How nurses made a difference in the life of a dying teenager

'It takes a very special person to be a nurse,' patient's family says

When 19-year-old Steven Rodriguez was diagnosed with a rare, aggressive cancer, the seventh-floor nurses of the University of California-San Francisco (UCSF) Benioff Children's Hospital went above and beyond to provide clinical care, clear communication, and robust emotional support to his family—epitomizing the idea of patient-centered care, Andrew Schwartz writes in UCSF Science of Caring.

Getting a rare diagnosis

When Steven, a college student in Southern California, began complaining of headaches in early 2013, physicians initially thought the pain could be the result of stress, poor diet, or wisdom teeth that had not yet been removed. 

But none of those seemed to be the cause, and despite a series of increasingly worsening episodes—intense pain and —Steven was sent home from the ED without answers time and time again.

One night, after Steven woke up screaming, his mother Alex took him back to the ED—and this time, insisted he receive a CT scan.

The scan found a seven-centimeter tumor in Steven's brain and surgeons operated right away to remove it. But during the seven-hour surgery, the doctors discovered the tumor was an AT/RT (atypical teratoid/rhabdoid tumor), an extremely aggressive form of cancer that is rarely found in adults.

"I couldn't comprehend what we were told," says Alex. "[At UCSF they told us] either do the treatment or die...Steven just sat there dazed."

On June 17, Steven entered Benioff Children's Hospital to begin receiving an aggressive combination of chemotherapy and radiation treatment. It marked the start of four rough months in the hospital—but Steven's family says he was supported by a team of caregivers.

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Alex shares meaningful anecdotes about the "7 Long" nurses who she says helped her family through the painful journey of Steven's treatment, and eventual death.

Mindful care

The first nurse the Rodriguez family interacted with was Francis, who entered the room to conduct overnight observation and check Steven's vital signs. Alex says, "My experience in a hospital had been giving birth, and you don't get any rest; they wake you up, turn on lights," but "[Francis's] first and only thought was that Steven needed to rest" and "not once did he wake up Steven or make a noise."

 

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Making a bond

Kenny Truong, Steven's bedside nurse, says he bonded with Steven over their mutual love of acting. "When you share similar interests, you can open up more and in the acting world you learn to let your guard down because you have to...I got to know him that way," he says.

Alex recalls Kenny as "kind and compassionate," noting that he would hold her and cry with her through especially difficult times. "We had many favorite nurses; they are the ones that developed the deep connections with him," she says.

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She says one nurse, Derek, would call to check in on Steven when he was out of town, and others came to check on and sit with Steven when he was moved from the seventh floor to the PICU. "Every single [nurse] was there working tireless hours," says Alex," adding, "We often wondered if they got to go to the bathroom."

Responding to a 'Momma Bear'

During an especially difficult time of care transition, Alex remembers calling a meeting with the various members of Steven's care team. She says, "I finally insisted we had to get [members of all the departments caring for Alex] together—pain, oncology, gastritis, GI team, neurology." While the nurses "weren't thrilled" with Alex's ask, "they respected my need to understand what was going to happen to my child."

In addition, she says the nurses "made it a point to be sure I was in the loop and understood exactly what was transpiring and the orders for the day."

Interim Nurse Manager Suzanne Ezrre says Alex "was a fierce momma bear." "We're used to fierce momma bears," she says, and "a lot of us can really attach to and understand parents who are very protective and demanding of the level of care we want to give." She adds, "[Alex] made an impact on me, and I knew I wanted to take care of this kid and this mom."

Ezrre also notes that any time the treatment plan was altered the care team provided the family with "extremely detailed communication" about the plan going forward.

Steven at the center

Several nurses on Steven's care team recount "idiosyncrasies" with how Steven's body processed pain medication and blood transfusions, and Alex notes that at one point Truong decided to make adjustments to Steven's treatment to make him more comfortable.

Alex says there were times when she would wonder why Steven was receiving a particular treatment and Truong would explain the reasons to her. "Having someone who knew who we were—and who knew what worked and what didn't—was extraordinarily helpful," she says.

"There's no set way to treat pain: you have to find the right cocktail," says Truong, adding, "and it took us time to find the right formula [to manage it]."

Truong also ensured Steven maintained the best quality of life possible, once allowing him to splurge on a feast of chicken tenders and French fries when he was especially sick. Although Steven later vomited up the meal, as he had been doing with everything he ingested during that period, Truong recounts, "He look[ed] up and [said]: 'It was so worth it.'" He says, "It was so nice to see him smile."

The nurses also worked together to create a "tailored approach" to treating Steven's skin, which had been damaged from radiation.

Caring for the whole family

Eileen McCree was Steven's child life specialist, and her primary role was to help Steven and his family—especially his younger brother—understand and work through the diagnosis.

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She oversaw a project to create a "keepsake" for Steven's family for after he was gone.

When Steven was moved to the ICU, the nurses of 7 Long came downstairs to visit "so he could see them—they could be that continuity—and he could see that familiar face" even though ICU nurses were in charge of the clinical work at this stage.

Truong says during this period it was important for him to take care of Steven's family. "I wanted to be there for them one on one," he says, "You realize how much you mean to them and how much they mean to you."

During Steven's last days, he was moved back to 7 Long—his "second home." He died on Oct. 17, 2013, surrounded by an "incredible support network."

Alex concludes, "It takes a very special person to be a nurse, to know what needs to be said and what's needed." It's incredible "how they are able to maintain their sanity, after seeing all the hell they see and exude that strength" (Schwartz, UCSF Science of Caring, March 2015).

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Nurse leaders at Sharp Memorial Hospital share the impact the Care Partners Program—a program where caregivers could opt in to and become a formal part of care team—had on the patient experience.

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