Oncology nurses develop close relationships with their patients partly because they spend so much time with them and partly because they care for them when they are vulnerable. Increasingly, nurses are taking a lead role in routine screening and management of patients’ symptoms throughout the trajectory of care. Routine patient distress screening is recognized as an American College of Surgeons standard, and the National Comprehensive Cancer Network (NCCN) distress thermometer is one tool to help practitioners evaluate causes of suffering in patients with cancer. ONS member Alison Weber, RN, BSN, symptom management RN at Billings Clinic Cancer Center in Montana, says that routine screening for distress is an important starting point in efforts to address physical, psychosocial, emotional, and spiritual symptoms in patients in her clinic. “We decided on a modified version of the NCCN distress thermometer to identify patients in need.”
ONS member Carrie Bilicki, MSN, RN, ACNS-BC, OCN®, clinical nurse specialist for breast services in the Froedtert and Medical College of Wisconsin Center for Diagnostic Imaging at Westbrook Health Center in Waukesha, says she finds the distress thermometer useful for a variety of reasons.
“When meeting with a woman with newly diagnosed breast cancer, I ask her to self-report by filling out the tool,” she explains. “Patients are often embarrassed to discuss symptoms, unable to label their emotions, unaware of programs or resources available within the community or hospital, or unwilling to bother care team members with concerns. Knowing that patients tend to underreport feelings of distress, I discuss and give permission to share so that we can address life events that are happening despite a recent cancer diagnosis.”
Building a Symptom Management Team
Interdisciplinary collaboration is essential in providing comprehensive symptom management. Weber says that once the distress tool was implemented in her institution’s practice, they developed a program to address patient concerns.
“An interdisciplinary symptom management team was assembled and comprised of a symptom management nurse coordinator, oncology nurse practitioner, physician assistant, social worker, chaplain, pharmacist, dietitian, physical therapist, and pain specialist,” she explains.
Initially, the nurse coordinator contacts patients whose distress score is 6 or greater on a 0–10 scale, Weber says. The team also accepts referrals from providers and nurse navigators and self-referrals from patients.
“The nurse resolves problems according to telephone treatment protocol for some patients, whereas other patients may have multiple problems and require more assistance. Those patients are scheduled and seen in the symptom management clinic,” Weber says.
During her master’s program in 2010, Bilicki evaluated the importance of distress screening through a literature review and a study of oncology nurse navigators’ values, attitudes, and beliefs around screening. The success of using a protocol for nurse navigators to implement, address, and evaluate interventions around distress screening in a large healthcare system where she was previously employed started with engagement of high-level stakeholders.
“Because distress screening is a known accreditation standard, that alone may be a motivator to ensure a routine standard,” Bilicki says.
“We engaged staff and built champions for screening implementation,” she explains. “Multiple avenues of education were needed, including discussion around why it is considered the sixth vital sign and targeted training about screening to build skills and confidence. We also established interprofessional teams from leadership to frontline staff to continue to engage staff. These groups discussed and brainstormed the logistics for screening, clinical workflow, and referral pathways. Finally, ongoing evaluation and continued education is needed to maintain success of standard screening and interventions.”
Breaking Down Barriers
Weber’s team recognized early on that one barrier to overcome was vocabulary. “The term ‘palliative care’ was misunderstood by providers and patients and seemed to be associated commonly with end-of-life care,” she explains. “Although end-of-life discussions and care may certainly be a part of the management for some patients, distress and symptoms that occur across the cancer trajectory are also an important focus of attention in palliative care. Dialogue with providers and using the terminology of symptom management rather than palliative care were critical pieces in moving the team concept forward.”
“Another barrier was consistent distress screening. Patients’ perception of distress varies and may not always be cancer related. For example, a patient may have a distress score of 10 because they just bought a new pickup truck and didn’t get a good price,” Weber says.
On the other hand, Bilicki denies facing many barriers when implementing her program. She attributes her success to the fact that the NCCN distress thermometer is a core tool “to ensure we meet our patients’ needs and make certain they feel a sense of control over their diagnosis. Distress is often caused by uncertainty, and living with uncertainty is particularly prevalent in patients with cancer.”
However, she says that she does recognize that healthcare professionals may be inadequately trained to understand distress scores. “It can be challenging for nurses to interpret patients’ rating of their distress in a clinically meaningful way without the knowledge of what those scores mean. Training, time, education, discomfort discussing sexual or emotional issues, and/or organizational support can also be barriers to implementing distress screening.”
Outcomes of Distress Screening
Weber explains that “the outcomes of the symptom management team and clinic are far reaching, with the potential to positively affect individual patients and families. Patients report high satisfaction with the symptom management clinic, and data reveal an improvement in patient symptoms.”
Although the data speak for itself, Weber says that patient success stories are even more motivating. “While numbers are often used to track success, personal stories that are life-changing are also important in clearly articulating the success of this program.”
Bilicki acknowledges that nurses often address psychosocial concerns with patients and offer support. However, she adds that those interventions are not easy to document, and without ways to measure reductions in patients’ distress, any nursing interventions provided will not be captured.
“The distress thermometer allows not only the documentation of addressing a patient’s psychological state, but also the selection of appropriate interventions specific to patient-reported stressors. Nurses’ ability to address patients’ needs, offer interventions, and make appropriate referrals will guarantee that patients do not suffer in silence.”
You Tell Us! Do you use the distress thermometer in your practice? What other tools do you use to assess symptoms?