Table 5

Parents’ comments about doctors’ post-decision role

Positive evaluations by parents about specific affirmation of their decision or provision of follow upNegative evaluations by parents about lack of follow-up
We received a hand written letter from [names the oncologist] saying you guys are great, making this decision, I wished I had told you that was the decision to make because that's what I really felt for her. It was like getting a letter from God. (Parent 8)
He [the neurologist] saw it in his heart to ….support us like, he came to our house after we'd made the decision and he sat us down and said right – are you sure? And he was very good ...we sat down at home he was probably there for two hours, or so…And he just kept saying this is huge, huge. Just make sure you're really sure about it. It was really good of him to do that…he said ok, fine – this is the procedure we'll take. (Parent 8)
She [the oncologist] said I don't know how long she has to live. You'll no longer need to come to [names the hospital]. You're now in palliative care. And I said well where do I go to palliative care and who do I call and she said there are brochures in the hallway. So I had to get the brochures from the hallway to call the palliative care people… I had to make the call myself… Just a phone call, like your child's been sent home to die and they won't even give you a phone call. Not to mention a bloody phone [number] for whoever you go to see…I don't know even if it was once a week, I'm not talking about every day it would be nice that there was someone who could call you and say how are you? (Parent 7)
And that was very disappointing [the lack of hospital team follow-up] because you kind of felt you've gone against what society expects of you (Parent 8)