“I work as a nurse in a children’s hospital, caring mostly for ‘complex’ newborns and children – children who are expected to leave the hospital dependent on a new technology, children who have had a fundamental change from their previous health, or children where there are end of life or other big decisions to be made.”
“How do you support the families of children dying in the hospital?”
“There’s the care at end of life, legacy building, support for decision making, preserving family integrity, supporting communication and information sharing, all those sort of activities during the time of death. And supporting the actual death. How children die in ICU is changing because the profile of the patients is changing. Most children who die in hospital die in intensive care unit environments and the majority die after withdrawal of life sustaining therapy. It’s very different from the 1980s when patients died suddenly. It’s very, very different. So we’re integrating palliative care teams and bioethics to provide best services for families. And after the child has died and the family has left the hospital, there’s an outreach component and a process where we can refer them to our grief support team.”
For families whose child has never been home, they are trying to put a lifetime of their relationship with this baby into the hours, days, weeks that they have.
“For these families we do legacy building. We bring in professional photographers, we encourage family time, we have music therapy, we do hand moulds, foot prints, locks of hair… There are a lot of things that we can do to smooth the transition out of the hospital, some concrete things that families can go home with.”
“The reason I involve myself in this work is because when I came down to the intensive care unit and a child passed away I just sort of thought, ‘There must be more we can do than walk away from the bedside at the end of the resuscitation.’ So my relationship with families has grown. I am here because of those relationships. I drive past four hospitals to come here, right? There’s something embedded in those relationships that makes me want to come to work every day.”
“I remember in the ’80s reading a poem. I wish I could remember who the author was. He was a bereaved father and he was also a minister. The poem was on the back of some sort of pamphlet. It was to his son who was stillborn. The poem said I wish I could tell you that when you were born we got tons of information and we got helpful advice but I can’t tell you that because you died. So I wish I could tell you that I had a birth certificate for you, but I don’t because you died. I have a death certificate. So that sort of started me thinking, ‘Wow, there’s so much more we could do. I feel helpless and everyone else feels helpless, but there is so much more that we can do.’ That’s actually what sparked me to get more interested in doing this.”
I want families who go home without their child to get the same amount of support and care that they would get if their child had survived.
When I teach family-centred care, I have a picture of the hospital circa 1950, and it’s got a mom looking through glass at a baby in a cot.
“I say to the learners, ‘This is family-centred care in the 1950s. Why doesn’t it look like this now? Who do you think changed this? Who made the change from mom looking through glass every Sunday afternoon for 10 minutes after church, to rooming in, care by parents, all this sibling presence in the ICU, family presence at rounds?'”
“We have done so, so much. It’s the frontline’s that’s driven that, right? Frontline providers have said, ‘You know, I noticed that this child gets better faster because he has a mom that just won’t go away. I notice that the child that’s held more, gains weight.’ Somebody spoke up, did some evidence seeking and was able to start swaying how people think about things.”
“So then I challenge the learners and ask, ‘What’s it going to look like when you are standing in my shoes in 30 years? What’s family centered care going to look like in the next three decades?’ It’s probably going to be very, very different.”
“Would you say that the big change has been driven by the providers rather than the patients and the parents?”
“A little bit of both I think. Providers listening to families has probably driven it the most.”
“Tell me about the parents who look after their chronically ill child at home.”
“I was actually reading an article the other day and it’s starting to be termed ‘extraordinary parenting’. And it is extraordinary parenting! They have to relearn their child. They have to learn new skills to be able to care for their child. They accept a huge amount of uncertainty, coming into the home. And they actually take on care coordinating roles, because they’re coordinating shift nursing in the home and all of the services through their community providers. They have to budget, they have to deal with money that’s granted to them to buy equipment and disposables and all of those sorts of things. They become technical experts as well as care coordination experts, and it’s a huge journey. They really are inspiring and exceptional.”
“Has your job been affected by having kids? Has your job affected your relationship with them?”
“Well, my children would probably answer it differently than I do. They think I am a paranoid parent. Safety conscious. I know all the things that can happen… I’ve been a vigilant parent. I mean, I am who I am, right? I’ve never parented not being a critical care nurse. I think it keeps the things that I am privileged to have in my life bubbled up closer to the surface. I don’t walk around all the time gloom and doom, or saying how horrifically blessed I am at every stretch. But, it’s not very buried in my daily life.”
I think that I can trust people more.
“Trust that they know their own strengths and they can find solutions and rise to the occasion. Because I’ve witnessed that over and over and over again. I have been privileged to see such remarkable things in people.”