The views of adults with neurodegenerative diseases on end-of-life care: a metasynthesis

ABSTRACT

Objective: Improving end-of-life care for people with neurodegenerative diseases is seen as a clinical priority. In order to do this, it is important to take into account the views expressed by people with these conditions on their experiences of this care. The purpose of this review was to provide a thematic synthesis of the views of adults with neurodegenerative diseases on end-of-life care.

Methods: After a systematic search, 13 articles were included and thematic synthesis was used to collate and interpret findings.

Results: Four analytical themes were identified; (1) Importance of autonomy and control; (2) Informed decision-making and the role of healthcare professionals; (3) Contextual factors in decision-making; (4) The pitfalls of care.

Conclusion: Participants’ views were framed by the context of their lives and experience of their illness and these shaped their engagement with end-of-life care. Given the varying disease trajectories, care needs to be individualised and needs-based, implementing palliative care in a timely way to prevent crises and loss of autonomy.

KEYWORDS:

• Neurodegenerative disease
• end-of-life care
• palliative care
• qualitative
• metasynthesis

Acknowledgments

We thank Sarah Heard for her help in preparing the manuscript.

Disclosure of interest

The authors report no conflicts of interest.