Cancer Survivorship: Breaking The Myth of “Nurses are Bad Patients”

The Queen of Cups I collage by Julianna Paradisi 2017

Are nurses are the worse patients?

Upon completion of treatment for breast cancer, my surgeon remarked, “You got through treatment really well. In the beginning, I didn’t think you would.”

The comment struck me as odd, but I was curious. “Is this because I cried when you diagnosed me?”

“Yes.”

Thoughtfully, I replied, “I cried because I understood the diagnosis. I understood it would change my life.”

In return I received a patient smile.

The first plastic surgeon I chose was forthright in his opinion of me as a patient, however, “You nurses are the worse patients.”

I asked, “Are we your worse patients, or your most educated ones?”

He promptly discharged me from his care.

* * *

I received excellent treatment for breast cancer. My survival and good health are proof. But there were gaps in the emotional support I received.

It’s been nearly two decades since I had breast cancer, and all those years I accepted the label of being “a bad patient;” the one that asked questions, the one needing proof the  medical recommendations were best practice.

Then I became an oncology nurse navigator, with patients who are nurses. They have taught me I was not a bad patient, just a nurse-patient, set apart from non-nurse patients. And there are subsets of nurse-patients I help: those bringing an oncology background to their diagnosis, and those who don’t.

Nurses assume accountability for their care

Nurse-patients with oncology backgrounds manage their cancer diagnosis differently than their colleagues without. I suspect this is because they bring their own toolbox: They work with oncology surgeons, medical oncologists, and radiation oncologists. They personally know and handpick their treatment team. They’re still scared, but the support they seek is more pragmatic: how-to’s for managing treatment, work, home, and family life.

Nurses without an oncology background wonder if we are referred to top-notch practitioners, and receiving state-of-the art options, contributing more stress to our cancer diagnosis. We tend to get second, and sometimes third opinions about treatment recommendations. We are more likely to travel to nearby cities (and sometimes other states) with larger, nationally recognized cancer programs for consultations. We may delay starting treatment to fit in the extra consults. Our family and friends may not understand why we won’t simply “do what the doctor says.”

Here’s my unproven hypothesis explaining why this happens:

The Hot Seat: Nurses are compelled to advocate for themselves

Nurses, in our role of patient advocate, are educated to question doctors. We are accountable for catching, and preventing mistakes.

In my nursing education, this training happened early in the morning before our clinical days, in a potentially brutal ritual dubbed, “The Hot Seat.”

In “The Hot Seat” one by one, nursing students gave report on the patient (s) they were assigned that day: diagnosis, age, treatment plan, and goals for outcome. Our instructor cross-examined each student about everything: medication indications, dosage, side effects, and lab values to monitor. She inquired about imaging, and anticipated needs the patient may have at discharge. The more questions a student answered correctly, the more difficult the questions became. The fewer answers a student mustered, the hotter the seat became.

Nurses know unasked questions lead to harm

In The Hot Seat we learned critical thinking means always ask the next question. It’s the question you forgot to ask that leads to harm.

Nurses know the importance of asking questions. When we seek treatment outside of our specialty areas from doctors we do not know, we manage the stress by asking, “Why?”

My understanding of this means that nurses are some of my favorite patients. I remember what I needed to know to ease my stress during cancer treatment, and I offer it to my nurse-patients. Once they understand how oncology treatment works, they often become so independent in caring for themselves I rarely hear from them.

And I’ve certainly never discharged one from care.

 

 

 

Diet As Tolerated

by jparadisi

by jparadisi

Sitting in a trendy restaurant sipping a cocktail, I pick Marcona almonds from a small plate set between a blonde woman and myself. We are guests celebrating the birthday of a mutual friend. We grin self-consciously before introducing ourselves.

She asks, “What do you do for a living?”

Do all nurses dread this question at parties? Admitting I’m an oncology nurse is a buzz kill. The dread I anticipate appears in her eyes but not for the expected reason. She says her father is hospitalized in another city and “not doing well.” She can’t visit as often as she’d like.

She asks, “Do you like your patients? Is it hard taking care of them?”

I wonder, how much information can she tolerate? A few morsels or an entrée?

Cancer conjures images of wraiths drinking reconstituted chicken broth from Styrofoam cups or receiving nourishment through tubes. It would be untruthful to say this never happens, however, the social ambience of the clinic where I work surprises newcomers.

Instead of lounge chairs lining the walls of a single, cavernous space, our clinic has private rooms. Long-time patients have favorite ones. It’s not unusual to find Happy Birthday written in Sharpie on a piece of fax paper taped to the sliding glass door of a room of its “regular” occupant. Sometimes there’s birthday cake too. Cancer patients can eat birthday cake, like the rest of us. They eat “diet as tolerated.”

Patients with lengthy appointments are offered lunch, and some choose their infusion day based on the cafeteria’s soup du jour. Many choose to bring food from home, however.

Often, patients make their meals at the infusion clinic a special occasion by bringing utensils from home. I particularly admired a hand-thrown ceramic bowl brought by a special patient. Weekly, it was filled with something new: pillows of wonton, pea pods, and water chestnuts in broth, or brown rice with chicken. On rainy days, it cradled creamy macaroni and cheese, and an heirloom silver fork delivered each small bite to her awaiting mouth.

These meals are prepared with love. Families take pride in the accomplishment of feeding a loved one with cancer. The family table marches onto the foreign field of cancer proclaiming, “We will not surrender our loved one without a fight.”

Back in the restaurant, I see our hostess heading our way. The blonde woman has concerned eyes. There is only enough time to offer her with a small morsel of information.

I consider my answers to her questions, “Do you like your patients? Is working with cancer patients hard?”

“I love them,” I say. “Working with cancer patients is hard work but I can’t imagine a more rewarding job.” Her eyes relax. She takes a sip from her wine glass.

Like a fairy godmother, the birthday girl hugs me, kissing my cheek. Pouf! I am restored to a guest at her party, sipping a cocktail.

*This post was originally published on TheONC website.

Lessons About Medication Errors From Baseball

In the commercial, three guys are standing around a grill, talking about baseball. One of

painting by jparadisi

Baseball Card by jparadisi

them quotes a stat.

Another one says, “Really? Are you sure?”

The first guy says, “I’m 99.9 percent sure.”

The third guy says, “Then you don’t know.”

I don’t remember what product was advertised. I remember the commercial because the question of certainty came up regarding a medication order.

I was reviewing the chemotherapy orders:

  • Patient name and identifiers: √
  •  Orders are dated with today’s date: √
  •  The chemotherapy ordered is appropriate for the patient’s diagnosis: √
  •  The dosage is correct: Uh oh. Wait a minute.

The total dose (in milligrams) did not equal the product of milligrams times meter squared (m2). The reason was easy to spot, however.
The chemotherapy infusion was to be administered as a continuous infusion over two days. The order read:

xxxx mg of chemo drug X m2 = xxxx mg X 48 hours = total dose of chemo drug

The doctor meant to write:

xxxx mg of chemo drug X m2/every 24 hours = xxxx mg X 48 hours = total dose of chemo drug

I was 99.9 percent sure, which means I wasn’t certain. Unlike quoting baseball stats, there is no room for uncertainty in chemotherapy administration. Interestingly, a pharmacist felt 99.9 percent certainty was good enough and mixed the cassette sitting in front of me.

To be fair, this was not the patient’s first infusion. The pharmacist mixed the chemo based on past orders. Using a previous record to predict a result in the future is the definition of betting, which works in baseball, but not so much when administering chemo.

I called the office where the order originated. The nurse on the other end of the phone pulled up a copy of the order. “Oh, he meant to write every 24 hours. If I write that and fax it back to you, will that work?”

“Yes it would,” I said. “Are you certain?”

“I’m 99.9 percent sure.”

“Certain enough to sign your name to an order?” I asked.

There was a pause, and she said, “I’ll have the doctor take a look, sign it, and fax it back to you.”

I thanked her.

The corrected order, signed by the doctor, arrived on the fax machine. The checklist was successfully completed, and the infusion started.

I was 100 percent certain the infusion was correct.

Do you ever feel like the nurse holding everything up? What’s your opinion? Would you trust your familiarity with a patient’s past orders and go ahead with the infusion? Does your work environment support nurses delaying treatment while verifying orders?

Vacation!

At The Pool photo by jparadisi 2013

At The Pool photo by jparadisi 2013

JParadisiRN is on vacation this week. I’ll write a new post soon from a refreshed perspective. Meanwhile, if you haven’t read my oncology blog for TheONC, or latest post for AJN Off The Charts, this is a good week to catch up.

Cheers!

Free Webinar on Thursday, July 12, 2012 “Melanoma: Beyond the Basics”

Just in time for the Summer, and with Melanoma on the Rise in the U.S.,  TheONC is hosting a very important webinar:  “Melanoma: Beyond the Basics,” on July 12, 2012 at 12:00 pm EDT. Here is the link to the webinar.

Key highlights of “Melanoma: Beyond the Basics” include:

•             Identifying common presentations of primary melanomas

•             Discussion about the importance of correct staging of primary melanomas

•             Learning about the current standards for treatment of early and later stage melanoma

•             Discussing the novel and investigation approaches currently being explored in advanced melanoma

•             A question and answer period following the presentation

When caught in its early stages, treatment of melanoma provides high rates of survival, but  left to metastasize, it becomes lethal. Recognition and assessment of patients for melanoma is useful for non-oncological care providers too. Click on the link above to register for this informative webinar.

The Rise of Blogs in Nursing Practice

Joni Watson presents blogging’s validity as a useful tool for the professional growth of nurses in her article, The Rise of Blogs in Nursing Practice, published in the Clinical Journal of Oncology Nursing (CJON, April 2012, Vol. 16, No. 2). In the article, Watson guides nurses through integrating blog information into their practices.

Joni Watson authors the blog Nursetopia, and contributes posts for the ONS blog Re:Connect.

Joni opened her article with paragraph from a JParadisiRN post (used with permission). Citing blog posts in journal publishing indicates the growing legitimacy of the medium.

Other blogs noted in the article are Emergiblog, Nursing Center’s In the Round (Lisa Bonsall), The Nerdy Nurse, and of course, Off the Charts, the blog of the American Journal of Nursing.

Never Stop Developing Your Curiosity: New Post This Week for TheONC

This week, I’ve written a new post for TheONC titled, Never Stop Developing Your Curiosity.  I discuss the role curiosity plays, not only in creativity, but also in patient care, such as helping a patient deal with chemo induced alopecia.

TheONC is an online community for cancer care teams with blogs and discussions covering a variety of oncology topics. Recent posts discuss palliative pain control, stem cell transplant, cancer risk after solid organ transplant, music therapy, and more. Individuals involved in the care of cancer patients can register for a site login, and join the conversation. Follow on Twitter @The_ONC.

New Post for TheONC: Learn to Say No

The new post I’ve written this week for TheONC the Blog is  Learn to Say “No.” In it, I share how I learned to take back control of my time and relationships, the first step towards carving out the personal time necessary for creative growth.

TheONC is an online community for cancer care teams with blogs and discussions covering a variety of oncology topics such as spirituality, treatment regimens, research, and more. Individuals involved in the care of cancer patients can register for a site login, and join the conversation.

TheONC: A New Blogging Community for Oncology Nurses and Teams

Last week CancerNetwork launched TheONC; an online community for oncology nurses and staff. TheONC is a gated site for professionals so login is required to participate. The video link below explains more fully:

video.asp?section_id=1687&doc_id=238579

TheONC features bloggers with a wide spectrum of expertise writing on various aspects of cancer care. As a contributing blogger, I write from the perspective of an artist working in oncology. Through weekly posts, readers and I will discuss creativity, and its pursuit, in nursing. Images of my artwork accompany the posts. My first went live yesterday.

A Member of the New Uninsured Apologizes to President Obama

I Wish I Could Have Sold More Cookies to Pay For My Surgery photo: jparadisi 2011

In previous posts, I propound Universal Access to health care. I’m not particularly attached to whether states individually create their models, or if it is federally operated. I believe no one should go without health care.

As I’ve written before on this blog, the faces of the uninsured are changing. Yesterday, the Los Angeles Times featured an Op-Ed, Breast Cancer, Health Care, and a Public Apology to President Obama, by Spike Dolomite Ward, who typifies the New Uninsured. Her plight describes that of many of the patients admitted to the outpatient oncology infusion clinic where I work.

Many people tell me, “I take good care of my health. That’s my health care insurance.” Ward’s essay illustrates how that sort of believism isn’t enough.