In a recent episode of the popular HBO Max medical drama “The Pitt,” an emergency department nurse moonlights as a death doula for a woman with terminal cancer. While birth doulas have become a familiar part of modern health care, the idea of a death doula — someone who supports people through the dying process — may be less familiar.
“A death doula is a calm, compassionate presence who can be there for dying people and their loved ones in their final moments,” said Kristen Patterson, a death doula and end-of-life planner in Northern Virginia. From advocating for patients with medical providers to offering emotional comfort through reading or playing music, death doulas can support both the dying person and their caregivers.
Death doulas are not medical professionals, and their level of training can vary. (They also are generally not covered by insurance.) There’s no national board or official certification, but there are a few respected programs that provide baseline training. Patterson recommended looking for a doula who’s a member of the National End-of-Life Doula Alliance (NEDA) or the International End-of-Life Doula Association (INELDA). She also suggested interviewing a few options to find someone who shares a similar approach and communication style — and cultural and religious values, if that’s important to you.
You can hire a death doula anytime after a terminal diagnosis, but it’s more common during hospice care, which is end-of-life care for people with a life expectancy of six months or less that focuses on providing comfort and quality of life rather than a treatment or cure. “People don’t always realize hospice isn’t 24/7,” said Patterson. “A death doula can be there as much as you want them to.”
Given their close work with dying people and their families, death doulas have a unique perspective. Below, they share insights into what they’ve learned about the end of life.
Dying can be peaceful
While it can be uncomfortable to think and talk about, death is an everyday, shared human experience — one that the body is equipped to do. “Just like the body knows how to be born, it knows how to die,” said Diane Button, a death doula in Northern California, author of “What Matters Most: Lessons The Dying Teach Us About Living” and instructor at the University of Vermont.
For people with terminal diagnoses, the transition may even feel like a much-needed reprieve: “Many people are relaxed in the end, because they’ve been living in [sick] bodies and it feels better to die than keep living,” said Jill Schock, founder of Death Doula LA.
Whether it means apologizing to a friend you’ve wronged or finding closure with an estranged relative, prioritizing important conversations while you’re healthy can also put you at ease when your time comes. In the end, Button said, most people aren’t concerned about vacations they didn’t take or money they didn’t earn, but many express regrets about things they left unsaid. “If you are at peace with your life when you’re dying, the death process can be more peaceful,” she said.
You can personalize your death experience
When you have a terminal illness and are on hospice care, you can plan your dying experience. Even if you’re spending your final days in a hospital, you can play your favorite music or fill the room with things and people you love (sometimes, even pets). This can be comforting to both the person dying and their loved ones.
Erica Reid Gerdes, founder of Waxwing Journeys in Chicago, explained how one client’s husband found comfort in the fact that they could play music from his wife’s favorite musical, “Hamilton,” and read her favorite books to her in her final days. “She was so clear about what she wanted, and though she was unresponsive, we knew she could still hear,” said Reid Gerdes.
It doesn’t need to be painful
When a person is in hospice, medication is meant to manage symptoms — including pain. “People may have witnessed the painful death of a loved one decades ago, but medication can do a great job of minimizing suffering,” said Button. Part of a doula’s job is to help make sure a dying person has sufficient pain medication and is not hurting during this time.
Medication can also create a calmer experience for the dying and their families. It’s common for dying individuals to experience agitation; they may pick at their clothing or claw at their bedsheets. This is called terminal agitation and can happen as organs shut down and affect brain function. Medicine can “help the dying person relax and feel at ease during the process,” said Schock.
It’s normal to stop eating and drinking near the end of life because the body needs less energy, and swallowing may be too taxing. In other words, Schock says, you don’t have to encourage someone who’s actively dying to eat or drink — it doesn’t cause the pain or suffering it might cause to someone in different circumstances.
A sudden, final surge of energy and lucidity is normal
Dying people frequently experience a sudden surge of energy, typically a few days before death. Sometimes called an “end-of-life rally” or “terminal lucidity,” this happens when, after not eating or talking much, someone perks up and begins acting like “themselves” for a short period of time. Loved ones may mistake this as a sign the person has suddenly started improving, but in reality, it can mean the body is moving toward death.
This temporary surge can be a great opportunity for loved ones to connect and create memories. “I was with my grandmother when she was dying, and she suddenly opened her eyes, and we had two days of lovely conversations,” said Patterson.
Dying people may feel or see loved ones who have passed
A few of the death doulas we spoke with recounted that some of their dying clients have reported seeing deceased loved ones in the days before they died. Button recalled seeing clients reach out for someone who died decades ago, or calling out a passed relative’s name.
Some people believe these are hallucinations, said Reid Gerdes, while others believe previously lost loved ones are visiting to welcome the dying person to the afterworld. If it happens while you’re with a dying loved one, Reid Gerdes said, welcome it, no matter which camp you fall into. “Listen to them talk about it, because for them, it is real.” This is a way to honor their experience and show respect during the dying process.
Hearing is often the last sense to go
In the days before death, there will probably be signs that a person’s body is slowly shutting down. First, they may refuse food and drink because the process is too tiring. Most people begin “sleeping” and are unconscious about 48 hours before dying, Schock said. A few hours before death, the sound of someone’s breathing may become rattly because they aren’t strong enough to clear throat congestion. “It doesn’t hurt the dying person, but it can be disturbing to hear,” said Reid Gerdes.
Speaking of hearing: This sense usually remains until the very end. Button said she has seen an unconscious, dying person smile upon hearing a loved one’s voice. “It can comfort people to let them know you’re there with them and you love them,” she added. “Often, they need permission to leave, so it can help to let them know you’ll be okay.”
After someone dies, they may let out a sigh. “That’s just air moving around their body,” said Schock. Sometimes, the body may leak fluid. It’s also relatively common for people to die with their eyes partially open because they were too weak to fully open and close them before death. If needed, a loved one can gently close the person’s eyes.
Thinking about death while you’re alive can make it less scary
Many cultures see death as a positive experience or transition, not something to be feared. While your own end of life can be hard to think and talk about, death doulas encourage doing both. One of the best ways to experience a peaceful death — and a fulfilling life — is to contemplate your own mortality regularly. “The more we allow ourselves to talk about death in every way, the logistical realities and emotional connotation, the less scary it is,” said Reid Gerdes.
While everyone’s death is different, Button said most people have the same concerns: Did I love well? Did I make a difference? Did my life matter? She encourages people to picture themselves at the end of their lives and imagine what they’ll be thinking “so they can understand some of what will matter to them at that time,” she said. “Remember, you’re living and have opportunities to experience meaningful everyday moments up until your last breath.”
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