Quality of life (QOL) is a complicated construct and has been defined many ways. Barbara Anne Biedrzycki, PhD, CRNP, AOCNP®, of the Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins, presented the following view: “Quality of life is achieved when our hopes are matched and fulfilled by our experiences.” She encouraged participants to have a holistic perspective of QOL but to keep in mind that QOL is very individualized—its definition and meaning are different to each individual, and each person finds some factors to be more important than others.
Each year, the Oncology Nursing Society (ONS) selects a nurse leader to address QOL in cancer care. Biedrzycki presented this year’s Trish Greene Memorial QOL Lecture during a session at the 42nd Annual Congress in Denver, CO.
To illustrate the magnitude of the topic, Biedrzycki highlighted that in multiple myeloma alone has 13 QOL tools validated in 29 studies. One such tool, the Functional Assessment of Cancer Therapy–Multiple Myeloma, demonstrates the complexity of QOL. It includes 27 items in four categories, all aspects of QOL (e.g., physical, social/family, emotional, and functional well‐being; pain; weakness; trouble concentrating; infection; worry; discouragement; difficulty/future planning; new symptom worry; bone pain; fatigue; weight gain).
With so many facets of QOL, how can nurses provide interventions and help patients make decisions that meet their complex and individual needs? Biedrzycki encouraged nurses to start by making sure they have the conversation—discussing decision making and QOL so that they have more confidence to provide meaningful interventions. “Could we simply ask, ‘How are you?’ and not settle for, ‘Fine’?” she wondered. “We need to delve deeper and show we care.”
Asking patients is essential, she said, because patients’ and providers’ intentions are not always congruent. Biedrzycki cautioned, “Don’t assume the patient’s goals are the same as the team’s.” Healthcare professionals make decisions based on treatment guidelines; although they have variable consideration for QOL, they focus most on protocol and cost-effectiveness. Patients, on the other hand, place utmost importance on QOL and base their decisions on personal values and anecdotal experience. In other words, the healthcare team wants to follow the standard of care, but patients may want to follow their heart, perhaps deciding that QOL is more important than quantity.
Biedrzycki shared poignant case studies to illustrate, including a story about a homeless patient who was gladly admitted to hospice despite the healthcare team’s attempt to treat him, simply because hospice offered him respite from his fear of dying alone. She also described a case when the healthcare team was puzzled by a woman who declined enrollment in a clinical trial when others were devastated that they did not qualify.
Biedrzycki offered some decision-making models to help nurses understand the process and guide patients to their personal best decisions. One of them, the GOFER model, asks the decision-maker to consider: Goals, Options, Facts, Effects, and Review. Again, Biedrzycki encouraged nurses to apply the model from a patient’s point of view, not the healthcare team’s.
“A perfect decision is rare,” she said. But nurses must communicate with patients about the patient’s personal values and goals if they are to help a patient make the best decisions possible to achieve a personal perception of QOL.