Background: This qualitative study was conducted using interviews with providers and caretakers in Great Britian in attempts to identify influences that could reveal levers to prevent clinical momentum in patients living with advanced dementia.
Design and Participants: This was a qualitative study performed by conducting semi-structured, in-depth interviews with clinicians and caregivers involved in the care of patients living with advanced dementia in England and Wales between February 2021 and February 2023. 13 clinicians and 14 caregivers were interviewed, and thematic analysis was used to generate themes. The data was coded based on the themes addressing treatment escalation and decision making to identify convergences and divergences.
Results: This section will come directly from the abstract or body of the paper. You should provide context or explanation as needed for results or statistics that are presented. Only caregivers spoke of individual-level factors that influenced their attitudes, beliefs, and behaviors regarding treatment escalation. Clinicians emphasized institutional and systemic influences. Caregivers felt escalation or de-escalation was facilitated by transparent communication from clinicians. Knowledge regarding dementia trajectory also assisted caregivers in advocating for deescalation. Several institutional level factors also contributed a path of deescalation, including pre-ICU protocols, frailty practitioners, and more integrated dementia care. System level factors that were identified included empowered paramedics that were able to act on advanced care plans and engage in goals of care discussion, shared electronic medical records, treatment escalation plans, and legal and policy frameworks that supported a norm of lower intensity treatment in advanced dementia.
Commentary: This study was performed to evaluate practices in Great Britain that lead to less high-intensity life-sustaining care in patients living with advanced dementia, to serve as a counterexample to the United States. This study identified multiple processes that worked effectively to prevent a default tendency toward treatment escalation, especially when it stood to be nonbeneficial or goal discordant, a term coined by the authors as clinical deceleration. Many of the factors and mechanisms were dependent on the culture and policies of the study population. These included the presence of frailty practitioners (nurses or physiotherapists specializing in working with frail adults), empowering of paramedics to enact deescalation in the community by providing goals of care discussions and presenting alternatives to hospitalization, shared electronic medical records and escalation treatment plans, and laws and clinical practice guidelines supporting clinician-led best interest decision-making when patients lack decision-making capacity. However, there were many factors identified that could easily be performed in the United States that would assist with preventing clinical momentum toward high-intensity care. These included clear and transparent communication by the provider and educating caregivers on the natural trajectory of dementia, pre-ICU protocols that involved evaluation and discussions with the family before escalation of care, and providing more integrated dementia care, including more short-term hospital-level treatments at home or a care facility rather than in the hospital.
Bottom Line: Although there are several factors that contribute to the lower intensity of life sustaining therapies in patients with advance dementia in Great Britain, not all are related to their laws or culture. Many of the factors that lead to deescalation of care are easily replicated in the United States.
Source: Weiss Goitiandia S, Sun AZ, Rosenwohl-Mack A, et al. Systemic Strategies to Prevent Nonbeneficial Treatments Near the End of Life. JAMA Netw Open. 2025;8(7):e2519771. doi:10.1001/jamanetworkopen.2025.19771.
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