Death from neurological devastation is a tidy little package. In the ICU, patients die from congenital defects incompatible with life, virulent infections, or trauma. Often pediatric intensive care unit (PICU) patients die without their voices ever being heard by their nurses. The most startling thing I experienced transitioning from the PICU to oncology nursing was that I can have a lucid conversation with a patient hours before that patient's death.
Years later, I still hear his voice.
He arrived for a transfusion from home, where he was on hospice care. The odor of sloughing bowel explained why the hospice nurse called the oncologist and a transfusion was ordered. His death was not going to be managed easily in a home setting.
As he sat in a wheelchair, the elderly man resembled the comedian George Burns -- only more adorable. Instantly, I fell in love with him.
Behind him stood his son, holding a copy of his father's completed Advanced Directives. I sat with the son, reviewing the document, while coworkers took care of his father, drawing a type and crossmatch and arranging his admission to the inpatient cancer unit, where he would be kept comfortable, with clean, white sheets continuously provided.
It took the briefest assessment to see he was dying, yet he found humor in the situation. He made small jokes and puns while we worked.
The Advanced Directives could have been written in Martian for their lack of relevance to the situation. Feeding tube: check yes or no. The son brought my attention to the item troubling him: "Do not sustain life support in the event of a vegetative state." I understood the dilemma. The patient and family believed he would die in a vegetative state, not doing standup comedy from his deathbed.
As another nurse wheeled him to the hospital's cancer unit, he smiled at me and said, "My Juliet, parting is such sweet sorrow." After kissing his cheek, I broke down and cried, while his son said, "No, no, this isn't goodbye; he'll be back."
But it was goodbye.
I can still hear his voice. And I hear other voices, too, of cancer patients who were also physicians and nurses:
- "Why am I constipated and have pneumonia?"
- "How will I know when to stop treatment?"
- "I'm dying? It went by so fast."
They has also completed POLSTs and Advanced Directives months before.
Oncology care has improved to the point that many patients have good quality of life until days before death. This confuses patients and families when it's time to implement POLSTs and Advanced Directives. To be effective, patients need information about what their deaths may look like.
An example: For patients with myelodysplastic syndrome, a couple of units of red blood cells and a bag of platelets may be the only thing separating them from death, perhaps posing different end-of-life choices than those for patients with solid tumor metastasis.
POLSTs and Advanced Directives are not enough. We need to start talking about how we die.