Patient and public perspectives on the availability of their health and advance care planning information to support care at the end of life: a mixed-methods questionnaire study

Objective To explore patient and public views and experiences of health professional access to patient health records and advance care planning information to support care at the end of life.

Design A cross-sectional national online survey of patients and the public using a convergent-parallel approach.

Setting The survey was distributed across the UK by Compassion in Dying and promoted via newsletters and social media channels of the Professional Records Standards Body and NHS England’s digital workstream network. These partners were purposively selected for their active involvement in end-of-life care, including hospices, clinicians and related charities.

Participants A total of 1728 participants from 103 UK counties responded, including people with a terminal condition (n=33), with long-term condition (n=442), who provide or have provided care to a person with a long-term or terminal illness (n=229) and who identified as healthy and interested in planning for the future (n=1024).

Measures Both quantitative data (multiple-choice responses and numerical ratings) and qualitative data (open-ended comments) asking about experiences and views of access to their health and advance care planning information to support their care at the end of life.

Results Confidence that recorded care preferences would be accessed when needed was low for carers (median=2, IQR 1–4) and moderate for patients (median=3, IQR 1–4). Four themes derived from free-text responses included (1) experience of sharing health information; (2) preparation, communication and understanding; (3) concerns, unknowns and assurance seeking; and (4) preserving dignity and respect: understanding individual contexts.

Conclusions Respondents acknowledged the opportunity for digital systems to enable access to health and advance care planning information but expressed doubts that professionals would retrieve it when needed, citing past failures. Confidence in record accuracy could be strengthened by patient and carer access. Future research should examine whether such access improves alignment of care with patients’ wishes.