How Palliative Care Helps
A mother who is a doctor reflecting on her discovery of palliative care as an option for her child.
In this Zoom interview with CPN, Michelle — mother of Alex (age 7) and Julianna, who had a severe form of Charcot-Marie-Tooth disease and died at age 5 — reflects on how she first thought about palliative care. “If I was offered that early on I could see how it would really upset me because for such a long time we were doing everything medically… and I wouldn’t want to think about the worst case scenario… On the other hand if I had known that this kind of standard of care is what we offer for parents and patients — it’s optional but it’s really beneficial, we offer it to everyone — I think I would have accepted it because I needed to talk to someone about these fears that were keeping me up at night and I had no outlet.
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A mother who is a doctor reflecting on her discovery of palliative care as an option for her child.
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 would ask us, “How do you feel about what you just heard?”
What is Pediatric Palliative Care, Really?
Parenting a Medically Complex Child: finding palliative care and how it helped
Palliative Care Helps with Difficult Decisions
Parenting a medically complex child, and finding balance: Not every decision is critical.
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
Talking directly with parents: If we would just come out and say ...
Offering parents information and giving them the space reflect: Are we getting the right balance?
Palliative care helps parents pause and reflect.
Finding Hope
Palliative Care made it possible for us to go home and live.
Palliative care isn't just skills and filling in a checklist.
It was like this little secret society.
We provide parents with hope and also the courage they need to take the journey.
We provide our expertise over the continuum of care and support the broader team.
Palliative care is the beginning of finding your way.
Decision-Making: We created a space where we examined what the Next Steps are.
Palliative care gave us a language to talk to the medical specialists.
Palliative care fills a huge hole that comes from having a medically complex kid.
Palliative Care Focuses on All the Living
The palliative Care team helped me preserve his quality of life.
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.
