A Durham, North Carolina death doula describes how families are often left unprepared, why “active dying” can last up to two weeks, and what it means to plan for a peaceful end—long before the crisis hits.
For Jane K. Callahan. the job started with a silence she still remembers: in 2009. she got a call that her mother was in the hospital. Her mother would die two weeks later. Callahan was 27 years old. During those two weeks. she says. she learned how broken the healthcare system can be when it comes to helping people die—not just trying to fix them.
What she couldn’t accept then was the uncertainty. She didn’t understand what was happening to her mother’s body because she had no knowledge of how the body dies. and she struggled to get clear answers from doctors. She says no one told her her mother was dying until toward the end—while she was still waiting for her mother to be discharged.
After sitting with that experience for a couple of years, Callahan became pregnant and had her son. She did not have a birth doula. Things went wrong. and she found herself researching doulas. noticing how much support could be built into the process before things turned dire. That’s when she learned about death doulas—trained using the birth doula model—and the gaps she says she felt in the last two weeks of her mother’s life suddenly became clearer.
Callahan attended a training and began volunteering with hospice. She has been doing it for eight years.
She describes death doula work in practical terms—solace and companionship for patients and their families, help with logistics, and mediation with medical staff—but what stands out in her account is the timing. She is often brought in late.
“When a family is in crisis. ” she said. she’s frequently called at the “11th hour. ” when there’s only so much she can do. She attributes part of that to a lack of awareness and says people are referred to hospice way too late. with denial still high. She called that hard—because she can see how differently things could go if hospice referrals came earlier and families were not left to absorb the end of life all at once.
The work, she adds, comes with its own kind of emotional cost. She doesn’t claim comfort with death so much as comfort with discomfort. “We’re not untouched by the work we do,” she said. Losing someone she has worked with is very hard. Watching people suffer and die is hard too. Still, she says, the skill is learning to sit with discomfort and accept the reality of it through practice.
Callahan’s account also pushes back on the idea that thinking about death means obsessing over it. She pointed to Bhutanese culture, where people are encouraged to think about death five times a day. But she doesn’t argue for that kind of constant mental rehearsal. “Do I think it’s mentally healthy to just spend your entire day every day thinking about death?. No,” she said. Her view is more about steady awareness—knowing that time is limited and that “it can end at any time—today. even”—and letting that awareness sharpen gratitude in everyday life.
In her telling, the point is not to erase fear. It’s to prevent fear from turning into chaos.
For Callahan, one of the final fears people carry is finality—the sense that they will never see someone again. She said she doesn’t try to answer the afterlife question for clients. Doulas are trained not to provide a direct response when someone asks. “Do you believe in an afterlife?” Instead. she says. they should reflect the question back: “Why is that important to you?” The reason is simple: she describes her role as facilitating what someone wants. not steering them toward someone else’s beliefs.
Before she began the work, Callahan said she was a hardcore atheist. She is not anymore. She doesn’t claim certainty about what happens after death—she says she can’t “put my finger on” it. But she describes what she has seen during dying itself. When someone is in what she calls “active dying”—which she said can last up to two weeks—the person “looks different.” She acknowledges it’s not scientific. but she says there is a moment where consciousness fades and it can feel as if the person is halfway somewhere else.
Right before death, she describes what she calls a brightening—a clarity in appearance. She doesn’t call it glowing. She compares it to the way someone looks when they’re in love, as if something shifts in them. Then. after the person dies. she says. in the minutes afterward. their face has not changed at all. “They’ve just died. but something looks and feels different.”.
She said that is comforting in a limited way: there will always be fear if the “light switch turns off and there’s nothing.” But she calls it a “win-win” in the sense that if there’s nothing, she won’t know what she’s missing—and if there’s something, then that would be good.
The best part of the work. she said. is the difference it can make for patients and families at the end of life. Losing someone you love is sad and sometimes tragic, she said. When a doula is involved early enough. she argues it doesn’t become a trauma in the way she says it can without death doula care.
“It’s really about giving what control is left in these situations to the dying person,” she said. It’s also about avoiding panic and chaos by thinking ahead and talking things through.
That planning can be as small as a soundtrack or as serious as paperwork. Callahan described a family she learned from because they engaged her early—something she says is not as common. The case involved two adult children whose mother had terminal cancer and was still being treated with chemo. She also had other health issues, and the families’ medical teams were not speaking to each other. Callahan said the family was low income, with issues around housing and transportation to chemo appointments.
She described her role as stepping into the gaps: asking practical questions such as whether advanced directives exist. then working on transportation options. She said both adult children were working full time—one dipping into the 401k to pay for care. the other taking a second job driving Uber at night.
When the mother enrolled in hospice. Callahan noted a misunderstanding she sees often: most people get home hospice. meaning they die in their own homes and the hospice team comes to them. Many people think that means 24/7 care, she said, but it doesn’t. A nurse comes toward the end. one hour a day. and the other 23 hours are on the family. who she says have no caregiver training. Without money for help, she said, the pressure can become crushing.
Callahan also described creating what she calls a vigil plan—or a death plan—with the dying woman. The details were specific. The woman loved country music, so they made sure her favorite musicians were playing. She loved roses, so they used a rose candle. She wanted fuzzy socks and a fuzzy blanket for comfort. Callahan said they talked about touch: “Yes, hold my hand, but don’t touch my feet.”.
The plan included choices about who would be in the room. Callahan described two different desires she hears frequently. Some people want friends and family coming and going, laughing, telling stories, looking at photos. The woman in this case wanted fewer people—she wanted her dignity. As she moved into active dying. Callahan said. she wanted only a couple of people around her and didn’t want anyone else coming in and out.
That, Callahan said, is what planning can protect: control, dignity, and fewer surprises. When she speaks with someone who is new to dying—someone who has never died before and doesn’t know what to ask—she said she knows what they don’t know. and doulas can help them think ahead. Doulas learn people’s differences too, she added. Some want company and storytelling; others find it exhausting.
She offered another example from her own “death plan.” She said she wants lots of plants around her because she likes plants. She wants Christmas lights because she associates them with comfort and coziness. The underlying point is imagination—how hard it can be for people to picture their own death until someone helps them open the door at a pace that works for them.
Callahan also tied her work to a public effort she calls the death-positive movement. It isn’t about being excited about dying. She said it asks people to understand dying is inevitable as part of being human—and that people can still be scared and grieve that the end will come. What it’s really about. she said. is encouraging education and conversation: talking with parents about what they want at the end of life instead of guessing.
Her account also brought attention to what she sees as structural barriers that make “a good death” harder for some families than others.
She said doulas are not covered by insurance, Medicare, or Medicaid. That means doulas either work pro bono, offer a sliding scale, or serve only families who can afford them. She said that can exacerbate a division between the “haves and have-nots” when it comes to end-of-life care.
Callahan said she charges sometimes if a family has sufficient funds. but she doesn’t charge a lot of the time and described it as a personal choice. She said there are people who can make a living off the work. mostly in large metropolitan areas where there are more potential clients. and where more people die. In smaller towns, she said, it’s far less possible. “Only so many people are dying. ” she said. and only some dying people know about a doula or want one—and only some can afford one.
Training and standards, she added, remain inconsistent. She said there is no national standard, no state standards for death doula work, and no formal or formally recognized licensure. She pointed to that as part of why doulas are not reimbursed.
She described how trainings are offered by a couple of major organizations across the country. and how death doula schools have also popped up online. But the courses vary in content, quality, and cost. Some curriculums cover topics others don’t. She said some people take training and immediately market themselves. while there’s no clear pathway to hands-on mentorship or apprenticeship.
By the end of the conversation, what lingered most was her insistence that end-of-life care isn’t just medical. It’s personal control—talked through before the crisis arrives.
When she remembers her mother’s last two weeks in 2009, she doesn’t describe it as a single failure. She describes it as a system that didn’t help her understand what was coming. didn’t tell her clearly until it was nearly over. and left her unprepared. Eight years into death doula work, Callahan says her goal is to change that. Not by promising answers about what happens next. but by helping families face what is here—before the last hours steal the ability to choose.
death doula end-of-life hospice palliative care Durham North Carolina death-positive movement advanced directives active dying