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.

 

 

 

You’re a Nurse. Don’t You Have to Do What The Doctor Says?

“You’re a nurse. Don’t you have to do what the doctor says?”

Pulcinella (Punch & Judy) oil on canvas by jparadisi 2011

I check my iPhone to be sure the year is still 2012. I have not magically transported to a nursing station in the past, say 30 years ago, because it’s been 30 years since someone has asked me this question. I can’t believe the woman on the other end of the phone asks it now.

She answers phones at a doctor’s office. I want to say, “You have to do what the doctor says, because you’re his employee, not me,” but I don’t. She isn’t being rude.  She doesn’t understand the role of a Registered Nurse.

“This is an opportunity to educate,” I says to myself. So I give it a go:

“Nurses work with doctors, administering the medications they order to patients. However, it is my job to also prevent patients from harm as a result of their medications. I am calling to tell the doctor I cannot give this patient her medication today, because of her lab values. We have to reschedule the medication, when the lab results improve.”

“But the doctor wants the patient to get the medication today.”

“I know. Giving it today may harm the patient. I’m not calling to ask the doctor if I can give the medication. I’m calling to tell the doctor the infusion will be rescheduled.”

You do not understand! The doctor wants the patient to get it today.”

“I do understand. It is not safe for the patient.”

“You’re a nurse. Don’t you have to do what the doctor says?”

Sigh. “Is the doctor available? May I speak with him, please?”

Pain is The 5th Vital Sign, Who Has Control?

Photograph courtesy of Adriana Paradisi, 2011

Recently, two nurses in my blogging community wrote about patients in pain. Joni Watson at Nursetopia posted a link to horrific videos of patients suffering in pain without proper medication, and J. Doe at Those Emergency Blues urges nurses to provide post-op patients with education along with that vial of pain medication at discharge.

Patients who are not in control of their own pain medication often suffer in pain. Here’s a composite story from my Pediatric Intensive Care experience:

I am taking report on a child less than 24 hours post-op open-heart surgery. The night nurse, who is fairly new, tells me that the only pain medication given on her shift was acetaminophen, although the surgeon ordered narcotics too. I say, “WHAT?” The night shift nurse explains she offered narcotics, but the patient’s mother, who was up all night at the bedside, refused them. Like I said, I am familiar with this routine. I have a script for it. I ask the night shift nurse to follow me into the patient’s room so she can learn it too.

In the room, I see a small child sitting rigidly in a hospital bed. An untouched breakfast tray rests across her lap on the bedside table. Above her, the green tracings of the monitor displays tachycardia (heart rate is high). The central venous pressure (CVP) and blood pressure are also high. Barney the Purple Dinosaur is singing about friendship on the blaring TV, and I feel a headache coming on. Mom at the bedside, looks like she hasn’t slept for weeks, and is clearly exhausted. I say “Good morning,” and introduce myself. I say, “So, your daughter’s surgery went very well. How do you think she is doing today, right now?”

The Mom tells me her daughter seems very quiet, and isn’t eating breakfast, which is unusual. I say “Hmmm,” then point out that all of the numbers on the monitor are high, and to me, it looks like her daughter might be painful. “By the way, the night shift nurse mentioned that you prefer your daughter receive only acetaminophen, and she hasn’t had any narcotics. Is there a reason you don’t want her to receive narcotics?”

I am not surprised to find out that someone in the mother’s family recently died of cancer, or another long disease process and at end of life was on a narcotic drip.

The mother equates narcotics with death, and is illogically protecting her daughter by preventing narcotic administration. The patient is too young to speak for herself. I educate the mom on the difference between post-op analgesia and end of life pain control. She allows me to give a little narcotic to her child, and soon the kid is eating breakfast and singing along with Barney. Her vital signs are normal, and the surgeon is very happy with her progress.

Now I work in an ambulatory oncology clinic, and I see another variation of this patient who is not in control of his or her own pain medication administration. Typically, this patient has rapid disease progression, and almost always tumor metastasis to the spine. They are easily identified by their need of mobility assistance, and are painful even lying in bed. They tend to talk to you with their eyes closed. They are too sick to speak for themselves.

A family member always accompanies them, and that person knows the name of all the prescribed medications, the doses, and when they were last given. They give a detailed report of the patient’s diet, stools, and urinary output. The patient is clean, and dressed in clean clothes. They are obviously loved.

I assess for the fifth vital sign: pain. Their body language prepares me for a high number, and I am not surprised when they report an 8 out of 10, or greater. I see on the home medication list that the oncologist has prescribed both long acting pain medication and a short acting one for breakthrough pain.

I ask both the patient and the caregiver when the patient last had pain medication. The caregiver answers, “Last night.” I ask why the patient didn’t have a dose in the morning before this appointment. The answer is something like, “He needs to walk more.” “He doesn’t eat enough when he takes pain meds.” “I didn’t think he needed it,” and a long list more. Apparently, this is a very common problem confronting hospice nurses, and Medscape has a very good article on the topic.

It is my experience when encountering this caregiver and pointing out that their loved one is in pain that they start to cry. They almost always have the vial of long acting pain medication in their purse or pocket. I get an order from the oncologist, and together, the caregiver and I treat our patient for pain.

I explain that the bone pain will not go away; it will worsen. Our patient will need more pain medication, not less.  Then we discuss loss and grief, and how painful they are. The caregiver sees their loved one floating away on a cloud of analgesics, and illogically thinks that withholding narcotics will keep them here longer. I can’t fix this for them. It’s going to happen. I provide a safe environment to talk about grief. I urge them to be brave and declare their love by treating pain. I arrange the appropriate support to protect the patient at home.

And I say a little prayer for all of us.

Nurses’ Week: Sometimes The Best Recognition is None at All

The Broken Elevator photo: jparadisi 2011

Saturday morning, David and I woke to a noisy buzzing alarm coming from the elevator in the hallway of our building. It was stuck on our floor with its doors half open. Because it’s the weekend, I’m not hopeful of it getting fixed promptly. Next, as if we are under attack from a conspiracy of machines, our normally silent dryer started making a loud thumping noise, like tumbling canvas shoes, but all that’s in the drum is a small load of delicates. David is on his computer, looking for a repairperson as I write this post. The coincidental mechanical malfunctions remind me that as long as things meet my expectations, I often take them for granted.

At a social event, I was surprised to see an ex-patient and his wife also in attendance. I remembered them vividly, because of the longer than expected amount of time spent admitting him to our unit. The husband had the misfortune of being discharged from the hospital on a Saturday evening. Commonly, hospitals have a minimum of discharge planners on weekends, and the discharge planner’s job is frustrated by the fact that most of the outpatient services he or she needs to coordinate are closed. Also, he did not have a primary care provider, meaning no physician or nurse practitioner was in charge of his outpatient follow-up. To fix this problem, he was given a physician referral, and a phone number to call on Monday.

He arrived in our ambulatory clinic on a Sunday morning for daily treatment in pain, after a difficult night at home.  His wife and son accompanied him. The son was concerned about the eschar on his father’s wound, and I agreed with his assessment. Eschar is a dark, leather-like tissue formed on the surface of a wound. In the worst- case scenarios, it creates a tight band around an extremity, cutting off the blood flow to the body part below it. It increases the patient’s pain by preventing oxygen-rich blood from reaching the affected area. Fortunately, the body part below the eschar of this patient was warm to touch, with strong pulses, and a brisk capillary refill, so he wasn’t in imminent danger. He didn’t have a fever, and his vitals signs were normal, so pain control and obtaining a surgical consult became our priorities. We needed a doctor to write orders.

Luckily, the resident who treated my patient in the hospital was still there. I paged him, and told him what was happening. He agreed to see the patient in the clinic. This was generous of him, because once a patient is discharged from the hospital, technically, he is no longer responsible for his care. He wrote a script for breakthrough pain medication, and made a phone call for a surgical consult to address the eschar. In this way, the patient avoided a trip to the ER, the only other option on a Sunday. On Monday morning, a surgeon removed the eschar. I was pleased with myself for mobilizing the necessary resources on a weekend. The rest of the patient’s course flowed uneventfully until discharge.

The Dryer: Things That Go Thump photo: jparadisi 2011

At the social event, I approached the former patient and his wife to say hello. Looking at me blankly, they reciprocated, then awkward silence. Realizing I’d made a mistake, I said, “I didn’t mean to bother you. We’ve met before. I just wanted to say hello.” “Really?” said the wife. “Where would that have been?” Uh, oh. I mumbled the name of the hospital, but not the unit. Even the name did not prompt a recollection. They continued to stare blankly.  I desired to end the interaction, unsure if I was circling the drain of a possible HIPPA violation. Complementing the wife on her earrings, I retreated to another part of the room.

Later, it occurred to me that their discharge ordeal wasn’t an ordeal to them, because by means of coöperation and teamwork, I fixed it. They expected a smooth discharge with seamless follow-up care, and they got it. They took it for granted, because they didn’t experience the frustration of falling through the cracks. They didn’t recognize me, because I hadn’t stood out. They did not experience poor care versus quality care. In their mind, I did my job, and that did not merit recognition. They are right.

I appreciate the effort hospital administrators make each year during Nurses Week to thank nurses. Recognition for a job well done is one way of saying, “Thank you.” However, a lack of recognition, because the person served is unaware of the effort made on their behalf, is a form of reward too. The best recognition of a job well done comes from within.

Blog Post Supports Anne Mitchell, RN

     An opinion on the Anne Mitchell case is posted by David Gorski on Science Based Medicine. Anne Mitchell, RN stands trial for reporting a doctor for behavior that she asserts is medically inappropriate. She was fired from her job at a Winkler County, Texas hospital for filing the anonymous report. If convicted, Mitchell faces up to 10 years of prison, and a felony record. The Trial has begun.

Related posts on this blog: 

  Texas Nurses Accused in Whistler Blower Case

                      Update on Vicki Galle and Anne Mitchell Whistle Blowing Case