Palliative Care: The Parents Journey through Palliative Care

This video was created in 2011 and we are sharing it in memory of Dr. Christine Newman, one of the pioneers of pediatric palliative care.

In this video, Dr. Newman explains how families decide as to where their child will pass away. The focus is on how the family will be supported during this time, as it is natural for a parent or caregiver to want to protect their child from harm. This video also offers guidance to the parent/caregiver as they manage this delicate situation.

This video is provided for general information only. It does not replace a diagnosis or medical advice from a healthcare professional who has examined your child and understands their unique needs. Please speak with your doctor to check if the content is suitable for your situation.

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TRANSCRIPT

For example, when they're making a choice about the location of the child's death. For some families, the right choice is to stay in hospital. They know that they need the support that they'll get from being able to open the door or press the button, the call button, and have someone there right that minute. For some families, that's absolutely the right place. For other families, the hospital is the last place they want to be. They want this to be an intensely personal time where they have support, because we never send a family home without putting in community supports, visiting nursing, shift nursing sometimes, visiting therapist, physicians, but they want to know that they're getting time together alone as a family and they're not having to worry about the intercom and people coming into the room without knocking. And one of the basic tenants of parenting is to protect your child from bad things. And so here is a parent thinking I can't protect them from this what do I do? What do I do? So some parents feel guilty about not being able to protect them and some parents think well, you know, if I can't protect them from it maybe we can just live as though it isn't happening. A completely understandable reaction but not one that works because I read a line in an article about palliative care one time that said not telling a patient they're dying is a little bit like not telling a woman she's pregnant.  

Sooner or later they're going to figure it out. And kids figure it out. Kids are so intuitive. They're so bright.

This is not the first thing you haven't been able to prevent your child from experiencing.  
Remember when they were learning to ride a bike and they would fall off. Remember when they were first learning to walk and they would fall down. 

Remember when they started going to school and got teased in the schoolyard. Those are all, for kids at that particular age, those are huge difficult things.

You couldn't prevent that from happening, so what did you do? Well when they started to ride a bike, you put a helmet on them.

When they started to walk, you childproofed your house. When they were going to school, you had a discussion with them about hurtful things that people say and how you might respond to that. So what are those acts? Those acts are preparing them so they can deal with something that you can't protect them from. And that's the job of a parent who has a child who is dying. It's to prepare them for it.
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Видео Palliative Care: The Parents Journey through Palliative Care канала AboutKidsHealth - The Hospital for Sick Children