Tag: life-limiting illness

EOLPodcast

Ep. 406 Living with Life-Limiting Illness with Novelette Munroe

kwyattmd

Learn about the challenges of coping with loss, grief and uncertainty that accompany a life-limiting illness.

My guest Novelette Munroe is a poet, artist and hospice volunteer who was born with a rare and life-limiting genetic skin condition called Epidermolysis Bullosa (EB.) Despite dealing with ongoing and constant medical issues Novelette manages to volunteer her time in hospice and peer bereavement in her local community. She discusses the challenges of her life journey and how she has managed to cope with multiple losses caused by her illness and the deaths of several friends who also had EB. Learn more about Camp Discovery for kids with skin diseases:

www.aad.org/public/public-health/camp-discovery

Watch on YouTube

Listen here:

This episode includes:

  • What life has been like dealing with EB
  • The importance of connecting with others who are experiencing a similar illness and how summer camp changed everything for Novelette
  • Why Novelette decided to become a hospice volunteer
  • How Novelette developed “grief literacy” with the help of teachers
  • Practices that have helped her cope with ongoing illness, uncertainty and grief
  • The benefits of mindful self-compassion for grief and illness
  • What Novelette wishes medical professionals understood about helping patients with life-limiting illness

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 Marian Head! Your contributions make all the difference.

EOLPodcast

Ep. 309 A Neurosurgeon’s Lessons on Love, Loss, and Compassion with Joseph Stern MD

kwyattmd

Learn how his sister’s illness and death made this neurosurgeon a better doctor.

My guest Dr. Joseph Stern is a partner in the country’s largest neurosurgical group practice in Greensboro, North Carolina. While he has frequently worked with patients and families facing life-limiting illness, his experiences at the bedside of his sister during her nearly one-year ordeal with leukemia, changed everything for him. He shares how his own medical practice was affected by what he learned about the patient’s perspective on end-of-life care and how he envisions our medical system needs to shift in order to improve the care being offered to all patients. He is the author of Grief Connects Us: A Neurosurgeon’s Lessons on Love, Loss, and Compassion. Learn more about his work at his website:

www.JosephSternMD.com

Get the book here.

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This episode includes:

  • The shock Dr. Stern experienced when viewing medical care through the eyes of a terminal patient
  • Why he wished his sister’s doctors had discussed her terminal prognosis with her
  • How to balance hope with reality when facing terminal illness
  • The additional lessons
  • he learned as healthcare proxy for his brother-in-law who suffered a brain aneurysm
  • The definition of “emotional agility” and why it should be taught to all medical students
  • How to improve empathy and communication skills for medical providers
  • Why palliative care should be started much earlier for all patients facing potential life-limiting illness
  • How Dr. Stern has changed his own approach to patients in light of what he has learned
  • How empathy and compassion can actually prevent burnout for medical providers rather than cause it

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! Your contributions make all the difference!

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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