- 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One would think these terms are outdated.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 realize life for these children can be a bit more complicated and will require more specialized 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.
I am honoured to share photos of brave children who are proving to be compatible with life, despite having significant life limiting illnesses. Logan and Nora represent others around our world; they represent life. Both of these children were labeled incompatible with life within the last two years. These terms were used to label Logan and Nora, and these terms have been proven false.
As much as we would like to think we have, we have not transitioned these words out of our language. Medical professionals claim to be in support of this terminology turnaround. Why, then, are these terms still in use? Why haven’t we made the total terminology shift from incompatible with life to life limited illness? Unfortunately, I do not have these answers.
I do, however, hear the frustrations of parents and families as they question the validity of medical professionals that speak these words. I do hear and see the confusion of families as they are forced to move past being told their child is incompatible with life to parenting a medically fragile child, often for years. We have a duty to eliminate this short sighted terminology. We have a duty to prepare families to what the future may hold. Continued use of incompatible with life is irresponsible and, ultimately, can be harmful.
The time is now for us to stop using outdated, black-or-white terminology that funnels us into black-or-white thinking. This binary thinking results in only two labels for children: life or death.
Instead, we need to embrace the in-between.
Because this outdated terminology is still in use, we have much work to do. Hospice and palliative care professionals have put much effort to pioneer this change. We have tried, however, we have failed. To complete this task, medical professionals, parents, friends, and family members must consistently advocate for the shift in terminology and, hence a change in thinking, to occur. Truth is our duty.
Lanise Shortell, RN CHPPN
Paediatric Clinical Care Nurse Specialist