Julianna Paradisi, who blogs at JParadisi RN and elsewhere, works as an infusion nurse in outpatient oncology. Her art has appeared several times in AJN, and her essay, “The Wisdom of Nursery Rhymes,” was published in the February 2011 issue.
I grew up in a family in which occasional conversations about death occurred at the dinner table. My father openly discussed his own. As a child, this terrified me, but he would say, “It’s a terrible subject, but everyone dies someday.”
I don’t remember how old I was when my father made me promise he’d be cremated and his ashes spread over the ocean upon his death. It feels like I always knew, and this knowledge comforted me when, a few years ago, my siblings and I spread his ashes from a boat over the Pacific Ocean where he used to fish.
Paradoxically, in other contexts my father struggled when it came to telling me about death. Starting when I was around three years old, in the springtime, he would sometimes bring home baby birds that fallen from their nests. He kept an old birdcage for this purpose. He let me name the birds, and I called each of them Jimmy. He taught me to mix small pieces of bread with watered-down milk, and then feed it bit by bit into their disproportionately large mouths with an eyedropper.
This ritual usually lasted two days. On the third morning, I’d wake up to find the cage empty. Every time, I ran into the kitchen where my father drank coffee, crying, “Daddy, Jimmy’s gone!” Every time, my father answered, “Sweetheart, Jimmy got strong. I let him go with his friends.” And I would be pleased that my father and I had saved another life.
I was 20 years old, visiting my father, when I said, “Dad, remember how you and I raised all of those baby birds, and let them go, when I was a kid?”
He paused, looking me in the eye. “Sweetheart, those baby birds all died. I got up early in the morning, wrapped them in paper towels, and threw them in the garbage before you woke. It’s very hard to save the life of a baby bird. I thought you knew.”
I didn’t know. All those years, I believed the baby birds flew with their friends. I knew my father would die someday, and be cremated. I didn’t know my baby birds had died.
I often think about this disconnect. For my father, it was easier to talk about his own death than to tell his three-year-old her baby birds died. Logically, it makes no sense, but that is often the case with our emotions. We know what we feel, and our emotions force logic to its knees.
As an oncology nurse, I see a similar disconnect regarding advanced directives and POLSTs (physician orders for life-sustaining treatment). Having this information available before imminent death provides direction, but does not prevent emotion from leading the charge. This is because, in my opinion, when death is imminent, it’s not the what to do that is in question; it is the when to do it that patients struggle with.
Oncology care has improved enough that many patients enjoy good quality of life even days before death. They are confused when told they are dying. Where are the feeding tubes? Where is the vegetative mental state? Their deaths do not resemble the description found on the advanced directives. Patients and families are confused about when to implement POLSTs and advanced directives. This includes patients who are also physicians and nurses. They are often more confused, because they do not wish futile care. In my experience, they frequently ask, “When should I stop?”; for many, the end is insidious. I have witnessed many express the surprised wonder of a child when told, “You are dying.”
This suggests that for advanced directives and POLSTs to be effective, every patient needs information about what their deaths may look like at crucial treatment points. Otherwise, like the baby birds I force-fed as a three-year-old, oblivious to their fates, patients will continue to accept and receive treatments beyond logical hope.
To accomplish this, palliative care referrals should become standard of care upon diagnosis of late-stage cancers—not for the purpose of relinquishing hope, but to provide access to a dedicated care provider able to answer questions and help guide end-of-life decision making. Pregnant women are provided weeks of education for childbirth. Is it logical that dying patients will need less?
There will always be patients and their families compelled to exhaust medical treatment in the hope of avoiding death; however, with earlier intervention of palliative care, more patients will have the education they need to implement their advanced directives and POLSTs.