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, there is absolutely nothing about Hope that is false.
The official definition of hope is: To have confidence; trust. To wish for a particular event. To desire and consider possible.
Prognostication in paediatric disease processes is not an exact science. Research has shown that diseases affecting the young play out very differently than within adult populations. This information can be extremely helpful to a family. Having transparent conversations early in diagnostic testing, allow families to develop trust in their medical providers. Parenting a child at end of life is especially challenging. Our responsibility is to establish honest communication, even about the uncertainties of specific diseases. This allows parents to make the very best choices for their child, choices that will increase confidence of the parents in themselves and their medical teams. Parents are entitled to have Hope (have confidence; trust) in their child’s medical teams and the care they choose for their child.
Purposeful memories are vital for children with life-limiting illnesses. Special adventure charities for children are located around the world to provide family trips to amazing locations. To see the joy of expectation on the face of a child that will be experiencing a special adventure is a picture of Hope.
Yes, these excursions require considerable medical forethought, medications for symptom management, and sometimes durable medical equipment is arranged for delivery to the family’s destination. However, children with life-limiting illnesses are perfectly able to participate in these activities. The days prior to these events are full with giggles and optimism. Hope (to wish for a particular event) is provided all around the world through charities to bring joy to children whose life span is in a space of uncertainty. Hope can be planned and accessible, even as a child nears end of life.
Hope is reframed
Goals easily change for a family as they care for a terminally ill child. Hope is re-framed. One family we cared for defined hope as being able to maintain their son at home, without the need for further hospitalisations. Their Hope (to desire and consider possible) was to allow their son to pass away at home, in his mother’s arms. Never once did our team feel we provided this family with false hope. Instead, we allowed this family to frame Hope in the way that best supported their needs. We allowed their desire for their son to pass away at home, as she requested. When a family voices a desire, they are voicing Hope for possibilities. Our job is to open access to their desires and begin to safely implement. Providing this type of support not only provides Hope, it provides a reassurance to the family that their wishes were heard and honoured.
Hope is an active ongoing expectation of good. It is a universal desire. Some may argue that hope is a basic human need. Hope does not end at the diagnosis of a life limiting illness. It is short sighted to think that hope only refers to the curing of a disease. 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.
Lanise Shortell, RN CHPPN
Paediatric Clinical Care Nurse Specialist
About the author
Lanise Shortell works with The Children’s Program of Hospice Atlanta in Atlanta, Georgia. Her passion for paediatric hospice and palliative care began 38 years ago. Her brother, Miles, suffered a traumatic brain injury due to a motor vehicle accident. In those days, limited options were available for families. She finds great comfort in watching family centred hospice and palliative care become more accessible to children around the globe.