I met Doris (name changed), an older woman who had received a cancer diagnosis, in the emergency department of our hospital. She had called to let the hospital know she was coming, but after I’d been waiting for 30 minutes, she called again to complain loudly that I wasn’t there to meet her. When I asked her where she was, she began to scream and cry, insisting that she was at the front desk. She had gone to the wrong hospital.

This marked the first of our many encounters.

I connected Doris with my colleague, Megan Whittington, one of our cancer care liaisons (CCLs), who helped her arrange transportation to her first office visit with her gynecologic oncologist. I went to the office to be there for that first appointment, only to find Doris sitting in the lobby crying and saying she had no way home, when, in fact, Megan had arranged a round-trip ride, told the patient about it, and given her the phone number of the taxi company we use so she could let the driver know what time to pick her up.

Doris’s memory problems, lack of organization, and emotional volatility caused countless complications over the course of her treatment. When her chemotherapy began, she always forgot her scheduled times, as well as her lab dates. Her physician’s team was in constant contact with the hospital, as was her chemotherapy coordinator. We all tried our best to help Doris get to her chemotherapy appointments, follow-up labs, and injections. Megan, an incredibly patient and understanding CCL, experienced intense frustration, as did the physician’s team, who were managing a full patient load in their clinic, which served many indigent patients with multiple needs. Every single appointment for Doris involved several frantic phone calls (from Doris to us all), followed by each of us scrambling to make sure Doris understood the arrangements and actually got to her many appointments.

At Christmastime especially, Doris had a very hard time processing information and became extremely confused. But then a funny thing happened that would change Doris’s experience and ability to cope with her schedule.

I had ordered a day planner that was not the one I actually needed (in my haste, I didn’t read the description properly). The day it came, coincidentally, I received calls from Doris’s doctor and chemo coordinator pleading with me, as the oncology nurse navigator, to help Doris keep her schedule straight. That little day planner popped into my head. I wrapped it up in holiday paper, complete with a little bow and a greeting card, and I went over to the doctor’s office. When Doris came for her appointment, I presented it to her.

After she’d opened the gift—and cried because someone had thought about her enough to give her a gift&mdash;she and I sat down to go over how to use it to help reduce her frustrations with her schedule.

She called Megan to say how excited she was to have this beautiful day planner. From that day, she has kept her notes, has written down her appointments, and has been sure to let us all know that “it’s in my day planner.”

Yes, there are still days when I run all over our huge hospital campus to make sure Doris has what she needs or is where she is supposed to be, but she always reminds me that she has her precious day planner with her and she will always treasure it.

As navigators, we strive to help our patients traverse the complicated maze of treatments and appointments, as well as the terrifying uncertainty of their physically, emotionally, and mentally challenging journey. We constantly obsess about making things simple for patients, and we continually devise many tools/forms/devices—anything to help our patients.

That little day planner, ordered in error, proved to be not only a great help to our patient, but it also gave a lonely, impoverished woman a sense of worth and value—and, in her very solitary life where there are not often any holiday gifts for her, a feeling of being cherished. It really doesn’t get much better that that for any of us, now does it?

Articles

A nurse navigator uses a simple tool to help a forgetful patient overcome a barrier to care.

The Day Planner

We in the subspecialty of oncology nurse navigation assiduously work to authenticate and substantiate our role. We use many metrics, competencies, and benchmarks that validate what we do for our patients, but let us never forget the inestimable emotional significance we can bring to our patients as we guide them through the grueling journey of their cancer experience and treatment.

One of my patients with ovarian cancer was a professor of English literature. We will call her “Elsa.” If this conjures up the title character in the animated film, Frozen, it would crystallize her persona quite accurately. During one of her increasingly frequent admissions, she laughingly characterized her possibility of a cure by saying it was as likely as seeing flying pigs.

That day I went to our hospital gift shop and, lo and behold, found a beautiful, soft, and cuddly flying pig. The woman at the shop is well aware of my eccentricities, so she and I both laughed at my delight in finding a stuffed flying pig as we wrapped it to give to Elsa— who laughed so hard that tears came to her eyes. The next day Elsa went to the GI lab for a procedure, and when she came back to her room, her flying pig was gone. Needless to say, she was very disappointed. But being the kind soul she was, she said that maybe someone took it to give to their child. As always, I was astounded at Elsa’s lemons-to-lemonade thought processes.

Sadly, not too many months later, Elsa was readmitted with anasarca and nausea; in ovarian cancer, this is a profound and moribund development. Having known this beautiful woman since her diagnosis, I went home that day in tears. My husband (another lemons-to-lemonade personality) sat down at the computer and ordered 2 beautiful Webkinz flying pigs from Amazon and had them to us the next day. I brought them to Elsa—who had toddler-aged twins&mdash;and she laughingly shared her plans for the stories and wonderful scenarios to be experienced with the twins and their new flying pigs.

Elsa died 2 weeks later, but her husband told me how much fun she had with the twins as she shared not only flying pig stories, but essential cuddling time with her children. Me, I have a crystallized and beautiful memory of Elsa, intermingled with the quantifiable medical aspects of her care.

Another story involves a very genteel man, “Lance” (quite the naturally aristocratic and elegant individual). A nurse colleague and friend asked me to see him as he was her neighbor. Lance had pancreatic and lung cancer and was not doing well at all. I went to his room and spoke with him, which was quite difficult as he had a nasogastric tube in place, oxygen via a rebreather device, and a massive amount of ascites, making it difficult for him to breathe and speak clearly. Nevertheless, he managed to have a short conversation with me.

Profoundly saddened by Lance’s obvious struggle, I came away from his room and pondered how to approach a second visit. Once again, I went to the hospital gift shop—more to compose myself than any other reason&mdash;and there was a large, cuddly, funny-looking, stuffed beaver, complete with a big, flat beaver tail. When I got home, my husband asked me what I’d bought at the gift shop (he knows those blue bags well) and my reply was, “Do you want to see my stuffed beaver? His reaction to me&mdash;(

The next morning I went to Lance’s room where this time his wife was with him. We chatted as I held the stuffed beaver behind my back, and it seemed that discharge planning was in progress for Lance to go to a rehab facility (somewhat of a misnomer for his condition). Understandably, neither Lance nor his wife was very cheerful.

I finally said that from our visit the day before, he seemed to me to have a quirky sense of humor and I thought he would appreciate a stuffed beaver. He and his wife both grinned as I went on to say that I’d shown it to my husband the previous evening, but I could not repeat what my husband said when I asked if he wanted to see my stuffed beaver. Lance and his wife both laughed for quite some time. I left, feeling like I’d at least created a happy moment for this couple. Lance’s wife called me to thank me for that moment, saying it had been many months since they had shared a laugh such as they did, because of that stuffed beaver from the hospital’s gift shop.

Although through quality indices and metrics, we can validate the return on investment we can effect as navigators, imperative to the ever dynamic development and evolution of our role is the ability to connect the dots of shared love, laughter, and tenderness, as we support and assist our patients and their caregivers, enabling them to create memories of joy (however fleeting) to take forward into their future, whatever that might hold for them.

Penny Daugherty is an oncology nurse navigator specializing in gynecologic oncology and multiple myeloma at the Northside Hospital Cancer Institute in Atlanta.

Metrics and benchmarks are a vital part of the value proposition behind navigation, but these vignettes illustrate how even the smallest gesture can make a big difference for our patients.


Forging an Emotional Connection With Our Patients

As nurse navigators, we are asked to provide many varied services for our patients, and most of us have stores of resources “at the ready.”

This particular summer day brought a whole new and unique dimension to my life as a navigator—and one I would eventually come to treasure. The first call came at 8:30 am from Dr. G, who told me he had a patient newly diagnosed with ovarian cancer (LM) who he wanted me to see, adding at the end of his request, “There may be a little more to her needs than meets the eye …” He laughed, which definitely made me suspicious.

I met with LM and her husband who told me they were trail riders from North Canada and had traveled to north Florida to meet up with one of their American clubs to ride with. On the way back home, LM began to emergently feel increasingly bloated and after originally being admitted to a small, rural hospital, ended up being transferred to our Northside Hospital Cancer Institute since we have a very well respected gynecologic oncology service.

Because the couple was from another country (with national health insurance that did not “translate” very well to our coverage), we needed to provide Northside Hospital Oncology financial assistance via our Disparities/Financial Navigator Jace Longnecker (a previous contributor to this column series).

The necessities of LM’s life as an inpatient seemed to be all taken care of expediently, as I sat down with LM and her husband and asked if they had any other needs I might be able to assist them with during their stay in our hospital. I was more than a little flabbergasted by their answer, “Do you think you could ‘navigate’ our horses out of your parking lot?”

Apparently, while we were all scurrying to make sure medical care was being appropriately and efficiently provided, the couple’s 2 (Morgan) horses had been ensconced in their trailer in our hot, asphalt parking lot—in the Atlanta summer. This was nothing I ever expected to be asked as an oncology nurse navigator.

I went back to my office wondering what to do with these horses, knowing that this represented an impending danger to their health, a daunting thought. Given that my husband and I have bred and shown Standard Poodles for many years, I was well aware of the need for proper ventilation for animals, which was not happening in an immobile horse trailer in our parking lot.

At my wit’s end, I called my husband for advice, and he reminded me of a fellow dog show exhibitor who lived in Aiken, South Carolina, a doable (2.5 hr) drive from our hospital so I crossed my fingers and called SR, who never hesitated a moment, offering to drive to Atlanta and rescue our parking lot—orphaned horses. I connected SR and LM, and a few short hours later, the horses were breezily on their way to a lovely, shaded pasture where they could relax and trot around happily.

Next, I assisted our patient to get a very speedy appointment with her oncology provider in Canada, shipped all of her records to the clinic, and also helped to coordinate her flight home postoperatively, because driving extended hours posed a threat of hypercoagulation.

Upon discharge several days later, her husband drove to Aiken, scooped up their 2 horses from the kind Samaritan and met his wife at home where she began her adjuvant care.  Several incidentals needed to be faxed and communicated between the 2 hospitals to facilitate LM’s care, and as her nurse navigator, I made sure the transition was smoothly executed. I had many conversations with the medical professionals in Canada, who, as tradition has borne out, always seemed to refer to us in America as “the states”. Having heard this designation for many years, I smiled.

A few months later, one of the Canadian pathologists called me to ask for a particular set of slides. She said she had just spoken to LM and her husband about their experience at our hospital and they’d related their encounter about their horses. It seemed this pathologist was also a horse lover and she was quite effusive in her praise of our American ingenuity to navigate those horses out of our parking lot and into a spacious, comfortable, and shady pasture in Aiken. I 

When we, as navigators, wake up each morning we never know what we will be asked to accomplish in the care of our patients, their families, and in this particular case, their very well-loved horses. This is the adventurous journey we’ve each chosen to be personal patient guides through the maze of care and treatments. I will always treasure my experience with LM, her husband, and their beloved horses.

I invite my fellow navigators to share their unique stories in this column. I truly cherish the ability to help my patients each day with any need they have. This encounter just added a little extra spice—and an extra smile to my world.

When we, as navigators, wake up each morning, we never know what we will be asked to accomplish in the care of our patients and their families.

PENNY DAUGHERTY, RN, MS, OCN, ONN-CG

Articles

The Day Planner

Forging an Emotional Connection With Our Patients

Can You Navigate Our Horses Out of the Parking Lot?