Celebrating Child Life Specialist Month: A Special Q&A on Caring For Children Facing Serious Illness
As a part of our interview series with industry leaders, End Well spoke with Child Life Specialist, Michelle Hug.
Michelle Hug is a certified Child Life Specialist with over 15 years of experience helping children and families cope with serious illness and the end of life. She is the child development expert on the medical team and finds ways to translate medical information to children and families. Michelle helps grown-ups with questions like, “How do we explain leukemia to our four year old? How do I tell my children I have cancer? Do I have to tell them? Why?” She helps children with questions like, “Is it my fault I got sick? Is it my fault my mom/dad/brother got…
A round-up of some of the year’s most thought-provoking and inspiring pieces on the end-of-life experience.
The relevance of the proverbial five stages of grief was challenged, and new aspects of our relationship with grief were explored. Research on dying furthered our understanding of consciousness and connection at the end of life. Advancements in policy and healthcare delivery continued to transform how people are supported through illness and the end of life.
1. Mary Oliver on Grief and Loss
At the beginning of the year, award-winning poet Mary Oliver died from lymphoma at the age of 83. Much of Oliver’s work explored spirituality and mortality through the lens of the natural world. Oliver on death: “When it’s over, I want to say all…
Please join your fellow attendees to converse, connect and conspire during our lunchtime Community Meet-ups at End Well 2019.
Organized by color for attendees around the five pillars of End Well’s work, these informal gatherings will be spread throughout the venue and beyond offering attendees and speakers the opportunity to chew on the big and small questions that might lead to human-centered, interdisciplinary innovation during times of serious illness and end of life.
Interested?
To chose a group in advance, fill out the form in your email this week asking if you’d like to opt-in to one of the five…
Death ignorance can leave us scrambling when the time comes.
By Lisa O’Leary, End Well eCaregiver
When my husband Patrick was diagnosed with glioblastoma brain cancer in 2014, I had never watched someone die. I did not know what it looked like, what it sounded like, or what the progression would be. After his diagnosis, I was so focused on trying to save his life and “staying positive” that I failed to educate myself and prepare for the inevitable. Instead of having important conversations with Patrick about how he felt as his recognizable self slowly but surely disappeared, we focused on treatment protocol. …
As a part of our interview series with industry leaders, End Well spoke with Reimagine founder’s Brad Wolfe and Dr. Jeannie Blaustein
Before becoming a nonprofit, Reimagine was initially inspired by OpenIDEO’s End of Life Challenge and was led by Brad as part of an OpenIDEO project exploring art and end of life. Brad also founded the Sunbeam Foundation for pediatric cancer research in memory of friend, Sara L. He has an MA in Sociology from Stanford and an MBA from UC Berkeley, where he has served as a lecturer on the topics of innovation and design. …
Families deserve palliative support, too. Especially in situations where patients are too young to help loved ones navigate the progression of serious or terminal illness.
By Jeremy Pivor, End Well ePatient
Last March, I walked into the hospital not as a patient but as a medical student. It was my first clinical experience since I was diagnosed with a third occurrence of my brain tumor a year earlier. It was also not the family medicine clinic I had previously worked in as a medical student; instead, I would be shadowing a palliative care attending in a pediatric hospital.
Palliative care is a specialized form of care for people living with a life-threatening or life-limiting illness. It is often mistaken for hospice but may encompass any…
By Aisha Adkins, End Well eCaregiver
As I write this essay, sweat drips from my brow — literally. I am currently sitting on the ravine-facing balcony of my family’s rented condo in Atlanta, Georgia. Eryn Allen Kane’s gripping vocal melodies ooze through my earbuds. The temperature is 96*, with a balmy heat index of 106*. My laptop feels like it’s melting into my thighs, and I slurp down water like a woman marooned on an island. Desperate.
And I guess, in some ways, I am a desperate woman on a metaphorical island of sorts.
By Leilani Graham, End Well ePatient
I was fortunate enough to attend a recent discussion hosted by End Well Founder Shoshana Ungerleider, MD for Shoshana Berger and BJ Miller, MD’s new book “A Beginner’s Guide to the End: Practical Advice for Living Life and Facing Death.”
I watched the attendees file in: doctors with their hospital badges still attached to their skirts and blazers; couples in their senior years, dressed to the nines in bright, warm colors; sleek, silk adorned women in their thirties removing their headphones to greet each other. The attendees gathered in the vast event space on…
By Ilana Shapiro Yahdav, MPA, ACGRS; End Well eCaregiver
“Time is non-linear. I’ll always be with you.” My dad repeated many times to my mother, brothers and me, when he learned that he had terminal cancer and approximately six months to live.
Glioblastoma Multiforme. Those two words still make me shudder. That was my dad’s cancer diagnosis, a very aggressive brain cancer that takes no prisoners and leaves a disaster in its wake. My dad’s cancer was spread widely throughout his brain that even my untrained eyes, upon looking at the x-rays, could see the invader that had made my…
From every loss in Amanda Carr’s life has come a deeper understanding of the dying experience and a greater appreciation for life.
By Amanda L. Carr, End Well eCaregiver
Death and grief are often viewed in a negative light. We cope with them from a reactionary place, and they are subjects that we prefer to deflect, defer, and avoid whenever possible. Death and grief are profound teachers, however; they are inspirations for living. Their boundaries help us define and re-define our humanity and love. My life has been an ongoing lesson in how to view them in this way.
When I was five, my Grandfather Bill died suddenly of a heart attack. From this loss, I learned that death comes swiftly; it…
End Well Project
Join the movement to transform the end of life into a human-centered experience. www.endwellproject.org
