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

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.

Online public information about advance care planning: An evaluation of UK and international websites

“… 57 , 58 People will use the internet increasingly to search for and access such healthcare information for ACP; therefore, resources need to be relevant and accessible to a wide range of citizens. 11 , 59 Our use of academic researchers combined with members of the public helps indicate which elements may be most important to prioritise in developing materials that meet the needs of their potential users. Previous research has suggested that providers of online ACP information can do more to stress the importance of meaningful conversations, frame ACP as an iterative process and move away from a focus on documenting plans: something that our findings support.…”

“…Our search methodology was informed by a recently published catalogue of ACP and end-of-life care resources. 59 We evaluated whether websites likely to be found by patients and families met three types of criteria: ACP information reflecting international consensus definitions, website accessibility in line with governmental standards for public sector websites and emotional content given that ACP relates to sensitive topics around death and dying. This may reflect continued debate among experts in the field, 60 but can be confusing for members of the public.…”

“… 68 , 69 Two recent studies of the growing number of publicly available interactive online tools to support ACP found both quality of the content and readability varied substantially. 4 , 59 Surveys of how caregivers used digital technologies and online information during COVID-19 highlighted the importance of developing digital support services particularly for older people and marginalised groups along with credible information from professional and governmental organisations. 70 …”

Patient and public experience and views on digital systems for sharing records for health and care preferences at the end of life

“…Alongside digital platforms for information sharing by health professionals, online resources are increasingly being used to support advance care planning decisions and documentation, without direct input from a health professional (13). Patients often complete these independently or with an advocacy service (13).…”

“…Alongside digital platforms for information sharing by health professionals, online resources are increasingly being used to support advance care planning decisions and documentation, without direct input from a health professional (13). Patients often complete these independently or with an advocacy service (13). These resources typically require the download of the patient-completed form that must be taken to a health professional to be replicated or a copy made and uploaded to a digital health record(14, 15).…”