Erin Chan Ding is a Chicago-area journalist and editor who writes about travel, fitness, trends, tech, and the intersection of race and identity.
End-of-life midwives ease the final passage with compassion
On Saturdays, Don Meints found special pleasure in baking bread, especially with his four daughters. He loved working out any stress from his job as a teacher by kneading his frustrations into dough and turning it into cinnamon rolls, kolaches, and scones.
“It was a variety of bread,” says his wife, Helen Meints, 87, who lives in the western suburb of Geneva. “Every Saturday, he was always baking.”
As Don’s health declined due to complications from diabetes, Parkinson’s disease, and a blood cancer, he confided his wishes to Molly Graff, an end-of-life doula. During his last days on earth, he wanted the smell of bread baking to surround him.
It’s these particular details that end-of-life doulas like Graff focus on bringing to fruition. Sometimes called death midwives, end-of-life doulas provide emotional, spiritual, and physical comfort to people as they transition from life to death.
An important role
Before Don passed away in January 2020 at age 89, Graff — owner of HeartStrings Inc., a supplier of end-of-life doula services — began by asking Don’s daughters if they could find a scented candle that smelled like cinnamon rolls. That idea did not go over well.
“All of them said at the same time, ‘Oh, he would hate that!’” Graff recalls.
And so, the sisters decided to bake bread in their mother’s apartment and bring loaves to their father’s bedside in the skilled nursing section of GreenFields Geneva, where he stayed during his final days.
Just as birth doulas coach and comfort, death doulas provide a similar service, albeit at life’s other bookend. End-of-life doulas don’t replace medical treatment teams, social workers, or hospice staff, but instead focus on the needs and desires of people near death, along with their families.
“Dying is not a medical event,” says Graff, 73, of Geneva. “It really is a social-communal event. It’s something that happens naturally.”
Yet, while the medical community tends to focus on disease, Graff and other end-of-life doulas focus on the person. “In the dying process, I’m going to look at the pain issues. I’m going to look at the sleep issues. I’m looking at the nutrition issue. All three of those things really will affect the dying process,” she says.
Most people pay out-of-pocket for end-of-life doula services, as private insurance, Medicare, and Medicaid do not currently cover this care. Fees vary, but typically range from $50 to $150 per hour. Graff says her clients typically spend less than $1,000 total for her services, including an initial consultation that lasts three hours and costs $250.
Some practitioners use the term death midwife, instead of end-of-life doula. Angie Buchanan, a death midwife in the Milwaukee suburbs who works with families in northern Illinois and southern Wisconsin, says death midwives fill important roles when it comes to end-of-life conversations.
“Generally, the death midwife fills the gap between the medical profession and the funeral industry,” says Buchanan, who also trains others and runs The Death Midwife website and directory.
People plan other life events, she says, but often exclude death. “This is our final rite of passage. We celebrate birthdays, we celebrate retirements, anniversaries. And then we act like we’re not going to die, and we refuse to have those conversations. I think we’re missing out on a lot by being in death denial.”
With clients and their families, Buchanan discusses emotional issues, such as making sure individuals see people they want or repair frayed relationships, as well as practical topics, such as making sure paperwork is in order. She also helps create a comfortable, uncluttered space in which the dying person can see their loved ones for the last time.
Graff adds that she often discusses hospice care, which focuses on making sure people are as comfortable as possible with a terminal illness. While hospice also may include spiritual care, it focuses on medication and healthcare assistance to ease the pain.
Compassionate communication
Graff describes her services as “care coaching” — supporting and guiding dying people and their families, asking questions that they might not be comfortable discussing otherwise. “It’s important to recognize that the role of a care coach is truly that, to provide care and coach at a time when the family might be feeling overwhelmed and uncertain,” she says.
A year before Don’s death, Graff began speaking with him about what he wanted the end of his life to look like. “I think it was good for Don to talk about it and express how he felt,” Helen says. “He could talk about dying. He could be honest about his health conditions. There were things he could talk about with her that maybe he wouldn’t talk to me about because he would think that I would worry.”
Graff and Don worked together on his legacy box — a memorial for his family composed of items meaningful to him. Don included CDs of his grandson playing the organ and items from his U.S. Navy years.
In Don’s final days, Graff invited family members to participate in a ritual called “blessing for one near to death.” They blessed him with holy oil, telling him why certain parts of his body were special. Helen went first, dipping her finger into the oil, brushing it onto her husband’s hands and arms. “When we first began as a family, he often held you in his arms,” Helen told her assembled children and grandchildren.
Having Graff as a doula helped the family to navigate the end of Don’s life. They took comfort knowing that Don had prepared himself and was not afraid of dying.
Helen called Graff a good friend. “She cared, certainly, not only for Don and me, but she cared about our family.”
