what is pediatric palliative care, really?

what is pediatric palliative care, really?



what is pediatric palliative care really what can it look like really when your child has a serious life-threatening illness your first concern is treating the child's illness but there is so much more to it than that you have worries running in the back of your mind what impact will treatment have on your child what if the treatment doesn't work how do you talk about the illness to your other children why did this happen to you can you and your spouse do this together or will it tear you apart will you make the best decisions for your child what if the doctors disagree with each other what if it doesn't work pediatric palliative care goes far beyond the specifics of your child's illness to help you cope with all of these things it is an extra layer of support that makes things clear and calmer for you and your child it is a doctor nurse social worker who talks to you about so much more than your child's disease and treatments who talks to you about the big picture and gives you language to think about and talk about your philosophy of care tell me about your child who they are as a person not their disease what could help you feel that you have made the best decision you could for your child what are your biggest fears and worries about the future with your child's condition are there specific conditions that you would not find acceptable for your child to be in given what you know might happen what are your hopes for your child and your family would you like help talking with other family members about some of the difficult issues their goal is that you are never making decisions in a crisis moment they help you anticipate what is coming and give you the space and help to do that thinking ahead of time palliative care is a gifted communicator who will answer any question you have for them no matter how difficult or scary it is pain specialists who will use every technique in medication they know of to help your child be as comfortable rested and alert as possible so you can be – it is a doctor who will get all of your child's other specialist doctors in the same room at the same time to talk about what each decision means for everything else and the whole child for example what is the impact of spinal surgery on your child's ability to swallow if she has a spinal fusion will she need a feeding tube it is a doctor nurse or specialist who does not insist on any must sore muscles you have choices let's look at the choices through the frame of your philosophy let's talk about the pros and cons of all the interventions you're considering it is music therapy for your child it is a Child Life Specialist who will play with your child or their siblings it is massage for your child and also for you it is a chaplain who will help you talk through spirit issues or simply be a wonderful listener it is a social worker who can talk to your child's teacher about reintegrating your child into the class and school it is an entire team that will do everything in their power to get your child home if that is where they want to be finally it is people who will help you feel that you have made the very best decisions and have been the very best parent that you can possibly be for your child

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