A “Trial by Fire” for Families Imagine walking into a community center and seeing a woman lying in a bed, pretending to be a dying patient. This woman is Liz Dunnebacke, the executive director of a nonprofit called Wake. She isn’t acting for a play; she is teaching everyday people how to elevate swollen legs and change bed sheets for someone who cannot move. This hands-on lesson is vital because most families are entirely unprepared for the physical reality of dying.
Last year alone, 63 million people in the United States provided care to a family member or friend. While most of us say we want to die at home, our loved ones often lack the medical skills to make that wish a reality. Dr. Susan Nelson, a palliative medicine physician at Ochsner Health, describes this sudden responsibility as a “trial by fire.” Without training, families are often left frightened and overwhelmed, trying to perform complex nursing tasks without a manual.
Learning the Basics: The “Wake” Model in New Orleans Organizations like Wake in New Orleans are stepping up to solve this problem. They provide community-based training that turns nervous family members into confident caregivers. By teaching practical skills—such as giving a sponge bath or lifting someone safely—they are bridging the gap between the hospital and the home. This model shows that with a little education, we can transform a home into a sanctuary of care.
Who Can Teach You? Finding Support Beyond the Hospital
The Role of Health and Life Navigation Specialists and End-of-Life Doulas You do not have to rely solely on doctors and nurses for education. A growing group of non-medical professionals, known as Health and Life Navigation Specialists and End-of-Life Doulas, are available to help. Think of them as guides who walk beside you during the journey. Douglas Simpson from the International End-of-Life Doula Association explains that these specialists often have more time to spend with families than busy medical staff. They can sit with you, answer your questions, and teach you what to expect during the dying process.
Hospice Teams: Your Medical Foundation It is important to remember that your hospice team acts as your medical foundation. Hospice nurses are the experts in pain management and medical care. However, they cannot be at your bedside 24 hours a day. This is why training is so critical. When the nurse leaves, you become the hands and eyes of the care team. Combining the medical expertise of hospice with the practical support of a doula or coach ensures you are never truly alone.
Essential Reading: Navigating the Highs and Lows
Why You Need a Roadmap: The Hospice Journey Handbook Because you cannot memorize everything you learn in a crisis, having a reliable guide is essential. We strongly recommend reading The Hospice Journey Handbook: Your Complete Guide Through the Hospice Experience. Think of this book as your roadmap. It prevents you from feeling lost when situations change or new symptoms appear.
Preparing for the Positive and the Difficult Home hospice care is a mix of beautiful moments and complicated challenges. This handbook covers both sides of the experience honestly:
The Positive: It highlights how to create legacy projects, affirm life until the very end, and plan for a peaceful death visit.
The Challenge: It guides you through brutal realities such as physical exhaustion, feelings of guilt, and the management of complex symptoms like breathing changes.
Understanding both the joys and the struggles helps you stay grounded and compassionate.
Necessary Caution: Choosing the Right Support
Understanding the Lack of Regulation While recognizing the benefits of Health and Life Navigation Specialists and end-of-life doulas, it’s important to note that the field is unregulated, lacking governing bodies or accredited schools. This means there is no formal credentialing, and “certification” simply indicates that someone graduated from a school whose training quality cannot be verified.
How to Vet Your Coach or End-of-Life Doula Because anyone can claim these titles, you must be careful when choosing a guide. We advise relying on word-of-mouth referrals, verified testimonials, and personal interviews. When you meet a potential doula or coach, do not be afraid to ask specific questions to ensure they are a good fit for your family:
Can you provide references from past families you have helped?
What specific training program did you attend, and how many hours was it?
Do you have a written agreement that outlines exactly what you will and will not do?
How do you work alongside the hospice medical team?
Taking Action Before the Crisis
Start the Conversation Today Please do not wait for a terminal diagnosis or a crisis to start learning. The best time to prepare is now, when you can think clearly and make decisions without panic. We encourage you to take two simple steps this week:
Connect with a local End-of-Life Doula or a Health and Life Navigation Specialist to learn more about their services.
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At present, no official organization oversees end-of-life doulas (EOLDs). Remember that some EOLDs listed in directories may no longer be practicing, so it’s important to verify their current status.
End-of-Life Doula Schools
The following are end-of-life (aka death doula) schools for those interested in becoming an end-of-life doula:
Remember that there is currently no official accrediting body for end-of-life doula programs. It’s advisable to conduct discovery sessions with any doula school you’re considering—whether or not it’s listed here—to verify that it meets your needs. Also, ask questions and contact references, such as former students, to assess whether the school offered a solid foundation for launching your own death doula practice.
