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 the end look like?” Their courage in facing death amazes me. It often brings me to tears, too.

One advantage of building a nursing career in oncology is that I feel no compulsion to hide my tears from a patient during these discussions. In the context of compassionate presence, tears represent emotional authenticity, theirs and mine.

While nurses may sometimes grieve with patients, they can also offer them therapeutic support.

I have developed a few tricks so I don’t let dying patients down during the moments they need me most. My favorite is to ask a patient what he or she does—or, if they’re retired, did—for a living. As I listen to the story, I picture what they looked like in a business suit, wielding a hammer, baking a cake, or writing a novel. I picture her at the head of a classroom, teaching children to read. In my mind I say, “I see you,” and they become their authentic self, not the person cancer tries to reduce to a recliner chair. […]

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 a minor.

However, we also value doing what is best for patients—beneficence —and this means giving the chemo. Within the principle of beneficence, the “best” course of action is the one my training and experience as a nurse tells me will result in improved health, more function, and better quality of life.

The chief justification for overriding beneficence is that a patient with decision-making capacity chooses to do otherwise. The ethically relevant controversies of this case include:

  • the nature of Cassandra’s decision-making capacity
  • the degree of benefit expected from the treatment
  • the degree of harm expected as a result of honoring her refusal

The law considers Cassandra, as a minor, to lack decision-making capacity. However, she would probably pass a clinical assessment of her decision-making capacity. Cassandra is about nine months from being 18, the age at which she would be assumed to have capacity. In similar cases, the law sometimes invokes the ‘mature minor’ doctrine and allows a teen with clinically determined decision-making capacity to make the decision. (Editor’s note: A 2007 AJN article by the author discusses a similar case; it’s free until February 28.)

Other facts supporting a choice to respect her autonomy are that her mother agrees with her refusal and that the patient published an articulate essay (log-in required) in the Hartford Courant describing her situation.

Arguments that might be made against choosing respect for autonomy over beneficence are that the reasons for refusing chemotherapy given by Cassandra and her mother, while understandable in terms of the desire to avoid chemotherapy’s side effects, seem shortsighted in terms of scientific facts about this disease and its treatment.

[…]

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 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? […]

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 gazes […]

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