Abstract
The “best interests” test or standard governs decision-making for patients who lack the capacity or competence to decide for themselves at the relevant time. The test is familiar in many legal and clinical settings, although it remains an open question what the test does and should encompass, how decisions on this basis are and should be made, and who is and should be involved in making these decisions.
In this presentation, I will share some results from the Wellcome Trust-funded BABEL project (Balancing Best Interests in Healthcare, Ethics and Law). Running from 2018 to 2024, the project explores best interests decision-making in healthcare for and with people across the life course. The project comprises literature reviews and empirical research with a range of people involved in, or subject to, best interests decision-making.
I will focus on interviews and focus groups with healthcare professionals and patients, which explore how best interests decisions are currently made. From our thematic analysis, which is ongoing, I will share five emerging themes. The first theme captures the “orchestra” of best interests decision-making, in which various people play different roles and have different responsibilities. The second theme explores communication as not only a source of disagreement, but also as a means of securing consensus. The third theme reflects how values and emotions drive the determination of best interests. The fourth theme captures diverse but related understandings of “best interests”, which emerges as both a pluralistic and a polysemous concept. The final theme considers when and how best interests decision-making fails, with reference to legal, procedural, and systemic barriers.