Tag: Pediatric Palliative Care

EOLPodcast

Ep. 506 Pediatric Palliative Care and the Remarkable Children it Serves with Bob Macauley MD

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Learn about the specialty of pediatric palliative care and how one doctor has benefitted from his relationship with his seriously ill patients.

My guest Dr. Bob Macauley is one of only a few hundred pediatricians in the U.S. specializing in palliative care for children with life-threatening illness. Uniquely Dr. Macauley attended both divinity school and medical school at the same time, which gives him a spiritual perspective on palliative care as well. He is the author of the recently published book Because I Knew You: How Some Remarkable Sick Kids Healed a Doctor’s Soul. Learn more at his website:

robertmacauley.com

Get the book here

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This episode includes:

  • What makes pediatric palliative care different from adult care
  • How children understand and cope with their own mortality
  • How his training as both a doctor and an Episcopal priest intersect in his approach to care
  • Some of the remarkable stories of children he has encountered
  • The challenges and rewards of supporting families during the most vulnerable times
  • Why the presence of joy and sorrow often coexist in children’s experiences
  • The spiritual and emotional lessons Dr. Macauley has learned from his work

Links mentioned in this episode:

If you enjoy this content please share it with others and consider leaving a review on iTunes. Thanks again to all supporters on my page at Patreon.com/eolu, and thank you to Yoshimi Kanagawa for buying me 5 coffees and to Kathleen Cheetham who made a donation on Paypal! Your contributions make all the difference and ensure this podcast stays ad-free.

EOLPodcast

Ep. 436 Highlights of 2023: The Best of the Best with Karen Wyatt MD

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Find out what you may have missed in 2023 if you haven’t listened to every episode!

In this solo episode I recap some of the episodes of this podcast that had the greatest impact on me personally and professionally! All of the interviews from 2023 were fantastic but if you missed any of these be sure to take a listen! Thanks for your support this year! Looking forward to another amazing year – be sure to subscribe and leave a rating and review if you enjoy this content.

HAPPY NEW YEAR AND MANY BLESSINGS TO YOU AND YOUR BELOVEDS!

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Links mentioned in this episode:

EOLPodcast

Ep. 415 End-of-Life Care for Children and Their Families with Toula Saratsis

kwyattmd

Learn how a grieving mother has been called to offer palliative, end-of-life, and after death care to children and their families.

My guest Toula Saratsis is a certified end-of-life doula who specializes in prenatal and pediatric palliative, end-of-life, and after death care support. She shares her poignant story of being called to this work after the death of her daughter Angelica from a life limiting condition. Toula’s work and wisdom are remarkable in a field of care that many find too painful and heartbreaking to pursue. She shows us that grief is a powerful transformer and creator of good in the world. Connect with Toula:

toulasaratsis@gmail.com Facebook:  Toula Saratsis Instagram:  @toula_saratsis

Watch on YouTube

Listen here:

This episode includes:

  • Toula and Angelica’s story
  • How Toula managed to cope with devastating loss and grief
  • Why Toula felt well-suited to provide palliative and end-of-life care to children after facing death on a daily basis
  • How to inspire more end-of-life care providers to work with children even through their discomfort
  • How Toula advocates for patients and families within the healthcare system
  • The need for palliative and end-of-life care for perinatal death
  • How to talk to a child with a life-limiting condition about death
  • The importance of a home funeral after a child dies
  • Self-care while doing this work

Links mentioned in this episode:

If you enjoy this content please share it with others and consider leaving a review on iTunes. Thanks again to all supporters on my page at Patreon.com/eolu, especially my newest donor Nadili, thanks to Kim Adams for upping your pledge, Kristin Kennell for your Paypal donation, and to Kathleen Vallee Stein for buying me 10 coffees! Your contributions make all the difference and ensure this podcast stays ad-free.

End of Life, EOLPodcast, Grief, Tragedy

Ep. 101 When Your Child Has a Life-Limiting Illness with Blyth Lord

kwyattmd

Learn how Blyth Lord coped with the illness and death of her young daughter and went on to create the Courageous Parents Network.

PodcastLord

Blyth LordIn this episode I share an interview with Blyth Lord whose daughter Cameron died before the age of two of Tay-Sachs disease, a rare genetic disorder. She describes how she coped with her grief and established a non-profit to help other parents who are caring for children with life-limiting illness.

Learn more at www.CourageousParentsNetwork.org

 

ANNOUNCEMENT:

An Evening withDr. Ira Byock

On the evening of August 21st I’ll share a conversation with hospice and palliative care physician Dr. Ira Byock about the 20th Anniversary of his groundbreaking book Dying Well. Join us for this LIVE event where you will be able to chat with Dr. Byock and ask questions about his books and his work. Let’s show our gratitude for his dedication to improving the way we care for people at the end of life. Learn more and register here. (It’s free and you’ll receive the replay if you can’t join us on the 21st.)

Patreonbecome2xThis podcast is supported through the generous donations of “patrons” who chip in $1 or $2 per month to help cover the costs of production. A HUGE thank you to all of you who are helping out! Our next Hospice Happy Hour will take place on Friday August 25th (you’ll receive all the information by email.) If you’d like to become a donor go to Patreon.com/eolu to learn more!

I chose to share today’s interview because of the very recent death of Charlie Gard, an 11-month old boy in England with a rare, inherited mitochondrial disease. His terminal condition sparked a controversy that spread around the world when the hospital providing his care proposed that Charlie’s life support be terminated. Even the Pope and President Trump weighed in on the issue that went to a high court to decide little Charlie’s fate. Ultimately his parents yielded to the court’s decision and Charlie died on Friday July 28th.

This heartbreaking story points out how nearly impossible it can be for parents to make life-and-death decisions for their children. In this interview my guest Blyth Lord experienced a similar tragic situation when her baby daughter was diagnosed with Tay-Sachs disease, a rare genetic disorder. Blyth shares how she coped with the diagnosis and the remaining months of her daughter’s life, as well as her subsequent grief.

Blyth went on to found the Courageous Parents Network and to contribute to the Pediatric Starter Kit for the Conversation Project. You’ll learn:

  • What factors are most helpful to families coping with the devastating loss of a child.
  • The benefits of Pediatric Palliative Care from a parent’s perspective.
  • How the Courageous Parents Network is offering support to parents caring for terminally ill children.
  • How the Pediatric Starter Kit from The Conversation Project is helping parents have important conversations with their ill children.

Blyth Lord is the founder and Executive Director of Courageous Parents Network, a nonprofit focused on improving the experience of parents caring for children with life-limiting illness through education, advocacy and parent-to-parent support. Blyth is also the Executive Director of the Cameron and Hayden Lord Foundation, a small family grant-making foundation whose mission is to advance pediatric palliative care in the United States, as well as fund research of therapies for lysosomal storage diseases. Blyth’s daughter, Cameron, and nephew, Hayden, died of Tay-Sachs disease in 2001. In the years following, Blyth has promoted the needs of families caring for children with serious illness and how providers can best meet these needs. Blyth is also co-chair of the Parent Advisory Group for the AAP’s Section on Hospice and Palliative Medicine.

Blyth sits on the board of National Tay-Sachs and Allied Disease and on the board of The Children’s Room, a bereavement support program for young families who have lost parents/siblings/children.

Websites: http://courageousparentsnetwork.org

                http://theconversationproject.org

Tune in next week for another episode and until then ….

Face Your Fear.                     BE Ready.                    Love Your Life.

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