When we die, we die alone. Regardless the number of those who surround our deathbed, we experience our last breath alone. Our last feeling of pain. Our last moment of hope. Our last words, our parting gift to the sentient world as we depart the duress of consciousness. The ethereal message leaves our lips to pierce the very tangible aroma of Clorox and human excrement. The hearts of the healthy, beating to the undulations of our agonal breaths.
At fifty-six, Vivienne chose to cry out for her mommy.
I spent my first five days as a third year medical student learning about Vivienne — listening to her life story and examining her medically for its physical manifestations. Though her clarity changed day by day, waxing and waning with her level of consciousness, Vivienne’s ability to convey her joy, hope, fear, pain and deep embarrassment were never lost to the hepatic encephalopathy … or end-stage renal disease, methadone withdrawal and new-onset hepatorenal syndrome.
Before she entered the hospital, Vivienne was a mother, a grandmother, an ex-addict and a widower who put her husband to rest at the tender age of thirty. A woman who used the little money she had to finance her grandchildren’s education — her granddaughter, the first to go to college and her grandson, the kindergarten math whiz. She prided herself in both her ability to support the people she loved and her ability to take care of herself, despite all of her chronic diseases.
Vivienne only requested two things as a patient: pain control and dignity. The problem was that her tissues were so full of fluid that she could not walk far enough to reach the bathroom, so she had to use a bedside commode. And without permission or discretion, many of the hospital staff would walk in on her during her most vulnerable moments.
On the day that Vivienne died, she was none of the things about which I had come to learn. To her nurse, she was repulsive and the reason she’d have to work overtime. To my intern, Vivienne was a mystery — what causes severe hypoglycemia and anion gap metabolic acidosis? To the critical care team, she was a typical non-compliant s/p TIPSS patient circling the drain. No family there to claim her significance or uniqueness.
Drawn by her piercing screams that morning, I entered her hospital room with a swipe at the hand sanitizer and instinctively grabbed her hand as she cried out in pain. It was only after the nurse barked at me to let go, wash my hands and put on a pair of gloves, that I noticed that Vivienne was covered from knees to chest in her own diarrhea. The nurse was pissed, and vocalizing loud enough for all to hear how annoyed she was that Vivienne “shit herself. I shouldn’t have to clean up this disgusting mess.”
As if doing whatever is within her capacity to help a patient isn’t the very job she signed up for when she became a healthcare worker. As if Vivienne could have prevented it. As if Vivienne couldn’t hear her as she lay helpless to defend herself from the ridicule.
The nurse gripped Vivienne’s shoulders and hips and yanked her sideways to take off the sheets that were slathered with the putrid consequence of a naloxone-lactulose cocktail. I gloved my hands, grabbed onto Vivienne’s and tried to get her attention. Once we made eye contact, I didn’t look away as the nurse and nurse’s aid cleaned and changed her. And then it was only the two of us in her room.
The residual stench of shit and sepsis mingled with a dread that hung so thickly and obscurely that all of my actions felt Parkinsonian. I motioned for the door so that I could make sure the nurse was getting the tramadol we had ordered at least 30 minutes ago and Vivienne grabbed my hand tighter. More lucid than I had seen her all morning, she looked straight into my eyes and said, “Please. Don’t go. Please sit with me. Don’t leave. You’re the only one who cares.”
And so I choked down my tears, pulled up a chair and sat with Vivienne, holding a cup of water to her parched lips and asking her questions about her family to distract her from the pain while she cried out for her mommy. As I sat there, stroking her hand with her own diarrhea crusted into her mycotic-bitten fingernails, I couldn’t help but feel helpless, terrified, determined and angry. Where was her pain medication? Why didn’t we know what caused her acute decompensation? Why was the nurse caring more about her paperwork than Vivienne’s acute need for pain relief? Where was my intern and why couldn’t I do anything but hold Vivienne’s hand as the life from her eyes slipped away with the tightness of her grip?
As I watched the nightmare in front of me, despite myself I was happy that Vivienne was so decompensated that she was no longer aware that her worst fears were coming true. Her last conscious moments were spent half-naked, being chastised for the unwished act of incontinence and feeling like the person who cared about her the most was a stranger she had met five days ago. The dignity she requested, even in her dying moments, was lost to the grind of another hectic day on twelve-north.
The impersonality, the stark reality of it all still leaves me raw and makes me nauseous. Is nothing sacred in the halls of the hospital?
This is usually the place where I offer the insights I have gathered upon reflection of this experience. To analyze my feelings and learn something from how others and I acted the day that Vivienne died from gram-negative sepsis. But I have no answers or insights. I only have feelings of anger, dread and worry.
And I have questions — lots of them. Is this how I’m going to act in five years? Ten years? How long does it take, how many aggressive patient family members, how many hours overworked, how many patients with similar diseases does it take, to unknowingly slip into apathy? How do I grow in my experience and clinical knowledge without losing my patience, my wonder, my love for people and the ability to see each patient as unique and worthy of my compassion? How can I fight the seemingly impending acquiescence to the mediocrities of clinical convention? How do I balance being someone capable of diving into the story of each patient without having that subjective connection cloud my ability competently and objectively deliver care? How am I supposed to give my all into each role I have in life — a caregiver, a student, a friend and a family member — when there aren’t enough hours in the day to achieve even one of those goals? Am I supposed to settle and if so, which one takes priority? Am I supposed to balance and if so, at what cost? How can I be watching someone literally slip away in my arms and also be worrying about the two admission notes I have to write and case module I have to submit by midnight and the fact that I need to get at least five hours of sleep so that I am conscious for another twelve-hour shift? How much more of a struggle will this be when I gain even greater clinical responsibility? How do I stay human in a system and life comprised of superhuman demands?
This reflection is more about asking than answering these questions. I have a feeling I will spend the rest of my life responding to them. And to make any of this anecdotal would be to cheapen the lessons I plan to learn from my experience of Vivienne’s story.