An Oncology Nurse’s Heart: Helping Dying Patients Find Their Own Paths Home

Julianna Paradisi, RN, OCN, is an oncology nurse navigator and writes a monthly post for this blog.

Heart Break = Heartache  graphite, charcoal, water color, adhesive strip by julianna paradisi Heart Break = Heartache
graphite, charcoal, watercolor, adhesive strip, by julianna paradisi

The disadvantage of building a nursing career in oncology is that a fair number of patients die. Despite great advances in treatment, not every patient can be saved. Oncology care providers struggle to balance maintaining hope with telling patients the truth.

Sometimes, telling the truth causes anger, and patients criticize providers for “giving up on me.” In a health care climate that measures a provider’s performance in positive customer satisfaction surveys, paradoxes abound for those working in oncology.

Providers may also be criticized for delivering care that is futile. “Don’t chemo a patient to death” and “A cancer patient should not die in an ICU” are common mantras of merit.

Maybe because I live in Oregon, a state with a Death with Dignity law, or maybe it’s the pioneer spirit of Oregonians, but I don’t meet a lot of patients choosing futile care to prolong the inevitable. In fact, many patients I meet dictate how much treatment they will accept. They grieve when they learn they have incurable cancer, and most choose palliative treatment to reduce symptoms, preserving quality of life as long as possible.

But they also ask questions: “How will I know when to stop treatment?” or “What will […]

Cassandra’s Refusal of Chemo: Nurse Ethicist Ponders Ethics of Forcing Treatment

Douglas Olsen is an associate professor at the Michigan State University College of Nursing in East Lansing and a contributing editor of AJN, where he regularly writes about ethical issues in nursing.

scalesThe case of Cassandra, a 17-year-old female in Connecticut being compelled by the court to undergo chemotherapy for Hodgkin’s lymphoma, has aroused interest in the media and among bioethicists, who have offered mixed conclusions. (Here’s a recent update on Cassandra’s legal status.) For example, Ruth Macklin concludes that the actions taken to force the treatment were not justified, while Arthur Caplan concludes that compelling her to have the chemo is justified. Both are scholars of the highest order.

I agree with Caplan that she should be given the chemotherapy, but my purpose here is to illustrate that perspective plays an often unacknowledged role in ethical analysis. When feelings and personal perspective go unacknowledged, the analysis loses credibility and depth.

The principles in conflict in this the case are straightforward for ethicists: respect for autonomy versus beneficence.

As a society, we value control over personal choice, that is, autonomy, which would mean honoring Cassandra’s decision to forgo the chemo. The chief justification for overriding a patient’s autonomy is that the patient lacks decision-making capacity because she is […]

Talking About Death: Not Nice, But Necessary

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 […]

July 25th, 2012|patient engagement, Public health|4 Comments

Those Who Wait: Recent Work in ‘Art of Nursing’

By Sylvia Foley, AJN senior editor

“I held that stone / in my hand for hours while they split your bones,” says the narrator of Janet Parkinson’s poem “Talisman,” which appears this month in Art of Nursing. The poem speaks to the tremendous strain of waiting for the outcome of a loved one’s emergency surgery. It’s about the  need for connection over great distances, for a “stone constant” in the face of grave uncertainty. The poet’s voice is unsentimental and steady, and the poem, just seven lines, itself feels almost talismanic. (Art of Nursing is always free online—just click through to the PDF file.)

In Roger Davies’s poem “Preparing to Pretend to Knit at the Chemotherapy Clinic,” featured in October’s Art of Nursing, a husband also waits, feeling helpless. “I’ll choose the long, elegant needles,” he says, imagining homespun wools dyed in autumn colors. Recalling his mother’s “nonchalant / competence” at the craft, he longs for the solace found in knowing what to do—even if it’s only how to hold the needles. In the poem’s last lines, the narrator says, “I could look out the window / to this fading autumn day.” But it’s clear that he’s not quite ready to see that view yet.

Rebecca Thomas’s painting “The Waiting Room: Norma,” featured in November, depicts the artist’s grandmother, who […]

December 19th, 2011|Nursing, patient engagement|1 Comment

Maybe Palliative Care SHOULD Go to the Dogs

By Shawn Kennedy, MA, RN, AJN interim editor-in-chief

Last week, we took Sam, our ailing 14-year-old Labrador Retriever, on what became his last trip to the vet. Sam had been diagnosed with bone cancer in February after we noticed the right half of his head enlarging. Because of where the tumor was, it was inoperable. We felt that at his age chemotherapy wasn’t a realistic option, and we didn’t want the last few months of his life to be bad ones.

His veterinarian, who’d treated Sam since his puppy days, supported the decision, saying she would make the same choice for her dog. And so we spent the last few months adjusting doses of steroids and pain meds to enable him to live as normally as possible. For Sam, “normal” was being able to greet all comers to our door, to be the leader on his walks, to be smack in the middle of where his family was. (If people were in the basement and on the second floor, he would lie equidistant from where everyone in the house was. If we were in the same room, he sat, front legs crossed in his “elegant dog” pose, where he could see us all.)

So last month, when we saw that he would no longer get up to greet visitors or his family; was reluctant to go on walks (he did, but with a great sigh and lots of panting after even the shortest […]

September 13th, 2010|Nursing|6 Comments