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Key points

  • 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.

Supporting communication

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:

  • Attachment
    • 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.

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, 2019

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

Scottish Partnership for Palliative Care [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

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

Neonatal care

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

Hine P, Singh J. My Future and End of Life Care Plan [online], 2016

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 SocietyUnited 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 ScotlandMotor 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 NetworkPalliative 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

NHS organisations

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

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