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Filling a Critical Gap in End-of-Life Care

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By Cabot Creamery Co-operative

Death is a natural part of life. Even so, talking about death feels anything but natural.

According to the National Palliative Care Center, 20 percent of the United States’ population will be over age 65 by the year 2030—that’s more than 60 million people. Chances are, a significant portion of these seniors will be diagnosed with a terminal illness.

A recent article in the New York Times reported that, on average, patients make 29 visits to the doctor’s office in their last six months of life, even though 80 percent of patients say they hope to avoid hospitalization and intensive care at the end of life. Our healthcare system is designed to save lives—or attempt to do so—regardless of the outcome or impact on a patient’s quality of life. However, our healthcare system is only beginning to recognize the value of high quality end-of-life care.

Fortunately, there is a growing movement that helps fill the critical gap in end-of-life care. For the terminally ill, dying is a process they’re living through. End of-life doulas (also known as death doulas, soul midwives, transition coaches, and more), help the dying live better throughout the process—and ultimately die well.

For the farm families who own Cabot, life and death are a part of everyday life. From their animals to the generations of family who have run the farms, Cabot farmers have a unique perspective on dying and want to help others have better conversations around the topic, including the Death Over Dinner Project, an interactive conversation with dozens of medical and wellness leaders about end-of-life care.

Here are 3 things you might not know about end-of-life doulas:

End-of-life doulas are in demand.

The word doula, which comes from the ancient Greek word for servant, is traditionally associated with childbirth. In this context, a doula provides emotional and physical comfort and support to a mother before, during, and immediately after childbirth. End-of-life doulas serve essentially the same purpose, but at the opposite end of the life cycle. They provide care and support for the dying and their family, guiding them through unfamiliar territory and making the transition as physically, emotionally, and spiritually peaceful as possible.

End-of-life doulas don’t replace palliative and hospice care providers.

Instead, doulas work alongside providers to ensure the holistic comfort of the dying. While many end-of-life doulas come from nursing or therapeutic backgrounds, it’s not a prerequisite, as their role as a doula is not medical. While other caregivers focus on the body, end-of-life doulas focus on the soul. The role of a doula might be best described as faithful companion, or friend in death. Being physically and mentally present for the dying is their first priority. They may be part of a broader support system, or they may be the only one there to hold a hand. The process of dying is deeply personal, and as individual as each of us. Doulas adapt to meet the needs and wants at hand.

Professional end-of-life doulas receive training and certification.

Compassion comes naturally, but anticipating, understanding, and supporting the needs of the dying, and often their families, takes specialized skills, training and education. Several end- of-life care certification programs exist in the United States, including the University of Vermont’s (UVM) End of Life Doula Professional Certificate.

UVM’s certificate program comprises eight-weeks of interactive online content based on a comprehensive curriculum that includes:

  • Death Awareness
  • Commonalities in the End-of-Life Experience
  • The Grief Continuum
  • Dignity Therapy
  • Holding Space/ Honoring Sacred Space
  • Religious/ Cultural Beliefs and Practices
  • Preparing for Loss
  • Bereavement Support and Much More

Program graduates come away prepared to meet the growing demand for meaningful, compassionate end-of life care.

“Death matters. It’s a meaningful, emotionally-complex, natural part of life,” says end-of-life doula Francesca Arnoldy, who orchestrated the UVM program in association with the UVM Larner College of Medicine, UVM Continuing and Distance Education, and Cabot Creamery’s Centennial Legacy Projects. “Doulas understand the importance of the experience—for the person dying and for those being left behind. They provide a hand to hold, a listening ear, and nonjudgmental, compassionate understanding during the dying process—aiding comfort, relieving anxiety, while helping to shift our culture’s fear of death into empowerment.”

Learn more about the End of Life Doula program at UVM.