Chapters indexTo make an end-of-life decision for their child parents think about a number of things that are important for their child and themselves. Some of these can be hard to explain to other people. Parents know their child in ways that doctors and other healthcare professionals may not understand even if they have known the child for a long time. (See Who decides?)
Parents think about the enjoyment that their child has in life - what makes them happy. They think too about whether their child is experiencing physical pain or discomfort and whether particular medical procedures may hurt the child or be distressing for the child. Parents look at whether their child is in emotional distress or is upset. They think about the kind of relationships the child shares with their family and friends and how they relate to their world. Parents may see that their child's experiences have changed over time. (See Quality of Life)
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"But at the time we also lived with the knowledge that it was likely we were going to have to make those decisions. We knew Alice wasn't going to have a long life, probably wouldn't reach adulthood. So we just answered them, I guess we were fairly - what's the word accepting. You know once we got two or three years in, you kind of digest the seriousness of her inability to do things or the complexities of her clinical needs, we kind of just sat with that. That's life and we did the best we could with what she had. So and it wasn't really something that we actually needed to make a decision on until her very last hospital admission."
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Often in reaching a decision, parents work out what they believe is the right, best or fair thing to do for their child in their circumstances. Fair can be hard to judge. Usually a fair decision means not prolonging the child's suffering or maintaining their life when it does not benefit the child. Sometimes parents feel that their child has gone through enough difficulties in their life rather than one event being too challenging for them. In making a decision parents think about the past and also imagine what the future will hold for their child. (See Doing 'what is best' for a child)
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"What were we doing it for? What were we hoping to achieve? What did we want? Well we wanted the little boy we had we didn't want the sick little boy. Well that's not right, we DID want the sick little boy we had but we didn't want our little boy to be sick. [His illness] was never going to be fixed. So we didn't want to unduly prolong his suffering…"
"I suppose that I had decided it was going to be quantity over quality. That a good life didn't necessarily have to be a long one….And I wanted it to be filled with a lot more joy… But I had seen him back in the hospital even on the BiPAP mask he was just miserable. And it was a really distressing experience."
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Parents have talked about their decision as being about the child not the parent. Many parents view an end-of-life decision as their responsibility as a parent. Although parents and their child's lives are interconnected, a decision to forego life-sustaining medical treatment is primarily a decision about the child's wellbeing. Parents, however, need to feel that they can live with the decision they have made. See 'Did I make the right decision?' Will I be able to live with myself?
"as his mother I have to make the decision for him and what's best for him"
"so I could clearly see then, that it was no longer for him. And I think that was our line in the sand- if we were doing it for us rather than for him."
"For us it doesn't feel right, but for him I'm truly at peace about making that decision"
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To make their decision parents seek out information from various sources such as healthcare and community professionals, other parents, support groups for particular conditions and the internet. Some parents talk with trusted family and friends, elders or members of their community or with religious advisors. No parent wants to feel pressured or rushed into such an important decision. It is usually important for parents to have as much time as possible to think about their child's situation. (See Is there a rush to make a decision? Do I need to decide now?)