Capturing the last phase of life in surveys

Authors

Clément Meier

PDF
Publication

FORS Guide Nº 25

DOI
https://doi.org/10.24449/FG-2025-00025
How to cite

Clément Meier (2025). Capturing the last phase of life in surveys. FORS Guides, 25, Version 1.0 1-26. https://doi.org/10.24449/FG-2025-00025

Keywords

aging, end-of-life, death, mortality, data collection

Abstract

The last phase of life — a crucial yet often underexplored stage — poses challenges for survey research. Common issues such as health shocks, cognitive decline, and mortality, lead to attrition and incomplete data. This FORS Guide highlights strategies from existing surveys to capture this sensitive period, offers recommendations to enhance data collection, and outlines key considerations for researchers analyzing such data.

Watch the FORS Guide 25 video summary: https://rec.unil.ch/videos/fors-guide-25-capturing-the-last-phase-of-life-in-surveys/

Recommendations

  • Recommendation 1 – Anticipate challenges in longitudinal research and plan accordingly
    Understanding the last phase of life often requires following participants over several survey waves. Be aware that the time required to collect and analyze usable data may be longer than initially anticipated due to the complexity of capturing transitions over time, high attrition rates, and mortality.
  • Recommendation 2 – Address attrition proactively to ensure data quality
    Implement strategies to minimize attrition, such as offering flexible participation options, maintaining regular contact with participants or their proxies, and simplifying survey processes.
  • Recommendation 3 – Design sensitive and inclusive recruitment strategies
    Develop culturally sensitive approaches to recruitment and build trust with communities, caregivers, and healthcare institutions. Ensure that recruitment methods are inclusive, reaching diverse populations and those with limited mobility, cognitive impairments, or caregiving responsibilities.
  • Recommendation 4 – Adapt data collection methods to end-of-life trajectories
    Tailor data collection methods to the unique characteristics of end-of-life trajectories, whether they involve sudden death, terminal illness, organ failure, or prolonged frailty. Mixed-methods approaches, combining quantitative surveys with qualitative methods such as semi-structured interviews and narrative storytelling can provide a more comprehensive understanding of diverse experiences. Use proxy interviews or linked data sources such as administrative data (e.g., insurance claims, hospital discharge records) or clinical health records (e.g., electronic patient files) to fill gaps left by participants who are unable to respond.
  • Recommendation 5 – Mitigate ethical and emotional challenges in end-of-life research
    Ensure that all aspects of the research respect participants’ dignity, autonomy, and well-being. Use dynamic consent models to allow participants to modify their involvement over time. Train researchers to navigate sensitive topics with compassion and professionalism. Provide emotional support for both participants and research staff, acknowledging the emotional toll of end-of-life studies.
  • Recommendation 6 – Maximize the utility of existing data sources
    Where possible, leverage data from existing longitudinal surveys, such as SHARE, to complement new data collection efforts. Integrate diverse data sources, such as health records and administrative data, to enhance the robustness of findings. Ensure that data linkage complies with data protection regulations and ethical guidelines.

    • Copyright

    © the author 2025. This work is licensed under a Creative Commons Attribution 4.0 International License (CC BY 4.0)

    Publication year

    2025

    Making uncommon experiences visible in the survey life cycle