When imagining a terminally ill patient, rarely do we picture a child. Yet, it’s estimated that up to 5,300 Australian children have a life-limiting condition. Half of those children will require palliative care in a given year. It’s far from ideal to make a sick child spend their last days scared and confused in a hospital. Research shows that children with life-threatening diseases know that they’re dying and they feel less fearful when they’re at home.
If it’s possible, surround your terminally ill child with pets, friends, and family members at home. They will have the chance to cherish their last moments together away from the hospital. Learn how to create a comfortable environment for a terminally ill child at home.
Get Help at Home
Once your child is safely home, care begins. Of course, the type of care your child needs will vary greatly by their condition. Your child may have several months to live and will need assistance from a medical professional. If their condition has worsened considerably, you may not need this assistance. Simply being among family in their own bed may be enough for the child.
You’ll likely have a good idea of your child’s condition. Take for example, Jeremy’s battle with leukemia. Jeremy’s family opted to have their child pass away peacefully at home. His mother told Dying at Home, “With a child as young as Jeremy, who would know him better than his mother? I knew him better than a doctor or a nurse, or anyone else, for that matter.”
Gabrielle’s mother experienced a whirlwind of advice about pain management when she chose to bring her child home. As she said, “A palliative care nurse dropped by, a phone call was made to her pediatrician and the priest, followed by a visit from our GP who confirmed our greatest fear, it would only be a matter of time now. She was in no apparent pain, she was surrounded by those who loved her, stroking her hair and lying beside her. Our little girl was going. She died at 5.15 pm, her heart simply stopped.”
Take Time to Prepare
There’s no easy way to prepare to bring a child home to die. You may feel emotionally drained while making this decision. When you’re feeling distressed, remember that it’s ultimately about what’s best for your child. This is a time to remain physically close to your child and tend to their needs as they transition on. It’s a good idea to talk to trusted family members and medical professionals when making this decision for your child.
Follow the Direction of the Dying At Home Program
If you know the end is near, you’re likely in need of additional direction. The Dying At Home program guides carers through the dying journey. Understand that although the dying journey is an emotional time for you, it’s also a time to bring together community and compassion for the young person.
By following the program, you’ll recognize the steps of dying. For example, the person dying will begin to withdraw from their usual activity and sleep more. Their breathing pattern will change and they will desire food less. It is your role to comfort them as they transition into these stages. Dying At Home will show you exactly how to do it.