Shock at words for dying boy

Debi Piper says her son Eli touched lives around the world. He died recently of a rare chromosomal disorder.

Debi Piper knew her little boy was slowly dying.

But the words written on his hospital care plan still hurt.

Two-year-old Eli, born with a rare, hereditary chromosomal abnormality, wasn't expected to survive his first breath. He battled through 30 hospital admissions in his 26 months of life, mostly for breathing problems related to pneumonia, Piper said.

"(After his birth) he became quickly known among doctors as the king of comebacks. Nothing could knock him."

The end came nine days ago - a virus was too much for Eli's scarred lungs and as the week went on, Piper and husband Shane realised their son wasn't going to beat this one.

Days before the Pukekohe toddler's death at Kidz First Hospital, the Paediatric Palliative Care Team sent Piper a document titled the "end of life" plan.

"It was really hard to accept that my boy, even though he was sick for so long, was at the end of his life. Surely there is a better name. I wanted it to be a life plan or quality of life plan."

The plan is an agreement between families and the care team over care of someone who is likely to die soon.

Starship paediatric palliative care specialist Dr Ross Drake, whose team leads palliative care for children at Starship and Kidz First, said the title was to alert medical staff to a child's medical situation. There had been no previous complaints from families.

But he accepted the title could be upsetting. "That kind of feedback is really helpful. When you put yourself in that position as a parent it would seem quite harsh even knowing what is happening. I acknowledge that."

The phrase Te Wa Aroha, which means time or journey of love, was added to the form following a previous review, Drake said.

Meanwhile, the Piper family farewelled Eli on Wednesday.

"This kid has touched hearts around the world. He's leaving a legacy of perseverance, of fortitude and of love."