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. 2025 Jun 25:1-22.
doi: 10.3310/XCGE3294. Online ahead of print.

Community and hospital-based healthcare professionals perceptions of digital advance care planning for palliative and end-of-life care: a latent class analysis

Jacqueline Birtwistle  1 , Gabriella Williamson  1 , Samuel D Relton  1 , Andy Bradshaw  2 , Katherine E Sleeman  2 , Maureen Twiddy  3 , Pablo Millares-Martin  4 , Suzanne Richards  1 , Matthew J Allsop  1 ; OPTIMAL CARE project
Affiliations

Community and hospital-based healthcare professionals perceptions of digital advance care planning for palliative and end-of-life care: a latent class analysis

Jacqueline Birtwistle et al. Health Soc Care Deliv Res. .

Abstract

Introduction: Numerous digital approaches are being explored internationally to support the elicitation, documentation and sharing of advance care planning information. In England, Electronic Palliative Care Coordination Systems have been developed for this purpose, often as a template stored as part of an electronic clinical record system. Despite Electronic Palliative Care Coordination Systems being central to the end-of-life care policy, there has been a lack of exploration of the perspectives of healthcare professionals who use Electronic Palliative Care Coordination Systems and are critical to their implementation.

Objective: This study addresses this gap aiming to examine community and hospital-based healthcare professionals' perceptions of Electronic Palliative Care Coordination Systems on advance care planning and the delivery of palliative care.

Design and methods: A cross-sectional online survey.

Setting and participants: The target sample comprised health professionals from the main professional groups supporting patients with chronic progressive illnesses in West Yorkshire and London. The survey included items adapted from the Normalisation MeAsure Development questionnaire implementation measure. Survey responses were analysed using descriptive statistics and latent class analysis. Free-text responses relating to alternative approaches to advance care planning documentation were analysed using a directed content analysis approach.

Results: Five hundred and sixty-nine health professionals responded to the survey from West Yorkshire (n = 189; 33.2%) and London (n = 380; 66.8%). The largest proportion of respondents came from general practice teams (n = 254; 44.6%). There were prominent differences in responses, with respondents in London more likely to report being familiar with Electronic Palliative Care Coordination Systems. However, West Yorkshire respondents rated Electronic Palliative Care Coordination Systems more highly in terms of being a legitimate part of their role. Across professional groups, respondents from both hospice and care home teams were more likely to view Electronic Palliative Care Coordination Systems as being worthwhile. Commonly reported barriers to the use of Electronic Palliative Care Coordination Systems included not having access to electronic devices, lack of training and lack of knowledge relating to advance care plans.

Limitations: There was a dominance of responses from participants based on primary care practices, which may reflect general practitioners being largely responsible for initiating an Electronic Palliative Care Coordination Systems record in one region of the survey (West Yorkshire). This survey is reliant on self-reported responses to items and may have also included respondents more engaged with or interested in Electronic Palliative Care Coordination Systems, representing a skewed positive perspective of the systems and how they are being used in practice.

Discussion: Variation exists in the way in which Electronic Palliative Care Coordination Systems are perceived and used across both geographical regions surveyed and the professional groups involved in palliative care delivery. There continue to be challenges experienced by those using Electronic Palliative Care Coordination Systems, including not having access to electronic devices, lack of training and lack of knowledge relating to advance care plans.

Future work: Future research to identify the preferences of health professionals and patients as potential users of Electronic Palliative Care Coordination Systems could guide the development of ergonomic systems that account for the multiple challenges (i.e. physical, cognitive and organisational aspects) involved in their implementation.

Funding: This article presents independent research funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme as award number NIHR129171.

Keywords: ADVANCE CARE PLANNING; ELECTRONIC HEALTH RECORD SYSTEMS; END-OF-LIFE CARE; HEALTH PERSONNEL; LATENT CLASS ANALYSIS; PALLIATIVE CARE.

Plain language summary

In England, a variety of electronic systems is used across health care to hold medical records. This includes recording people’s preferences for the care they would like to receive towards the end of life, such as preferred medical interventions, where they may wish to be cared for and where they would like to die. Recording and sharing this information are part of a process called advance care planning, which aims to provide people with medical care that is consistent with their values, goals and preferences during serious and chronic illnesses. While electronic systems are available for recording people’s preferences for care, low numbers of health professionals use the systems, with some regional variations. We conducted an online survey to understand how health professionals view these electronic systems. An online survey was sent to health professionals in West Yorkshire and London who work in hospital and community settings. Community settings included teams based in general practices, hospices, care homes and ambulance services. The survey was completed by 569 health professionals from West Yorkshire and London. Most responses were received from general practice teams (44.6%). The survey identified differences in the experiences of health professionals based in West Yorkshire and London. Health professionals in West Yorkshire felt more familiar with the electronic systems that were being used for recording patient preferences, and the systems were part of their daily work. This was not reported as much by health professionals in London. Across the different groups of health professionals, hospice and care home teams were more likely to view the electronic systems as worthwhile and valuable. However, all health professional groups reported challenges with using electronic systems. Future work is needed to ensure electronic systems are easy to access and perceived positively by different health professional groups across the whole of England.

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References

    1. Knaul FM, Farmer PE, Krakauer EL, De Lima L, Bhadelia A, Jiang Kwete X, et al.; Lancet Commission on Palliative Care and Pain Relief Study Group. Alleviating the access abyss in palliative care and pain relief-an imperative of universal health coverage: the Lancet Commission report. Lancet 2018;391:1391–454.
    1. National Health Service. The NHS Long Term Plan. 2019. URL: www.longtermplan.nhs.uk/wp-content/uploads/2019/08/nhs-long-term-plan-ve... (accessed 12 May 2025).
    1. National Palliative and End of Life Care Partnership. Ambitions for Palliative and End of Life Care: A National Framework for Local Action 2021–2026. 2021. URL: www.england.nhs.uk/wp-content/uploads/2022/02/ambitions-for-palliative-a... (accessed 11 May 2025).
    1. Sudore RL, Lum HD, You JJ, Hanson LC, Meier DE, Pantilat SZ, et al. Defining advance care planning for adults: a consensus definition from a multidisciplinary Delphi panel. J Pain Symptom Manage 2017;53:821–32.e1.
    1. Morrison RS, Meier DE, Arnold RM. What’s wrong with advance care planning? JAMA 2021;326:1575–6.

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