A patient’s perspective on care decisions: a qualitative interview study

BACKGROUND AND OBJECTIVES: Discussing treatment wishes and limitations during medical consultations aims to enable patients to define goals and preferences for future care. Patients and physicians, however, face multiple barriers, resulting in postponing or avoiding the conversation. The aim of this study was to explore an internal medicine outpatient clinic population’s perception on (discussing) treatment wishes and limitations. METHODS: Semi-structured interviews were conducted in two rounds with 44 internal medicine outpatient clinic patients at the University Medical Centre Utrecht, a tertiary care teaching medical centre in the Netherlands. Interviews were transcribed verbatim and thematically analysed with a phenomenological approach and inductive, data-driven coding. RESULTS: Four themes were identified, two (1–2) represent a deep conviction, two (3–4) are practically oriented: (1) patients associate treatment wishes and limitations with the end-of-life, making it sensitive and currently irrelevant, (2) patients assume this process leads to fixed choices, whilst their wishes might be situation dependent, (3) treatment wishes and limitations are about balancing whether a treatment ‘is worth it’, in which several subthemes carry weight, (4) the physician is assigned a key role. CONCLUSION AND PRACTICE IMPLICATIONS: The themes provide starting points for future interventions. It should be emphasized that care decisions are a continuous, dynamic process, relevant at any time in any circumstance and the physician should be aware of his/her key role. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s12913-023-10342-9.