Author’s Note: I have contemplated writing this piece for some time but it hasn’t unfolded easily. I have been struggling this past year with the evolution (or perhaps erosion) of the community deathcare movement. Proceed with caution. If this article causes reflection, it has achieved its purpose.

In the Beginning

My introduction to what I now know to be community deathcare happened over 40 years ago although it didn’t have a fancy name back then. I grew up with an abnormal “comfort” around death, thanks to being raised in an Irish Catholic family with parents who never shied away from the topic. They used the proper terms of “death,” “dying” and “dead” and openly talked about the sometimes-tragic deaths of loved ones. My mom was also a nurse and so she would come home some days feeling very sad over the death of a patient she had cared about for many weeks or months. People often died at home back then and my mom would be called out to offer guidance and comfort and my sisters and I would be sent to the same homes with food for the caregivers.

We sang at funerals in our small, rural church and had attended countless wakes and funerals by the time we reached adolescence. Oftentimes, we didn’t know the deceased personally. My mother would say, “It’s just the right thing to do” especially if the deceased had no living relatives. It was considerate to show up and pay your respects and was the norm in our small community to reach out when people were suffering or celebrating. You helped each other whether it was making a casserole for a new mom, creating Kleenex flowers for wedding cars or taking part in the rituals of death. My mom grew up at a time when older generations died at home and families and communities took care of the details that followed. She naturally passed this on to her children.

A death education course in my high school inspired me to consider funeral direction as a possible career but in 1998, just two years after I graduated with a diploma in social service work, life, unexpectedly, led me to birth doula work and that is where I remained for fifteen years working with labouring, birthing and new mothers and their families. Although birth and death are the bookends to life, there were times the line between birth and death blurred and the space between disappeared. It was in these times that I found myself effortlessly able to shift the support I was providing.   

With my daughter….December 2003

During this time as a birth doula, I became a mother. In 2003, our daughter endured an abrupt lack of oxygen at birth resulting in significant brain damage. Thus began a precarious journey of living with the knowledge that we would likely outlive our daughter. She was given a life expectancy of age 7 or 8. And “death” walked alongside us, showing itself in frantic 911 calls that left us shattered and determined to savour every moment of life with her while we had her.

The home dying and death of my grandmother on Jan. 1st 2011, affected me profoundly when I experienced firsthand that my doula skills were easily transferred to help my grandmother as she made this final transition. My interest in death care was sparked yet again but I was not at a place in my life to explore this further. Expanding my officiating services in 2013 to that of Life-Cycle Celebrant and specializing in funeral ceremonies, came naturally and I felt tremendous fulfillment in offering meaningful ceremony to those who were facing the death of a loved one head on. 

That Death Lady

In 2015, I came upon the BeYond Yonder Virtual School for Death Midwifery (which eventually changed to the BeYond Yonder Virtual School for Community Deathcaring in Canada) and I knew I had found the course that I needed to take.  My reason for enrolling in this course was a desire for a deeper understanding of caring for the dying and the bereaved to enhance my celebrant practice and my volunteer work at a local hospice. I was also under the impression that in twelve weeks (300+ hours of study), I would be certified in some way as a “Death Midwife” with the credentials to set up shop and start offering my services by the spring of 2016.

I soon found out that this was not the case at all and expanded my initial vision on what I thought my practice would look like to this: “I believe that my role as a death midwifery practitioner in the community will begin with education and establishing positive relationships with the more progressive funeral homes in the area. I think I will become a “go-to” person for questions surrounding death and dying and because I am a part of the community, I may be more approachable and more easily accessible than booking an appointment with a local funeral director.  Because I will not be charging a fee and my time is extremely valuable, I know that my boundaries will be tighter with clients outside of my friends and family.”

Looking back, I find it interesting that I wrote that I would not be charging a fee because a month later, I changed my views a little. When asked the question: Are home funeral guides who offer service for pay simply adding another consumer layer to the funeral industry? I replied: “I think it depends on where they are in their head. Are they coming from a place of “You need me. You can’t do this on your own” or are they coming from a place of “My time is valuable and I should be compensated fairly for my time?” If the death midwifery practitioner is going out into the community to empower families with education and support then I think having compensation for that is okay. Moving into a family’s space and taking over while charging hundreds of dollars is, in my opinion, moving in on funeral industry tactics and territory.”

By the halfway mark, I was understanding that my role was fairly stand-off-ish and that death midwifery was more about a movement than a career. And as the final weeks unfolded, a deeper knowledge was percolating and my original thoughts were transformed into more meaningful insights. The in-depth coursework and journal entries pushed me into spaces I would have never explored had I not taken part in this course. It urged me to examine my death denial even though initially I was insistent that I was NOT in denial.

As the course was wrapping up, I recognized that my initial thoughts on the “scope of practice” of the death midwifery practitioner was vastly different than what it had turned out to be.  I discovered that my role was far more minimal than I had anticipated coming into the course. My entire focus and perception of the death midwife changed tremendously and I was somewhat disappointed that I didn’t have a clearer understanding. The more I realized that this movement was about empowering the family and education, the more I realized that this course was more of an interest course as opposed to something I could use to enhance my career and work with the dying and bereaved. I remember feeling a bit frustrated that I had spent a significant amount of money to ultimately provide information to members of my community without ever receiving any type of compensation.

As the last week came to a close, I had done a complete 180. I decided that I would not be calling myself a death midwifery practitioner, death midwife, death doula or home funeral guide. My intention was to quietly move about my life reading and learning and preparing for the deaths of my daughter and other family members.

Perhaps the greatest revelation from this course was the clarity I gained on how I would like to care for our daughter in her dying, death and after death. It is hard to place value on knowledge that has led me to a place of confidence where I have breathed life into these old ways that should have never been lost in the first place. What I didn’t expect was that this course would bring me to a place of readiness to care for my own dead loved ones. What a tremendous gift this will be not only to them but to my siblings, nieces and nephews. By caring for our own, they will learn the skills that will continue to be carried down through the generations and community led death care will have returned to my family.

In the months that followed this life changing course, I returned to my work as a celebrant designing unique and meaningful, custom ceremonies and allowed time for all that I learned to settle into my psyche. By January 2017, I created and began offering a unique death preparation course to my community. I continued to host the Death Cafes I had been offering since 2014 and volunteer my time giving massage to the residents and their families at our local hospice. My career as a Life-Cycle Celebrant has been thriving as I continue to use the art of ritual and ceremony to assist people in navigating dying, death and bereavement.  

When I completed the BeYond Yonder course, I didn’t believe it was necessary to call myself anything as I assumed the community would come up with their own terminology…. “You know Julie Keon? She’s that death lady.” And that is exactly what happened.

The Derailment of a Movement

But then I got caught up in the movement that had taken on a life of its own like a runaway train. I felt torn between my heart, that wanted to just be there for whomever found their way to me, and my mind, that felt pressured to acquire more (and more) schooling from the plethora of doula trainings that seemed to crop up almost daily and to give myself a title of Death Doula. I was struggling with the desire to empower people in my community through creative, educational gatherings while feeling under-qualified and believing I needed to spend a lot of money and time on training to prove that I was worthy of offering these services.

To my surprise, I was approached to teach and train death doulas and everything changed. I looked forward to attending the course as an observer (as a first step to becoming a trainer) but was sorely disappointed. Participants invested A LOT of money for something that lacked insight and depth and that could have been taught in half the amount of time. For the most part, it was a regurgitation of information as opposed to teaching valuable knowledge gained from actual experience. I was so frustrated by the end of it, that I was certain I did not want my name attached to it. It became clear to me that in a lot of instances, the ones who were really cashing in on this trend were the organizations offering the trainings.

I recognized that the fifteen years I offered birth doula services to my community was my greatest education in life and death. Seeing this role misunderstood and treated as a commodity was insulting. Sadly, after spending many years dedicated to making the term “doula” a household word, I distanced myself from it.  This was both confusing and heartbreaking to me. I continued to teach my death preparation course and offer guidance where needed within my community. Requests for my course curriculum often came from people who had zero experience or knowledge but who wanted to teach it. I had dedicated far too much time, thought and love to give it away. Besides, it was crafted around my own experiences; various topics illustrated with personal story telling.  The calls came in regularly about where one goes to school to become a death doula and I became increasingly disheartened. By this time, you could even pay for an online course to find out how to become a death doula.  

The Breath of Death

 “I felt the breath of death on that sunny afternoon but it wasn’t my time; it was just too soon. For a fraction of a second, I was cradled at the veil between Life and Death but LIFE prevailed.” ~ Julie Keon, November 6th 2019

As a Life-Cycle Celebrant, I am consistently reminded that whether we are ready or not, one day it will all come to an end. For some of us, it will be abrupt and unexpected while for others, it will come with awareness when given a terminal diagnosis. To say that I have a privileged awareness of death and its ability to come out of nowhere would be an understatement. I am reminded regularly through my role as a Celebrant. Yet as a mother to a child with medical fragility who lives with a shortened life expectancy, I hold a deeper understanding that death is always lurking nearby. At least I thought I did.

There is nothing like a near death experience to jolt you awake and shake up everything you previously believed to be true. On October 19th 2019, I was driving on a sunny fall day to my last wedding ceremony of the season. A shadowed dip in the road competed with the sun in my face to alter my vision for just a second. It was in that second that unbeknownst to me, a large buck had wandered into my path and at a speed of 85km/ hour, I hit it full force without warning. My air bags deployed and I managed to keep control of the car, pulling it over safely to the side of the road. Although the (minor) traumatic brain injury and whiplash I have been dealing with for the last several months has been tough, I have also been experiencing an awakening of sorts.

What I haven’t shared with many people is that although I have no memory of before or right after the collision, my brain managed to capture a microsecond flash of the moment of impact. This “flash” is of the airbags partially deployed and the outline of a deer through the white powder that the bags emit upon deployment. Considering they inflate at a speed of 300km, it is quite remarkable that my brain captured this microsecond of memory. It is this flash of memory that woke me in the early hours of the morning in the days and weeks following the accident.

I knew deep in my bones that it was in this moment that things could have gone either way. Surviving what could have been a fatal collision dissolved any control I thought I had about my life and death and there was something immensely freeing about it. It’s as though my body and mind were cradled between life and death which was both terrifying and fascinating. The immensity of that microsecond left me feeling profoundly vulnerable yet surprisingly peaceful and calm. The intensity of it would be impossible to live with indefinitely. As it began to fade, I wanted to cling to that sense of teetering between life and death if even for a microsecond.

What was most shocking to me, was the realization that even though I thought I was aware of how quickly and unexpectedly our lives can end, there was still a part of me that unconsciously believed that it wouldn’t happen to me anytime soon. Intellectually, I knew my death could come at any time. I had honoured enough people through ceremony to know that many lives end unexpectedly and sometimes tragically. Regardless, I still planned and expected to live to be 90. I have a child that is completely dependent on me and will always be until the end of her life. I know now that some part of me believed that it couldn’t happen to me…….until it did. There is nothing that could have awaken me more profoundly than this sudden close call.

This has rocked me so deeply that I now view the entire community deathcare movement in a completely different light. Although I have been troubled by aspects of it for a very long time, I am recognizing that much of it is, in its simplest form, another way of denying death. Now this seems contrary to what is happening considering the countless Death Expos, Death Cafes and death conferences cropping up all over the place. And people like Caitlin Doughty (Ask a Mortician), for example, have made death (and work related to it) “positive”, and hip. A whole lot of people have come out of the woodwork and latched onto a trendy movement. In a grave (pun intended) attempt to soften the sharp edges of death, I think we have lost reverence for it and even make a mockery of it through witty memes, skull themed paraphernalia, Gothic personas, humourous YouTube videos and TED Talks. I, too, am guilty as charged.

Is It Just Me?

As I wrote at the beginning, I have struggled this past year with a deep concern for what originally started out as a movement and has, in many ways, morphed into a sugar-coated version of a funeral industry that lost its way a long time ago. It began with good intention but has transformed into its own machine where death doulas are being “trained” (I use that word loosely) at a rate that far exceeds a market that, frankly, barely exists at this time. Is it just me, or is everyone suddenly jumping on the death train with a desire to become a professional to assist the dying?

Now don’t get me wrong, I do believe that a good number of people are jumping on this train for the right reasons. And many were part of community deathcare long before it became a thing. I have dear friends who identify as death doulas and even train death doulas and so I mean no disrespect. If you are one of these people, I trust you will easily understand where I am coming from. However, there is a dark underbelly to the movement that is disturbing and concerning. For example, I recently read a thread on social media of creating a sub type of death doula for parents like me. I was dumbfounded at the number of people who were wanting to “work with peds” and with “dying children.”

As a mother of a child who is medically fragile, I have naturally assisted the parents in my community when their children are palliative. Of course, they have tremendous support from the palliative team and I simply bring a different type of support and care. I encourage them to slow things down after the death and to consider after death care, ritual, etc. I am NEVER present at the deaths as this is not my place, unless they want me there. My role is to empower, educate and support THEM so they can do everything on their own. And you know what happens after that? They, in turn, pass this knowledge on to the next family that must go through the death of their child.

What it really comes down to, after you peel back the layers, is an imbalance of too much ego and too little integrity.

When so called death workers are uttering things like, “How can we make death sexy?”

Or when (privileged) white women (and men) are dropping thousands of dollars to attend “Become a Shaman” trainings 

Or when people flock to gush over a death guru / plastic shaman

Or when people are paying ridiculous amounts of money for the dime-a-dozen, death doula trainings,

Or when a supposed “death doula” tells me I am “lucky” because I am personally connected to a children’s hospice…..

Something. Isn’t. Right.

For my own sense of peace, I must retreat from the online communities and return my focus to the physical community in which I live. I have given too much energy fretting over the potential demise of a movement that I am still hopeful will recover.  In the meantime, my support and guidance will be offered where needed in a way that was taught to me by my mother who was taught by her mother and grandmother. By distancing myself from all that doesn’t sit well with me in the community deathcare movement, I can focus on how I can best support my own family, circle and community.

I am not sure we need specialized death doulas. Perhaps, instead, we need to remember the ancient skills that our families and communities used to know. We need to be reminded of those skills and pass them on. As we determine our comfort level, we can take back some of the responsibility of caring for our loved ones at the beginning of their decline and at the ending of their lives. And if the thought of caring for one’s own dying and dead is not appealing, even frightening, then we need to have people in our communities who can be called upon; the death ladies, if you will (like my mother before me). Regular women and men in the community who show up with their hands and hearts (and maybe a casserole for the caregivers) sharing knowledge and support without it being a ‘profession’ that involves monetary transactions.

My hope is that the “movement” finds itself in a similar place I found myself when I was blindsided by that close call. To continue moving in a sustainable and positive direction, we must pause and re-evaluate what will best serve our communities. Each one of us needs to ask ourselves if we are coming from a place of ego or integrity. And then we need to listen to the answer and let that guide us forward.

If you enjoyed this piece, you will LOVE Danna Schmidt’s article: “Knocking on Deathcare’s Door~ An Open Letter to the Community Deathcare Movement