In recent times, I came across the concept of death doula, and it caught my attention. My curiosity was stirred by the etymology of the term "doula," as it appeared unfamiliar to me. Surprisingly, its origins date back to ancient Greece, where it referred to a woman who served. Nowadays, it primarily conveys a woman caregiver. While I was acquainted with birth doulas –women who offer support to expectant mothers – the realm of death doulas, also known as end-of-life doulas or death midwives, was a novelty for me.
In my quest to shed light on this topic, I consulted the available literature to gain insights into the role of death doula alongside other professionals involved with those nearing the end of life. What I discovered was a notable change that has taken place in recent decades. In the past, when someone was dying, the community played an important role in supporting them and their family. This communal support created a sense of belonging and helped ease the emotional and practical burdens associated with the dying process.
However, over the years, there has been a shift in how and where people experience the end of life. In this day and age, a significant number of individuals die in acute care hospitals. While hospitals are equipped with advanced medical technology and skilled professionals, they often lack the communal and emotional support that was once prevalent. As a result, many dying individuals feel isolated and disconnected during their final days.
Even in settings like palliative care and hospice, which are specifically designed to provide comfort and support to those nearing the end of life, there has been a change in focus. The primary emphasis has shifted towards medical investigations, procedures, and interventions, rather than providing holistic support during this crucial period (1).
In response to this changing landscape, the presence of death doulas has emerged. Death doulas provide non-medical support and companionship to those who are dying and their families. Their objective is to fill the gap in emotional and practical matters through holistic care, which includes providing comfort, facilitating communication, assisting with end-of-life planning, and offering spiritual guidance.
The end-of-life medicalized approach has created an artificial distance and avoidance when it comes to discussing death. In the past, when dying occurred within the community, there was a more natural and open dialogue about death. However, with the increasing prevalence of hospital deaths, the subject of death has become somewhat taboo, leading to a reluctance to openly address it. This avoidance is often driven by discomfort and fear. Death is frequently perceived as a challenging and sensitive topic, akin to dealing with it in a quick and evasive manner, similar to a "hit and run" approach.
To cope with this discomfort, people often resort to euphemisms or indirect language instead of directly addressing death. Phrases like "passed away" or "no longer with us" are used as substitutes for the word "died." While these euphemisms may offer temporary relief from the discomfort associated with death, they perpetuate a cycle of avoidance. By evading open discussions about death, we are deprived of the chance to express our feelings, fears, and concerns, resulting in a sense of isolation, prolonged or even pathological grief, and an inability to accept the natural order of things.
When we are unable to openly address emotions and thoughts surrounding death, we may struggle to come to terms with our own mortality or the loss of loved ones. Grief is a natural and necessary process that allows us to process felt emotions and eventually heal. However, when the grieving process is obstructed by a lack of authentic communal support, we may experience prolonged emotional pain and unresolved grief.
Fortunately, there has been a growing realization about the importance of providing support and assistance at the end of life. This recognition has given rise to the "death positivity" movement, which seeks to foster discussions about death, dying, and our emotions surrounding mortality. It encourages people to expose themselves to these often taboo topics and explore their thoughts and feelings in a safe and supportive environment. By promoting conversations about death and dying, the aim is to alleviate the fear and uncertainty associated with this natural process. It also emphasizes the importance of advance care planning, including conversations about medical interventions, palliative care, and the option of choosing a dignified death through assisted dying or hospice care (2).
Moreover, the death positivity movement acknowledges the importance of providing emotional and psychological support to individuals who are facing the end of their lives, as well as their loved ones. It advocates the idea that compassionate and empathetic care should extend beyond physical health and encompass mental well-being during this period.
The movement has kindled various initiatives, including the establishment of death cafes, where people can gather in a relaxed setting to openly discuss death-related topics. In a recent article I came across in Psychotherapy Networker, it was mentioned that the majority of death cafe moderators are death doulas. One of the reasons for this is their ability to be good listeners and create a safe and non-judgmental space for individuals to express their feelings and experiences related to death. Death doulas recognize the importance of open dialogue about these topics and understand that it can lead to personal growth, increased awareness, and a better understanding of end-of-life experiences. Their passion for these conversations contributes to creating engaging and meaningful environments within death cafe gatherings (3).
This emphasis on meaning is evident in the day-to-day efforts of death doulas. Their mission is to craft meaningful moments for those approaching the end of their lives, in contrast to the impersonal approach commonly seen within hospital walls. Rather than treating the dying person merely as a vessel inundated with pharmaceuticals and subjected to numerous medical procedures, death doulas aspire to empower individuals to embrace their final days with grace and autonomy. They reject the idea of artificially prolonging life devoid of meaning and instead promote a more holistic and purpose-driven approach to the dying process.
I wanted to learn more about death doulas and the compassionate care they provide to individuals and families during the end-of-life process. In a world driven by the wizardry of technology overfocused on efficiency, protocols, and policies, death doulas bring back the old traditions that have been lost for many dying individuals. They draw inspiration from a time when communities would come together to support and accompany the dying. They prioritize building trust and rapport, ensuring that the dying person feels heard, understood, and validated in their fears, hopes, and desires. By fostering open and honest conversations about death, they help individuals, and their families navigate the emotional complexities that arise during this time (4).
1. What role do Death Doulas play in end-of-life care? A systematic review, by D. Rawlings and al., Health Soc Care Community, 2019;27: e82–e94
2. The Death Positive Movement Encourages Us To Face Death Directly, by Tai Gooden, Nerdist, Nov 25, 2020
3. Let’s Talk About Death—and Pass the Cookies, by Chris Lyford, Psychotherapy Networker, November/December 2023 (pp.11-14)
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