Systemic Strategies to Prevent Nonbeneficial Treatments Near the End of Life

There exists a default toward high-intensity treatments near the end of life in the United States, including for people living with advanced dementia (PLWD). Clinical momentum, a cascade of increasingly intensive treatments facilitated by systemic factors, contributes to this default. The intensity of treatments provided to PLWD near the end of life is lower in Great Britain. Using Great Britain as a counterexample to the United States, this study examines factors that may contribute to lower-intensity treatment patterns.

To understand factors within the British health care system that shape treatment intensity for PLWD.

This qualitative study used semistructured, in-depth interviews with clinicians at 1 National Health Service (NHS) trust in South London and with caregivers of PLWD in England and Wales. Interviews were conducted between February 2021 and February 2023. Perspectives on factors influencing treatment escalation decisions in PLWD were elicited. Data were analyzed using thematic analysis.

The primary outcome was the individual-, institutional-, and system-level factors that affect treatment escalation decisions among PLWD in Great Britain.

A total of 13 clinicians (11 [84.6%] women; 3 [23.1%] Asian or Asian British, 1 [7.7%] Black, Black British, Caribbean, or African, and 9 [69.2%] White; median [range] years in practice, 26 [8-35]) and 14 caregivers (8 [57.1%] women; 3 [21.4%] Asian or Asian British, 2 [14.3%] Black, Black British, Caribbean, or African, and 8 [57.1%] White; median [IQR] age among 13 who provided data, 32 [28-45] years) participated. Caregiver respondents discussed individual-level factors preventing escalation to high-intensity treatments (transparent communication and knowledge of dementia trajectory). Clinician and caregiver respondents described institutional-level factors (eg, protocols, resources, and practices) and system-level factors (eg, national policies, laws, and cultural norms) shaping treatment escalation decision-making.

In this qualitative study of clinicians and caregivers in Great Britain, respondents reported individual-, institutional-, and system-level factors that they perceived to both independently and collectively prevent potentially nonbeneficial treatment escalation, including to life-sustaining treatments, and facilitate deescalation in PLWD. These factors created structured opportunities for clinicians and caregivers to deliberate on decisions to escalate treatment intensity. The convergence of these factors generated a clinical practice pattern minimizing escalation toward high-intensity treatments in PLWD, referred to here as clinical deceleration, in contrast to the default clinical momentum observed in the United States.