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.
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.
Authors: Marina R Ekkel; Marja F I A Depla; Els M L Verschuur; Ruth B Veenhuizen; Cees M P M Hertogh; Bregje D Onwuteaka-Philipsen Journal: BMC Palliat Care Date: 2021-01-12 Impact factor: 3.234
Authors: Marina R Ekkel; Marja F I A Depla; Els M L Verschuur; Ruth B Veenhuizen; Cees M P M Hertogh; Bregje D Onwuteaka-Philipsen Journal: BMC Med Ethics Date: 2022-10-10 Impact factor: 2.834
Authors: Kate Flemming; Victoria Turner; Samantha Bolsher; Bill Hulme; Elizabeth McHugh; Ian Watt Journal: Palliat Med Date: 2020-04-14 Impact factor: 4.762