Last updated: May 2020

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RCSLT Guidance Info
The RCSLT develops guidance to promote good clinical and professional practice in line with HCPC standards. Please read our statement on guidance to understand how it is developed and how to use it.
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Introduction

Here you will find a summary of evidence and research relating to end-of-life care and the role of speech and language therapy.

Visit the RCSLT Research Centre for information and resources to support your evidence-based practice, ways to enhance your continuing professional development (CPD), information about clinical academic careers, resources to help you get involved in research, and much more.

For more end-of-life care information, see also:

Please contact us if you have any suggestions or feedback on these pages.

Finding evidence

Access research articles through our RCSLT Journals Collection, and more resources to support using evidence-based practice in our Research Centre

Cochrane Reviews

Cochrane Reviews are systematic reviews of primary research in human health care and health policy, internationally recognised as the highest standard in evidence-based health care. Search the Cochrane Database of Systematic Reviews.

Good P, Richard R, Syrmis W, Jenkins-Marsh S, Stephens, J. Medically assisted hydration for adult palliative care patients. Cochrane Database of Systematic Reviews [online] 2014)

Research papers, articles and books

Alsolamy S. Islamic views on artificial nutrition and hydration in terminally ill patients. Bioethics 2012; 28(2), 96–99.

Barriguinha C, Mourão MT, Martins JC. The speech therapist in palliative care: perspective of patients, families and/or informal caregivers and professional team involved. Revista Portuguesa de Terapia da Fala 2015; 4,15–20.

Bogaardt H, Veerbeek L, Kelly K, Van der Heide A, Van Zuylen L, Speyer R. Swallowing problems at the end of the palliative phase: incidence and severity in 164 unsedated patients. Dysphagia 2014; 30(2), 145–151.

Boundy EO, Dastjerdi R, Spiegelman D, Fawzi WW, Missmer SA, Lieberman E, Kajeepeta S, Wall S, Chan GJ. Kangaroo mother care and neonatal outcomes: a meta-analysis. Pediatrics [online] 2016; 137(1), e20152238

Bowen P, Mansfield A, King H. Using subcutaneous fluids in end-of-life care. Nursing Times [online] 2014

Chahda L, Mathisen BA, Carey LB. The role of speech-language pathologists in adult palliative care. International Journal of Speech-Language Pathology [online] 2017; 19(1), 58–68

Clark D, Armstrong M, Allan A, Graham F, Carnon A, Isles C. Imminence of death among hospital inpatients: prevalent cohort study. Palliative Medicine [online] 2014; 28(6), 474–479

Eckman S, Roe J. Speech and language therapists in palliative care: what do we have to offer? International Journal of Palliative Nursing, 2005; 11(4), 179–181.

Fraser L, Miller M, Hain R, Norman P, Aldridge J, McKinney P, Parslow R. Rising national prevalence of life-limiting conditions in children in England – White Rose Research Online. Whiterose.ac.uk. [online] 2012

Gardiner C, Harrison M, Ryan T, Jones, A. Provision of palliative and end-of-life care in stroke units: a qualitative study. Palliative Medicine 2013; 27(9), 855–860.

Good, P, Richard R, Syrmis W, Jenkins-Marsh S, Stephens J. Medically assisted hydration for adult palliative care patients. Cochrane Database of Systematic Reviews [online] 2014

Griffith R. Withdrawing or withholding life-sustaining clinically-assisted nutrition and hydration. British Journal of Community Nursing 2017; 22(12), 615–617.

Hawksley R, Ludlow F, Buttimer H, Bloch S. Communication disorders in palliative care: investigating the views, attitudes and beliefs of speech and language therapists. International Journal of Palliative Nursing, 2017; 23(11), 543–551.

Hughes JC, Jolley D, Jordan A, Sampson EL. Palliative care in dementia: issues and evidence. Advances in Psychiatric Treatment, [online] 2007; 13(4), 251–260

Humel P, Cronin J. Home care of the high risk infant. Advances in Neonatal Care 2004; 4(6), pp.354–364.

Jones S, Howard L, Thornicroft G. (). ‘Diagnostic overshadowing’: worse physical health care for people with mental illness. Acta Psychiatrica Scandinavica [online] 2008; 118(3), 169–171

Kambarami RA. Kangaroo Care Method (Mother-Baby Skin to Skin Care): a guide for health workers. Harare: Uz, Dept. Of Paediatrics And Child Health, 1996.

Kelly K, Cumming S, Corry A, Gilsenan K, Tamone C, Vella K, Bogaardt H. The role of speech-language pathologists in palliative care: where are we now? A review of the literature. Progress in Palliative Care 2016; 24(6), 315–323.

Kenner C, Mcgrath JM. National Association of Neonatal Nurses. Developmental Care of Newborns & Infants: a guide for health professionals. Glenview, Il: National Association Of Neonatal Nurses, 2010.

Krikheli L, Mathisen BA, Carey LB. Speech–language pathology in paediatric palliative care: A scoping review of role and practice. International Journal of Speech-Language Pathology, 2017; 20(5), 541–553.

Lambert H. The allied health care professionalʼs role in assisting medical decision making at the end of life. Topics in Language Disorders [online] 2012; 32(2),119–136

Levy A, Dominguez-Gasson L, Brown E, Frederick C. Managing dysphagia in the adult approaching end of life. ASHA Leader 2004; 9(13),1.

Luckett T, Reid KLP. Speech and Language Therapy in Palliative Care [online]. Oup.com, 2015

Mason J, Scior K. (). ‘Diagnostic overshadowing’ amongst clinicians working with people with intellectual disabilities in the UK. Journal of Applied Research in Intellectual Disabilities [online] 2004; 17(2), 85–90

Mathisen B, Yates P, Crofts P. Palliative care curriculum for speech-language pathology students. International Journal of Language & Communication Disorders 2011; 46(3), 273–285.

Mckenzie K. Feeding Decisions at the End-of-Life: Law, Ethics and Emotions [online] 2018

Moloney J, Walshe M. Managing and supporting quality‐of‐life issues in dysphagia: a survey of clinical practice patterns and perspectives in the UK, Ireland and South Africa. International Journal of Language & Communication Disorders 2018; 54(1), 41–49.

Murphy J. Communication strategies of people with ALS and their partners. Amyotrophic Lateral Sclerosis and Other Motor Neuron Disorders 2004a; 5(2),121–126.

Murphy J. ‘I prefer contact this close’: perceptions of AAC by people with motor neurone disease and their communication partners. Augmentative and Alternative Communication 2004b; 20(4), 259–271.

Murray SA, Kendall M, Boyd K, Sheikh A. Illness trajectories and palliative care. BMJ 2005; 330(7498),1007–1011.

Nancarrow SA, Booth A, Ariss S, Smith T, Enderby P, Roots A. Ten principles of good interdisciplinary team work. Human Resources for Health 2013; 11(1).

Nationalvoices.org.uk. A Narrative for Person-Centred Coordinated Care. National Voices [online], 2013

Newman K. Speech and language therapy techniques in end-of-life care. End of Life Journal 2009; 3(1), 8–14.

O’Reilly AC, Walshe M. Perspectives on the role of the speech and language therapist in palliative care: an international survey. Palliative Medicine 2015; 29(8), 756–761.

Parravicini E. Neonatal palliative care. Current Opinion in Pediatrics 2017; 29(2), 135–140.

Pascoe A, Breen LJ, Cocks N. What is needed to prepare speech pathologists to work in adult palliative care? International Journal of Language & Communication Disorders 2018; 53(3), 542–549.

Pollens RD. Integrating speech-language pathology services in palliative end-of-life care. Topics in Language Disorders 2018; 32(2),137–148.

Public Health England. End of Life Care Profiles: February 2018 update. [online]. GOV.UK, 2018

Robinson L, Dickinson C, Bamford C, Clark A, Hughes J, Exley C. A qualitative study: professionals’ experiences of advance care planning in dementia and palliative care, ‘a good idea in theory but ….’ Palliative Medicine 2012; 27(5), 401–408.

Roe J, Leslie P. Beginning of the end? Ending the therapeutic relationship in palliative care. International Journal of Speech-Language Pathology [online] 2010

Salt N, Robertson SJ. A hidden client group? Communication impairment in hospice patients. International Journal of Language & Communication Disorders [online] 1998; 33(S1), 96–101

Saunders C, Baines M. Living with Dying: the Management of Terminal Disease. Oxford: Oxford University Press, 1989.

Sinuff T, Dodek P, You JJ, Barwich D, Tayler C, Downar J, Hartwick M, Frank C, Stelfox HT, Heyland DK. Improving end-of-life communication and decision-making: the development of a conceptual framework and quality indicators. Journal of Pain and Symptom Management 2015; 49(6), 070–1080.

Soileau K, Elster N. The hospice patient’s right to oral care. Journal of Palliative Care 2018; 33(2), 65–69.

Sue Ryder Care. New Research Reveals the Biggest Concerns People Have When a Loved One is Dying [online]. Sue Ryder, 2018

Taylor H. Legal and ethical issues in end of life care: implications for primary health care. Primary Health Care (2015; 25(5), 34–41.
Toner MA, Shadden BB. End of life. Topics in Language Disorders 2012; 32(2), 111–118.

Tuffrey-Wijne I, Hogg J, Curfs L. End-of-life and palliative care for people with intellectual disabilities who have cancer or other life-limiting illness: a review of the literature and available resources. Journal of Applied Research in Intellectual Disabilities, 2007; 20(4), 331–344.

Research priorities

The RCSLT, in collaboration with the National Institute of Health Research (NIHR), is working on a project to determine the top priorities for new research in speech and language therapy. Read about our research priorities.

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