Posts Tagged ‘end-of-life decisions’


Birdcages: An Oncology Nurse on Crucial Information Patients Need About Dying

April 10, 2013

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

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.

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The Hardest Decision: A Military Husband Returns to Tragedy at Home

February 12, 2013

FebruaryReflectionsIllustrationOur February Reflections essay, “The Hardest Decision,” is by a Amanda Richmond, a nurse based in Arkansas. It’s about a husband facing a drastically changed world upon return from deployment overseas—and a nurse who bears witness. Here’s the opening paragragh. Reflections essays can always be read without a subscription to AJN.—JM, senior editor

That she was still beautiful made her situation all the more tragic. She had little visible damage. An EVD tube snaked out from under her hair and deposited its contents into a drip chamber. Her chest rose and fell at a preselected rate of 14 breaths per minute. iv lines disappeared under her gown and terminated into a central line. On the monitor, her vital signs were flawless.


Web Roundup: Changing Specialties, Measuring Quality, Caring and Freeloading, More

September 19, 2012

by Ramon Peco/via Flickr

Here are a few things worth noting on the Web today. At Code Blog, “Rookie Mistake” is illuminating on the subject of switching nursing specialties. Here’s a short excerpt:

My new hospice job is going pretty well.  I really like it.  It’s been an adjustment, but worth the stress of change.

Overall, I’ve been pretty surprised at how little I know/knew about how people die naturally.

In ICU, if you are actively dying, you look terrible.  In most cases, people dying in the ICU are there because we were or are trying to save their life.  This requires some treatments that cause other problems. . . . That is what dying looked like to me for 14 years.  Turns out it’s a pretty exaggerated version of how it is when people naturally die without life-saving interventions.

Also notable: a short post that many may relate to about paperwork and burnout, at The Nurse Practitioner’s Place.

In other news, Kaiser Health News reports that the Joint Commission is releasing its annual list of hospitals that have done well in following certain crucial procedures and protocols:

The commission is recognizing 620 hospitals (download list as PDF or .xls file) – 18 percent of those it accredits — as “top performers” for following recommended protocols at least 95 percent of the time.

Congrats to those who made the list. But a caveat: The article does note that there’s “an ongoing debate” about whether process measures or outcome measures better reflect quality of care. And in truth, we’ve heard complaints from many nurses about process measures and their potential unfairness/inaccuracy. What’s your take?

Note also this article on the retirement of a “nursing legend,” and a fantastic piece at the Health Affairs blog called “Caring, Freeloading, and the Fate of the Affordable Care Act,” which makes this observation:

At the heart of the case for medical coverage for all isn’t the public’s health; it’s private tragedy.  Serious illness plunges people into a realm of Dickensian choice.

And if you haven’t, check out the CE articles in this month’s AJN: “Postoperative Delirium in Elderly Patients” and “Outcomes and Complications After Bariatric Surgery.”

Lastly, “At the Eye of the Storm,” this month’s AJN Reflections essay, is by a nurse who describes the struggle to make the right decision, along with siblings, about her gravely ill father’s care. Wanting to avoid overly aggressive measures, she nevertheless does her best to respect what her father would have wanted.
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Talking About Death: Not Nice, But Necessary

July 25, 2012

Photo by Eliza Peyton, via Flickr

By Amy M. Collins, editor

Our recent blog post on “death panels” triggered a memory of my own first real experience with the death of a loved one. It was a little over 10 years ago. I was living overseas when my mother called to tell me my grandfather had liver cancer and had been given maybe a year to live.

The physician had given my family three choices: the aggressive choice, chemo; a less aggressive treatment with an experimental drug that had moderate success; or to let him live out the rest of his numbered days. We chose the middle ground.

At the time I worked in medical publishing and thought I knew everything. Over the weeks that followed I would call home to get progress reports, usually putting my two cents in about what my family should be asking the physician. Finally, when things seemed to be getting worse, I flew home to help.

Nothing could have prepared me for the emaciated man I found sitting up in bed when I went to my grandparents’ house to visit. I hardly recognized my grandfather. It hadn’t been that long, but the cancer had already ravaged him. Despite this, he was cheerful and had high hopes. He didn’t seem to think dying was a possibility.

“When we go to the doctor, you can talk to him. Tell him I want to live,” he said. I remember him being positive as we discussed the plan of attack. He seemed glad that someone else would know what to say to his health care providers . . . but inside I felt like a fraud. I wasn’t a nurse or a physician. I was just a medical editor who knew there was little to be done.

Despite his energy that day, within my short visit home he worsened dramatically and was hospitalized. While there, he was mostly in and out of sleep, and I assume, in great pain. There were horrifying moments I won’t describe here. It was a few days before we even saw his physician. When we did, he was in a rush and barely stopped walking as I chased him down the hall, asking him what we could do next.

He paused for a moment. “Well, we can try chemo, but he’s very weak. It will probably kill him. Or you can let him die at home,” he said before leaving with no further instructions.

As he walked away, I felt myself start to lose it. What should we do? What would he have wanted? What did going home and ‘letting him die’ entail? How do you make a decision like that in three seconds, with a harried physician who’s clearly fitting you in and already spending too much time with you? Read the rest of this entry ?


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