Partners in Health, a Nonprofit Corporation
08/04/2025 | News release | Distributed by Public on 08/04/2025 13:53
PIHers’ Picks: Read, Watch, Listen for the “Rebel Caregiver”
At Partners In Health (PIH), accompaniment means walking with someone in the hard, scary, confusing, and stressful moments-for as long as it takes-no matter how difficult or uncomfortable it may be.
This can mean caring for someone with multidrug-resistant tuberculosis, building a maternal health wing of a hospital, or ensuring medical supplies get to the right place at the right time to prevent lapses in care.
It also means accompanying people in some of the hardest stages of their lives, including caregiving and end-of-life planning.
August is National Grief Awareness Month and National Make a Will Month. Wills ensure you can protect the people and causes you care for most beyond your lifetime. In the United States, just 4 out of every 10 people have a will or living trust.
Many supporters of PIH are already pushing against this inertia, creating plans for their legacies and reclaiming their agency. In recent years, PIH's Gift Planning team has connected with 616 people seeking accompaniment through the Legacy Planning process.
Most of them are what we like to call "Rebel Caregivers." Based on the 12 Jungian archetypes, most PIHers are caregivers at heart, with an irresistible urge to protect the vulnerable, support others, and ease suffering. But they are also rebels-people who are never comfortable with the status quo and who speak truth to power, even when it means being the lonely voice in the room. Rebel Caregivers don't go along with mainstream thinking and do not like to compromise on core values.
Whether you have already planned your will, are still figuring out how to start, acting as a caregiver, or undergoing a period of grief, contending with death-both your own and your loved ones'-can feel incredibly overwhelming, scary, and even anxiety-inducing.
You don't have to do it alone, though.
Supporters of PIH have offered end-of-life-care to their loved ones, experienced grief, and have sought out resources to come to terms with mortality and reclaim their own agency and legacy.
Out of gratitude for the beautiful conversations and experiences our Gift Planning team, coordination site staff, clinicians, and staff around the world have shared with our Rebel Caregiver community, we are pleased to recommend books, podcasts, and movies that can bring healing to the universal experiences of caregiving, end-of-life planning, and grief.
From the patients PIH serves to our children, parents, spouses, and community members we support, may these resources help nourish you to allow you to continue your heartfelt care.
The Wild Edge of Sorrow by Francis Weller
Recommended by Angela Letizia, Managing Director, Institutional Partnerships
"PIH has taught me so much about what it means to take an orientation of learning and curiosity relative to our patients. What would it take to adopt that same posture relative to grief? In The Wild Edge of Sorrow, I was invited to 'become an apprentice to grief,' inviting grief to become a teacher and mentor, rather than something to be feared or avoided. Through this book I learned to identify the griefs that we experience each day-what we expected to happen and did not, the weight of an unjust world-and invite them in to be absorbed and transformed through attention and ritual."
Being Mortal by Atul Gawande
Recommended by Lesley King, Chair of the Board of Directors
"The book Being Mortal gave me a language to think about and then discuss the difficult topic of aging and illness and end of life. Atul Gawande's writing is sensitive and compassionate, and he uses personal, relatable stories to draw us into the topic. I was able to take a class at Stanford based on the book's teachings and we further explored the shortcomings of the modern medical system in the U.S. as it deals with end of life and illness. We also discuss Gawande's emphasis on dignity and agency. Being Mortal is a book that I find myself thinking about in many conversations."
A Beginner's Guide to the End by Shoshana Berger and BJ Miller
Recommended by Lauren Spahn, Chief of Staff
"A Beginner's Guide to the End provides practical tools and advice to support with facilitating end of life exploratory conversations as well as active planning for yourself and with loved ones. It spans from acknowledging and sharing tips for how to navigate the emotional dynamics to showcasing concrete and accessible resources for managing the logistical and administrative side of end of life. Throughout all the content, the authors broach this topic with candor, warmth, and in an effort to normalize these challenging conversations."
The Pulse
Recommended by Sheila Davis, Chief Executive Officer
"The Pulse (pulsevoices.org) tells the stories of health, illness, and care as first person narratives from health providers, patients, caregivers, and students. The stories in short pieces, all types of poetry, and podcasts, portray the raw emotion and the complexity of life and death in honest, difficult, and beautiful ways. As a nurse and in my personal life, I have borne witness to and experienced profound loss, and learned that although rarely resolved, grief softens, and we go on living. Grief and loss are omnipresent but often hidden in our society. For me, being able to connect with others by reading their most intimate reflections is healing."
Briefly Perfect Human by Alua Arthur
Recommended by Laura Sidla, Senior Director of Gift Planning
"I met a PIH patient turned colleague in a former Ebola treatment unit in Sierra Leone. He wanted to work for PIH to help bring water and comfort to patients who need it, the way his late daughter begged for water and comfort while in the unit. I think of them often. When my toddler cries for comfort or water in the middle of the night or when my father requested the same on his deathbed. PIH staff, patients, and supporters are all linked by our humanity, caregiving, and commitment to help heal the world. After accompanying hundreds of PIH supporters through legacy planning and bearing witness to their proactive and active end-of-life planning and grief, I followed Alua Arthur's death doula training. She illuminates how experiences with death can empower us to live more meaningfully-one cup of water or comforting word at a time."
The Pitt
Recommended by Kristen Jones, Senior Regional Director West and Midwest
"It may seem strange to recommend a show about an ER in an under-resourced Level 1 trauma center/teaching hospital to someone who is going through grief and the various stages of caregiving. But I found so many of the storylines in the show reflected back in my experience as a caregiver in the hospital system. In particular, the first two episodes follow a storyline of two siblings who must make end of life decisions for their father, and their disagreements on whether to follow their father's advanced directive. I am grateful that in my own experience, my siblings and I were ultimately aligned around honoring my mother's advanced directive and wishes (and even more grateful that she eventually recovered and could make her own decisions). But multiple doctors and nurses shared that we were in the minority, and families often argued over whether to honor advanced directives. It was an honest and nuanced portrayal of one of the toughest times in a caregiver's life."
Rebel Cargeiver sticker
Fill out the form below and we'll send you a free Rebel Caregiver sticker-perfect for your laptop, water bottle, or wherever you want to show off your gear. Claim yours and rep your Rebel Caregiver pride!
P.S. Already made your will or just starting to think about it? Our free tax-smart giving guide has tips to help you make the most of your impact.
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Partners in Health, a Nonprofit Corporation published this content on August 04, 2025, and is solely responsible for the information contained herein. Distributed via Public Technologies (PUBT), unedited and unaltered, on August 04, 2025 at 19:53 UTC. If you believe the information included in the content is inaccurate or outdated and requires editing or removal, please contact us at [email protected]