My husband and I had two consecutive daughters born with genetic disease. On diagnosis the geneticist told us they wouldn’t see their teenage years. We were devastated our beautiful girls were going to slowly lose the ability to eat, drink and finally breathe.
It was terrifying on so many levels, and so many questions no one could answer. So we settled on taking just one day at a time, we would deal with problems as they came.
They both didn’t even get to the age of one year: Molly died at 11 months and Annabelle died at 8 months. They had a rare muscular disease where their muscles would slowly atrophy making them unable to swallow and eventually breathe.
We cared for and loved them while we watched them deteriorate and become very unwell with pneumonia and then take their last breaths. We had a palliative care nurse and wonderful G.P. We kept them at home with their brother and us, and they were able to die at home in our arms.I don’t believe they suffered too much as we were able to give them oral morphine for pain relief. We were advised by our nurse and G.P. about doses and how to tell when they needed more. I believe they were kept comfortable on the medication.
It was so painful for us as parents to watch them die and let them go. The pain felt was due to the love we felt for our beautiful little girls.Euthanasia thankfully didn’t enter our minds and it wasn’t a legal option anyway. I can’t imagine compounding the pain and grief we felt as our beloved daughters were dying with a decision to actively end their lives sooner.
When you’re grieving a dying person, the confusion and fear is all consuming; having to make an active decision to kill them is dangerous. The guilt you may have to live with because you decided to end their life early would be too much to bear.
I recently had to put my dear old dog down. As I watched the vet push that syringe to inject the anaesthetic into my dog I kept thinking, “I’ve done this to her; I’m the one who okayed her death.” It felt so wrong even on a beloved pet. You question your motives: was she just a burden? Could she have had a comeback, etc.? To do that to a human would just add confusion to the grieving experience.
I believe the palliative care our baby girls received as excellent. We should not play God but keep our loved one’s pain free and comfortable. Taking care of a dying loved one can bring the absolute best of our humanity out in us, and we shouldn’t try and avoid the pain that leads to that.
I hope the End-of-Life Choices (Voluntary Assisted Dying) Bill 2020 will be defeated in Parliament. More funding is needed to improve palliative care and pain management training for medical staff.