What is a death doula? The growing field for end-of-life care explained

Death.

It's generally a topic that most people don't like to discuss, but what if there was someone who could help you navigate the end of your life?

Beyond medical professionals, a growing group of people are devoted to helping dying people and their families: death doulas.

Similar to how a birth doula will help expecting parents give birth and welcome their child into the world, death doulas help people as they face the anxiety and fear that comes with preparing to leave the world.

What is a death doula?

Vanessa Carlisle, a writer and death doula, said a death doula has no strict guidelines or laws to follow, but they are mostly there to help people and their loved ones deal with their future death.

"A death doula is a person who helps support the dying or their loved ones through the end of life," Carlisle said. "And there's lots of different ways to provide non-medical support. So maybe a doula does bedside care. Maybe a doula comes in and helps with conversations about end of life planning. Maybe a doula helps create a safer, more beautiful space for the dying person as they go into hospice. There's lots of different ways that doulas can show up to help smooth the path."

For Carlisle, part of the job is to promote death positivity. Like giving birth, death is often depicted in movies and TV shows as unrealistic. The death positivity movement seeks to provide people a more accurate depiction of the universal human experience.

"But mostly what the death positive movement is about is about people taking responsibility for this universal human experience, understanding that the more we know about it and the more we know about what our options are, the better we can take care of each other," Carlisle said. "And what a gift it is to be a person who actually has information about something that we're not getting good education about elsewhere.

Changing the approach to end of life

For most of history, people typically died in the home -- surrounded by loved ones.

And many people who work in the space say that move to dying at a hospital or hospice has led to increased anxiety around dying.

The trend first started in the 20th century with embalming, and the "outsourcing" of funeral and mortuary work.

"So before people were getting embalmed, if someone died, they died at home," Carlisle said. "They weren't carted to a hospital, they usually died at home. And loved ones would gather and they would be laid in state in the living room, or we call it the living room, but it's where people put their dead bodies a lot of the time and the living would gather around the dead. And so prior to the early 20th century, children were in presence of death regularly. They understood death."

Often times, the deceased person's body would stay in the home for a few days as funeral and burial preparations were made as well.

Outside America, in countries like India, death is still mostly handled by the family, and typically does not occur in a hospital bed.

Resham Mantri, another death doula, writer and artist of Indian descent, experienced the difference when she lost their grandmother and father in the same year. Mantri was able to help care for their grandmother as she died in Mumbai, but their father spent time in a New York City hospital toward the end of his life. However, Mantri was able to bring their father home in his last month of life, proving to them the power of a more spiritual death.

To Mantri, death is not just a medical decision, but also a spiritual one, something that can get overlooked when dealing with America's medical system.

"We don't really talk about the impact of capitalism and health insurance on the medical care system," Mantri said.

Mantri said part of their job is to ask questions for people that they otherwise could or would not ask.

"I think when someone I was working with their dad didn't have health insurance and was dying here in Queens, there was just a lot that they didn't feel empowered to ask even the doctors or the medical care professionals," Mantri said. "So I would be just like on standby if they had questions. I would sometimes join conference calls with doctors. So just saying that like they don't think that they would have even been able to ask questions that they had if not for someone like affirming that they have the right to ask these questions."

Dealing with their own mortality

For Carlisle, they said they fear how they will die, but no longer fear death because they have spent a lot of time dealing with their own mortality.

"When and how and where and in what way. Do I get to have a long life and a slow end of life where I've got to do all of my plans? Or is it gonna be an accident? Is it gonna be an illness I don't know about, right?" Carlisle said. "All of those things are scary. They're scary for me in the same way that they're scary for anybody else. But I do spend time with that fear. So am I afraid of death? Sure, I'm afraid of what comes just before. But death itself, I don't feel as afraid of because I've spent quite a bit of time now thinking it through and doing some acceptance of the fact that there's a huge mystery there that no one can tell me anything about."

Mantri has items and photos from their dead loved ones, which not only helps her but also helps their patients as they deal with death themselves.

"I don't have a lot of things that I carry with me. I kind of figure it out as I go. But there are some things that are just meaningful to me," Mantri said.

Preparing for death

According to Carlisle, unless someone dies in a surprise accident, there is work involved in the dying process.

"There's another way to have a relationship with the end of life, which is that there are certain things that I can do and there are certain things that I simply cannot and if this is what's in front of me, if dying itself is what's in front of me, maybe I will focus on having dying itself be an act of love and courage and creativity," Carlisle said. "And if it's possible to do that, a doula is somebody who can come in and support that, support clear communication with loved ones, support a legacy project, you know?

"Maybe the dying person wants to write letters to loved ones or collect photos, record some stories, right? Creating sort of a legacy project is something a lot of doulas do. Creating space where the dying person gets to really enjoy the room that they're in and what's out the window and what the foods are that they're still able to eat, those kinds of things," Carlisle said. "And those feel like a good use of time. That doesn't feel like taking time away from living. that feels like doing dying as a living person until dying is exactly what's happening, right? So I think that dying people do perceive time a little differently."

Mantri recommends seeking palliative care as soon as a dying person's diagnosis is confirmed. They also said dying people should ask doctors difficult questions and seek people in the community who have experience with death.

"And you can get support in this transition to death. In many different ways, it doesn't have to be necessarily a death doula, but you can get support in this transition and you deserve to get that support if you need it because the way we live right now is not always conducive to having these conversations and to taking the time you need to process," Mantri said.

Becoming a death doula

There are no government requirements or anything of the sort in becoming a death doula. To become a death doula, a person just needs an interest in doing so.

Carlisle said they had an interest in death long before actually becoming a doula. And Mantri said they started becoming a death doula after their father died and a funeral director told them that they had a capacity for becoming a doula. As part of the grieving process, Mantri took an interest in the dying process and went from there.

Most doulas undergo training programs put on by organizations such as the National End of Life Doula Alliance.

Finding a death doula

Death doulas are more likely to be found in urban areas, because that is where most training programs are, Carlisle said.

Death doula organizations typically have directories with names and information for death doulas in your area.

If you want to do more research on the practice yourself, Carlisle said people can do reading on their own to better prepare for their end of life experience.

"There's lots of books about death and dying and most of them have resource lists in the back that will help you find more information or more people," Carlisle said.

Interviews for this article were conducted by Janine Doyon and Erin Panell.