How Palliative Care Helps
![Palliative care fills a huge hole that comes from having a medically complex kid.](https://i.ytimg.com/vi/5LXVHuWpSeM/maxresdefault.jpg)
Palliative care fills a huge hole that comes from having a medically complex kid.
The mom of a son with SanFilippo Syndrome discusses how critical palliative care is because the pediatrician pulls back and then there’s no one to help coordinate with all the specialists.
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“I don’t use the terminology of quality of life. It labels something that is very difficult to label.” A perinatal doctor on listening to what is in the parents’ heart and hearing where they are headed.
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Perinatal palliative care “got to know us and really heard our hearts. They counseled us through the birth practices.”
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A Complex Care Parent: I love palliative care.
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Decision-making about a trach for my son: palliative care appreciates that it can be a loving decision not to do everything.
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Pediatric cancer, Pain, and Palliative Care: from the parents and the doctors.
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The value of Palliative Care: At first I thought they were the Grim Reaper, but I learned they would always be there for us.
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What can parents do if they feel their child’s pain is not being understood by clinicians?
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A Palliative Care Pediatrician: I love being with the parents to help bring back their child that is getting lost in all the stress and noise.
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A Palliative Care MD on the PERSON Model for Assessing People’s “Goals of Care”
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Palliative Care in Oncology: Example 1: Pain Management
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A Black Palliative Care Physician’s Messages to Parents of Color and to Colleagues
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Palliative Care: “Nothing is forced. They listen to what I have to say.”
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A pediatric neurologist on Palliative Care: “It's that human level work that we have to intentionally bring back into these conversations..."
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“I wish palliative care had arrived three weeks earlier… It was such a relief.”
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How palliative care looks in oncology: example 2, pain and nausea management
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Palliative Care in Oncology: Speaking the child’s language; children understand
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A palliative care pediatrician: I want to help kids feel safe.
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A palliative care MD: “We need to try to understand what the parent's motivation is; and not shy away from pain.”
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A PICU NP on seeing the value of pediatric palliative care at work.
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We needed palliative care for symptom management, but also because I really needed the support.
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2021 Courageous Provider Award Video: What I learned on this Journey With You
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Going from palliative care nurse to palliative mom: A new appreciation for grief and caregiver needs.
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What is Pediatric Palliative Care, Really?
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A Doctor: I saw that palliative care was a holistic way to think about care
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Now I understand what palliative care is!
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Palliative Care: I was able to unburden my worries to one person … and then the care conference allowed us to talk about everything.
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The palliative Care team helped me preserve his quality of life.
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Palliative care gave us a language to talk to the medical specialists.
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Palliative care is the beginning of finding your way.
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Palliative care helps reframe interventions like feeding tubes.
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Palliative care fills a huge hole that comes from having a medically complex kid.
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Parenting a medically complex child, and finding balance: Not every decision is critical.
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It was like this little secret society.
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We provide our expertise over the continuum of care and support the broader team.
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Palliative Care Helps with Difficult Decisions
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Finding Hope
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We provide parents with hope and also the courage they need to take the journey.
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Palliative Care Focuses on All the Living
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I learned about palliative care and thought, that’s exactly what we need.
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I wish somebody had told us about palliative care at the beginning.
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Palliative care isn't just skills and filling in a checklist.
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Decision-Making: We created a space where we examined what the Next Steps are.
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Palliative Care made it possible for us to go home and live.
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Palliative care helps parents pause and reflect.
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Uncertainty in the face of serious illness in a child: Unpacking parents’ worries.
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Parenting a Medically Complex Child: Palliative Care helped us plan his end-of-life at home
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I always want parents to know they have a choice
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Talking directly with parents: If we would just come out and say ...
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Once we understood what it was, we got on board pretty quickly.
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Parenting a Medically Complex Child: finding palliative care and how it helped
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The palliative care team would ask us, “How do you feel about what you just heard?”
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There’s no ONE conversation.
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Offering parents information and giving them the space to reflect: Are we getting the right balance?
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A mother who is a doctor reflecting on her discovery of palliative care as an option for her child.
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Palliative Care and Pulmonology
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