title: Advance care discussions with young people affected by life-limiting neuromuscular diseases: A systematic literature review and narrative synthesis.
abstract: 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.
authors.affiliation: Addenbrooke's Hospital, Box 165, Cambridge CB2 0QQ, UK. Electronic address: andrew.hiscock@nhs.net.
authors.forename: Andy
authors.initials: A
authors.lastname: Hiscock
authors.affiliation: School of Clinical Medicine, University of Cambridge Medical School Library, Addenbrooke's Hospital, Box 111, Cambridge, CB2 0SP, UK.
authors.forename: Isla
authors.initials: I
authors.lastname: Kuhn
authors.affiliation: Department of Public Health and Primary Care, Primary Care Unit, Palliative Care and General Practice, University of Cambridge, Cambridge, UK.
authors.forename: Stephen
authors.initials: S
authors.lastname: Barclay
mesh_terms: D000293:Adolescent; D000328:Adult; D032722:Advance Care Planning; D005195:Family Relations / Q000523:psychology*; D006801:Humans; D009468:Neuromuscular Diseases / Q000523:psychology*; D057240:Patient Preference / Q000523:psychology*; D011369:Professional-Patient Relations; D013727:Terminal Care / Q000523:psychology*; D055815:Young Adult
keywords: Advance care plans; Death; End of life care; Neuromuscular diseases; Palliative care