Background
Shared decision making (SDM) is increasingly recognized as a cornerstone of patient-centered healthcare, particularly in complex and acute hospital settings where treatment decisions can significantly influence outcomes and quality of life. Treatment escalation planning (TEP) is a proactive approach where patients and clinicians collaboratively determine contingency plans for acute clinical deterioration. This is especially relevant for older adults who often present with multiple comorbidities and varying degrees of frailty. Despite the growing emphasis on SDM, patients’ roles in these discussions remain debated, with little qualitative insight into their perspectives, particularly in the UK context.
Study Design
The study “Shared decision making with older people on treatment escalation planning for acute deterioration in the emergency medical setting: a UK-based qualitative study of patient perspectives (STREAMS-P)” employed a qualitative methodology to explore the views of older adults regarding SDM in TEP. Conducted in an Inner London borough, researchers recruited a demographically diverse cohort of individuals aged 63 to 101 years, encompassing a spectrum of frailty levels and ethnic backgrounds. Exclusion criteria included the absence of decisional capacity for TEP, language barriers (non-English speakers), and patients primarily dealing with cancer or severe single organ failure. Semi-structured interviews were performed between March and December 2023, audiorecorded, and subsequently analyzed using reflexive thematic analysis to identify recurrent themes.
Key Findings
Twenty-seven interviews involving 32 participants revealed nuanced patient perspectives about TEP and SDM, yielding four major thematic insights:
1. Focusing on a Natural Life Lived Well
Participants conceptualized health trajectories through a lens of acceptance about life and death, prioritizing a quality of life consistent with their values and experiences. Many expressed a desire to live naturally without undue prolongation of dying, reflecting an intrinsic understanding of the limits of medical intervention.
2. Making Sense of an Unfamiliar Medical Narrative
There was widespread recognition that detailed planning for potential acute medical interventions was unfamiliar territory. Patients often perceived medical escalation plans as complex and somewhat alien, indicating gaps in medical literacy regarding possible interventions and their implications.
3. My Body, My Decision
A strong emphasis emerged on personal autonomy, with participants asserting their right to retain final decisional authority over their healthcare. This theme underscored a desire for empowerment and control rather than passive acceptance of medical recommendations.
4. Expert, Imperfect Doctors in an Essential, Imperfect System
Participants acknowledged the expertise of clinicians while simultaneously appreciating the constraints and imperfections inherent in the UK healthcare system. This led to a pragmatic acceptance of limitations in decision-making processes and the practical challenges in delivering ideal shared decision making.
Collectively, these themes highlight a patient population that does not immediately recognize the relevance or practicalities of formalized TEP discussions but holds a strong determination to preserve personal autonomy in health decisions.
Interpretation and Implications
The STREAMS-P study elucidates the complexity of implementing shared decision making in treatment escalation planning among older adults. Patients’ limited familiarity with medical escalation narratives signals a critical need for enhanced public education to bridge knowledge gaps about intensive interventions’ possibilities and limitations. Furthermore, clinicians should reflect on communication strategies, adopting approaches that demystify medical procedures and better align with patients’ values and comprehension levels. On a policy level, establishing clear frameworks that define participant roles and expectations in TEP discussions can foster more meaningful and effective engagement.
Importantly, the study situates patient autonomy as a central ethic that must be balanced with clinical judgment and system realities. Recognizing the health system’s imperfections encourages development of pragmatic, flexible models of shared decision making that respect patient values while addressing resource and operational constraints.
Study Strengths and Limitations
Strengths of this study include purposive stratified sampling capturing a wide age, frailty, and ethnic diversity, providing rich qualitative data representative of diverse older adults in a high-income urban setting. The reflexive thematic analysis allowed for depth in identifying meaningful themes.
Limitations include the exclusion of patients lacking decisional capacity or non-English speakers, which restricts generalizability to more vulnerable or non-English-speaking populations. Additionally, the focus on an Inner London borough may limit extrapolation to rural or other UK regions with different healthcare infrastructure or cultural dynamics.
Conclusion
This pioneering qualitative inquiry underscores the necessity to recalibrate shared decision making for treatment escalation planning in older adults by fostering patient education, enhancing clinician communication, and refining policy frameworks. It advocates for patients’ empowerment in acute care decisions while acknowledging the practical challenges within the healthcare system. Future research should explore interventions to improve patient understanding and engagement, as well as investigate perspectives from underrepresented groups to promote equity in SDM.
Funding
This research was supported by HCA International and the National Institute for Health and Care Research (NIHR) Imperial Biomedical Research Centre.
References
Warner BE, Wells M, Vindrola C, Brett SJ. Shared decision making with older people on treatment escalation planning for acute deterioration in the emergency medical setting: a UK-based qualitative study of patient perspectives (STREAMS-P). Lancet Healthy Longev. 2025 Mar;6(3):100689. doi: 10.1016/j.lanhl.2025.100689. Epub 2025 Mar 6. Erratum in: Lancet Healthy Longev. 2025 Apr;6(4):100712. doi: 10.1016/j.lanhl.2025.100712. PMID: 40058387.