Rationing cancer treatment: a qualitative study of perceptions of legitimate limit-setting

Abstract

Background Governments are facing tough choices about whether to fund new, promising but highly expensive drugs within the public healthcare system. Decisions that some drugs are not sufficiently beneficial relative to their cost to merit public funding are often contentious. The importance of making decisions that stakeholders can understand and accept as legitimate is increasingly recognized and is commonly understood to be a crucial component for stakeholder support and successful implementation. Yet, little is known about clinicians’ perceptions of legitimate limit-setting. This study aimed to examine oncologists’ perceptions of the legitimacy of governmental decisions to deny patients access to new cancer drugs because effectiveness and cost-effectiveness of the drugs has not been demonstrated.

Methods Semi-structured in-depth interviews with 12 Norwegian oncologists were carried out. Data were interpreted with the use of theory driven thematic analysis. The analytical framework of Accountability for reasonableness aided data gathering and interpretation.

Results The participants endorsed the ideal of explicit criteria-based priority setting. Yet, when confronted with actual rationing decisions, they were far more equivocal. They advocated for increased access to drugs and were not always prepared to accept rationing of drugs they felt would benefit their patient. Distrust in the Norwegian centralised drug review process was found and different rationales were identified: i) Lack of engagement with the process, ii) Disagreement with the use of rationing criteria, iii) Lack of transparency and lack of dispute resolution procedures. Concerns about the wider implications of rationing decisions were reported. Most importantly, these related to negative impact on patient-doctor relationship of micro-level rationing and to inequities in drug availability resulting from privatisation of high-cost cancer treatment.

Conclusions Drawing on the analytical framework, we conclude that perceptions of legitimacy regarding rationing of high-cost drugs include procedural fairness. However, notions of substantive justice also seem to be important for accepting reasons given for decisions. Regulatory legitimacy may further warrant a more sophisticated theoretical account of second-order beliefs about the justifiability of rationing new technologies. These findings indicate a need for a broader concept of legitimacy than is commonly used in the literature on healthcare prioritisation.