US-UK Differences in Clinical Norms Surrounding Life-Sustaining Treatments for Persons Living with Dementia

Key Message : In this international qualitative study, US clinicians described defaulting to ICU-level life-sustaining treatments for critically ill persons living with advanced dementia, while UK clinicians described not offering these treatments. These differing clinical norms, driven by institutional and societal factors, suggest modifiable targets for multi-level interventions to reduce non-beneficial life-sustaining interventions.

Abstract:

Background: There is growing evidence that persons living with advanced dementia (PLWD) do not benefit from life-sustaining treatments (LSTs) near the end of life [1,2]. Nevertheless, PLWDs in the United States (US) receive life-sustaining treatments at substantially higher rates than in the United Kingdom (UK) [3,4]. Clinical decision-making norms – shared expectations about appropriate treatment – are shaped by institutional and societal factors [5]. Differences in these factors between the US and UK may explain divergent LST use for PLWD.

Objective: To compare US and UK clinicians’ perceptions of clinical decision-making norms surrounding LSTs for PLWD.

Methods: We interviewed wards-based clinicians at three US and two UK academic medical centers (total n=51; 6-13 per site). We employed purposive sampling to capture perspectives across disciplines, specialties, and experience levels. Interviews focused on serious illness decision-making for PLWD. We analyzed transcripts using thematic analysis to identify differences in clinical norms and their underlying institutional and societal influences.

Results: We identified three differences in clinical decision-making norms. First, default patient trajectories diverged: US clinicians described defaulting to ICU admission for critically ill PLWD; UK clinicians described defaulting to community or ward-level care. Second, thresholds for perceiving treatment as non-beneficial differed: US clinicians identified ethical tensions around prolonged ICU-level LSTs (mechanical ventilation, vasopressors); UK clinicians expressed similar concerns regarding ward-level treatments (fluids, antibiotics). Third, decision-making approaches diverged: US clinicians pursued shared decision-making with families after initiating LSTs; UK clinicians often communicated that LSTs would not be offered. These differing norms appeared to be driven by institutional and societal factors within each country.

Conclusions: Higher rates of LSTs for PLWD in the US, in comparison to the UK, reflect differing clinical decision-making norms. Institutional and societal factors that drive clinical decision-making norms may be modifiable targets for multi-level interventions to reduce non-beneficial LSTs for PLWD.

References: 1. Teno JM, Gozalo P, Khandelwal N, et al. Association of Increasing Use of Mechanical Ventilation Among Nursing Home Residents With Advanced Dementia and Intensive Care Unit Beds. JAMA Intern Med. 2016;176(12):1809-1816. doi:10.1001/jamainternmed.2016.5964
2. Davies N, Barrado-Martín Y, Vickerstaff V, et al. Enteral tube feeding for people with severe dementia - Davies, N - 2021 | Cochrane Library. Accessed October 14, 2025. https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD013503.pub2/full
3. Jivraj NK, Hill AD, Shieh MS, et al. Use of Mechanical Ventilation Across 3 Countries. JAMA Intern Med. 2023;183(8):824-831. doi:10.1001/jamainternmed.2023.2371
4. Bassford CR, Krucien N, Ryan M, et al. U.K. Intensivists’ Preferences for Patient Admission to ICU: Evidence From a Choice Experiment. Crit Care Med. 2019;47(11):1522. doi:10.1097/CCM.0000000000003903
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