“Good morning baby,” she said to me each morning I when I came into her room.
Ms. K was an educated woman in her early 50s with three children. She loved drinking tea in the morning. She also had a very advanced case of lobular carcinoma of the breast that had extended into her abdomen. A cluster of cancer cells was obstructing her small intestine, causing her to have nausea, vomiting, and relentless pain. Yet, she managed to smile through much of it.
To her oncology team in the hospital, it appeared that Ms. K was not going to survive this cancer. The question remained, when would she pass? The doctor I spoke to projected that she had no more than six months to live.
To Ms. K, it was not as certain. She saw her battle developing day-by-day. If she survived this day, she could survive tomorrow. There was no clear end in sight, and she certainly did not want to talk about what she saw as giving up.
Discussing code status in the hospital is never a simple conversation. On several occasions when admitting in the ER, I have spoken to patients or their families about resuscitation methods at the end of life: Should your heart stop beating, do you want the doctors to provide chest compressions, shocks to the chest, and medications to restart your heart? Should your breathing decrease, do you want a tube in your airway that will allow air to enter your lungs through a mechanical ventilator?
These are very confusing questions that require longer explanations and time for questions. To many, it is shocking even to hear the topics brought up, especially early in a hospital visit: Why wouldn’t a doctor want to give me every opportunity to live?
Ms. K chose to remain “full code.” She seemed to have a good understanding of the terms “do not resuscitate” and “do not intubate,” but she did not feel that they applied to her case. Refusing a possibly life-saving treatment was not in line with Ms. K’s goals. After all, she wanted to see her children grow up.
While the course she chose may prolong life, they can also cause significant pain and suffering. CPR commonly results in broken ribs and complications that lead to death. Intubation is inherently painful and only a temporary solution. If a patient’s goal is to be able to walk around and hug their grandchildren, these strategies may not be appropriate components of their care.
As physicians, we often do not dedicate enough time for dialogues with patients, and despite their importance, these difficult conversations are frequently abbreviated. Ms. K needed to have a doctor explain that she was dying at a rapid pace. She needed to have someone sit with her and come up with more reasonable goals for her care. She needed family in the room to ask questions and perhaps take in some of the information that was difficult for her to digest. Oncology was a busy service, her family rarely made it into the hospital, and Ms. K had been adamant when the topic was first broached. I did not know exactly how my role as a third year medical student fit in with these conversations. I should have asked, and we never discussed it again.
One morning I walked into Ms. K’s room to find the bed empty with fresh sheets. She had been taken to intensive care overnight for diminished breathing and a rapid heart rate. I turned on my heel and sped off to the ICU. Ms. K was alert, looking frightened and unable to speak as she was intubated. I knew that Ms. K hated tubes. She had needed a nasogastric tube to suction out her stomach while she was obstructed, and she told me it was the worst experience of her life.
“I’m so sorry,” was all I could manage. “I hope you are not in too much pain. I will be back to see you later.” I held her hand a moment and left. We had spent nearly three weeks together with the same morning routine. I desperately missed the usual “good morning baby” that had greeted me.
Ms. K died a few days later. Family had visited, and she expressed that she would change her status to “do not intubate.” She really hated tubes. Ms. K died peacefully without intervention. It was the first time a patient of mine died in the hospital, and I cried profusely that night. I did find peace in speaking to a colleague about what a wonderful, shining light Ms. K had been in our lives, even for a short time.
I believe strongly that the code status should be changed to “and allow natural death.” Refusing treatments is a terrifying prospect, but dying naturally removes the connotations that one is giving up. We owe it to our patients to explain these topics in detail and to underscore their importance early in care. As a writer and a medical student, I believe language is critical. I also believe that we have substantial room in modern practice to improve our oath to do no harm and that much of it starts with improved communication.
Natalie Wilcox is a medical student who blogs at the Doctor Blog.