimaginable pain. In offering him all of the treatment options, many of which were futile, were we prolonging his suffering? He consented to all of his treatments up to this point and as soon as he made his wishes clear his health care team worked quickly to transition him to comfort care. He died peacefully and had as 'good' of a death as one can have...but what about patients that can't advocate for themselves? What about the families that are so blinded by their love and postponing their own, inevitable loss, that they can't see the suffering they're putting their loved one through with the unnecessary medical interventions? 
I am a huge Jean Watson fan. Her work reminds me that caring for the patient isn't just part of being a nurse, it's the foundation of good nursing care. In modern medicine caring is disregarded as "soft" medicine and yet the process of caring is actually instrumental in end of life scenarios in which families are requesting futile treatments for their loved ones (Jecker & Schneiderman, n.d.). If nurses and doctors could take the time to discuss thoughts and fears of patients and their families the heart of the matter would be revealed. If nurses modeled the caring behaviors of holding a patient's hand and demonstrated presence, perhaps the family would see that this kind of dignity and loving kindness is part of 'doing everything'. We need to work together to validate the importance of this kind of holistic care, to illustrate that delegating the tasks of determining and meeting emotional and spiritual needs away from physicians and nurses and placing it all on the social workers and chaplains is negatively impacting patient care in an immeasurable way. Nurses and doctors alike need to reconnect with the act of caring, it needs to become a part of our daily practice and our every interaction with patients and their families. We need to remember that meeting our patient's emotional and spiritual needs is not something that can be turfed to another member of the health care team. Caring for a person is not "soft medicine", it is our responsibility, it's our honor, our highest calling. And this thorough, compassionate care can help to decrease the moral distress faced by our patients and our colleagues in these difficult end of life scenarios. 

Jecker, N., & Schneiderman, L. (n.d.). When families request that “everything possible” be done. The Journal of Medicine and Philosphy, 20, 145–163.