Editor’s note: All names and identifying details have been changed to protect patient privacy.
I had not yet guided a ‘goals of care’ discussion. This is the discussion that entails understanding a patient’s wishes regarding end of life care, and it is often in the context of determining what advanced medical interventions the patient might want. That day, my short white coat felt shorter, like it was yelling out to everyone I encountered that I had no idea what I was doing. The only comfort was my resident beside me, who was hopefully more experienced in the matter. I, on the other hand, was terrified. The stale hospital air was quiet as we began to converse with the patient, whom I had only met once, and the patient’s family members, who I was just meeting for the first time.
The day before, Mrs. Myers breathed through pursed lips as if she was blowing out birthday cake candles with every exhale. She responded to questions with single words or a head shake. Our attending noted that we should have a goals of care discussion with her family.
How do you articulate goals for a patient with chronic illness?
Goals. A word that I had, until this discussion, only associated with guidance counselors in college, sports team coaches and medical school advisory deans.
Goals of care?
I went over the medical facts of the case. The interim hospital history and physical note, which is always written when a patient stays ‘too long’ in the hospital, was well done. It read like a board exam case question. An 86-year-old female status post two falls came into the emergency department with severe hypotension needing resuscitation and IV fluids. She was admitted to the ICU with a systemic bacteremia complicated by end-stage renal disease. A few days into her hospital course, she was diagnosed with a GI bleed with worsening anemia and hypotension. She was scoped to find the bleed, epinephrine was administered to increase her blood pressure, and clips were inserted to stop the bleed. On her ninth day of antibiotics, she was finally transferred out of the ICU.
I called her husband the next morning with my voice uttering a shaky “Hello, I’m calling from the hospital.”
“What happened?” he said. “What’s wrong?”
I reassured him that nothing acutely had happened; instead, it would be good for him to come to the hospital to just have a conversation. He agreed to come in that afternoon.
I felt strange about the situation. Nothing acutely had changed. She was stable … she was stable but sick … she was stably sick. Yet it was time for a conversation, a discussion. The conversation that afternoon was structured and empathetic.
“What is your understanding of this hospital course?” the intern physician asked.
“The delirium is a consequence of her stay in the ICU,” Mr. Myers responded.
Words were thrown around: comfort care, hospice, caregiver and gradually worsening. We were standing around Mrs. Myers’ bed glancing in her direction every now and again, not lingering too long or speaking around her. We heard a shuffle and turned to see her move her birthday-candle-blowing lips and heard her raspy voice say:
“Let me go.”
Her husband, his eyes damp with tears, replied, “I don’t want to.”
This was the first time in medical school that I held back tears in a patient room. As patients, doctors and family members, we all have trouble letting go. As human beings, we have trouble letting go. In our personal lives, we are told to hold on tightly to those we love, to fight for relationships and to protect that special dynamic. In our professional lives, doctors are taught to cure, to treat and to heal.
All of this stands in striking opposition to Mrs. Myers’ plea. But perhaps, if we look at letting go through a different lens, it might ease the pain. Caring for Mrs. Myers was a critical turning point in teaching me that letting go in certain situations can be a way to protect us and our loved ones. Indeed, it is a form of treatment in and of itself.
A recent study by the American Journal of Hospice and Palliative Care demonstrated that postponing goals of care discussions was associated with a greater likelihood of aggressive interventions, patients dying in the inpatient setting and increased ICU admissions. In fact, with each day that the goals of care discussion was postponed, there was a 4% increased probability of inpatient death.
Letting go is not easy. But sometimes, it serves to ease suffering, and that process is important to recognize. As medical students, we have the unique opportunity to practice these conversations as we spend time with our patients. Understanding their wishes before fatal, chronic illness occurs is crucial. As future physicians, we should recognize the importance of palliative care in the hospital and should broach goals of care conversations sooner. As human beings caring for loved ones, letting go is not standardized and does not come with a physician specialist to help with decision-making. It’s difficult. And it is okay to live with that.
Image credit: Hospital by avinashbhat licensed under CC BY-SA 2.0.
Contributing Writer
University of Rochester School of Medicine and Dentistry
Rohini is a newly graduated physician from the University of Rochester in Rochester, New York class of 2019. In 2013, she graduated from the University of Rochester with a Bachelor of Arts in epidemiology. She enjoys spontaneous dance parties, discussions of global health over potluck dinners, and trivia nights. She will be pursuing a residency in radiation oncology in her home state of Maryland.