The History of Death Doulas Part II: The hospice movement

This is the second part of the 3 part blog post series, The History of Death Doulas by Catherine Durkin Robinson . You can read the first part here.

History of Hospice

Hospice care has ancient roots, with historical evidence of hospice-like services dating back to ancient Roman and Christian traditions. In medieval times, women established hospices along pilgrimage routes to provide shelter, food, and care to travelers, including the sick and dying.

“You matter because you are you, and you matter to the end of your life. We will do all we can not only to help you die peacefully, but also to live until you die.” - Cicely Saunders

The modern hospice movement is often credited to Dame Cicely Saunders, a British physician, who founded St. Christopher's Hospice in London in 1967. Saunders emphasized the importance of palliative care and introduced the concept of "total pain," which includes physical, emotional, social, and spiritual aspects of suffering.

In the mid-20th century, a growing recognition of the limitations of curative treatment for terminally ill patients emerged. Physicians like Elisabeth Kübler-Ross (author of "On Death and Dying") highlighted the need for compassionate end-of-life care and opened discussions that normalize this sacred part of life.

Spread of Hospice Care

The hospice movement gained momentum in the late 20th century, spreading from the UK to other parts of Europe, North America, and beyond. The first hospice in the United States, founded by Florence Wald, was Connecticut Hospice in 1974.

Supported by legislative changes, hospice care continued to grow. In the United States, Congress established the Medicare Hospice Benefit in 1982, providing funding for services to Medicare beneficiaries, that helped expand access across the country.

Over time, hospice care has become integrated into mainstream healthcare systems. Various settings, including freestanding hospice facilities, hospitals, nursing homes, and patients' homes, emerged to provide spaces for those at the end of life.

Photo by Jon LCE on Unsplash.

Palliative care, which originated within the hospice movement, has also evolved as a specialized medical field. It focuses on improving the quality of life for patients with serious illnesses, regardless of prognosis. Palliative care services work well with curative treatments as well as comfort care.

Cultural and Community Impact

The hospice movement has had a global impact, with organizations and hospice services established in many countries. However, access to hospice and palliative care remains uneven across different regions due to healthcare disparities and varying cultural attitudes towards death and dying.

Death doulas operate within these diverse cultural contexts quite well. We adapt our services to meet the unique needs and preferences of our clients and their inner circles. This cultural sensitivity contributes to the evolution of our role and its acceptance in various communities, especially the marginalized.

Such communities have experienced historical trauma and betrayal by the medical establishment. Especially for BIPOC and LGBTQ+ populations, a culturally attuned death doula provides advocacy and awareness. Not all, but many doulas operate on a sliding scale, which also encourages more equity in this space. Additionally, the grants given out by organizations like The Global Doula Project also help in this regard.

Overall, the definition of a death doula has evolved from a focus on emotional and spiritual support to a broader scope of services aimed at providing comprehensive end-of-life care. Death doulas continue to play a vital role with hospice in empowering individuals and families to navigate the dying process with dignity, compassion, and meaningful connection.

The Global Doula Project is a U.S. based nonprofit organization working for a world where every family receives loving, nonjudgmental support at the beginning and end of life. Catherine Durkin Robinson, the author of this piece, is a death doula in Chicago, Illinois and a 2023 Global Doula Project grant recipient. The Global Doula Project is on a mission to support as many families as possible by removing financial barriers that may stand in the way.