Files and links (1)
tulloch-et-al-2026-patients-perceptions-of-autonomy-in-palliative-care-two-patient-interview-exemplars238.43 kB
Published VersionCC BY-NC V4.0, Open Access
Journal article
Patients’ perceptions of autonomy in palliative care: Two patient interview exemplars
Palliative Care and Social Practice, Vol.20, pp.1-13
2026
PMID: 41568326
Abstract
Background:
Although palliative care embraces person-centred principles and autonomy to meet patients’ holistic needs, autonomy is not automatically assured and few studies cover patients’ lived experiences. Consequently, current thinking about dying and palliative care practices would benefit from an in-depth understanding of patient experiences. Such research provides an opportunity to challenge assumptions about patient preferences for the amount and type of care and decision-making involvement, especially for the way patient preferences may vary between individuals and change through the palliative care process.
Objectives:
This project aimed to investigate patient conceptualisations and preferences for autonomy while receiving palliative care.
Design:
This qualitative phenomenological study explored patients’ experiences of autonomy in home-based palliative care in Queensland, Australia.
Methods:
Face-to-face semi-structured interviews were audio-recorded with two participants to learn their perspectives regarding autonomy in palliative care. Transcripts were analyzed using interpretative phenomenological analysis.
Results:
Four themes were identified: (a) my involvement in healthcare decisions, (b) change to my autonomy during illness progression, (c) self-assessing my abilities to exercise autonomy and (d) my coping mechanisms for loss of autonomy. Palliative care patients perceived and managed their autonomy amidst their illnesses, revealing a sense of loss of autonomy extending beyond healthcare into many daily activities. Participants wished to exercise autonomy in nuanced ways, varying in intensity across many aspects of their lives, underscoring the importance of recognising and respecting individuals’ wishes for autonomy.
Conclusion:
Partnering with individuals receiving palliative care provided authentic insight into their level and experience of autonomy. While many health practitioners aim to facilitate autonomy in patients receiving palliative care, flexibility is required to recognise variable patient needs. Such approaches will further ensure autonomy moves beyond a singular view of healthcare decision participation, to encompass changes to preferences during palliative care, while recognising how patients exercise autonomy via self-assessment and coping mechanisms.
Trial registration:
Not applicable.
Details
- Title
- Patients’ perceptions of autonomy in palliative care: Two patient interview exemplars
- Authors
- Kristen Tulloch (Corresponding Author) - University of the Sunshine Coast, Queensland, School of Health - PsychologyJulia Acordi Steffen - University of the Sunshine Coast, Queensland, School of HealthJohn P. Rosenberg - University of the Sunshine Coast, Queensland, School of Health - Nursing
- Publication details
- Palliative Care and Social Practice, Vol.20, pp.1-13
- Publisher
- Sage Publications Ltd.
- Date published
- 2026
- DOI
- 10.1177/26323524251409848
- ISSN
- 2632-3524
- PMID
- 41568326
- Copyright note
- © The Author(s) 2026. This article is distributed under the terms of the Creative Commons Attribution-NonCommercial 4.0 License (https://creativecommons.org/licenses/by-nc/4.0/) which permits non-commercial use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access pages (https://us.sagepub.com/en-us/nam/open-access-at-sage).
- Data Availability
- Data from this project are not available as this level of consent was not provided by participants. The interview topic guide is provided as a Supplemental Material.
- Organisation Unit
- Healthy Ageing Research Cluster; School of Health; School of Health - Nursing; School of Health - Psychology
- Language
- English
- Record Identifier
- 991206278702621
- Output Type
- Journal article
Metrics
1 Record Views
InCites Highlights
These are selected metrics from InCites Benchmarking & Analytics tool, related to this output
- Web Of Science research areas
- Health Care Sciences & Services
- Public, Environmental & Occupational Health
UN Sustainable Development Goals (SDGs)
This output has contributed to the advancement of the following goals:
Source: InCites