Acute Medicine | Palliative care | Symptom management in people with learning disabilities

Symptom management in people with learning disabilities
Session overview
Description
This session identifies issues when providing palliative and end-of-life care for people with learning disabilities and how these can be addressed.

This session was reviewed by Gemma Allen and Claire Towns and last updated in June 2022.

Learning objectives
By the end of this session you will be able to:

• outline some of the specific problems that people with learning difficulties face when they experience a terminal illness
• discuss some of the difficulties healthcare professionals experience when attempting to provide symptom management for these patients
• explain the use of symptom assessment tools for patients with severe communication difficulties

The symptom management needs of people with learning disabilities at the end of life are poorly understood. In general, professionals and carers have limited skills, knowledge and understanding around caring for people with learning disabilities, and the patients themselves may have a wide range of problems. These include differing behaviours, severe communication difficulties and physical comorbidities which can limit access to appropriate investigations and treatment.

People with learning disabilities may have particular difficulties comprehending and coping with advancing illness because of life-long or long-standing concurrent problems. People with learning disabilities experience inequalities accessing care and often their specific end-of-life care needs have not been widely considered.

This session explains the impact these problems have on patients and professionals when trying to identify and address symptom management needs. It discusses symptom assessment, including tools developed to aid the assessment of pain and distress in people with limited cognition or communication and assess their capacity. Finally, the session provides a framework for supporting the patient needing end-of-life care and provides strategies for families and for those working with them.