Does Having an Individualized End-of-Life Care Record Actually Make a Difference?

Abstract

Introduction: The National Institute for Health and Care Excellence (NICE) recommends an individualized approach to end-of-life care (EOLC), including an individualized record of care, which supports shared decision-making and timely rationalization of futile observations and medications. Aim: To assess the impact of the individualized record of care in supporting patients at the end of life at a UK tertiary cancer center. Method: In May 2024, we audited the case notes of 100 consecutive patients who received EOLC at our center. Data regarding clinical decision-making and rationalization were collected. Outcomes for those supported by an individualized record of care were compared to those who were not. Results: A total of 98 patient records were analyzed. 97.3% with an individualized care record had their observations rationalized compared to 75% without, and 74.3% versus 41.7% for medications, respectively (p < 0.01). Certain medications, e.g., prophylactic low molecular weight heparin (LMWH), were less likely to be rationalized. Evidence of discussion about rationalization of observations and medications was present in approximately half of the case notes and often occurred after the rationalization had taken place. Conclusion: The presence of an individualized end-of-life record of care improved rates of review and rationalization of observations and medications. Future qualitative work is needed to identify challenges regarding these conversations, including examining the role of shared decision-making on rationalization versus patients' refusal.