The word “doula,” from the Greek for “female servant,” has come to describe a person who provides emotional and physical support throughout the process of childbirth. This kind of care has been extended in recent years to the end of life, a passage as important and sacred as birth. Death doulas, as they are often called, tend to the needs of the dying person and to the needs of their family and friends. This important work involves non-medical, holistic care and support, with particular attention given to each person’s emotional needs.
As someone approaches death, touch can be the greatest gift, embodying as it does the comfort of human connection. During the past two years of the global coronavirus pandemic and the resulting distancing and isolation, last moments of connection like hugs and hand holding have not been an option for many families. Many have had to make the best of a terrible situation, often reduced to saying good-bye via video conferencing.
Medical caregivers, too, have been distanced from patients, unable to minister the basic care of simply being present. Masked and wrapped in multiple layers of personal protective equipment, many have had to witness from behind barriers the tragedy of people dying alone.
Dying a good death isn’t a regular topic of conversation, although a growing number of people believe that it should be. The idea of a good death is for many people difficult to articulate. As a society, we struggle to incorporate death, which is a natural part of the cycle of life, into our everyday lives. At one time, communities and religions attended to death and dying in people’s homes and though it is still legal in Wisconsin to care for the body of a deceased person at home, death now occurs most often in hospitals and other care facilities rather than in the home. As a result, for many people it is easy to avoid dealing with death, with loved ones dying in institutions where teams of professionals are available to remove the body and prepare it for burial or cremation. Much about dying has been hidden, ignored, and feared.
But with the COVID-19 pandemic, it is becoming increasingly difficult to ignore the topic. According to the Centers for Disease Control and Prevention, the estimated 2020 age-adjusted death rate rose for the first time since 2017 with an increase of 15.9% from 2019. Life expectancy in the United States declined in 2020 by a year and a half to 77.3 years. This decline in life expectancy, attributed to the coronavirus, is the largest one-year decline since World War II.
So how do we move past our fear and ignorance of death to a point where we can discuss end of life plans in productive, supportive and loving conversations? A group of passionate, and compassionate, caregivers is working to make death a meaningful, peaceful, and beautiful occasion for the person dying and for their loved ones. They go by different names—end-of-life doula, death doula, life doula, end-of-life companion—but they are all professionals who facilitate some of life’s most difficult conversations while offering practical, non-medical, holistic support, for individuals and their families. It is a delicate balancing act and one that these end-of-life doulas manage with care and wisdom, often gained from decades of work in other caregiving professions.
In Wisconsin, a small group of end-of-life doulas is quietly working to reduce the fear so many of us feel when contemplating death. From helping people become more comfortable with the word itself to creating remembrances that keep memories and stories alive after a person’s death, this work is broad, deep, and complex.
These doulas draw on education programs, local networks, legacy planning, grief counseling and a variety of means of practical support to provide individualized service for each person or group. Most doulas work with only one or two people or families at a time. Due to the intimate nature of planning for and facilitating a good death for someone, the doulas experience the emotions that arise around death along with their clients and they need protective limits.
“When you are compassionate, empathetic and not afraid of being vulnerable, it allows you to encapsulate all the forms of emotions that people feel and support them through that,” says Dorothy McElroy, a death doula, grief counselor and advanced funeral planner working in Sheboygan.
She has been providing formal grief support and death doula services for eight years, having started the work informally when her husband died. McElroy missed the chance to say good-bye to her mother and several other beloved friends and family members over the years, and she didn’t want her son to have similar regrets.
When her husband’s end of life was near, she gave their son the option of going to the hospital to say good-bye, rather than simply sparing him that emotional pain. McElroy says that it was a difficult decision to make, particularly as she faced pressure from people who disagreed with her.
McElroy considers her husband’s a good death because he knew their son visited him and they had a chance to say good-bye.
“Death is most certainly the dragon in the room,” she continues. “People are very afraid of it.”
Marggie Hatala Moertl, a doula in Door County, concurs. “Our culture is terrified of death,” she says. “Yet contemplating death helps us see life more clearly. It is a sacred moment when a spirit enters the world, in a birth, and it is equally sacred when a spirit leaves the world.
“We need to meet people where they are. Sometimes it is the adult children more than the patient themselves who need the most support.”
“The fear of the unknown affects us all,” says Karin Medall, a Death Midwife in Monona. “However, if we face the fact that death is the only certainty in life, we have the opportunity to live fuller lives.”
Moertl, who worked as a registered nurse for 47 years, says she is blessed to receive referrals from colleagues who offer her Doula services as part of a package of resources available to patients.
Many end-of-life doulas work closely with hospice teams, and all say they view their work as an adjunct to health and to palliative care, which focuses on minimizing pain and maximizing comfort for dying patients.
“Because of the amazing things that healthcare can provide today, palliative care is hugely valuable,” says Shanen Kazynski, an end-of-life companion in La Crosse. “I’m always advocating for people to [seek palliative care] much sooner than they usually do.”
“Doulas are there to provide the non-medical support. We have no agenda other than to be present,” she says.
Dr. David Ferguson, a doctor in eastern Wisconsin, often works with Door County’s Moertl, and highlights the doula’s role as a client advocate. According to Ferguson, doulas “create a deep presence that provides a space for [patients] to voice their concerns. Moertl meets our clients exactly where they are and helps to affirm their life lived. She celebrates the meaning that their life has brought to others. Life doula work provides the link that I felt was missing within medicine.”
Doula services can include practical household support, logistics planning, legacy work, companionship, respite for other caregivers, communication support, help navigating the complexities of the healthcare system and more. Sometimes the care can be as simple as sitting with someone while a family member naps or showers. Other times, doulas may tap into their extensive network of contacts and local knowledge to provide help for a family.
Whenever possible, the doulas meet with potential clients in person to discuss each individual’s preferences and requirements. They then put together a list of options and work closely with the person or loved ones to develop the necessary care and support.
“Each doula brings their own personality and preferences to the work,” Moertl says, “and all relationships are individual. So the services we provide vary. As I’ve gotten older, I know that I can no longer sustain overnight bedside vigils. I find other ways to help care for the individual and family.”
McElroy’s grief support specialization means that she often works with a family or individual for many years. She may begin working with someone as a Death Doula and then transition into grief support afterwards.
“Storytelling is a huge part of my work as both a death doula and a grief support counselor,” she says. “I help people start grieving before someone dies because it helps them think of questions to ask and stories to discover. Sharing someone’s stories creates a remembrance that can be revisited.”
“This work is incredibly rich,” Medall adds. “I am a witness to someone else’s life and their process,” she says, “and I feel that spiritual companionship is as important as any other aspect.” Medall calls the people she works with friends, rather than clients. “I feel like I know most of my friends forever because there is something inside every human being that is recognizable—we are all fallible, vulnerable human beings who are messy miracles.
But that kind of companionship does not always come easily. “Not every person has a good death,” Kazynski reminds us. “Family dynamics are so often complex, and of course, accidents and unexpected deaths occur.”
“Family members who aren’t close don’t always understand the dying person’s wishes,” McElroy adds. “That incomprehension often leads to conflict over calling an ambulance or giving someone oxygen.
“As a doula, we must always honor the wishes of our client, even if it upsets their family, including their children. It can be a tightrope of emotions to navigate.”
Moertl, Kazynski, McElroy, and Medall each came to their doula work through other caregiving roles. Moertl as a community health specialist and registered nurse; Kazynski as an EMT, daycare provider, and life coach; McElroy as a grief support specialist; and Medall as a full-time parent.
Along their different paths, each came to the realization that they wanted to provide care in a different manner. In the past, when end of life care remained within the family, it was a skill learned at home by younger generations as they watched and participated. What training is available now for end-of-life doulas is voluntary. There are no nationally recognized accreditations as there are for other caregiving occupations such as nurses, therapists, and cosmetologists.
As a means of organizing and connecting doulas, and providing a more cohesive public voice for the profession, the National End-Of-Life Doula Alliance (NEDA) was created in 2018. The Alliance provides a code of ethics, a model of care, and information on certification options.
Some doulas embrace formal training, while others take a more informal route. Moertl and McElroy both trained with Doula Givers, and Kazynski attended the Conscious Dying Institute.
“For me,” Moertl says, “the training was valuable because it provided mentor relationships and it can be a boost of confidence for clients who may be unsure about what doulas offer and how they provide care.
“Although the work is emotional,” she continues, “it isn’t sad. I always tell people who enquire about it as a job that it is much, much more than that.”
Most doulas work only with a few clients at the same time, and many work with only one at a time. The intensity and intimacy of the care they provide makes self-care an essential aspect of their work. For some doulas, that means journaling, time off between clients, time spent with close family and friends and other activities that provide rest and rejuvenation. The care they provide to others is equally important for themselves.
“No one should die alone!” Kazynski states emphatically. This is one of the primary roles of end-of-life doulas—to ensure that someone is there at the time of death.
“We need to bring death back into the family,” she continues. “We have lost that learning that was handed down as a regular part of life. Dying isn’t separate from living, it is part of it.
“Time together at the end is sacred, yet so few people feel comfortable being there. People ask me what they should do, how they can care for their loved one. Just being present is the number one thing!”
When that isn’t possible, sometimes doulas step in to provide that companionship. The local connections they have built and the knowledge that they have accumulated are often the difference between someone dying alone and dying with the comfort of someone’s hand in their own. Kazynski says that her area funeral and residential homes occasionally call her when someone is in the final stages of their life and has no one with them.
“Even when a person is unconscious, they know when someone is with them,” McElroy adds. “I have seen this many times. Those moments are a holding space.”
It’s important to remember, McElroy says, that although “death is the end of a life, it isn’t the end of a relationship. If you have an incredible depth of love for someone, your grief is going to be equally deep.”
She emphasizes that there is no correct way to grieve, nor is there a perfect length of time. “Life is full of trial and error but death is an absolute. It can’t be redone, which is why it is so important to make it a good one.”
As death doulas show with every kindness, every empathetic moment they spend with an individual and family navigating the last months, days, and moments of a life, death is not something to be feared. Like birth, it is a natural passage in life. We will all experience it.
Might we better serve ourselves and our loved ones by thinking about how we want to be remembered, and how and where we want to spend our last days? Today could be the day to start thinking about the many strands that make up our multi-faceted lives and to consider what possessions might we like to share with our loved ones and what stories we want to pass on, from ourselves and from our ancestors.
A good death means finding peace at the end of one’s life, and it is part of the beauty of the full cycle of life, something to strive for, for ourselves and for those we love.