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Published in: BMC Palliative Care 1/2022

Open Access 01-12-2022 | Care | Research

Towards cataloguing and characterising advance care planning and end-of-life care resources

Authors: Edric Aram Ramirez-Valdez, Clare Leong, Frances Wu, Sarah Ball, Giulia Maistrello, Graham Martin, Zoë Fritz

Published in: BMC Palliative Care | Issue 1/2022

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Abstract

Background

Resources for healthcare professionals, patients and those important to them relating to planning and coordinating treatment and care at the end of life are abundant, and can be difficult to navigate. However, they have not been systematically collated or catalogued in terms of their purpose, scope or intended audience.

Aim

To collate, categorise and characterise advance care planning and end-of-life treatment and care (EoLT + C) resources directed towards healthcare professionals, patients and their families.

Methods

Rapid review and thematic synthesis of resources available in the United Kingdom. Google searches and reviews of websites belonging to selected organisations that develop and publish materials relating to EoLT + C, and advance care planning were used. Materials were included if they were intended for those over 18 living in the UK and pertained to five domains of EoLT + C: identifying those approaching end of life; accessing EoLT + C services; conducting important conversations about EoLT + C and preferences; advance care planning, including recording of preferences and plans; and ensuring that plans and preferences are accessed and used by health and social care services.

Results

246 resources directed at healthcare professionals, patients and their families were identified, collated, catalogued and made internationally available for clinicians, researchers, patients and the public. 61 were classified as interactive, providing decision support in EoLT + C that went beyond simply providing information. Of these, there was notable content overlap among tools for identifying patients in their last year of life. There was variation in the development of tools across all domains of end-of-life care by geography and patient group. Few interactive resources integrated seamlessly with a digital interface or healthcare provider workflows. Incentives for the adoption of best-practice appeared rare.

Conclusions

We present a repeatable and scalable approach to the cataloguing and characterisation of palliative care resources. The identified resources will be of benefit not only to those in the UK but to those in other countries, developing or evaluating their own resources for aiding professionals and patients to plan and deliver excellent treatment and care at the end of life.
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Metadata
Title
Towards cataloguing and characterising advance care planning and end-of-life care resources
Authors
Edric Aram Ramirez-Valdez
Clare Leong
Frances Wu
Sarah Ball
Giulia Maistrello
Graham Martin
Zoë Fritz
Publication date
01-12-2022
Publisher
BioMed Central
Keyword
Care
Published in
BMC Palliative Care / Issue 1/2022
Electronic ISSN: 1472-684X
DOI
https://doi.org/10.1186/s12904-022-01102-3

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