For the past 16 years Dr Ross Drake has been helping children and adolescents prepare to die.
The palliative care physician has found teenagers are quite capable of making decisions about their treatment and pain relief even when they are contrary to their parents’ wishes.
“But they still need their parents to set normal boundaries and decide some things for them,” he told a conference of the Faculty of Pain Medicine of the Australian and New Zealand College of Anaesthetists (ANZCA) in Auckland.
Dr Drake, who works at the Starship Children’s Hospital in Auckland, told AAP of a 16-year boy whose cancer was not responding to treatment and who did not return for chemotherapy given to keep the disease at bay for as long as possible.
“After missing three clinic appointments, he was hauled back in by his mother.
“He confessed, ‘The only reason I came back was that Mum made me – I was waiting for that’.” But the boy also chose to take only the smallest dosage of morphine for his pain as the drug had a slightly suppressing effect on his thinking.
“He wanted to be able to go out with his friends.
“It was as if he had decided, ‘I don’t have much control over what is happening but I can control this’.”
US surveys of adolescents with cancer showed a priority was to be free of pain or discomfort, while 75 per cent of them thought it was important to discuss end-of-life decisions not only if they knew they were dying.
Dr Drake says his work can be heartbreaking and inspirational.
“I feel privileged – you can make a difference although you can’t change the outcome.
“My philosophy is if I can go out and change the thing that’s causing the most distress, or reduce that, then you have helped.
“You can’t take away the awfulness of it – but you can make it a little more bearable.” He advises parents to be authoritative but not authoritarian.
“Be clear and firm about boundaries that are not negotiable and be flexible about the boundaries that don’t matter so much.” Starship is the only paediatric palliative care service in NZ while Australia has about eight similar places.
But Dr Drake noted all the services in both countries were grossly underfunded.
*The writer travelled to the conference courtesy of the ANZCA.