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Introduction

Continuing professional development (CPD) is a requirement for all speech and language therapists. Find out more.

This page provides information and resources to help you to continually improve your skills and expand your knowledge in end-of-life-care.

See the following Learning pages for further information and resources:

Related pages:

Please note: the resources on this page are provided for informational purposes only. No endorsement is expressed or implied unless otherwise stated, and while we make every effort to ensure this page is up-to-date and relevant, we cannot take responsibility for pages maintained by external providers.

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

Knowledge and skills

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; 04, 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, L.B. 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] 201

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), pp.251–260

Hummel P, Cronin J. Home care of the high-risk infant. Advances in Neonatal Care, 2004; 4(6), 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), pp.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), pp.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 2012; 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 [online]. International Journal of Speech-Language Pathology 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), 1070–1080.

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

The Brain Tumour Charity. Losing Myself. The Brain Tumour Charity [online], (2013)

Together for Short Lives. Key Information About Children Who May Need Palliative Care [online], 2019

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.

Volkmer A. Dealing with Capacity and Other Legal Issues with Adults with Acquired Neurological Conditions, 2016

Resources

Generic end-of-life care resources

Breakingbadnews.org. Breaking Bad News [online], 2019

Dying Matters. Resources [online], 2019

Hospiceuk.org. Resources, Hospice IQ. Hospice UK [online], 2016

Macmillan.org.uk. Resources – Macmillan Cancer Support [online], 2019

Marie Curie. Publications and Resources [online], 2019

Scie.org.uk. End of Life Care: Resources [online], 2016

Specific end-of-life care resources

MND Association. Palliative and End of Life Care. MND Association [online], 2015

Marie Curie. How is Oral Health Affected at the End of Life? [online], 2018

Mouth Care Matters. Mouth Care Matters [online], 2019

Sue Ryder. Practitioners’ Guide: Human Rights and End of Life Care [online], (2019)

Generic end-of-life care guidance

NHS Support Around Death. NHS Support Around Death [online], 2019

NHS.scot. Informed about Palliative and End of Life Care [online], 2019

RCN. RCN End of Life Care [online], 2015

Scottish Partnership for Palliative Care [online], 2019

Clinical support – identification of dying and toolkit

Ambercarebundle.org. AMBER Care Bundle [online], 2019

Goldstandardsframework.org.uk. Gold Standard Framework – PIG – Proactive Identification Guidance Registration Form, [online], 2016

Clinical support – clinical assessment

Bgs.org.uk. NHS RightCare: Frailty Toolkit. British Geriatrics Society [online], 2019

cgakit. Rockwood Clinical Frailty Scale – CGA Toolkit Plus [online], 2018

McGuire D. Pain Assessment in Non-Communicative Palliative Care Patients [online]. Grantome, 2008

Pos-pal.org. Palliative Care Outcome Scale (POS) – Home [online], 2019b

Rockwood K. A global clinical measure of fitness and frailty in elderly people. Canadian Medical Association Journal 2005; 173(5), 489–495.

Royal Hospital for Neuro-disability. Future Feeding Planning Pathway. Royal Hospital for Neuro-disability [online], 2017

Clinical support – person-centred care

Connolly M, Perryman J, McKenna Y, Orford J, Thomson L, Shuttleworth J, Cocksedge S. SAGE & THYMETM: A model for training health and social care professionals in patient-focused support. Patient Education and Counseling 2010; 79(1), pp.87–93.

Respectprocess.org.uk. ReSPECT Process. [online], 2019

Clinical support – care pathways

Taylor R. Rehabilitative Palliative Care: enabling people to live fully until they die. A challenge for the 21st century. End of Life Care Horizon Scanning [online], 2015

Together for Short Lives. Care Pathways for Seriously-Ill Babies, Children, Young People and Their Families. Together for Short Lives [online], 2019

Supported decision-making

Murphy J. Let’s Talk About Capacity… Talking Mats [online], 2016

Nice.org.uk. Overview: Decision-Making and Mental Capacity. NICE Guidance [online], 2018b

Specific to learning disability

Bristol.ac.uk. Learning Disabilities Mortality Review Programme. School for Policy Studies, University of Bristol [online], 2017

Disability Distress Assessment Tool [online], 2008

Ldpcproject.co.uk. Learning Disabilities and Palliative Care Project – Palliative Care Pathway [online], 2014

Pcpld.org. Resources: PCPLD Network – Palliative Care of People with Learning Disabilities Network [online], 2015