Portal de Periódicos da CAPES

Doulas Partner With Practitioners to Support Peaceful Dying

2016; Elsevier BV; Volume: 17; Issue: 12 Linguagem: Inglês

10.1016/j.carage.2016.11.008

2377-066X

Joanne Kaldy,

Grief, Bereavement, and Mental Health

Geri Topfer experienced “extreme pain, agony, sadness, fear, and depression” when her 73-year-old mother died recently. But she was able to balance her grief and loss with an “abundance of gratitude, love, and joy,” due in large part to the presence of an end-of-life doula. End-of-life doulas are care team members dedicated to serving patients and families during the time a patient is actively dying. They support the dying patients and their loved ones with a unique focus on planning, resolving issues and unfinished business, conducting vigils, and reprocessing the death with loved ones afterward. “This was started in the early 2000s. We thought that this is so valuable for births, why not for deaths? We created a model and brought it to hospices,” said Janie Rakow, president of the International End of Life Doula Association (INELDA). The concept soon took off. “We have trained approximately 250 doulas in the last year and a half alone, and we’re training more every month all over the country. We also are contracting with many hospitals, hospices, and communities. This is a growing field,” said Ms. Rakow. Typically, doulas are volunteers at hospitals or hospices, but they are specially trained, educated members of the care team. They participate in team meetings and interact with staff on a regular basis. “Often, we meet with staff to share updates and discuss issues or concerns that arise. Nurses and social workers are especially happy to have us involved. Their plate is so full, and we can alleviate their workload by helping with quality of life and comfort issues,” Ms. Rakow said. Patients and families can always refuse a doula’s services. When they say ‘yes,’ the doulas will customize their involvement to the family’s wishes and needs. “Sometimes, families will be unsure at first, but they come to be beyond thankful for the doula’s involvement. We sit with the patient so the families can get rest or go eat. We talk to family members about funeral planning, addressing loose ends, and finding ways to honor their loved one. Sometimes, we just sit and talk with them. We often get deeply involved in their lives,” Ms. Rakow said. For example, “We had a family whose mother was dying of cancer,” she recalled. “We were called in pretty early, so we got to know her and the family quite well. Her daughter was concerned about how she could honor her mom’s life. We talked and decided on a memory book.” The daughter emailed relatives and asked them to share stories about her mom and compiled these in a tome. Ultimately, the family presented the book to their mother at a holiday dinner. The mother kept the gift by her bed, and the doulas would “read these beautiful memories to her as she was dying. The family was present for the final minutes, and it was a beautiful, beautiful passing,” Ms. Rakow said. ‘We sit with the patient so the families can get rest or go eat. We talk to family members about funeral planning, addressing loose ends, and finding ways to honor their loved one.’ Emotions can be high and feelings raw when a loved one is dying, but the doulas try to avoid the role of referee. “Sometimes there is infighting among siblings and other family members,” Ms. Rakow said. “We try to remain neutral and stay out of family dynamics, but sometimes we get pulled into situations. Families may forget their loved one is in the room dying, and we have to remind them that we are there for the patient and that person’s comfort. We will respectfully ask them to continue their conversations outside of the room and away from their loved one.” If necessary, the doula will recommend counseling or talk to other members of the care team about additional support for the family. The doula’s focus on ensuring a positive end of life can be a powerful tool. “I was working with someone whose wife wanted to die peacefully at home,” Ms. Rakow said. “I was present when she was dying.” A relative on the scene called 911; when the EMTs arrived, they confirmed that there was no pulse. “Instead of transporting her to the hospital, we made sure she stayed at home — where her husband was able to remain by her side while family gathered and other arrangements could be made,” she said. The situation quickly went from chaotic to peaceful. Accepting the inevitable death of a patient can be challenging for physicians. “I found that my job is easier when I have the doulas to fall back on,” said Charles Vialotti, MD, a radiation oncologist affiliated with Holy Name Medical Center and Englewood Hospital and Medical Center in New Jersey. “They fill a needed role and do work that is so enriching for people. As for physicians, they help us look beyond and not take personally our inability to cure all patients. The doula is a wonderful adjunct.” ‘They help us look beyond and not take personally our inability to cure all patients.’ Even with the patient’s best interests at heart, physicians and other practitioners often don’t have the training or time to sufficiently be helpful at the end of life. “I rely on the doula. They bring skills and talents that we don’t have. They know how to create a legacy for the patient, help families resolve issues, and enable everyone to find peace when a family member or friend is dying,” said Dr. Vialotti. The doulas also know the patient’s and family’s needs and concerns, and can alert other team members who can provide care and support. Additionally, “The doula continues to offer support to the family after their loved one’s death if they want it,” Dr. Vialotti said. “This is something we weren’t able to do before.” The doula should be embraced as part of the care team, Dr. Vialotti emphasized. “We have a weekly community hospice team, and the doulas provide a report about what they have observed. Additionally, they will come directly to the case manager or me if they have a question or concern.” Dr. Vialotti stressed that the doula’s impact can be measured as part of quality improvement. “You can look at specific outcomes, such as family members’ functional and anxiety levels, their satisfaction with a loved one’s care, and their feelings about the person’s death,” he said. A doula’s presence also may result in an increased use of living wills and advance directives. “We can measure all of these things to determine if people are properly prepared and supported at the end of life,” he said. Not only can doulas play a powerful role in care, Dr. Vialotti said, they don’t add to the facility’s financial burdens because most are volunteers. “They are well trained and extremely skilled and professional, but they come to us as volunteers and through nonprofit organizations.” Ms. Topfer was fortunate. She had a large, close family who were able to be with her mother around the clock in her last days, but she nonetheless came to rely on the kindness and expertise of the doulas. “They would check in and hold a space for us. It was remarkable — like a beautiful ballet. We all remained mindful, and the doulas were instrumental in allowing us to talk about our raw feelings and what was happening for us emotionally. “As time unfolded, they educated us about what to look for at the end and what was happening with our mother physically. The last day or two, the doulas came and sat with us. It made things less scary. It was both horrifying and beautiful at the same time,” she said. The doulas can be a touchstone for family members. “I remember schmoozing with one of the doulas about our personal lives,” Ms. Topfer said. “We connected in a real way. I kept thinking that my mom — who was very social — would have loved to be part of that conversation. I felt like I was feeding my mom’s soul.” Ms. Rakow noted that 10 years ago, an internet search for “end-of-life doulas” would have produced nothing, while today one would get dozens of results. “People are starting to talk about death. I’ve seen this conversation taking place across the country,” she said. “We get dozens of calls every week from people looking for a doula or for more information about the field.” To be a doula is a privilege, a calling, and an honor for Ms. Rakow and her colleagues. For people like Ms. Topfer, the doulas are nothing short of heroes. “For them to witness dying and death and hold a space for us when we were at our most extreme pain, sadness, fear, and depression is nothing short of miraculous,” she said. “To think that they go into these situations voluntarily over and over again — they’re remarkable.” Senior contributing writer Joanne Kaldy is a freelance writer in Harrisburg, PA, and a communications consultant for the Society and other organizations. The International End of Life Doula Association provides training and certification for end-of-life doulas. According to the organization’s website, “When a doula adds the letters INELDA after their name, it shows the world they have met all the requirements of our program. No previous medical or hospice-based experience is required, only a willingness to learn and support others. Achieving this is a process that requires considerable time and effort.” The organization certifies individuals to serve as vigil doulas, who can help families and patients directly during a vigil, as well as lead doulas, who can manage a case from start to its conclusion (which may extend beyond the patient’s death). If you would like to contact a doula in your area or learn more about end-of-life doulas, contact INELDA at www.inelda.org/contact-us/.