O-81 Honouring the hopes of parents with children with life-limiting conditions

Abstract

Background Family-centred advance care planning (ACP) discussions support parents’ need for honest and open communication regarding the future complications their child with life-limiting conditions may incur. Parents find that such conversations offer opportunities for shared decision making, peace of mind, and trusting relationships with healthcare providers—opportunities that ultimately ensure that the best care is provided for their child. One component of family-centred ACP conversations is the exploration of hope. There are many barriers and challenges when exploring hope, especially for parents with children with life-limiting illness. Aim This presentation will review the value and importance of exploring the multi-dimensional concept of hope. A video demonstration of a “hope conversation” with Heather and Greg—parents with a child with a life-limiting condition—will identify how exploring the multiple layers of hope can be healing and can offer opportunities to create strategies to help parents achieve some of their goals for their seriously ill child. Discussion The exploration of hope for individuals with life-limiting illness requires skill, understanding, and compassion. Healthcare providers experience a variety of challenges when exploring hope, such as fear that the conversation will “take away” hope or cause anxiety and stress. These barriers often thwart the ability of healthcare providers to facilitate effective conversations and deepen their understanding of hope and its many layers. Hope has many dimensions, ranging from those that may be considered wishful thinking (e.g., hope for a cure) to more practical tasks (e.g., hope to control pain). Healthcare providers who understand this concept will continue to probe individuals’ hopes to gain a more comprehensive understanding of their goals and values. Exploring the concept of hope with parents with children with life-limiting illnesses is particularly challenging since such discussions are often accompanied by emotion and anticipatory grief. However, the exploration of hope also empowers individuals to become more aware of their goals and values and to, eventually, learn to prioritise the ones that are most important. It is possible for some hopes to be achieved through creative strategies and planning. The skillful exploration and management of hopes can have a direct impact on healthcare decision making and the end of life experience.