Embodied decisions unfolding over time - a meta-ethnography systematic review of people with cancer’s reasons for delaying or declining end-of-life care

Sep 21, 2026

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Barriers to accessing hospice and palliative care are well established, yet less is understood about why people nearing end of life decline a referral even when services are offered. This meta-ethnography synthesises qualitative studies of cancer patients in the last months who refused end-of-life care referrals. Search across six databases (2007–2021) identified nine eligible studies and generated an overarching model of embodied, time-sensitive, context-driven decision-making shaped by communication, prognostic uncertainty, and evolving patient and family circumstances.

LanguageEnglish

CategoryResearch & Report

FormatPDF

Pages17

Reading Time43 min

AccessFree to download

Abstract

Background

Methods

Results

Conclusions

Introduction

Hospice vs palliative care

Methods

Search strategy and appraisal

Results

Overarching model and key influences

Discussion

Implications for access and timing

Young et al. BMC Palliative Care (2024) 23:45 [https://doi.org/10.1186/s12904-024-01342-5](https://doi.org/10.1186/s12904-024-01342-5) BMC Palliative Care RESEARCH Open Access Embodied decisions unfolding over time: a meta-ethnography systematic review of people with cancer’s reasons for delaying or declining end-of-life care Jessica Young1*, Antonia Lyons2, Richard Egan3 and Kevin Dew 1 Abstract Background Barriers to accessing hospice and palliative care have been well studied. An important yet less researched area is why people approaching the end-of-life decline a referral when they are offered services. This review focused on synthesising literature on patients in the last months of life due to a cancer diagnosis who have declined a referral to end-of-life care. Methods Six academic databases were systematically searched for qualitative literature published between 2007 and 2021. Two researchers independently reviewed and critically appraised the studies. Using meta-ethnographic methods of translation and synthesis, we set out to identify and develop a new overarching model of the reasons patients decline end-of-life care and the factors contributing to this decision. Results The search yielded 2060 articles, and nine articles were identified that met the review inclusion criteria. The included studies can be reconceptualised with the key concept of ‘embodied decisions unfolding over time’. It emphasises the iterative, dynamic, situational, contextual and relational nature of decisions about end-of-life care that are grounded in people’s physical experiences. The primary influences on how that decision unfolded for patients were (1) the communication they received about end-of-life care; (2) uncertainty around their prognosis, and (3) the evolving situations in which the patient and family found themselves. Our review identified contextual, person and medical factors that helped to shape the decision-making process. Conclusions Decisions about when (and for some, whether at all) to accept end-of-life care are made in a complex system with preferences shifting over time, in relation to the embodied experience of life-limiting cancer. Time is central to patients’ end-of-life care decision-making, in particular estimating how much time one has left and patients’embodied knowing about when the right time for end-of-life care is. The multiple and intersecting domains of health that inform decision-making, namely physical, mental, social, and existential/spiritual as well as emotions/affect need *Correspondence: Jessica Young [Jessica.young@vuw.ac. nz](Jessica.young@vuw.ac. nz) Full list of author information is available at the end of the article © The Author(s) 2024. Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article’s Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article’s Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit [http://creativecommons.org/licenses/by/4.0/](http://creativecommons.org/licenses/by/4.0/. The Creative Commons Public Domain Dedication waiver ()[. The Creative Commons Public Domain Dedication waiver (](http://creativecommons.org/licenses/by/4.0/. The Creative Commons Public Domain Dedication waiver ()[http://creativecom](http://creativecom)[mons.org/publicdomain/zero/1.0/](mons.org/publicdomain/zero/1.0/)) applies to the data made availa

FAQs

What question does this meta-ethnography address?

It synthesises qualitative literature on patients with cancer in the last months who declined a referral to end-of-life care, focusing on their reasons for delaying or declining.

How was the evidence collected and synthesised?

Six academic databases were searched for qualitative studies published between 2007 and 2021. Two researchers reviewed and appraised the studies, then used meta-ethnographic translation and synthesis to develop an overarching model.

What are the main influences on patients’ decisions to decline end-of-life care?

The review highlights communication about end-of-life care, uncertainty around prognosis, and evolving situations for the patient and family, all grounded in physical experiences over time.

Sep 21, 2026

Uploaded by Anda