In this her latest blog post for ICPCN, Lanise Shortell reminds us that as paediatric care providers, we are extremely cautious not to provide a family with false hope. ‘It seems unfair’, we say. ‘We don’t want to set families up for disappointment’, we rationalise. For some reason, we find that talking to families about the very worst components of a disease process is responsible medical practice. We find ourselves using the terms false hope, most commonly, at the initial diagnosis of a life-limiting illness. We reason that we simply want to prepare families for reality.
Through the eyes of hospice and palliative care teams, initial diagnosis conversations are the perfect opportunity to provide families with Hope they often feel they have lost.
Hope can be re-framed in the context of life-limiting illness. Hope can be individualised when there is disease progression. However, says Lanise, there is absolutely nothing about Hope that is false.
This latest blog explores all the facets of hope from making wonderful memories together to fulfilling the wishes of the family at the end of the child’s life. Lanise concludes that when caring for children that are near end of life, Hope is essential. As we speak with families, we must understand there is nothing false about Hope. Hope is often the only thing families can control in the midst of uncontrollable disease processes. Instead of struggling to avoid false hope, we should remind ourselves of the true definition of Hope. We are all entitled to it.