Perspectives of people with dementia and carers on advance care planning and end-of-life care: A systematic review and thematic synthesis of qualitative studies.

Abstract

Advance care planning aims to ensure that care received during serious and chronic illness is consistent with the person's values, preferences and goals. However, less than 40% of people with dementia undertake advance care planning internationally. This study aims to describe the perspectives of people with dementia and their carers on advance care planning and end-of-life care. Systematic review and thematic synthesis of qualitative studies. Electronic databases were searched from inception to July 2018. From 84 studies involving 389 people with dementia and 1864 carers, five themes were identified: avoiding dehumanising treatment and care (remaining connected, delaying institutionalisation, rejecting the burdens of futile treatment); confronting emotionally difficult conversations (signifying death, unpreparedness to face impending cognitive decline, locked into a pathway); navigating existential tensions (accepting inevitable incapacity and death, fear of being responsible for cause of death, alleviating decisional responsibility); defining personal autonomy (struggling with unknown preferences, depending on carer advocacy, justifying treatments for health deteriorations); and lacking confidence in healthcare settings (distrusting clinicians' mastery and knowledge, making uninformed choices, deprived of hospice access and support at end of life). People with dementia and their carers felt uncertain in making treatment decisions in the context of advance care planning and end-of-life care. Advance care planning strategies that attend to people's uncertainty in decision-making may help to empower people with dementia and carers and strengthen person-centred care in this context.