"The challenge is the complexity" - A qualitative study about decision-making in advanced lung cancer treatment

Silje Orstad; Øystein Fløtten; Tesfaye Madebo; Pål Gulbrandsen; Roger Strand; Frode Lindemark; Sverre Fluge; Rune Hørgård Tilseth; Margrethe Aase Schaufel

doi:10.1016/j.lungcan.2023.107312

"The challenge is the complexity" - A qualitative study about decision-making in advanced lung cancer treatment

Lung Cancer. 2023 Sep:183:107312. doi: 10.1016/j.lungcan.2023.107312. Epub 2023 Jul 20.

Authors

Silje Orstad¹, Øystein Fløtten², Tesfaye Madebo³, Pål Gulbrandsen⁴, Roger Strand⁵, Frode Lindemark¹, Sverre Fluge⁶, Rune Hørgård Tilseth⁷, Margrethe Aase Schaufel⁸

Affiliations

¹ Department of Thoracic Medicine, Haukeland University Hospital, Bergen, Norway.
² Department of Thoracic Medicine, Haukeland University Hospital, Bergen, Norway; Department of Clinical Science, University of Bergen, Norway.
³ Department of Pulmonary Medicine, Stavanger University Hospital, Stavanger, Norway.
⁴ Institute of Clinical Medicine, Faculty of Medicine, University of Oslo, Oslo, Norway; Health Services Research Unit HØKH, Akershus University Hospital, Norway.
⁵ Centre for the Study of the Sciences and the Humanities, University of Bergen, Norway.
⁶ Department of Pulmonary Medicine, Haugesund Hospital, Haugesund, Norway.
⁷ Department of Medicine, Førde Hospital, Førde, Norway.
⁸ Department of Thoracic Medicine, Haukeland University Hospital, Bergen, Norway; Department of Clinical Science, University of Bergen, Norway; Bergen Centre for Ethics and Priority Setting, University of Bergen, Norway. Electronic address: Margrethe.Schaufel@uib.no.

PMID: 37481888
DOI: 10.1016/j.lungcan.2023.107312

Abstract

Introduction: The value of shared decision-making and decision aids (DA) has been well documented yet remain difficult to integrate into clinical practice. We wanted to investigate needs and challenges regarding decision-making about advanced lung cancer treatment after first-line therapy, focusing on DA applicability.

Methods: Qualitative data from separate, semi-structured focus groups with patients/relatives and healthcare professionals were analysed using systematic text condensation. 12 patients with incurable lung cancer, seven relatives, 12 nurses and 18 doctors were recruited from four different hospitals in Norway.

Results: The participants described the following needs and challenges affecting treatment decisions: 1) Continuity of clinician-patient-relationships as a basic framework for decision-making; 2) barriers to information exchange; 3) negotiation of autonomy; and 4) assessment of uncertainty and how to deal with it. Some clinicians feared DA would steal valuable time and disrupt consultations, arguing that such tools could not incorporate the complexity and uncertainty of decision-making. Patients and relatives reported a need for more information and the possibility both to decline or continue burdensome therapy. Participants welcomed interventions supporting information exchange, like communicative techniques and organizational changes ensuring continuity and more time for dialogue. Doctors called for tools decreasing uncertainty about treatment tolerance and futile therapy.

Conclusion: Our study suggests it is difficult to develop an applicable DA for advanced lung cancer after first-line therapy that meets the composite requirements of stakeholders. Comprehensive decision support interventions are needed to address organizational structures, communication training including scientific and existential uncertainty, and assessment of frailty and treatment toxicity.

Keywords: Advanced lung cancer; Decision aids; Physician-patient relations; Qualitative research; Shared decision-making.

Publication types

Research Support, Non-U.S. Gov't

MeSH terms

Decision Making
Decision Making, Shared
Humans
Lung Neoplasms* / therapy
Patient Participation
Qualitative Research