Dear Death, Finding Meaning in Life, Peace in Death, and Joy in an Ordinary Day

by Virginia Chang, Ph.D.

For Diane, Dear Death, has been a labor of love for over 12 years. She has always been fascinated by those people who seem to live with joy, and those who face terminal illness and their end of life with a sense of peace. Through research and interviews, she found some wonderful similarities among people who were entering the last stages of life with a calmness and appreciation for a life well-lived. She credits the INELDA training and her initial work as an EOL doula for bringing to light the need to write Dear Death.

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Diane met Virginia as a fellow instructor of the University of Vermont’s End-of-Life Doula Professional Certificate program. Working together in that capacity, they developed a mutual respect and camaraderie which led to their collaboration on the book. “Having an editor who is also a doula meant the book stayed focused on our heartfelt work,” Diane said. “Virginia understood my intention, my desire for inclusivity, and the message of each section, which was an exploration of the doula heart in action.” They complement each other well as doulas, bringing diverse and different experiences and perspectives on end-of-life care. Diane is based on the West Coast and has done most of her work in California and Hawaii, while Virginia lives and serves the New York City metropolitan area. Below is an excerpt from Dear Death.

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EXCERPT: End-of-life doulas work with the spiritual, emotional, and practical aspects that come up for the dying and their loved ones. Our goal is to support our clients and their caregivers as allies, meeting each individual person where they are, honoring their unique needs and wishes. We are companions, humbled to be invited to walk beside our clients on this sacred journey. We arrive without an agenda and always remain open-minded, calm, and flexible. We listen without judgment and welcome all emotions that may arise. We observe and look for ways to offer comfort, both internally and externally. As an end-of-life doula, my desire is for all of my clients to find meaning in the rest of their life, peace in death, and joy in the simple pleasures of an ordinary day.

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On a practical note, we do life reviews, legacy projects, advocacy, advance care planning, and vigil and memorial planning. We work with clients to discuss their end-of-life options. We are always honored to sit at the bedside to offer support at the end of life. We keep detailed resource lists and will assist you in meeting practical needs, like dog walkers, or emotional needs, like grief counselors, or spiritual needs, like contacting a chaplain or organizing the Threshold Choir or local bedside musicians to come and sing at your bedside. We are nonmedical and, therefore, we do not dispense medications or make medical decisions. We are not funeral directors, so we are limited as to after-death care as well, yet we will support you in reaching out to those who offer these services.

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There are a few misnomers about those of us who work with the dying. People often say we are like “angels” who give so much. I promise you that I am not an angel. Just ask my husband or my kids. The truth is we are compassionate companions for the dying, but we receive so much more than we give. We realize the dying are our most perfect and brilliant teachers. They hold the keys to all that matters at the end of life.

People think our work is depressing. It’s not. In fact, it’s inspiring. Every person we meet is unique, with a unique story and a unique ending. It’s beautiful and I am always humbled to be invited to the bedside of a dying person or to sit in conversation with a person who is contemplating their final weeks or months of life. Truth and wisdom live in these conversations. There is no time left for shallow relationships or meaningless moments. There is no imposter syndrome with the dying. The eyes of a dying person are the clearest eyes you will ever look into. There is no place to hide. It’s like seeing into the bottom of the ocean. If you have never really gotten “real” in your lifetime, facing death will offer you that opportunity. Our work as doulas can support our clients.

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Bio: Diane Button, MA, is a founding partner of the Bay Area End of Life Doula Alliance in Northern California and an instructor for the End-of-Life Doula Certificate program through the University of Vermont Larner College of Medicine. She is INELDA-certified and is a past board member of the National End-of-life Doula Alliance. Diane is the author of several books and trainings, including The Letter Box, a legacy project that has been translated into several languages. She founded Dream of Better World, a nonprofit run by kids who raise awareness and funds for other children and families around the world. The group’s motto is, “You’re never too young, or too old, to make a difference.” For further information about her books and work, visit her website.

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Bio: Virginia Chang, Ph.D., is an INELDA-certified end-of-life doula and founder of Till The Last. She works as a doula privately and as a hospice and vigil volunteer for Visiting Nurse Service of New York (VNSNY). She is an instructor for the University of Vermont End-of-Life Doula Professional Certificate program as well as an established mentor in the field. She has written essays on death and the doula work which have appeared in Scientific American and has been featured in the media, including CNN, AARP, and MIT News. She sits on VNSNY’s Ethics Committee and Review Board and advises on matters of ethical significance to its hospice and palliative care program, and also works on racism and disparity issues in end-of-life care through the INELDA BIPOC Council. Virginia is passionate about increasing awareness of and sharing knowledge on end-of-life care, bioethics, and self-care.

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Dear Death, Finding Meaning in Life, Peace in Death, and Joy in an Ordinary Day is available through Diane’s website.