Abstract
Ihad finally fallen asleep in the call room despite the freezing temperature and the paper thin sheets. How are patients ever able to sleep in this cold? The pager went off. Joyce Miller had low blood pressure despite fluid resuscitation and needed a higher level of care. It was up to me, the intensive care unit (ICU) resident at the time, to evaluate her.
Age 63 years and with metastatic breast cancer, Joyce had recently started chemotherapy and all her cell lines were down, meaning she had no immune system. Her low blood pressure signaled a serious infection. The next few hours were spent transferring her to the ICU. Then, at sunrise, I listened to the ICU doctor and oncologist talk shop with their morning coffees. “Definitely no more chemotherapy for her.” “She won't even survive this hospitalization.” Why had no one told her this before the transfer?
Joyce had the right to know that her doctors thought she was going to die. She had mentioned to me that she had been hesitant about chemotherapy from the beginning. Part of me wanted to wait and see whether she would get better, but the other part wanted to make sure she had meaningful last moments with her family. Moments I had missed within my own life.
I went back to talk with Joyce, her arms already bruised from urgent laboratory draws. After sitting on her bed and accidently activating the bed alarm, I provided the medical facts. I described what ICU level of care looks like, outlined what to expect from comfort care, and expressed my concern that ICU-level care would likely not make a difference. I could not escape the deep discomfort I felt when talking to her directly about death—if she could think, talk, and listen, was it really possible she was dying? Joyce told me to focus on her comfort. She left the ICU later that day to a quieter hospital room with a view overlooking the Charles River.
When I returned home that night, I was exhausted. After reading my kids their bedtime stories, I prepared for bed and checked the electronic medical record to see whether Joyce had died. But instead I read that Joyce's vitals showed signs of improving. The doctor on staff had left a note: Joyce was appearing more alert. How could that be? Had I been wrong to convey the doctors' prognosis? Was Joyce capable of recovery after all?
Refresh. Her family members initially came to say goodbye, but then they started expressing hope that she was getting better. Maybe antibiotics should be started again? The medical team started checking vitals and laboratories. Maybe she should get more chemotherapy? Had my supporting her comfort care decision shortened her lifespan for nothing?
Refresh, refresh, refresh. Days went by like this. After five days of obsessively checking the medical record, I read that Joyce had died. A wave of emotions came over me: sadness for her family mourning their loss, but also immense relief. And then guilt for feeling so relieved. Maybe I would have felt better to have tried every medical intervention, to have been doing something, not nothing?
That week, I happened to walk past the ICU doctor. “Thanks for doing what we all should have done,” Dr. Chen said. “She could have been lying here in the ICU, delirious, on multiple pressors. Instead, you gave her time with her family.” Her words calmed me. Some of the guilt started to melt away.
A similar dilemma presented itself after residency, while working nights as an oncology hospitalist. The call room was larger—still freezing, but I had learned to grab more blankets from the supply closet. The sound of a pager going off no longer terrified me. The nurse needed me to see Rosemary Stone: she had a new diagnosis of aggressive lymphoma and her vital signs were unstable. The team caring for her during the day had told me that she was sick but they were still hoping she would improve enough to start treatment. “She'll likely die during this hospitalization anyway, though.”
I talked with Rosemary about her six children and cute dog while placing the appropriate orders and making the necessary phone calls to get her to the ICU. There were many things I needed to do. The next night I got paged about Rosemary again. She had already been discharged from the ICU, but now her blood pressure was too low. I was ready to repeat the exact same steps as before, but Rosemary stopped me. “Am I dying?” she asked. “I want to know what is going on.”
No one, including me, had talked with her honestly. I had fallen into the assumption that because Rosemary was young, in the hospital, and previously a healthy person she wanted everything done. I didn't want to go through the mental agony of making the call too soon. Plus, I was not her primary doctor; there were so many admissions for me to see and patients for me to cross-cover…the excuses in my mind were plentiful. Then I remembered Joyce and the time I had given her. I gave Rosemary the time and honesty she needed to make her own health decisions. The next day she went home to be surrounded by her family—family she had not seen in over two weeks due to hospital visiting restrictions.
I still worry about the impossibility of knowing when a person is nearing death; the thought of being wrong is terrifying. And we are historically so bad at this type of prognostication! I know how much easier it is to talk to a health care proxy only once their loved one is clearly at death's doorstep. Or how much better and easier it feels to do every medical intervention, just in case. But Joyce and Rosemary serve as reminders to me that our patients often want the truth. It's not my role to make decisions for patients. My job is to translate medical knowledge into the information they need to make informed decisions about their health care. That information is rarely perfect; the best I can give are realistic estimates and examples. My fervent hope is that it may be enough.
For us doctors, this process isn't taking the easy way out. To the contrary, it's one of the hardest things we have to do. It requires time, bravery, and confidence. But that is what our calling requires.