Part 1: What They Offer, Why They’re Needed
To live … is to breathe … is to die, the natural and inescapable rhythm of human life. Deep down, we understand this. But in our death-averse culture, many of us need help remembering how to live into death, on our own terms. That, in a nutshell, explains the arrival of the death doula.
What is a Death Doula?
A death doula, or more formally, an end-of-life doula, is a person equipped to walk beside and provide emotional, non-medical support to those who are dying and their loved ones. Doulas are comfortable with death, often feel called to this work, have completed and may be certified through a training program, and typically have experience working with patients and families as a companion volunteer in a hospice or other end-of-life setting. Currently in Minnesota, end-of-life doulas can be hired as private practitioners or assigned as volunteers through a handful of early-adopter hospice programs.
Like the birth doula who provides emotional support to a pregnant woman while her medical team tends to the physical needs of mother and child, an end-of-life doula companions a dying person during the long hours between visits from medical and hospice teams and during the final days and hours.
The goal is to help the dying person take back a little control, gain a little peace, and live with intention in their final days. Doulas, as skilled listeners, give those they serve the opportunity to speak freely and express their needs. That can mean venting, talking about their fears and worries, taking stock of their life, preparing final messages for loved ones, or expressing how they’d like to be tended in their final days. Because those who are dying often come to a place of acceptance before family members, it can be easier for the dying person to process what’s happening to them with an end-of-life doula – someone who is less emotionally involved and, by definition, accepting of death’s reality.
Sometimes, it’s family members who seek the presence of a doula, especially if their loved one is too weak or unable to communicate because of dementia-related conditions or medications. For loved ones, a doula shows up in much the same way – inviting conversation, actively listening, and helping them, if they choose, to anticipate and plan for the active dying process, the death, and after-care of the body. In this way, a doula lessens the fear and normalizes the dying process, giving loved ones confidence that they can embrace and find peace and meaning in this experience.
Why Are Doulas Needed?
During the last century, Americans embraced medical innovation and benefitted in countless ways from pioneering treatments and surgeries supported by ever more powerful technologies. As life expectancy rates increased, however, death became less familiar and many of us lost touch with the traditions and rituals that once helped us manage death’s reality. When people did die, it was increasingly in a hospital, away from our everyday lives.
Fortunately, there were some who began working to address this loss. Hospice programs in the 1970s and 1980s, and palliative care programs more recently, have become a bridge, helping us transition from life-continuing medical care to life-affirming services designed to comfort us, manage our pain, and help us prepare for death. Still, as a culture, we have a long way to go. The end-of-life doula role was born and has come of age in the last 15 years to help us reclaim the dying process. And the current buzz it’s generating affirms that our culture is awakening to this issue.
The International End of Life Doula Association (INELDA) is a prominent educational organization fostering the use of end-of-life doulas in hospices, hospitals, communities, and directly to dying people through the service of private practitioners. Between its first training in September 2015 and year-end 2018, the organization trained a total of 1,339 people. In just 2019, it trained 934 people, bringing its total to 2,273 people. And it expects to repeat or exceed last year’s number in 2020. To date, it has trained 169 Minnesota residents, and is offering two additional training classes in Minnesota this year. According to INELDA Vice President Jeri Glatter, “the state of Minnesota is establishing a prominent acceptance of the work of end-of-life doulas and we continue to be impressed by the forward momentum.”
The Death Doula
Part 2: As Volunteer & Private Practitioner
Kat Shea is a professional writer and volunteer end-of-life doula who collaborated with Grace Hospice to add volunteer doulas to its service offerings in January. She was trained by both Doulagivers and INELDA, certified through Doulagivers, and last year earned her proficiency badge from the National End-of-Life Doula Alliance. Well-networked within the growing death doula community, she welcomes conversation (firstname.lastname@example.org) and invites learning through the recently launched Minnesota Death Collaborative (mndeathcollaborative.org).
“This article was originally published in the spring 2020 issue of the MN Association of Guardianship and Conservatorship Journal.
I have been at this work for a couple of years and still can't seem to answer the question "What is a death doula?" succinctly. Some common replies are "I am a non medical person that provides physical, emotional and spiritual support to dying people and their caregivers." Or "I am a different doula with every client I have." While both of these are true I don't think they do much to answer the "What is a death doula?" question.
I think it makes more sense to tell stories about my experience as a death doula. It's not succinct so it had better be an elevator in the Burj Khalifa in Dubai.
Frequently I get called from the hospital. I get the back story and find out why they called. Most people say something to the effect of "I don't know why I am calling I just didn't know what else to do." What they need me to be is an emotional lighthouse. Anticipatory grief can create chaos in waiting rooms. I see my role as being the calm presence showing them the way to solid ground. I remind them that they can do this and then offer them some tools.
If the person is very near death and in a sleep coma, I usually help them with ideas to change the room to a more calm and peaceful environment and offer some sort of blessing. This is a time when people appreciate having something appropriate for the moment put in their hands. I draw from many spiritual traditions and encourage them to make one of their own as well. One of my favorites comes from a book (and I'm sorry I can't remember the title-the death books are about 5 deep on my bedside table at all times). It was written by the friends of a man who was dying of AIDS:
"Thank you for the life of our dear friend. Thank you for the miracles that make him who he is. Thank you for the amazing life he has lived and for all he has been. Thank you that he will now journey to become a bright star. Help him as he sheds his earth garment and his pain and his sickness. Help him to journey freely unencumbered by these things. May the journey be blessed by the knowledge that he is loved and while he will be missed, we will always be able to see him in the stars. We put his life, being and transition into your hands the mighty god of the stars and all beings."
These prayers are helpful because when we find ourselves at the bedside of a dying loved one we can be at a loss as to what to say and do. I always encourage them to let everyone have some alone time with the person. Hearing is the last sense to leave so even though they are in a sleep coma you can still talk to them. This is helpful even in the deaths where there is conflict. I encourage people to say what is in their heart. I prep them to be able to speak their truth in a calm and measured way. It is equally important that after they have had their 5-15 minutes they need to let the person die in peace.
Sometimes people call and they are in the midst of making difficult medical decisions. Often their beloved has just had surgery and they have been given competing advice from the multiple doctors involved. One doctor says something like "There is nothing more to be done." The other says, "We can do this, that and the other thing." Understandably there is confusion. This is an instance where I can create the space for them to find their own wisdom. I ask "What matters to your beloved?" Often they say "They want to be cured." I ask if the doctors are telling them that this is possible? They say "They are really positive and hopeful. We are grateful for that." I have learned to be leery of 'postive and hopeful' in my line of work. I ask them if they trust the doctor. Frequently they say "I haven't known this doctor long enough to know." Or "There have been so many procedures I don't know who the doctor is." I venture that if they couldn't be cured what would they want? They usually say the person would rather be at home. 8 out of 10 people want to die at home.
The next step is helping them advocate for themselves so they can get the information from the doctors that they need to make these decisions. To help them get information I usually have them ask for a Care Conference or a Palliative Care consult.
At some point they enter hospice and are looking for support to make this experience their own. Topics people ask about include how the body shuts down and the kinds of things they can expect. How to manage their own anxiety around death and dying. How to balance the needs of the extended network of family and friends. Sometimes how to prepare a child for the death of a parent and how to invite them to participate in a way that feels comfortable for them.
I can do most of this work in person, over the phone/text messages. It all depends on the support system and how much experience and confidence they have around death and dying. And remember: it doesn't have to be a last minute call when you and your family are in distress. We can talk through these scenarious before the time comes so that your last moments together are calm and as close to what your beloved wanted as possible.
Are we on the 163rd floor yet?