In a new guest blog for ICPCN, Lanise Shortell, a Paediatric Clinical Care Nurse Specialist asks why health care professionals still use of the words “incompatible with life” when describing a child with a life-limiting condition. With many years of experience in the field, Lanise has cared for many children who have been given this label, and who have lived – enjoying quality of life, while not quantity.
Lanise writes:
Incompatible with life. These three words have the power to bring life to a screeching halt for new parents. The terms incompatible with life can fast-forward a family of a seriously ill child into a future they can’t imagine. Hearing the words incompatible with life can quickly deplete hope, cause feelings of isolation, and lead a family to despair. Regrettably, these three words remain commonly used today.
One would think these terms are outdated. One would hope that with international efforts for quality of life, life would be the focus. However, these three words continue to find themselves in our current medical records, in our professional conferences, and within our intimate family meetings discussing treatment options.
The unfortunate reality is that we care for children who will die. However, we all witness children far exceed their initial life expectancies. We realise life for these children can be a bit more complicated and will require more specialised support. Thankfully, we are learning that there is a large spectrum for life limiting illnesses. In spite of established challenges, the collaborative efforts of care team’s focus on the importance of children living a quality life … not being incompatible with it.
Avoiding the label of incompatible with life and introducing a family to a life limiting illness can redirect a conversation and will highlight the true meaning of individualised, dignified, and comfort care. Life can have quality, no matter how brief. Intentional use of the terms life limiting illness provides space to devote our efforts to the quality of the life with illness, not dismiss it.
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