The first time she sat with someone who was dying, Carol Neustadt had a profound thought. “People are not dying here, they are awakening to who they truly are,” said Neustadt, 58, of Atlanta. “When we shed our bodies, we become whole and have a greater awareness of why we are here.”
For more than a decade, Neustadt worked as an end-of-life doula, aka dying doula, helping terminally ill patients in metro Atlanta prepare for death. Laypersons who are comfortable with the process of dying have always provided these services, but interest in the practice has grown exponentially in recent years.
In 2018, the nonprofit National End-of-Life Doula Alliance (NEDA) had about 200 members. As of June 2022, there are 1,500 active members, said Karen Reppen, a board member for NEDA.
Much of that interest has come from the “silver tsunami”— the increase in the senior population due to the groundswell of aging baby boomers. But the pandemic has brought end-of-life care into focus for younger generations, as people of all ages who faced death have sought assistance for themselves or others.
Since hospice care became a practice in the U.S. in the 1970s, end-of-life care has been largely concentrated in that area, but Reppen said there is a gap. “The whole system of caring for people at the end of life is pretty mucked up in North America,” she said. “They say hospice is 24/7 but it is just intermittent visits unless someone is in crisis. People are beginning to understand that.”
Reppen said end-of-life doulas can fill those gaps in care, offering time and compassion to patients and their families when it is most needed. Even those who understand the complexities of hospice care may find themselves in need of support at those moments.
When Reppen’s mother neared her final days last November, Reppen flew from Wisconsin to California to be by her side. “As much as I know about hospice and assisted living, I could have benefitted from someone like me,” Reppen said.
Unlike hospice, death doulas do not prescribe or administer medication and do not need a license to practice. There is no training required for death doulas, though there are dozens of programs that offer training (NEDA is a clearinghouse for resources but does not provide training.) Training programs can last from six weeks to six months and range in cost from free to several hundred dollars. Practicing doulas may be volunteers or they may charge hourly fees or price their services as package deals.
NEDA was created in 2017 to lead the end-of-life movement and establish standards for practicing doulas as well as connect those seeking a doula with qualified individuals. “The professional part of this is in its infancy but at the same time, I can’t see it shrinking,” Reppen said.
Neustadt began working as an end-of-life doula at a now defunct hospice facility in Brookhaven. She had always had an interest in the afterlife, she said. Her father died when she was 5 years old and she wondered what happens after we die.
In the 1980s, she did hospice work during the AIDS epidemic but it wasn’t until the recession in 2008, when the real estate market went bust, that she left the instability of that industry and returned to hospice care.
It was, she said, the most rewarding time of her life. “You are not going to make a lot of money doing this,” Neustadt said. “You really have to love what you are doing.”
She taught meditation to patients healing from cancer. She sat with patients three days a week for hours at a time and listened to their stories. Patients would see their loved ones and Neustadt developed an otherworldly awareness of the loved ones’ presence.
“I believe that when we are transitioning (to death) we are doing a lot of very important work. It can be one of the most beautiful experiences,” she said. “It was an honor to be with people at this time of transition.”
She recalled one patient who she visited at home. The patient was in the family room where everyone could gather to visit with her, but she was near the kitchen and she had once loved to bake cookies. Neustadt told her family to bake chocolate chip cookies each day so she could experience that aroma.
Neudstadt would ask what type of music her clients enjoyed. Did they have a favorite religious passage? Who did they want to be with them in these moments? She would also counsel friends and family members, letting them know what a sacred and powerful time they were experiencing and helping them understand that the patient was aware they were dying and that it was OK.
She encouraged families to talk about the influence the patient had on their lives, so the patient would know how he or she had touched people. And she helped families develop a ritual together that they could use to connect once their loved one had transitioned.
Neustadt said we need to stop making death such a somber, dramatic affair like something from a TV series. We have transitioned away from a society that held its dying in sacred ceremony, sitting with them at home until they died, then keeping the body in the home to allow visitors to pay their last respects, she said.
Now we are a nation that shies away from discussing death, often waiting too long to involve hospice care and engage others who can help us make plans, said Neustadt, who returned to a career in real estate in 2020 after helping to close down the hospice facility where she worked.
“Dying is something we should feel good about,” she said. “They have reached the finish line and now they get to go back home.”
As more of our population ages and as we face more unforeseen causes of mortality, I hope we collectively learn to embrace death as a beautiful and sacred moment, worthy of the same planning and consideration as birth.
Read more on the Real Life blog (www.ajc.com/opinion/real-life-blog/) and find Nedra on Facebook (www.facebook.com/AJCRealLifeColumn) and Twitter (@nrhoneajc) or email her at nedra.rhone@ajc.com.
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