How Palliative Care Helps
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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.
Perinatal palliative care “got to know us and really heard our hearts. They counseled us through the birth practices.”
A Complex Care Parent: I love palliative care.
Decision-making about a trach for my son: palliative care appreciates that it can be a loving decision not to do everything.
Pediatric cancer, Pain, and Palliative Care: from the parents and the doctors.
The value of Palliative Care: At first I thought they were the Grim Reaper, but I learned they would always be there for us.
What can parents do if they feel their child’s pain is not being understood by clinicians?
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.
A Palliative Care MD on the PERSON Model for Assessing People’s “Goals of Care”
Palliative Care in Oncology: Example 1: Pain Management
A Black Palliative Care Physician’s Messages to Parents of Color and to Colleagues
Palliative Care: “Nothing is forced. They listen to what I have to say.”
A pediatric neurologist on Palliative Care: “It's that human level work that we have to intentionally bring back into these conversations..."
“I wish palliative care had arrived three weeks earlier… It was such a relief.”
How palliative care looks in oncology: example 2, pain and nausea management
Palliative Care in Oncology: Speaking the child’s language; children understand
A palliative care pediatrician: I want to help kids feel safe.
A palliative care MD: “We need to try to understand what the parent's motivation is; and not shy away from pain.”
A PICU NP on seeing the value of pediatric palliative care at work.
We needed palliative care for symptom management, but also because I really needed the support.
2021 Courageous Provider Award Video: What I learned on this Journey With You
Going from palliative care nurse to palliative mom: A new appreciation for grief and caregiver needs.
What is Pediatric Palliative Care, Really?
A Doctor: I saw that palliative care was a holistic way to think about care
Now I understand what palliative care is!
Palliative Care: I was able to unburden my worries to one person … and then the care conference allowed us to talk about everything.
The palliative Care team helped me preserve his quality of life.
Palliative care gave us a language to talk to the medical specialists.
Palliative care is the beginning of finding your way.
Palliative care helps reframe interventions like feeding tubes.
Palliative care fills a huge hole that comes from having a medically complex kid.
Parenting a medically complex child, and finding balance: Not every decision is critical.
It was like this little secret society.
We provide our expertise over the continuum of care and support the broader team.
Palliative Care Helps with Difficult Decisions
Finding Hope
We provide parents with hope and also the courage they need to take the journey.
Palliative Care Focuses on All the Living
I learned about palliative care and thought, that’s exactly what we need.
I wish somebody had told us about palliative care at the beginning.
Palliative care isn't just skills and filling in a checklist.
Decision-Making: We created a space where we examined what the Next Steps are.
Palliative Care made it possible for us to go home and live.
Palliative care helps parents pause and reflect.
Uncertainty in the face of serious illness in a child: Unpacking parents’ worries.
Parenting a Medically Complex Child: Palliative Care helped us plan his end-of-life at home
I always want parents to know they have a choice
Talking directly with parents: If we would just come out and say ...
Once we understood what it was, we got on board pretty quickly.
Parenting a Medically Complex Child: finding palliative care and how it helped
The palliative care team would ask us, “How do you feel about what you just heard?”
There’s no ONE conversation.
Offering parents information and giving them the space to reflect: Are we getting the right balance?
A mother who is a doctor reflecting on her discovery of palliative care as an option for her child.
Palliative Care and Pulmonology
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From our Blog:
- Why Every Parent Should Read A Heart That Works
- We Hope: A Letter to Parents from Your Palliative Care Provider
- Two Hands
- 7 Things You May Not Know About Pediatric Palliative Care
- How Can We Prioritize Palliative Conversations?
- The Child's Primary Care Pediatrician Can Make ALL the Difference
- December 28th
- The Work We are Called to Do: The Stakes Don't Get Any Higher
- You Need This
- The Language We Carry
- Why I asked my palliative care colleagues to care for my child five days after her cancer diagnosis
- How Palliative Care Helps Us Balance Action and Acceptance
- Calling All Coping Strategies
- Five Things I Love About Being a Pediatric Palliative Care Doctor
- From palliative care practitioner, to mother of palliative care patient: My year of uncertainty and transformation.
- Caring for the Caregiver
- What Do Parents Value Regarding Pediatric Palliative and Hospice Care in the Home Setting?
- A Good Day as a Pediatric Palliative Care MD
- Companioning – The Gift of Presence
- "Our Parents Kept Asking Us to Come Back" Ilene Beal Courageous Provider Award Recipient on Becoming a Palliative Care Nurse
- A Doctor Reflects: The Selfishness of Pediatric Palliative Care
- Reflections of a Pediatric Palliative Care NP
- Rare Disease Day: Treatment--Even Cure--Is Necessary, but Not Sufficient
- A letter from a father, to CPN, about pediatric providers on the occasion of the Courageous Provider Award
- This Narrow Space: Book Review (loved it!)
- Name It to Tame It
- Baby Steps and Never Judged Decisions
- “I thought you’d never ask.” The Conversation(s): Why it matters, how it helps, who initiates It
- Palliative Care Gives Parents Another Way to Protect Their Child and Be Heroic
- Mothers are Warriors. But Some Battles Can’t Be Won.
- From a Palliative Care Nurse
- A Thank You to My Son's Palliative Care Volunteer
- I have learned that families are living, usually thriving, in the face of serious illness.
- A Mother's Letter to Pediatric Providers: It is never a bad idea to make the referral to palliative care.
- “How Are You Doing?"
- This Palliative Care Doctor Helps Empower This Family
- The Body and Soul of Care for Our Children
- E pluribus unum, one out of many - advocating for all.
- Providers focus on the child and family experience.
- Pediatric Palliative Care is a Social Issue
- Wisdom from Within | Lucy's Light
- On BEING MORTAL
- Pediatric Palliative Care in The Wall Street Journal
- To Human Kindness
- Our daughter's story was in our hands.
- Is Your Pediatrician On-Board?
- My Palliative Care Story Made It To Capitol Hill
- Three ingredients for the best Care Formula ever