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What Do Older Adults with Frailty and Their Caregivers Want from Advance Care Planning Discussions?

A Descriptive Qualitative Study

Published Date: 19.12.2025

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Theme: Carer health and wellbeing

Sub-theme: Prevention and early intervention

Qualitative descriptive study Advance Care Planning Older adults Canada

Verification Statement

This publication / resource is hosted on a publicly available external link. If the full text is not publicly accessible, summary points are included and a contact method for the author(s) is provided, where available.

The summary information presented is based on content submitted by an author or other user
, along with publicly available information about the publication / resource added by the Carer Knowledge Exchange team.

All content is reviewed, edited and approved by the Carer Knowledge Exchange team, in line with our Submission Guidelines.


To report an issue or request a change, please complete our Feedback Form.

 

Theme: Carer health and wellbeing

Sub-theme: Prevention and early intervention

View Publication Qualitative descriptive study Advance Care Planning Older adults Canada

Verification Statement

This publication / resource is hosted on a publicly available external link. If the full text is not publicly accessible, summary points are included and a contact method for the author(s) is provided, where available.

The summary information presented is based on content submitted by an author or other user
, along with publicly available information about the publication / resource added by the Carer Knowledge Exchange team.

All content is reviewed, edited and approved by the Carer Knowledge Exchange team, in line with our Submission Guidelines.


To report an issue or request a change, please complete our Feedback Form.

 

What Do Older Adults with Frailty and Their Caregivers Want from Advance Care Planning Discussions?

A Descriptive Qualitative Study

Published Date: 19.12.2025

  • Author/ Authors

    Robin Urquhart, Cynthia Kendell, Jessica Vickery, Elias Hirsch

  • Suggested citation (APA 7th edition)

    Urquhart, R., Kendell, C., Vickery, J., & Hirsch, E. (2025). What Do Older Adults with Frailty and Their Caregivers Want from Advance Care Planning Discussions? A Descriptive Qualitative Study. Healthcare, 14(1), 2. https://doi.org/10.3390/healthcare14010002

Long Summary

The study explored what older adults with frailty and their caregivers want from advance care planning (ACP) discussions. Through qualitative interviews with frail individuals and family caregivers in Canada, participants identified three key desired outcomes from ACP: maximizing comfort and quality of life, increasing confidence in decision-making to reassure families as health declines, and maintaining autonomy so individuals can live and die according to their values. The authors suggest ACP initiatives and evaluation measures should align more closely with these patient- and family-centred priorities.

    Key Messages for Carers


  • Advance care planning is not only about paperwork but also about understanding and honouring what matters most to the person you care for. This research shows that ACP can help carers feel more confident when difficult decisions arise, reduce uncertainty during health crises, and ensure care aligns with the person’s values, comfort and dignity. Early, open conversations can ease emotional burden and support shared decision-making. Carers play a vital role in these discussions, helping ensure loved ones retain autonomy and experience care that reflects their wishes.

  • Key Messages for Policy Makers


  • Advance care planning (ACP) must be designed and evaluated around what frail older adults and their families value most and not just documentation or completion rates. This study shows that ACP is meaningful when it prioritises comfort and quality of life, strengthens confidence in future decision-making and preserves individual autonomy. Policymakers should embed these outcomes into health system guidelines, funding models and evaluation frameworks. Supporting flexible, values-based ACP conversations can improve end-of-life care, reduce distress for families and ensure services remain genuinely person-centred.

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The Carer Knowledge Exchange is led by Carers NSW and proudly funded by the NSW Government. It was established as a partnership between Carers NSW and the Institute for Public Policy and Governance (IPPG) at the University of Technology Sydney from 2021-2024. We acknowledge Aboriginal and Torres Strait Islander peoples as the First Australians and Traditional Custodians of the lands where we live, learn and work.