Symptom management at the end of life for people with intellectual disabilities
Intended for healthcare professionals

Symptom management at the end of life for people with intellectual disabilities

Caroline Egan Lecturer, intellectual disability nursing, University College Cork, School of Nursing and Midwifery, Cork, Republic of Ireland
Aisling McDonald Staff nurse, Residential Services, COPE Foundation, Cork, Ireland
Caroline Dalton Lecturer, School of Nursing and Midwifery, University College Cork, Cork, Republic of Ireland

Why you should read this article:
  • To refresh your understanding of the nurses’ professional responsibilities in relation to providing end of life care

  • To enhance your knowledge of the symptoms people with intellectual disabilities may experience at the end of-life

  • To familiarise yourself with the skills and knowledge required to support a person with an intellectual disability at the end of life

People with intellectual disabilities are living longer while experiencing significant health conditions often resulting in a prolonged period of dying. Symptom management may be complex at end of life and the unique needs of each individual necessitates a person-centred approach.

This article discusses several symptoms at end of life including pain, anxiety, agitation, breathlessness and epilepsy, as well as their management strategies, focusing on the last days of life. Healthcare professionals may support people with intellectual disabilities at end of life in a variety of hospital or community settings. Therefore, they need to have the knowledge and skills to provide evidence-based care safely and effectively.

Contemporary approaches to ensuring that people with an intellectual disability can self-determine the management of their symptoms and that their circle of support is involved in a meaningful way will be explored, including advanced care planning and shared decision-making. This article presents a biopsychological perspective to end of life care and symptom management, which speaks to a holistic and respectful approach.

Learning Disability Practice. doi: 10.7748/ldp.2021.e2167

Peer review

This article has been subject to external double-blind peer review and checked for plagiarism using automated software



Conflict of interest

None declared

Egan C, McDonald A, Dalton C (2021) Symptom management at the end of life for people with intellectual disabilities. Learning Disability Practice. doi: 10.7748/ldp.2021.e2167

Published online: 25 November 2021

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