Accessible End of Life Planning Tool
Ireland may, rightly, be proud that it 'does death very well'; as a country, we have agreed rituals around death that often provide support and solace to those bereaved immediately following their loss. Although we are seeing improvements, we are less successful in engaging in conversations about our own death or end-of-life care. This reality is also true for people with an intellectual disability. The focus of end-of-life care is to promote life, ensure comfort and support the person who is dying to have a good death. End-of-life care planning and openness around death is an essential element, ensuring people have a sense of control and autonomy in their final days.This overall goal has been challenged by restrictions resulting from COVID-19 and realisation of agreed rituals and maintaining focus on comfort and support require a renewed commitment and specific planning approaches.
Trinity Centre for Ageing and Intellectual Disability has developed an accessible planning tool for people with an intellectual disability to help them plan ahead so that their wishes can be respected at the end of their life. It is a tool for people with an intellectual disability, their families and their carers to use as they pause to think about the future. It supports ongoing conversations and building knowledge, attitudes and confidence for everyone involved so that wishes and desires are realised.
This project was supported by The All-Ireland Institute for Hospice and Palliative Care.