I hear you answer, they shouldn’t. They just shouldn’t die.
But they do. More often than you would think.
So back to the question… Where should children die?
It has taken me a while to get down to writing this; it is enormously emotional topic for me. I have shed many a tear when trying to help families in this situation.
Let’s look at the options.
Hospital? As I have experienced many times in the last 15 years, dying in hospital is not straight forward. Firstly, nurses and doctors are not trained to allow death. They save lives. Death?? No, that must happen somewhere else. Anywhere else or at least not on my shift!
Then if we need intravenous morphine for pain, hospital policy dictates that this cannot be given in an ordinary ward. Doctors and nurses are not trained well in pain management and there are huge fears and myths around the use of morphine. The child has to be transferred to ICU – intensive care -where their vital signs have to be monitored with alarms continuously bleeping, traumatising the family and child. Visiting hours are very limited in the intensive care just when the family should have as much access to their child as they want. So if the family choose privacy and unlimited time, they need to be on the ordinary ward where we hope the pain can be controlled using oral medication only.
Hospice? If you have one. There are very few in-patient hospices and even fewer that will admit children in South Africa. Sad story but true.
Home? If you are an incredibly brave parent. It is scary and overwhlemingly stressful. Professional home care is also limited in availability and of course comes with a cost. The parents must become doctor, nurse, physio and psychologist to their dying child. This is a journey that many have faced with grace and most of us cannot imagine.
So, where should children die? How do parents access the physical care, love and support required to allow their child to rest in peace?
It is time for us to start talking about it. We need to challenge the Department of Health and medical aids to provide this care and refuse to accept outdated hospital policies that are aimed at protecting the hospital and not the patient.
Perhaps the crux of the problem is that we don’t want to think about it. We cannot bear to imagine the pain and horror of a sick and dying child. But it is a reality that affects parents and children all over the world. Whether we want to acknowledge it or not, the dying child deserves dignity and high quality care, right until the very end.