By Ellie, who works in a paediatric intensive care unit
1. A long life doesn’t mean a life of quality
As a nurse I am an advocate for my patient. Everyone deserves life. They deserve a life that is happy and valued. The quality of life should be what you measure happiness by, not by its length.
2. Everyone does what is best for their family
Grieving is individual to a family - they see their child at their best, we only see them at their worst. When presented with the conversation regarding palliative care some are measured in their response, some take days, hours or sometimes years to make their decision. Others cling to every aspect of their child's life, holding on because the inevitability of death is harder to accept.
3. Pain should not be prolonged
Pain to both child and parent is incredibly distressing. We will do our utmost to prevent this and reduce it. Palliative care can bring a close to the darkest of times. Palliative care doesn’t mean more children dying, it means less children suffering.
4. Palliative care can last for years
The P word often suggests that death is imminent, for many it is not. It is about supporting these families and their children for as long as it takes, even after death. We are privileged to have close relationships with them, we comfort them on their journey and encourage their successes. They will remember us for the rest of their lives, not everyone is up to this task.
5. Grief is not just for the immediate family
Dealing with death and the dying regularly can be emotionally draining. It forces us to question our vocation and often leaves us burned out. The children we lose will always stay with us. We reflect and remember them in our darkest days. We always hold onto them as if we could of made their short life better. We grieve for them too.
About Ellie
”My name is Ellie and I have worked on the intensive care unit for almost a year. I have also worked in many other settings which have allowed me to see a patient and their families journey outside of intensive care. We look after families who have experienced a life changing event that will affect their lives forever. This doesn’t always have to be a death but often something that resorts in a child’s life being altered. During my time I have seen patients and their families struggle with coming to terms with the ending of the child’s life. Whether that may be soon or a few years in the future. I have seen the beauty and peacefulness of death that we advocate for when our patients cannot. As nurses we suffer from grief too, we often don’t see the families beyond the four walls of the unit so having closure is hard. We remember those we have lost forever and grieve for the future that they will not have.”
