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.”
by Julianna Paradisi
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.
Nursing is a significant part of the health care system and its main focus is to provide care to patients and support to the family members. The improvement of the patient quality of life remains a priority when palliative care is delivered. While nurses are aware of the patient’s critical illness, their interest is what makes the patient uncomfortable and to address it. Therefore, the focus is to pay attention to the patient behavior and family members on a daily basis. Palliative care has no limitation patient can start receiving treatment as soon as the diagnosis is made and continue for as long as needed. Besides managing the symptoms it is also important to address other issues with the patient and there love one such as POLST (physician orders for life-sustaining treatment) and advanced directives. This process will ease of some burden on the family member.
Nursing is a significant part of the health care system and its main focus is to provide care to patients and support to the family members. The improvement of the patient quality of life remains a priority when palliative care is delivered. While nurses are aware of the patient’s critical illness, their interest is what makes the patient uncomfortable and to address it. Therefore, the focus is to pay attention to the patient behavior and family members on a daily basis. Palliative care has no limitation patient can start receiving treatment as soon as the diagnosis is made and continue for as long as needed. Besides managing the symptoms it is also important to address other issues with the patient and there love one such as POLST (physician orders for life-sustaining treatment) and advanced directives. This process will ease of some burden on the family member.
I agree. It’s also my experience that patients sign up for a certain scenario, which of course are always open to unexpected variables.
I think the most reasonable course is early, regular discussions with loved ones about our end of life intentions, such as my father did. While never perfect, these conversations are the foundations from which the nuances might be teased out when faced with unexpected scenarios.
You are so right there is a critical need for education for all. Even when discussions occur there is no tidy check list that will hit upon all the nuances. Providers often do not understand all the ‘what if’ scenarios and patients sure don’t. All the options make it confusing. Perhaps it is our nature to fight for life no matter what. When you write your advanced directives/appoint a proxy you intellectually feel you have covered all your bases. I have seen much death and dying over my 30+ yrs, as a nurse and personally as a health care proxy. There is no tidy solution and I have yet to see a scenario that played out as I would have imagined. Indecision and avoidance will be the default for most hence the low utilization of palliative care or hospice care.
I’ve seen the disconnect you speak of. Thanks for this post – and I love seeing your artwork.
Great post, as usual! This is a tough topic, sensitively discussed. Your suggestion around early access to palliative care providers and the knowledge they can bring would be ideal.