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End of Life Care: Does it ever get easier?

By IHI Open School | Tuesday, May 22, 2012

May 9, 2011 was the first day of my third year of medical school, first day on the cardiology inpatient service, and the first day I met Ms. W, my first patient. Ms. W was a 77 year old woman with COPD, right-sided heart failure, pulmonary hypertension, and was in the ICU for ARDS due to spontaneous hemorrhage of unknown etiology. Because taking care of Ms. W would be challenging and overwhelming, my senior resident and I walked into Ms. W’s room together for introductions.


I naively expected to see a charming elderly lady who was just a little short of breath. However, one could argue that formal introductions were not needed because Ms. W likely never even knew we had walked into her room—she was on a ventilator and thus was heavily sedated. Nevertheless, Ms. W was very much present. Her gray hair was pulled back in a high loose ponytail, her hands were warm and her head bobbed up and down with each breath. She would inconsistently raise her eyebrows at the sound of her name and her tongue would slide towards whichever side her body was turned on. Despite the lack of any form of acknowledgment at our first meeting, Ms. W made a significant impression on me because just fifteen years earlier, my grandmother, who was 77 years old, was also in the ICU heavily sedated and dependent on a ventilator.


I worked diligently to take care of Ms. W. Every morning, I cheerfully greeted her, carefully checked her heart and lung sounds, confirmed the presence or absence of distal pulses, monitored the position of her endotracheal tube, checked every inch of her skin for signs of rash or pressure ulcer, and recorded her ventilator settings. As part of my morning ritual, I crossed my fingers before picking up her record book of ventilator settings hoping to see a positive trend towards recovery over time. I zealously poured over books and primary literature to understand the complicated management of her cardiac, respiratory, and renal disturbances. Perhaps it was selfishly motivated, but I felt committed to Ms. W. I strongly believed that if I could heal Ms. W, I could make up for my lack of understanding and inability to help my grandmother fifteen years earlier.


As the days passed, there were no signs of improvement and there were plenty of subtle hints that even a modest amount of recovery was unlikely. Managing her fluid status with changes in either direction only made things worse. Family meetings were initiated. I stood in the shadows as difficult conversations uncovered internal family tensions between honoring Ms. W’s understood wishes and managing Mr. W’s feelings of loss. With each passing day left without a decision about our next steps, Ms. W steadily and slowly declined. Her ventilator settings started to uptick towards the need for more aggressive support, her kidney function was slipping, and the color of her feet became mottled. It was finally decided that it was time to let Ms. W go. Because Ms. W was my very first patient, my senior resident insisted that I join the family as they said good-bye.


The family, hospital chaplain, senior resident, and I all gathered into Ms. W’s room. Slowly, one by one, the beeping and whirring of the machines helping Ms. W stay alive were shut off. The endotracheal tube was removed and the only sounds left were short exhales of air and muffled sobs from Ms. W’s family. The sight of Ms. W’s family quietly and lovingly saying good-bye to her instantly transported me back to my grandmother’s hospital bed. Without consciously being aware of my own thoughts, I too began to sob as little bits and pieces of the past and present intermingled. I was not there when my grandmother passed away. But, simply transposing my father and mother’s faces onto Ms. W’s daughters felt all too real.


In just moments, after a few sputtering coughs, Ms. W stopped breathing. As I stood alone in my corner of the room shifting in and out of my own thoughts, I remembered that it was my father’s birthday--an overwhelming coincidence that made things too personal. With this realization, I said my good-byes to Ms. W and her family and then stepped out of the room rushing to find some privacy. All of the bathrooms were occupied, so I dashed into an empty family waiting room. I closed the door. I grabbed a box of tissues in one hand and held onto my cell phone with the other as I began to cry and wail. While I rationally and clinically understood the importance of discontinuing aggressive treatment for Ms. W, I could not resist feeling like I had failed her, and by association, failed my grandmother.


After gathering some composure, I loosened my grip on my cell phone and called my mother. She was away in China, but I ignored the inconvenient time difference because I needed to hear her warm and comforting voice. She explained and described how hard it was for us to let go of my grandmother. My mother assured me that it was the right thing to do and it was not a failure. My grandmother never wanted to be in the ICU and we had already disrespected those wishes for 200 days. She was ready and as honorable children, my parents had to let her go. Hearing the words that I myself have advocated for in regards to end of life care while working in the area of quality improvement of health care delivery, I calmed down and regained my strength.


My month on cardiology was only the beginning of a year of dramatic change and growth. By the end of my cardiology month, my clinical knowledge had increased exponentially. But, I can’t confidently say that I achieved similar emotional maturity. Ms. W was only the first of a total of four patients I lost that month (I have since lost another three while on surgery and lost my dog whom I was medically managing remotely as she succumbed to mesothelioma). On one hand, I have learned to harden my heart, for self-protection reasons, as I have not shed another tear for my patients. But, on the other hand, my great exposure to death has not made leaving the hospital when I had an unstable patient or losing patients any easier. Of all of my patients, the faces and narratives of the patients I have lost are those that I remember most vividly. The clinical courses and what I could have done differently, to some extent, haunt me. Consequently, the feelings of failure are always hovering and have shaped all of my future difficult patient experiences. Selfishly, I am drawn to more aggressive and alternative treatments despite promised or lack of promised outcomes.


Will my beliefs and instinctual emotions ever align? As I continue in my training, perhaps I will achieve a better balance between the science of medicine and the humanistic relationships with my patients enough to step away from my own selfish discomfort with failure. Will more experience become the evidence I can depend upon when making future clinical decisions? Because death and dying are fundamental aspects of medicine, for the sake of my patients and my own well-being, I certainly do hope that time and experience will foster the strength to be my patients’ guide through difficult times. Of all things, this is the best medicine that I can provide.


- Eva Luo, MD/MBA Student at University of Michigan


Originally posted on March 21, 2012

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