Meredith Lawida still remembers the myriad of emotions she and her family experienced four years ago when her father-in-law’s health declined. Consumed by fear, exhaustion and uncertainty, they were unsure how to best support him during his last days, while also navigating their own grieving process.
“He had been in and out of hospitals and then one day he was gone,” Lawida says. “And while he received wonderful care, I felt there was a gap between the medical treatment he received and the emotional support our family so desperately needed.”
As Lawida began to process the loss of her father-in-law, she realized that death, like birth, is a life transition. Yet when she welcomed her son into the world, she and her husband had received support from a birth doula that had not only guided Lawida through a difficult natural childbirth, but also stood by her side physically and emotionally.
“I thought, ‘Why can’t there be something like that for the dying and their families?’” Lawida says.
It turns out there was.
Helping Families Cope With Death
Shortly after her father-in-law’s death, Lawida learned about the work of Henry Fersko-Weiss, a licensed social worker, who had created the first end-of-life doula program in the United States at a New York hospice in 2003. In addition, Fersko-Weiss also began offering end-of-life doula training programs where volunteers were trained to recognize the signs of approaching death and how to ease the stress and anxiety of hospice patients and their families.
When we first meet with families, we talk about the legacy the patient hopes to leave for future generations.
— Meredith Lawida, INELDA
While end-of-life doulas, also called death doulas or death midwives, aren’t medical professionals, they can supplement the work of hospice staff by providing ease and comfort to patients and their families. These doulas come from all walks of life — many are nurses or grief counselors; others such as Lawida, a former technology professional, have experienced loss and want to encourage conversations and decisionmaking about dying so patients and families can make their last days and the bereavement process more meaningful.
Each doula’s services are tailored to the specific needs of each patient and his or her family. They can include helping to create a death plan and caring for patients whether in a hospital or at home. Death doulas provide spiritual, emotional and psychological care to patients and their families, and can help plan home vigils and funerals.
Fees for their services also vary widely; some charge per hour, others offer packages for specific services, and some work on a volunteer basis or waive their fees for families who can’t afford their services.
After Lawida went through end-of-life doula training, she knew she had found her calling. When Fersko-Weiss decided to launch the International End-of-Life Doula Association (INELDA), a Wycoff, N.J.-based nonprofit, Lawida was hired as the organization’s executive director.
“Our goal is to one day have end-of-life doulas offered as part of the standard of care in hospices and assisted living and skilled nursing facilities around the world,” says Lawida.
She says INELDA uses a three-step process to helping families with end-of-life planning.
“When we first meet with families, we talk about the legacy the patient hopes to leave for future generations, and then we work with the family to create a meaningful tangible product that serves as a testament to their loved one’s life,” Lawida says. “This might be a ‘life scroll’ (a long piece of fabric that features photos and memories of the patient) or a book of collected stories about the patient that we gather from friends and relatives.”
Lawida says working on the legacy project is extremely cathartic for families, and can help lead into the second step of the process, when the doula works with patients on their end-of-life plan.
“We ask what they would consider to be a good death — this may involve being in their home, with their bed next to the window, having their favorite music playing,” Lawida says. “We also talk with families about their wishes. Often adult children live out-of-state and want to know their parent won’t be alone when they die.”
Lastly, Lawida says that doulas work with families for three to six weeks after their loved ones die to offer emotional, physical and spiritual support as they grieve.
Making Death Less Painful
Deanna Cochran, a former hospice nurse from Austin, Texas, became an end-of-life doula after her mother’s death. She now works with patients who call on her to help them write advanced directives, plan funerals and prepare their family for their passing.
Cochran notes that death is a topic many people continue to feel uncomfortable addressing with their loved ones. Doulas can break the ice and serve as an impartial third party who facilitates conversations about end-of-life wishes.
“I started my private practice, A Gentle Guide, to help other families have the same end-of life experience that my mom had,” Cochran says. “My mom didn’t want to die in a hospital. She got to stay in her home with her family and dog and to remain comfortable, despite having an aggressive cancer.”