End-of-Life Doulas: A New Type of Support and Care0 USER TIPS ADD YOUR TIP
When Dorothy Henick’s father was diagnosed with lung cancer 10 years ago, Dorothy says she felt like “a lost puppy,” with “no clue how to handle the whole thing” or how she would manage his illness and eventual death. She confided her fears in her friend, Jeri Glatter. And last year, when it became clear that her father was nearing the end of his life, Dorothy asked Glatter, who had since been trained as an end-of-life doula, to support her family as they said goodbye.
Dorothy credits Glatter with giving her the courage to handle what lay ahead. “I told my father that I was going to take care of him and my mother and he could just rest. Jeri helped me be that person that I wanted to be.”
End-of-life doulas are part of a new and rapidly growing field, following in the footsteps of birth doulas—now a regular part of the conversation around birth. “Doula comes from the Greek meaning ‘one who serves,’” says Patty Burgess, founder of the doula training program Doing Death Differently. “Birth doulas are helping to usher new life into the world. End-of-life doulas are the bookends on the other side, providing non-medical, spiritual, and holistic support and comfort to family, significant others, and the person who is dying.”
That support can take many forms, including help with end-of-life planning and advance directives, educating family members about what happens during the dying process so that it will be less scary, and sitting vigil in the final days. Some also help families with funeral planning and bereavement support.
Like birth, death was once a family affair attended to at home. With advances in modern medicine, now it mostly happens in a clinical setting and few of us are faced with death until we experience the loss of a loved one. So we don’t know what to expect or how to act, and the whole process can be very frightening and alienating. Doulas work to bring the home, family, and connection back to death. “We facilitate a transformation of the experience of death and dying,” says Burgess. “The idea is to take this precious time and move from sadness, fear, and being overwhelmed to connection, meaning, and sometimes even joy.”
Who are end-of-life doulas?
Doulas come from many different backgrounds. Some are trained psychologists, social workers, registered nurses, or former hospice workers. But, according to Glatter and Burgess, what they often have in common is having had a transformational personal experience with death that led them to want to support others through the experience.
Though there is no national certification or universal training for end-of-life doulas, there are some 10 organizations around the country who offer training in the vocation. (See the section titled “How to Find An End-of-Life Doula” below for more about those organizations.)
What does an end-of-life doula do?
No matter what specific training they undergo, end-of-life doulas strive to offer critical support to those who are dying and those who love them, which can include:
Finding out what everyone needs
Doulas usually begin by meeting with loved ones as well as the dying person to find out what their needs and wishes are for the final days, weeks, or months, and to learn exactly what kind of support would be helpful. Some families really need logistical help with advance planning and communicating with medical professionals. Others may be more focused on preparing for the end-of-life vigil. “We are building up trust, gathering information, and connecting with the dying person about life meaning, what they feel their purpose is, what they would like their last days to look like,” says Glatter.
Consistent support in a time-crunched system
Even within hospice settings, the staff is able to spend a limited amount of time with someone who is dying or their family, notes Burgess: “Hospice may be with them one or two hours a day, usually spent on toileting, changing, and bathing.”
Doulas, on the other hand, are focused on your entire family’s needs during a hospice, hospital, or home death. They can spend more hours with someone as they die, and, though they are not trained medical professionals and do not provide medical care, they can serve as a liaison with hospice or hospital staff to communicate the person’s needs and desires.
Educating and lessening fear
“There are a lot of things that happen at the bedside while someone is actively dying that can be fear-provoking for someone who has not seen it before,” says Burgess. “A doula can explain what’s happening and why it’s happening and help family members understand what the dying process looks like so they are not so fearful.”
Henick found that Glatter’s guidance about what to expect made the process “much less scary,” and, in turn, Glatter says that doulas train family members how to be with their dying loved ones. “It’s almost as if the family become doulas as well,” says Glatter, who is also vice president of the International End of Life Doula Association. “It becomes this new community and together we go through the process.”
Comforting the dying
Doulas often have a range of methods that they can employ to help a person who is dying feel more comfortable and relaxed, including guided visualizations, massages, or energy work such as reiki. They can also remind caregivers that reading spiritual passages or poetry, holding a hand, or gentle reassurances can ease pain and provide comfort. And they can make sure the environment is what the person wants at the end of their life, from selecting music to adjusting lighting. If there are medical needs that affect the person’s comfort, doulas can help families understand them and help communicate their wishes to the medical staff.
Navigating family wishes and dynamics
When Henick’s father was dying, she says her mother had a difficult time accepting that reality and wanted to pursue treatments that would no longer be effective. She was grateful that Glatter could listen to and address her mother’s concerns.
“Jeri was like, ‘OK, we have two railroad tracks. One is what you’re hoping for and one is the reality and probability, let’s ride them together,’” says Henick, who appreciated that Glatter could calmly and objectively listen to her mother when other family members objected to her suggestions. “She made her emotions OK.” With Glatter’s help, Henick says her mother was able to come to a place of acceptance that it was time to say goodbye to her husband. “She was grounding for my mother,” says Henick. “Sometimes you need immediate family, and sometimes you need another voice. It can’t always be your son or daughter.”
And of course, given the high stakes and overwhelming emotions that everyone feels as they watch a loved one die, conflict resolution is also part of the doula job description. “Let’s say you’ve got a patient who is dying and maybe they are spiritual but not religious. But they have family members who are very religious and they have concerns about the state of their loved one’s soul,” says Burgess. “Or maybe siblings haven’t talked to each other in a long time and now Mom or Dad is dying and they are not in the same place.”
In those situations, “A doula’s job is not to take sides,” says Burgess, but to figure out what the family needs to manage those differences. “Sometimes it’s just a matter of keeping a family squabble quiet and two rooms away. Sometimes it’s sitting down with the family because people need to be heard.” And sometimes doulas provide logistical support in these situations, coordinating visit schedules so that feuding family members stay apart.
Offering ritual or spiritual support
“There are so many rituals that existed in our culture but have been abandoned and forgotten,” says Burgess, “like creating a shroud, having a home funeral or a wake.” For those interested in having spiritual or ritual elements be part of the final days, doulas can help make that happen or connect families with other professionals who can help.
Making death about the meaning of life
“Dying is a part of life,” says Henick. “Making it a good death is important.” For Henick that came from the work Glatter did to make sure her father understood his legacy. “She spoke with him about what a beautiful family he has, that he made this family, and he loved and nurtured this family, and to be really proud of it. He just listened, and it all went in.”
Glatter also encouraged Henick and her family members to share their gratitude and other emotions with their father. “Jeri made it as peaceful and loving as possible, we were there telling him the important things—how much we loved him. He told us he loved us and told me to find fulfillment in my life. Just by being there and inviting these kinds of conversations Jeri helped us have the closure that we wanted. It made it so we can exhale and not regret the way it went.”
Glatter also helps families create a visual legacy such as a scrapbook, a life chronology on a scroll, family recipe books, collected poems and prayers in a decorative box, or audio or visual recordings of memories and wishes.
INELDA-trained doulas create a plan for the vigil at the very end of a person’s life based on what the dying person wants his or her final days to look like. “We know what the room will look like, who will be present, what rituals may or may not take place, what the music or sounds will be, the smells,” says Glatter. “One of the richest parts of our work is delivering to them what they have envisioned as their version of a good death.”
For Henrick, Glatter’s work enabled just that. “I’m forever grateful to Jeri for making it as smooth a transition as possible. Something she told me will stick with me forever: ‘We labor into this world and we labor out of it.’ It was a labor, and she helped us every step of the way.”
How much does an end-of-life doula cost?
Some doulas work voluntarily, but there is a movement to professionalize the industry, and most charge fees either hourly or by service package, depending on the type of support you need. Fees can range from $40 to $100 an hour and service packages from $1000 to 4500 depending on the duration and nature of the work. Currently, there is no insurance coverage for end-of-life doula services.
How to find an end-of-life doula
There are several online directories of organizations who can connect you with individuals who have completed their training. Places to start:
Questions to ask a potential doula
- What is your experience with death? What drew you to this work?
- How long have you been doing it?
- Have you completed a training with an end-of-life doula organization and do you have a certificate from that organization? (Visit that organization’s website to learn what the training includes.)
- What kinds of services do you provide?
- What community resources can you help me with?
- Do you work with local providers such as hospices, nursing facilities, home health agencies, or companion care organizations?
- What is your availability?
- Do you work individually or with a group of doulas? (This could be important if you want someone to sit with you or your loved one round the clock.)
- Can you provide references from other families and/or agencies?
- How do your fees work? Ask about hourly or package rates.
- Do I sign a contract, or is this a handshake arrangement?
Glatter suggests speaking with more than one doula, if that is possible, before making your decision.
If you find a doula whose approach interests you, but he or she is not local to your community, there is sometimes the possibility of working over Skype or by telephone.