Virginia Chang\u2019s first real exposure to death came in 2016, when she lost three family members in seven months\u2014first her father, then her mother-in-law, then her mother.<\/span><\/p>\n “I was wholly unprepared, grief-stricken, with no coping skills,” she recalled.<\/span><\/p>\n But in this pain, Chang found a new purpose. As she grieved, she said she was “fortunate” to learn about end-of-life doulas\u2014a relatively new role in the United States (albeit one that draws from older traditions) with a focus on providing emotional, practical, and spiritual support to people who are dying, and to the loved ones around them.<\/span><\/p>\n “The first thing that came to mind was, why wasn\u2019t there someone like that for me?” she recalled. “Someone to educate me, to inform me, to advocate for me, or just to give me a hug and say \u2018I\u2019m sorry.\u2019”<\/span><\/p>\n Even though Chang didn\u2019t get that support when her parents died, she resolved to provide it to others, eventually <\/span>becoming an end-of-life doula herself<\/span><\/a>.<\/span><\/p>\n Others have been drawn to similar work after their own confrontations with mortality. For another doula, Diane Button, it was a breast cancer diagnosis. For Douglas Simpson, executive director of the International End-of-Life Doula Association (INELDA)\u2014and a trained doula himself\u2014it was his father\u2019s death, followed by his son\u2019s birth a year later.<\/span><\/p>\n In fact, since its founding in 2015, INELDA says it\u2019s trained nearly 6,500 doulas worldwide. And the National End-of-Life Doula Alliance, which was founded in 2018, has grown to more than 1,400 members.\u00a0<\/span><\/p>\n The field\u2019s growth reflects <\/span>a broader “death positivity” movement<\/span><\/a> that advocates for more candid conversations about mortality. For Chang, these trends represent a shift away from an overly medical and diagnostic approach to death\u2014an approach that has obvious value, but also risks eliminating “human-to-human, family-to-family, community-to-community contact” in how we care for each other.<\/span><\/p>\n “What\u2019s happening is, the pendulum is swinging back, and we\u2019ll find a good balance,” she said.<\/span><\/p>\n The<\/span> Independent Lens<\/span><\/i> documentary <\/span>Sister \u00dana Lived a Good Death<\/span><\/i><\/a> explores these issues in the context of a real death, following the titular Catholic nun in the final months of her life, after she\u2019s received a terminal cancer diagnosis. Sister \u00dana prepares for her death with profanity, humor, and even joy\u2014planning her funeral, singing karaoke, and taking a final trip to say goodbye to longtime friends.<\/span><\/p>\n Sister \u00dana mediates at the sea, in the documentary Sister \u00dana Lived a Good Death<\/em><\/p><\/div>\n In essence, the end-of-life doula\u2019s goal is to help a dying person find their own version of Sister \u00dana\u2019s good death. That help can take many forms: Doulas can work on “legacy projects,” allowing a dying person to explore how they want to be remembered; they can help plan end-of-life care; or they can simply sit at someone\u2019s bedside.<\/span><\/p>\n Chang, for example, said she focuses on emotional support, working with the dying to help them move from fear to acceptance, peace, reverence\u2014and in some cases, “even joy and celebration.” (Though she acknowledged not everyone can get there: “It\u2019s their journey, it\u2019s what\u2019s within their capacity.”)<\/span><\/p>\n “Death is just one day,” she said, while a doula\u2019s work can start weeks or months before someone dies; it can even start before they\u2019re sick. <\/strong><\/em><\/p>\n<\/blockquote>\n Button said the work differs depending on how close someone is to death. If they still have months to live, she might start with a legacy project. Then, when death is more imminent, her role shifts to “offering respite for the family members” and discussing the logistics of the death itself\u2014who the dying person wants in the room, how to make them comfortable, and so on.<\/span><\/p>\n One key distinction: Whatever support the doula provides, it\u2019s not supposed to be medical. In addition, Button argued that the work has to be driven by the dying person\u2019s desires and beliefs, not the doula\u2019s.<\/span><\/p>\n “We\u2019re companions to the dying,” she said. “We\u2019re never in charge, never take the lead.”<\/span><\/p>\n An end-of-life doula is there to provide guidance and support throughout the dying process. Button said that while hospice provides “the medical layer,” a hospice nurse “doesn\u2019t have time to sit with a client to write letters to family or help them with a legacy project, or go through their life and review some of those areas where they may need forgiveness.”<\/span><\/p>\n You may have heard other terms for this role, such as death midwife or death doula, but Button argued that “end-of-life” better captures the full scope of the doula\u2019s work.<\/span><\/p>\n “Death is just one day,” she said, while a doula\u2019s work can start weeks or months before someone dies; it can even start before they\u2019re sick. “Working with an end-of-life doula is about preparing and planning so that each day can be as meaningful and as full as possible.”<\/span><\/p>\n Virginia Chang<\/p><\/div>\n Currently, anyone can call themselves an end-of-life doula, no license or training required. Indeed, anyone can offer their own training\u2014<\/span>a recent essay by a retired nurse and trained doula<\/span><\/a> complains that “a role that was once fostered within an organic community is now being sold to those who can afford the \u2018training.\u2019”<\/span><\/p>\n But as the field grows, it may shift towards more professionalization and standardization; Button and Chang both noted that they\u2019re INELDA-certified, and they both teach at the University of Vermont\u2019s Larner College of Medicine, which offers <\/span>an end-of-life doula certificate<\/span><\/a>.<\/span><\/p>\n With this shift comes the question of who can afford to do the work. Simpson said there are similarities between the majority of doulas who have trained with INELDA\u2014”white women over 65 who see this as almost a second career, and who also have the financial ability to do volunteer work.” But the organization is “making every effort to change that,” for example by offering 130 training scholarships in 2022.<\/span><\/p>\n At 36, Rebecca Wagoner is hoping to become part of the next generation of doulas. Like Button, she\u2019s a cancer survivor\u2014she said she “felt really at peace with dying,” with her real challenge being how to “bounce back to living” once she was cancer-free.<\/span><\/p>\n Wagoner attended Alua Arthur\u2019s Going with Grace training retreat and currently participates in an online “death cafe” (a discussion group whose participants meet regularly for unstructured conversations about death and related topics). She said she\u2019s starting to figure out where she wants to focus her end-of-life work\u2014likely somewhere around green burials, natural death, grief, and bereavement. She\u2019s also thinking about how this work can intersect with social justice.<\/span><\/p>\n “I don\u2019t want it to be a career where you have to work for wealthy clients,” she said. “I think everyone deserves to die a death that\u2019s honored.”<\/span><\/p>\nDrawn to Be a Doula<\/span><\/h3>\n
![\"Sister](\"https:\/\/www.pbs.org\/independentlens\/wp-content\/uploads\/2024\/01\/sister-una-meditates-at-sea.jpg\")
“It\u2019s their journey”: Companions to the dying<\/span><\/h3>\n
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![\"Sign](\"https:\/\/www.pbs.org\/independentlens\/wp-content\/uploads\/2024\/01\/Signup-for-the-Independent-Lens-Insider-1-1-600x45.png\")
<\/a>\n![\"Virginia](\"https:\/\/www.pbs.org\/independentlens\/wp-content\/uploads\/2024\/02\/virginia-chang-portrait-photo.jpg\")
Training to Be an End-of-Life Doula<\/span><\/h3>\n
“Everyone deserves to die a death that\u2019s honored.”<\/span><\/h3>\n