Young people who have learning disabilities commonly have many complex and severe life-limiting conditions that result in premature death. Too often neither they nor their family and friends are prepared for end of life situations. End of life care planning is helpful in eliciting and honouring the young person’s wishes, as far as possible. However, it can be challenging due to communication difficulties and limited understanding of the meaning of death and dying.

This article introduces the ADVANCE toolkit featuring a values-based framework that aims to help caregivers who work with young people who have learning disabilities, including nurses, social workers and care assistants, develop their confidence and skills in end of life care planning. The ADVANCE toolkit enables insight in knowing how, when and with whom to discuss the sensitive topic of planning for end of life care. In this article, six activities are included for readers to complete with a view to enabling engagement with the material presented.