Advance care discussions with young people affected by life-limiting neuromuscular diseases: A systematic literature review and narrative synthesis

Title

Advance care discussions with young people affected by life-limiting neuromuscular diseases: A systematic literature review and narrative synthesis

Creator

Hiscock A; Kuhn I; Barclay S

Publisher

Neuromuscular Disorders

Date

2017

Subject

terminal care; Neuromuscular Diseases; Terminal Care

Description

End of life care policy in the UK advocates open discussions between health professionals and patients as the end of life approaches. Despite well documented understanding of the progression of life-limiting neuromuscular diseases, the majority of patients affected by such conditions die without a formal end of life plan in place. We performed a systematic review to investigate conversations regarding end of life care between healthcare professionals and younger adult patients with life-limiting neuromuscular diseases. The search strategy included terms that focused on death and dying along with other factors that could impact length of life. The review found a very limited body of literature regarding end of life care conversations between young people affected by neuromuscular diseases and health professionals. The views and preferences of patients themselves have not been investigated. There is a shared reluctance of patients, family carers and healthcare professionals to initiate end of life care discussions. There are many factors that need to be investigated further in order to develop a consensus that would allow healthcare professionals to engage patients in end of life care conversations allowing them to face the end of their lives with appropriate plans in place.

Rights

Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).

Citation List Month

April 2018 List

Pages

115-119

Issue

2

Volume

27

Citation

Hiscock A; Kuhn I; Barclay S, “Advance care discussions with young people affected by life-limiting neuromuscular diseases: A systematic literature review and narrative synthesis,” Pediatric Palliative Care Library, accessed May 27, 2018, http://pedpalascnetlibrary.omeka.net/items/show/15098.

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