Wait, Hold on… Death Doula? What is that?
The term 'doula' usually conjures images of birth, new mothers, and the start of life, embodying assistance, comfort, and guidance through the birthing process. Through the birthing process we see how beautiful and sacred the beginning of life is. As we navigate life, we encounter its equally beautiful and sacred sibling—death.
If we trace our family tree back far enough in time — likely right before the civil war — we’ll learn some of our ancestors were death doulas, though likely not identifying with the title “death doula”. This is because caring for a loved one at end of life was the only natural and normal thing to do. Attention is called to this very important fact because inside each one of us is the presence of a death doula whose heart knows the intuitive ancient wisdom from our ancestors on how to hold space for the dying.
“...Inside each one of us is the presence of a death doula whose heart knows the intuitive ancient wisdom from our ancestors on how to hold space for the dying.”
This article is an exploratory journey into the realm of death doulas, shedding light on who they are, their significance, the solace they bring in the face of mortality, and how talking about death is really talking about life. For a conversation about life is incomplete without a discussion about death. And a conversation about death is incomplete without a discussion about life.
So… what exactly is a Death Doula?
International End of Life Doula Association (INELDA) defines a death doula as a person who provides non medical end of life comfort care and resources to those facing a terminal illness or death. A death doula, also known as an end-of-life doula or death midwife or death coach, serves as a companion to those dying and their families across different dimensions such as emotional, spiritual, practical, physical, and mental dimensions. Death doula’s normalize deathcare by creating spaces to hold conversations in private with those they work with and in public.
“A death doula is a person who provides non medical end of life comfort care for those at end-of-life and creates space to hold candid conversations about death and dying”
Unlike medical professionals whose roles are to cure illness or prolong life, death doulas bring the remembrance that death and dying is in fact more than a medical event; It is an emotional, spiritual, and mental experience that holds wisdom. The rising death doula movement, while modern in its current form, draws on ancient traditions where it was the norm for communities and families to care for their dying with rituals and support.
“...death doulas bring the remembrance that death and dying is in fact more than a medical event; It is an emotional, spiritual, and mental experience that holds wisdom.”
Different Types of Death Doulas
The responsibilities of a death doula are as varied as the needs of the individuals they serve. Their are "Full Spectrum Death Doulas" who offer a wide range of services from A to Z. These include educating the public and professionals, planning vigils, being on-call at the moment of death, creating living wills, planning memorial services, offering spiritual support exploring existential questions or prayer, and assisting families after a loved one has passed away— just to name a few areas.
Some death doulas specialize in specific areas such as public education on end-of-life matters, providing transportation services, offering death doula trainings, solely working with death of pets and animals, working only with miscarriages or stillborns or abortions, organizing green burials, or advocating for changes in laws related to death and dying, like Medical Aid In Dying (MAID).
The common thread across all death doulas is how they provide crucial emotional support, helping individuals and their families navigate the complex range of emotions that arise at the end of life.
“The meanings of life aren’t inherited. What is inherited is the mandate to make meanings of life by how we live. The endings of life give life’s meanings a chance to show.”
- Stephen Jenkinson
Why the Role of a Death Doula is Gaining Importance
In modern society, the approach to death has undergone significant changes. With advancements in medicine prolonging life and the geographical scattering of families, the process of dying has become more isolated and medicalized. This shift has led to an increased sense of solitude and a lack of personalized care in one's final days, underscoring the growing importance of the role of death doulas.
Death Is Done Differently, Not Always For The Better
Advancements in medicine and technology, while aiming to save lives, have inadvertently shifted the experience of death from a natural part of life to a clinical battle to be fought at all costs. There exists a palpable tension in healthcare between the duty to preserve life and the imperative to alleviate suffering. Often, the scale tips towards life preservation, occasionally overshadowing the quality of life or the final wishes of the person. This impasse isn’t the fault of either party, it is the symptom of our unspoken societal agreement to exchange death discussions around the dinner table in favor of “something less gloom”, a silence that shouts volumes about our shared anxieties around mortality.
“This impasse isn’t the fault of either party, it is the symptom of our unspoken societal agreement to exchange death discussions around the dinner table in favor of “something less gloom”, a silence that shouts volumes about our shared anxieties around mortality. ”
In response to this evolving narrative around death, death doulas are emerging as champions of a more human-centered approach.
Increased Isolation, The decay of “Third Places”
This, combined with families living farther apart, and disappearance of “third places”, means that many face their final days without the close support of loved ones. The disappearance of these vital social spaces has left many without the close support of loved ones or community in their final days. The majority of people express a desire not to die in hospitals, yet, driven by a culture that delays conversations about death until it's deemed "too late," many find themselves in exactly that scenario. Hospitals become the default, fueled by convenience and a lack of resistance to systemic norms that favor life extension over quality of life considerations. Death doulas step into this gap, providing the necessary companionship and emotional support that family members historically offered.
“Hospitals become the default, fueled by convenience and a lack of resistance to systemic norms that favor life extension over quality of life considerations. ”
The Gap In The Work of Medical Professionals
Death doulas do not replace medical care but rather complement it, or pick up where medical professionals leave off. They provide the emotional, mental, spiritual support that medical professionals often do not have the time or training to offer, or perhaps are held back from offering due to legal or policy implications. Medical professionals navigate through an iceberg of legal and ethical dilemmas concerning aggressive end-of-life interventions. Doctors often don't get much training on their legal duties when it comes to making decisions about end-of-life care (CCJM). This reveals a big challenge, where death has transformed into a predominantly medical event, influenced by more factors than can be listed here… but to name a few: rapid pace of technological advancements, legal frameworks, systemic healthcare policies, and a singular focus in medical training that often neglects the multidimensional nature of dying.
Death doulas transform the experience of death from being seen merely as something medical, where it's defined by the permanent cessation of vital organs, and into a more heart-centered space that aligns with the cultural and personal preferences of the dying person. This holistic approach ensures a more dignified and peaceful death, highlighting the human aspect often overshadowed in clinical settings.
Working with a Death Doula
For those considering the support of a death doula, understanding what to expect in terms of services and costs is important.
Finding a Death Doula: Death doulas can be found through referral networks, non-profit organizations, hospice care facilities, or online directories. It's essential to choose someone whose approach and philosophy align with the individual's and their family's needs and values. Initial conversations, often offered free of charge, can provide a sense of whether a particular doula is the right fit.
Services and Costs: The services offered by a death doula can vary widely and may include everything from advance care planning and legacy projects to continuous presence during the final hours. Fees can vary depending on the services provided, the doula's experience, and the geographical location. Some doulas offer sliding scale fees or pro bono services to ensure that support is accessible to those who need it.
The End
Our culture in the U.S. has trouble with endings. We double-speak to avoid the reality that what once was… simply no longer is. We use words like transition, passage, new beginnings, transformation, evolve to make the ending or death of something more palatable.
We gather ceremoniously for a marriage, looking forward to the new beginnings of two people (or a few) becoming “one”, when it is just as much the ending of ever being with another person. Turning 18 in America marks becoming an adult, yet it is the end of ever being a child. Retirement is seen as a leisurely new chapter, yet it marks the end of one's professional identity and perhaps end of their entire life’s work. Welcoming a new child is seen as the joyous start of parenthood, yet it’s an ending to freedom and spontaneity that can only accompany a childless life. A leaf turning yellow signals the beautiful onset of fall, yet is quite literally at the end of it’s life due to a natural process called senescence (the natural aging process of plants).
“Our culture in the U.S. has trouble with endings. We double-speak to avoid the reality that what once was… simply no longer is. ”
The role of a death doula represents a compassionate response to the universal experience of endings and death, offering a source of support, guidance, and comfort to those facing the end of life. In restoring dignity and personalization to the dying process, death doulas play a crucial role in how we as a society approach and understand death, dying, and endings. Just as important, death doulas help us understand the very true fact that how we die is a consequence of how we live. We can’t talk about our death without talking about how we are living this moment right now.
As we continue to navigate the complexities of living and dying, the support of death doulas reminds us of the importance of compassion, empathy, and respect in all phases of life. By acknowledging death as one of the most natural parts of life, we can begin to embrace the end of life with the same care and reverence we afford its beginning.
