Study outlines need for measures that improve information and autonomy for cancer patients

A new study shows that patients can experience reduced co-determination and insufficient information about their cancer treatment, while doctors face pressure to give treatment they do not consider useful.

Shared decision-making is the norm in the patient's health care service but may be difficult to accomplish.

A new study in Norway has investigated what needs and challenges patients with advanced lung cancer, their relatives, nurses, and doctors experience when deciding on a treatment plan.

"Continuity in the patient-health care personnel relationship and familiarity with each other were emphasized as absolutely fundamental when trying to make the best possible decisions," says associate professor at the University of Bergen and senior author of the article, Margrethe Aase Schaufel.

Patients do not understand that they can refrain from treatment.

The study participants reported that it was difficult to communicate and understand complicated assessments of what further cancer treatment may entail in terms of benefits and harms.

"Although patients could be satisfied with the follow-up and treatment recommended by the doctor, information was also given about situations where they had not understood that they could refrain from life-prolonging treatment which resulted in a significantly reduced quality of life," Schaufel says.

Doctors feel pressured to give treatment that could be harmful.

Some patients experienced having to fight for more treatment than what the doctor thought was advisable. And doctors reported pressure to give treatment that could be useless and harmful.

"The doctors expressed a need for tools that provide more reliable knowledge about treatment tolerance and effect for the individual patient," says Schaufel.

'We need measures that can ensure enough time to dialog and communication'

The study concludes that it is difficult to develop a so-called decision aid for advanced lung cancer that will be able to solve the challenges and needs reported by stakeholders, especially when there is great uncertainty related to the effect of several lines of treatment in advanced disease.

"Measures are called for that can ensure continuity in the patient-health care professional relationship and enough time for dialog, communication training for clinicians to increase the patient autonomy, and better scoring tools for treatment tolerance," Schaufel concludes.

The findings are published in the journal Lung Cancer.