What Is an End-of-Life Doula?
Many people die suddenly. Or they suffer a short illness and then pass on. Others live with the knowledge of their imminent death for weeks, months or years. That can be really hard, and anticipatory grief is a real thing. “A death doula provides unconditional and nonjudgmental support for the dying and their loved ones,” says holistic death care professional, certified end-of-life doula and grief advocate Karen Karnatz.
When you think of a doula, you may think of a professional who cares for someone through pregnancy and childbirth. A death doula helps in similar ways—only on the other end of a lifetime. Offering nonmedical, compassionate support to those working through the dying process, an end-of-life doula walks hand-in-hand with individuals and families as they prepare for death.
“The families I’ve worked with have said the most important thing was that they felt they were not alone during a hard time,” says death doula Shawna Carey-Parker.
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The role of an end-of life doula
As with life, death has no playbook. Each person’s experience is unique, but some human experiences are universal. An end-of-life doula can help someone at the end of life live well and die better by holding space for their grief and creating opportunities for them to embrace their mortality, says Karnatz, who is a Dignity Memorial® associate.
A death doula assists families who are living with imminent death explore their choices about how to spend the time they have left and connect with their dearest family and friends. A doula may talk with the dying and the family about planning a funeral or cremation service if the doula is also a licensed funeral arranger.
Certification is optional for doulas, and though some doulas are affiliated with funeral homes, many are not.
Holding space
One question Carey-Parker hears again and again is whether it’s OK to feel relief when telling their loved one they can let go and/or to feel relief after their loved one dies because that person was very sick and in pain. “My answer is yes, it is OK, because when you love someone you do not want them to suffer. I tell them that is it pure love and care to tell their loved one that it is OK to pass so they can be free from pain. That is love in the purest form,” she says.
A death doula can be both a shoulder to cry on and a source of strength. A doula can encourage actions that can make a person’s final days more meaningful and fulfilling. For example, Carey-Parker, who is also a Dignity Memorial associate, suggests that those she cares for assemble memory books or write heartfelt letters to their loved ones. Expressing love and gratitude and recalling good times can be comforting for those who are dying—and such tangible gifts will be cherished for years to come by those who received them.
Facilitating legacy work
An end-of-life doula may also walk someone through thinking about how they want those who knew them to remember them. We are all unique in the world—our family and friends will always remember us that way. A life story is made up of big events and little details.
“What are those events? What are your values? What are your passions? Who are you and how do you want to be remembered? Your story is uniquely yours, and it's important to share it,” Carey-Parker says. Stories help people feel closer to someone in the present and give them something to hold onto for generations to come.
“It’s about giving people control of how they want to live and how to leave their mark,” Carey-Parker says. A death doula can help someone who is dying think through creative ways to document their life for those who know them today—and those who will never get the chance to know them in person.
Assisting with hard conversations
Talking with an end-of-life doula may lead a family to an open discussion about final arrangements. “Just the idea of having a doula available creates space to have that conversation within a family,” Karnatz says. A doula knows just what to say to help a family broach sensitive topics and can help family members navigate the difficult emotions that may arise.
“During the dying process, there are so many unanswered questions and fear,” Carey-Parker says. “The one dying normally wants to have some say in how they want their death to feel like—i.e., where, who is there, atmosphere, etc.—but families don’t want to talk to each other about it or ask questions.”
Families say having a death doula has made death a little less harsh and not as scary, because they are able to openly talk about their fears or ask the hard questions and feel they are seen and heard.
It's practical for someone facing their own death to plan ahead for their funeral or cremation. Though doulas don't make funeral arrangements unless they are also licensed to do so, they can help someone facing their death think about their wishes.
Among those wishes may be a living funeral. Carey-Parker knows one family who threw what they called “a last-hurrah.” The football-themed event celebrated one man's love of the sport and gave him the chance for him to be present to reminisce with his friends and family. They exchanged stories, remembered the fun they’d had in the past, shared the positive impacts they’d had in each others’ lives and expressed heartfelt goodbyes.
A living funeral is nothing less than the outpouring of love a dying person needs in their last days.
The difference between hospice and doula care
Though a death doula may work alongside a hospice team and complement the care they provide, the two fill different roles. Hospice offers medical support for peace and comfort at the end of life, in addition to emotional and spiritual support for the dying and the family. A doula is a nonmedical professional who provides practical support.
Members of a hospice team may administer pain-relieving drugs or physical therapy to improve quality of life. They may also coach family members on how to care for the dying person. A death doula's role looks more like sitting and talking with the dying, preparing snacks or helping with meals, and offering comfort and compassion to family and friends.
“No matter what background, what culture, what spiritual belief system, the one thing we doulas have in common is we just want to make death easier for everyone involved,” Carey-Parker says. “We want to be a port in a storm—to hold a quiet, safe space to love, talk, plan, and remember a life beautifully lived—so the family left behind can thrive, heal and grow.”
Grief support after a death
That's also where your Dignity Memorial provider and the additional resources offered to every family come in. Our extensive online grief library and Compassion Helpline® are available anytime a family needs them.