Communication and Autonomy Are Key in Patient Quality of Life

Oncology nurses and others should pay close attention to their patients’ quality-of-life concerns, but what that means will vary from patient to patient, according a speaker at the Oncology Nursing Society (ONS) 42nd Annual Congress, held May 4–7 in Denver.

“Quality of Life has been described many ways,” said Barbara Biedrzycki, PhD, CRNP, AOCNP, of the Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins in Baltimore. “It is a subjective value of life goals and satisfaction, a state of well-being, the impact of health on daily life and a subjective measure of happiness.”

Biedrzycki was accepting the ONS Trish Greene Memorial Quality of Life Lectureship award. She spoke on how decision-making can importantly impact patients’ quality of life.

“Decision-making for cancer clinical trial participation, standard of care treatment, and advanced directives may be an underestimated element of quality of life,” she said. “Discussing decision-making and quality of life will enable oncology nurses to have more confidence in providing meaningful interventions.”

Often treated as though it were a single, readily-measured variable, quality of life is actually measured using different tools and means different things to different people, she explained.

“Quality of life has a myriad of components that can be impacted by oncology nursing interventions,” Biedrzycki said. “Each person we care for has a unique meaning for quality of life.”

For example, at least 13 different quality-of-life measuring instruments have been used in the published research literature on patients with multiple myeloma, she noted. But frequently, subcategories can be categorized under a few key considerations: distress, changes in body image (“different body”), coping, and the contributions of other people, including healthcare professionals.

Communication between healthcare providers and patients can have important impacts on patient quality of life, Biedrzycki emphasized. Communication is frequently “thwarted” because of limited clinician time and patients frequently don’t convey chronic issues that can impact quality of life, because such discussions have failed to yield practical advice or solutions in the past, she said.

Instead, the focus of conversations tends to be about the patient’s disease: treatment options and side effects, instead of patient goals or their unique perspectives on quality of life, she said.

“Fatigue, decreased mobility, pain-these are the pronounced symptoms-and not having quality family time,” she noted. Patients report that big problems in communication include not receiving adequate information about their diagnoses and prognoses, and an inability to contact their providers in a timely way.

Quality of life is not a one-time conversation. Symptoms and functioning, and how these influence quality of life, changes significantly through disease trajectories, “even when healthcare report remains stable,” Biedrzycki said. Not surprisingly, quality worsens with disease progression.

“Researchers conclude that quality-of-life results should impact treatment decisions and guidelines, but there is little impact on published treatment guidelines,” she noted.

That means it falls largely to oncology nurses to pursue these discussions and to help connect patients to information, referrals, and resources that can address their quality-of-life concerns.

Clinicians are sometimes dismayed when a patient with intervention options does not prioritize treatment, but respecting patient autonomy is key when it comes to quality of life. Whether clinicians take a shared decision-making approach or motivational interviewing through targeted questioning and listening, their responsibility is to ask questions and convey information so that patients’ decisions are informed ones.

“We are sometimes mistaken when we assume that a patient’s goals are the same as the team’s,” she cautioned, likening patient engagement on values, culture, and language used, to interlocking gears and cogs.