Facing Mortality Through Planning and Writing: My Role as a Death Doula
It's easier to prepare for the inevitable with a knowledgeable companion by your side.
Hi friends! After the popularity of my re-introduction Note, I thought it would be a good time to write an in-depth piece about the role and work of death doulas. As well, I wanted to include how I specifically serve as a death doula, and the ways in which I might assist you.
Whenever I publish a piece related to death work or share a Note about being a death doula, I receive numerous comments that say something to the effect of, “Thank you for sharing; I didn’t know what a death doula was.” Sometimes the comments ask, “A death doula? What is that? What do you do?”
And so, I thought it would be appropriate to devote an entire piece to the extraordinary movement of death doulas.
A companion at the end-of-life…or before…or after.
A death doula goes by many names and wears many hats. We are also called End-of-life Doulas, Death Coaches, Dying Guides, and Death Midwives. Maybe you’ve heard of birth doulas. Just as birth doulas assist an expectant mother, her loved ones, and her medical team with prenatal planning, the birthing process, and postnatal support, death doulas do the same thing. Except we do it for the dying and not the newborn.
The actual definition
The definition of a death doula is a non-medical person who provides trained logistical, emotional, and/or spiritual support before, during, and after dying. A death doula can provide assistance to the person who is dying, and they can also support the family and caregivers.
You can think of a death doula as similar to the function of a hospice care team: just as hospice teams utilize a social worker for logistics and a chaplain for emotional and spiritual matters, we offer support for all three realms: logistical, emotional, and spiritual.
Doulas may choose to offer the full gamut of services or niche down into just a few. Some doulas thrive in details and specialize in planning and coordinating. Some doulas prefer to be at the bedside while death is occurring. Some doulas have a background in music therapy or massage therapy, and may choose to play soothing music or provide gentle touch. Some doulas even offer energy healing like reiki and sound baths as part of their services.
Death doulas offer information, guidance, and non-medical assistance. We aren’t meant to replace family and primary caregivers, nor would we ever try to. Rather, we answer questions and debrief you on what you might expect as death nears. We can run errands for the household - since feeding yourself often falls by the wayside when caring for an ill family member - or assist in planning how a person would like their room to be arranged when they reach the point of actively dying.
These are just a few examples of the various types of doula-provided support. In these ways, death doulas’ efforts can wonderfully complement a hospice team.
Two key differences
So doulas are quite similar to hospice care. But they vary in two crucial and noticeable ways.
Death doulas are strictly non-medical.
In addition to the chaplain and social worker, hospice care teams employ nurses. You might have heard of the notable Hospice Nurse Penny, Hospice Nurse Julie, or Hospice Nurse Hadley Vlahos. These are social media famous hospice nurses helping to normalize hospice care and death conversation.
But death doulas are not nurses. A doula will never diagnose, prescribe, or administer any sort of medication; hence, the non-medical care. But a doula can offer other similar services to hospice: they can help with paperwork and getting your affairs in order. They are an educational fountain of knowledge and can oversee the handling of the many logistics that grieving families are left to handle in the aftermath of death – planning the funeral? Check. Setting up logs that contain all your relevant passwords and account logins? Check. Helping you prepare an advance care directive so that your medical wishes are known ahead of time? Check, check.
But medical care? Nope.
Unlike hospice, which only becomes an option when someone has received a prognosis of six months or less to live, you can work with a death doula at any time.
The second big difference between hospice and doulas is that you can get way ahead of this death and dying thing. Like, WAY ahead: as long as you’re eighteen or older (read: aren’t bound by all the weird restrictions that can come with working with minors), you can chat with a death doula.
It’s a matter of Time: A difference worth considering
While hospice teams must balance numerous patients, doulas are able to be more selective in their intake, admitting only as many clients as they can comfortably serve. When I was a hospice volunteer, I was appalled by the working conditions of the hospice employees (their pay is an entirely different soap box and is the subject for a separate article..). One afternoon, while in training, I vividly remember being taken to a client’s home visit by the hospice social worker. As she drove, I watched in fascination while she scarfed down her lunch, clearly intending to finish it before arriving at the client’s home.
“Do you guys not get lunch breaks?” I asked her.
“We do,” she replied between a bite of her salad. “But none of us really take them. If we do, we lose that time with our clients. And we already have limited time with them already.”
“How much time?”
“Forty-five minutes to an hour. Depends on how many I have to visit that day and how long I want to give myself to do their notes after our meetings.”
Once I completed training and began going on my own patient visits, I saw firsthand why the social worker was so conscientious of time: when you add in drive time and traffic, you don’t get to see that many people at all. It didn’t help that my hospice kept sending me to visit with clients who were at least an hour’s drive away from my apartment.
But as a death doula, there’s no organization – or *cough* insurance company – dictating how long or short my sessions can be. A lot of doulas I’ve connected with have expressed similar relief. How much care can you realistically get done in an hour or less? Case in point: most of my sessions featuring my writing-related services are at least an hour and a half.
So what do death doulas….do?
Because a death doula’s practice is not controlled by a governing body, there is great flexibility and diversity in what a doula may or may not offer; each death work practice is as unique as the individual who practices it. Once again: the only standardized rule that doulas are bound by is their strict functionality as non-medical support.
Some folks in the death care world divide up the types of services into three categories: pre-death care, active dying care, and post-death care. I like this system for organizing the different areas of death work, and so I’ll be utilizing it too.
Pre-death
This is technically where my specialty falls – more on that near the end of this piece. Care before death can occur from age 18 all the way until death. Services in this realm include logistical assistance like planning your own funeral in advance, getting your medical paperwork in order, writing your own obituary, or other legacy projects to leave behind for loved ones. Services such as running errands for the caregiver, tidying the house, and cooking meals can also fall under pre-death care.
Active dying
Some assistance from pre-death care can carry over to this phase, which simply refers to the time when a person has descended into the phase of actively dying: they are exhibiting the physiological symptoms that death is near. For instance, they fall comatose, there is changing in their breathing pattern, and they stop eating and drinking.
A death doula serving in this capacity might be on-call for the period of active dying. The doula might offer vigil services, where they come to the client’s bedside and sit with them, offering their silent presence. This has the practical component of allowing the caregiver to step away for a nap or a break; a respite can be relieving after they’ve been keeping nonstop watch over their loved one.
The doula might bring essential oils for the room, or might engage in gentle massage. Often, they will just hold the hand of the dying person. Or perhaps the doula is present to provide an emotional buffer between different family members during this incredibly difficult time.
Post-death
Post-death care, as the name implies, occurs after the person has died. A doula who specializes in post-death care could assist the family with washing and caring for the deceased’s body at home. This kind of care includes grief support – another service that I offer. Planning and celebrating funerals are other additions to post-death care, but planning the funeral could technically be considered pre-death care if it was arranged before the person died.
If an individual has not worked with a death doula prior to post-death, they might not have had the chance to organize the mountains of paperwork that must be attended to after someone dies. In this case, the family could work with the doula to sift through this task. Having a compassionate and knowledgeable doula steer the ship is often helpful while the family is reeling from the shock of fresh grief.
Services as unique as the doulas
You might see a death doula who integrates Reiki into their services. Or another doula who offers massage work. There are doulas, like myself, who mainly prefer to work virtually with their clients, but who offer logistical support for pre-arrangements, pre-planning, or simply a caring ear to listen to while you vent the most societally unacceptable diatribe about living, dying, and why the hell is this all so hard?!
Whether or not you or a loved one is actively dying or suffering from a terminal illness, meeting with a death doula offers numerous benefits. Here are some of the ways a death doula can help no matter where you are in life:
Open dialogue and education to familiarize yourself with this vastly unfamiliar, uncomfortable landscape of death and dying; unlike most folks, death doulas don’t consider death-talk “weird or morbid.”
Pre-planning helps provide a sense of calm that accompanies proper preparation.
Assists in developing legacy projects, including the pre-writing of obituaries and life story writing (*waves* hello! This is my specialty!)
Provides information on what to expect at all stages.
Offers resources on practical matters, such as funeral planning, hospice arrangements, and other logistics. (I do this too!)
Suggests available resources in the community: meal planning, childcare, etc.
Takes on menial tasks like running errands so that the primary caregiver can either get a break or spend quality time with the dying person.
Arranges and/or sits vigil: sitting quietly during the final hours.
Grief support to process the loss of a loved one (this is also me!)
How I help people navigate end-of-life through a combination of writing, storytelling, and death care.
I help people share the stories of their lives and leave their legacy to those left behind. I do this through writing obituaries and eulogies (before death or after death has occurred) that tell the person’s unique life story…with their own special flare! (No cookie-cutter obits’ here, folks. Gross.)
For those willing and able to spend time on a longer-term project, I craft life story books, where, after a series of interview sessions, I pen the story of someone’s life. At the end of the process, I self-publish the book and send the client a copy.
What’s the deal with writing?
I am a firm believer that telling our stories empowers us to do a lot of things; we are able to look back on our experiences and learn from them. We are able to make sense (and meaning) of the things we have done, following a thru-line thread that has shaped who we have become. We are enabled to live into our lives with purpose as we consider how we are living into the stories we might one day write.
I believe this aspect of self-discovery and fulfilment through writing rings true whether you have fifty years to live or fifty days.
In Ernest Becker’s pivotal book, “The Denial of Death,” he writes that death is “the worm at the core” at the heart of all mankind’s actions. The basic premise is because we as a species are so frightened of death, every action we take springs from some level of that fear: death is therefore the worm at the core of our existence, quietly powering most of our actions and desires.
In his writing, he describes the concept of “immortality projects.” That corrupt businessman seeking to expand his empire at all costs? Yes, he’s a greedy bastard. But he’s also seeking to create something bigger than himself, something to outlast him: his corporation. The burning desire to have children? Yes, it’s because we want a family, but it’s also because we want something to live beyond us - living, breathing proof that we were once alive on this planet.
I’m not saying I agree or disagree with Becker, here. I’m only summarizing his argument as a way for me to emphasize the importance that humans place upon legacy.
At its heart, that’s what I do too, only I swap the word “immortality” with “legacy.” My writing helps people clarify their legacies: it describes what you’ve done with your time on Earth - who were you? What did you accomplish? Who did you love? What beauty did you both enjoy and create?
Writing asks, how then, will you live, regardless of how long or short that time may be? In this way, I guide my clients to uncover meaning in their remaining numbered days.
Post-death stuff: on funerals and grief
The act of planning a funeral – not the stuffy, boring kind that are cut-and-paste from the same cloth – is another act of deeply personal, beautiful storytelling. If done right, a well-planned funeral weaves a story of the deceased’s marvelous life. Their essence - from their quirky humor, to their song preferences, to their irreverent attitude - can be felt from the moment a funeral attendee enters the space. A good funeral doesn’t have to just be a few Bible verses and a quick homily from a priest (but it certainly can be!); it can be customized down to the tiniest details.
(Disclaimer: sometimes, churches won’t allow you to have full control over the structure of a funeral. In that case, it might be best to seek alternate venues, and bring in a local pastor or priest to preside over the ceremony and re-introduce that religious element)
Finally, I am a grief guide offering non-clinical support for grief related to losing a loved one to death or through any difficult life transition. Grieving is hard. People who don’t understand grieving make it even harder. I’ve never understood why, but I’ve always had an affinity for inhabiting difficult places: these are spaces where sadness is present and the air is heavy. I’m comfortable there. I think it’s because when we’re deeply sad, we’re deeply vulnerable, and deeply human. When people are vulnerable, when people are hurting, I touch a raw core of humanity. It’s such a humbling privilege to sit beside people as they navigate their ocean-like sorrow.
I believe grief of all types deserves to be honored. That goes for losing a friendship, or walking through divorce. Even things you might not consider “sad,” such as moving to a new state or transitioning from a house full of kids to an empty-nester can carry deceptively painful grief. I remember when I moved from Pennsylvania to Maryland: I grieved the home of my childhood – big time. It was so bad that after each visit back to see my family, I would sit in my Maryland home office and cry before I could get any work done. I used to think I was being foolish. Now I understand I was grieving an old life.
Other areas of service
Everything above - obituary and eulogy writing, life story book creation, funeral planning, and grief support - are my favorite areas to serve in. But as a trained death doula, I am knowledgeable and available to assist with aspects of pre-planning, or simply discussing death and dying in order to feel more comfortable with it.
Final thoughts
I often get asked, “isn’t this depressing?” “Are you planning to die soon?” The answer to both is no. I find the work I do in grief support sessions and the work I’ve done with my obituary writing and book planning to be inspiring and illuminating. It’s a reminder to hold close the ones I love and to breathe deep; my life isn’t infinite. My days are numbered, and so are the days of everyone I hold dear. In this work, you hear about all the different ways people can be bereaved…and there are a lot. It’s a reminder and an invitation, a privilege and honor, to do this sacred work.
My soul couldn’t be happier.
If you’ve read this far, I sincerely thank you. This isn’t often a piece many people would gravitate towards, especially in our death-averse society. So thank you for reading, for educating yourself, for becoming part of the solution and the grassroots movement of deathcare.