- The best possible communication is essential for a person who is in their last year or days of life, their family and the healthcare/social teams.
- Good communication between them can reduce anxiety and distress, and manage emotional and physical needs.
- This field of work is rapidly evolving, and so too is the role of the speech and language therapist (SLT) within it.
- SLTs’ expertise in communication, swallowing and feeding difficulties is key in providing high-quality end-of-life care to people and their families.
What is end-of-life care?
End-of-life care is support given to those who are likely to die within the next 12 months, regardless of their age. This includes help with physical, emotional, social and spiritual issues, and may be used specifically in the last days and hours of life.
Palliative care is appropriate for those with a diagnosis of a life-limiting, long-term condition (for example, lung/heart conditions or progressive neurological conditions) and may cover many years. It is an approach that improves the quality of life of people and their families facing problems associated with life-threatening illness.
The Royal College of Speech and Language Therapists (RCSLT) is using the term ‘end-of-life care’ for the approach taken for those in their last year of life and includes the last days and hours; it applies to any age, from babies through to older adults.
How can speech and language therapy help people who are at the end of their life?
SLTs have a key role, within a multi-disciplinary team, in making sure that people and their families have a supportive experience throughout a difficult and sad time.
SLTs support people who are at the end of their life with communication, eating and drinking, and decision-making. These may be treated separately or together, based on the person’s needs. SLTs are involved in the end-of-life care of premature babies and newborns (neonates), infants, children, young people and adults.
People in their last year of life may develop or already have speech, language and communication difficulties. As experts on communication, SLTs are able to:
- identify and give information and advice on all types of speech, language and communication difficulties;
- facilitate communication to enable personalised goal-setting;
- provide strategies for the person to communicate their needs and wishes; for example, they may suggest that alternative and augmentative communication (AAC) strategies and tools should be used, such as alphabet charts or eye-gaze software;
- support families in understanding communication attempts and needs;
- assess and support the person’s ability to make specific decisions.
Supporting eating, drinking and swallowing (dysphagia)
People in their last year of life may experience difficulties eating and drinking; these may be due to old age or because of a birth condition or an illness they have. SLTs help people to best manage these difficulties and support people to make decisions about eating and drinking. With good nutritional intake, people are more able to participate in activities that add to their quality of life, and that of their family, in the last year or days of life.
As experts in swallowing (dysphagia), SLTs are able to:
- identify and give information on eating and drinking difficulties;
- provide personalised recommendations about eating and drinking difficulties, taking a person’s wishes into account to ensure a high-quality of life;
- facilitate eating and drinking to be an enjoyable and positive experience for the person, reducing distress;
- give advice on how best to manage risks to health and well-being, eg making sure the person has good mouth care, or advising on how to manage when food and liquid enters their lungs.
Supporting premature and new-born babies
Premature and newborn babies and their parents may experience different difficulties in end-of-life care from others. SLTs give support to them in the following areas:
- Supporting parents and the healthcare team in interpreting the baby’s movements and sounds that are cues for feeding readiness, success and disengagement
- Breastfeeding/breast milk feeding support and pre-feeding skills; for example, sucking.
Working with others in the wider healthcare team
SLTs work with other healthcare professionals to make sure people receive high-quality end-of-life care. SLTs:
- are involved in discussions and decision-making about eating and drinking;
- are able to assess a person’s understanding of what is being said to them and their ability to make decisions, and provide strategies for communication that promote a person’s ability to express their needs and preferences;
- give training for other professionals in supporting the person’s ability to communicate, and in eating and drinking issues.
How can speech and language therapy help families and carers of someone receiving end-of-life care?
Being a family member or carer of someone receiving end-of-life care can be a stressful experience. To help reduce stress, depression and anxiety, SLTs support families and carers with:
- discussing future plans and choices (advance care planning);
- conversations about death and dying, which could include explaining issues around eating and drinking in the last few days or hours of life;
- information on how to continue communicating with their loved ones so that relationships don’t break down;
- providing strategies to support eating and drinking and reducing distress, especially when feeding someone;
- signposting to other support agencies.
Public health and end-of-life care
Public health may have different meanings depending on the context.
The National Council for Palliative Care defines public health in end-of-life care to be around social efforts to improve health in life-threatening or life-limiting illnesses, care giving and bereavement.
It also takes account of:
- Understanding the limits to service provision.
- Recognising that ‘health’ is not about simply addressing illness and disease but also the promotion of health and well-being.
- Recognising and acting on the fact that ‘health is everyone’s responsibility’.
- Understanding that ageing, caring and dying take a long time and bereavement lasts forever.
- Recognising and tackling the social epidemiology of ageing, dying, care giving and loss.
SLTs have a key role in supporting people at the end of their life with communication, eating and drinking, and making decisions about their care.
SLTs also support families and carers in making the experience less stressful by involving them in decisions for the person receiving end-of-life care, and having conversations about death and dying, as well as signposting them to supporting resources that can help with grieving.
For more information, see the RCSLT’s information on public health and the resources sections on the next pages.
RCSLT position statement
The RCSLT has developed a position statement aimed at raising awareness of the importance of speech and language therapy services in end-of-life care.
You can read the position statement here.
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, 2019
- RCN. RCN End of Life Care [online], 2015
- Scottish Partnership for Palliative Care [online], 2019
- Bristol.ac.uk. Learning Disabilities Mortality Review Programme. School for Policy Studies, University of Bristol [online], 2017
- 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
- Mancini A, Uthaya S, Beardsley C, Wood D, Modi N. (2014). Practical Guidance for the Management of Palliative Care on Neonatal Units. 1st Edition [online], 2014
Advance care planning
- Anticipatory Care Planning. Things to Think About [online], 2017
- Macmillan.org.uk. Your Life and Your Choices: plan ahead England and Wales. be.macmillan [online], 2018a
- Macmillan.org.uk. Your Life and Your Choices: plan ahead Northern Ireland. be.macmillan [online], 2018b
- Murphy J. Advance Care Planning: Lorraine’s story. Talking Mats [online], 2017
- Murphy J. Advance Care Planning Archives. Talking Mats [online], 2018a
- Murphy J. Thinking Ahead: supporting people to plan for the future. Talking Mats [online], 2018b
- Time to talk? Dying Matters [online] 2012
Useful organisations and groups
All-party parliamentary groups
- APPGs. Choice at End of Life Care/Children who Need Palliative Care/Hospice and Palliative Care/Cancer/Children, Teenagers and Young Adults with Cancer/Dementia/Learning Disability/MotorNeurone Disease/Parkinson’s/Speech and Language Difficulties [online], no date
Charities and social enterprises
- Alzheimers.org.uk. Alzheimer’s Society – United Against Dementia. Alzheimer’s Society [online], 2019
- Alzscot.org. Dementia Help and Support – Alzheimer Scotland [online], 2019
- Bliss.org.uk. (2019). For Babies Born Premature or Sick. Bliss [online], 2019
- Dementia UK. Dementia UK [online], 2011
- Dying Matters [online], 2019
- Goldstandardsframework.org.uk. The GSF Centre [online], 2010
- Good Life, Good Death, Good Grief [online], 2019
- Hospiceuk.org [online], 2016
- Huntingtons Disease Association. Huntington’s Disease Association [online], 2018
- Macmillan.org.uk [online], 2019
- Marie Curie [online], 2018
- Mencap. Learning Disability – Autism – Down’s Syndrome [online], 2019
- Mndscotland.org.uk. MND Scotland – Motor Neurone Disease [online], 2018
- Motor Neurone Disease Association. MND Association [online], 2019
- Multiple Sclerosis Society UK. MS Info, Research, News and Support [online], 2019
- Nationalvoices.org.uk. National Voices – Person Centred Care [online], 2018
- Parkinsons.org. Parkinsons Disease Information from Parkinsons.org. [online], 2009
- Pcpld.org. PCPLD Network – Palliative Care of People with Learning Disabilities Network [online], 2018
- Progressive Supranuclear Palsy. PSPA – PSPA is a National Charity providing Support and Information to People Living with PSP and CBD While Funding Research into Treatments and Ultimately a Cure [online], 2014
- Sands – Stillbirth and neonatal death charity. (2019). Sands: Stillbirth and Neonatal Death Charity [online], 2019
- Social Care Institute for Excellence (SCIE) [online], 2019
- Thebraintumourcharity.org [online], 2019
- Thinklocalactpersonal.org.uk. Think Local Act Personal [online], 2019.
- Together for Short Lives [online], 2019
- CQC. Care Quality Commission [online], 2019
- Endoflifecare-intelligence.org.uk. National End of Life Care Intelligence Network [online], 2019
- Healthcareimprovementscotland.org. Healthcare Improvement Scotland [online], 2019
- Health Education England. Health Education England [online], 2019
- NHS Education for Scotland. NES. Scot.nhs.uk [online], 2019
- NHSE. NHS England [online], 2019
- NHSI. NHS Improvement [online], 2019
- PHE. Public Health England [online], 2019
For related topics, please see:
- Augmentative and alternative communication (AAC)
- Brain injury
- Clinical guidance A-Z
- Critical care
- Head and neck cancer
- Learning disabilities
- Mental health
- Neonatal care
- Progressive neurological disorders
- Respiratory care (adults)
- Supported decision-making and mental capacity