The Responsibility to Be Honest With Oncology Patients

Welcome to Onc Nurse On Call, the new podcast from Oncology Nursing News, hosted by editors-in-chief Patricia Jakel, MN, RN, AOCN, and Stephanie Desrosiers (formerly Jackson), DNP, MSN, RN, AOCNS, BMTCN, delivering maximum impact in minimum time.

This week, social worker Kelly Grosklags, LICSW, BCD, FAAGC, FT, founder of Conversations With Kelly, shared advice for dealing with difficult conversations and false hope in the care of patients with cancer.

The inspiration for her work, Grosklags said, comes from losing her mother when she was 11. While her mother, in her thirties at the time, suffered from heart disease, her young age caused clinicians to approach her care with an emphasis solely on lengthening her lifespan, rather than making the most of the reality her family was faced with.

“The whole goal was to keep her going, keep her going—and no one wanted to talk about the hard stuff,” Grosklags recalled.

On the contrary, Grosklags called to mind a patient whose care team, including herself, were upfront with her prognosis at the time of her diagnosis and throughout treatment. Faced with a more realistic approach, the patient was able to write letters to her children to read at future milestones that she’d miss—a step Grosklags called “life-changing” for the patients’ children.

This patient’s story, Grosklags said, was a “game-changer” for her practice.

“It didn’t make her die quicker,” said Grosklags. “That was always my fear: that people would ‘give up’ if I had these conversations [with patients].”

“Good Patient Syndrome” and the Bond Between Oncology Nurses and Patients

Grosklags shared that with the expansion of cancer treatments for most cancer types in recent years, some patients struggle to accept that there isn’t a treatment that will cure their disease.

Further, the span of treatment for patients with cancer can sometimes be many years. Oncology nurses and patients spend time together during patients’ most vulnerable moments, and sometimes that can result not only in closeness between clinicians and patients, but fear of disappointing one other.

“Oncology nurses are unique in that we see patients for a long time. We get to know their families. We see them through graduation, through weddings, progression of disease, recurrence,” said Grosklags. “We have a human heart connection with a lot of our patients, and that’s what makes those conversations so difficult.”

Some patients develop what Grosklags referred to as “good patient syndrome,” where they fear exposing their care team to the emotional burden of difficult conversations around death and try to shield them from these by acting as if they don’t need them.

“I have heard patients say, ‘I love nurse Jane so much. I don’t want to break down in front of her because that will make her sad,” said Grosklags.

Jakel echoed the sense of connection with patients, adding that patients brought gifts for her when she was expecting each of her children. “They’re living our lives with us also,” Jakel said.

Hope Does Not Need to Be False in Cancer Care

Jakel shared that as a nursing student, she was told not to give patients false hope, something that can be difficult to avoid in oncology.

“The first 20 years of my career, I was falsely reassuring patients left and right,” said Jakel. “I had to give them hope, and I wasn’t always honest.”

However, Grosklags advised that hope is cyclical and can occur at any stage of a patient’s care, even at the end of life. The goal of care may not always be cure; it may evolve to become other milestones, like seeing a child graduate high school.

“Part of our job as social workers, as physicians—as anybody working in oncology—is to help introduce patients to that evolution-of-hope cycle.”