End-of-life doulas offer physical, emotional, spiritual and pragmatic support to individuals and families before, during and after death. But what does that really mean? Unless you’ve experienced the support of a death doula yourself, it can be hard to articulate exactly what we do. Much of our work is intuitive, responding to the needs and unique attributes of the people we serve. Our services vary from guiding you to prepare your end-of-life plans, to family caregiver support, to creating personal comfort plans, to vigiling with you and your loved ones through your final months and moments, to many more offerings.
I know curiosity about this role runs deep, as evidenced by the incredible turn out I’ve had for my Fireside Chats for Emerging Death Doulas (more information below), and my Meet the Death Doula presentations I co-host with local doula colleagues (there’s another session coming in the new year – stay tuned for more information!). Even mainstream publications like Readers Digest Canada see the value of death doulas. Recently, I was honoured to be interviewed about death doula work for their feature “A Planner’s Guide to Dying,” in their December Holiday edition. I was thrilled to see they recommend hiring a death doula as one of their top tips for preparing for end-of-life! This article isn’t yet available online, but I encourage you to seek out this edition at your local grocery store or news agent. There is a wealth of other end-of-life tips and heartfelt stories shared within.
Death doulas strive for visibility so we can expand our reach and serve as many families as possible. We are driven by the belief that everyone deserves quality care and compassion when they are ill or approaching end-of-life and beyond. To further shine a light on what death doulas do, I’m opening up my field notes to share 3 stories from the frontlines of my practice. With humility and gratitude for the opportunity to serve, here they are:
*Names and identifying information have been changed
1. Making the Most of Limited Time
Margaret’s elderly husband was recently admitted to long term care facility after living at home independently. He has since developed delirium and is extremely agitated, begging to return home. Margaret contacted me when she learned she would be permitted a brief in-person visit with her husband. She understood this may be the only visit she is allowed due to Covid-19 safety protocols. Margaret felt overwhelmed, unable to sort through the many things she needs to address with her spouse and his care providers in this brief window of time. Where should she start?
I asked Margaret what was most important to her and together, we made a to-do list. The top of that list: connect with her husband. We explored ways she could decrease her husband’s distress. Things like matching her breathing with his and slowing it down, offering physical touch, playing his favorite music, reading the newspaper or a cherished book. Margaret agreed, if the only outcome of their time together is her husband feeling soothed and safe, that would be a successful visit.
Other items on the list included getting a clear picture of her husband’s health status and prognosis (what to expect in the coming days and months). Margaret thought the doctors would recommend some treatments, and she felt the burden of making “the right decision” for her spouse. I encouraged her to focus on getting a clear picture of the quality of life her husband could expect after the treatment. With that information, Margaret could compare what she knows of her husband’s wishes against the likelihood of him attaining that function or quality of life after the treatment.
We talked about her husband completing a MOST form (or Margaret completing it on his behalf) with his doctors. This would allow him to define the level of care he wants ranging from every available intervention to prolong life, to comfort care only to allow a natural death. With no other advance directive or written record of his wishes AND with family members barred from visiting, there are few options to help make his wishes clear. The completed MOST form would speak for him if he could not speak for himself.
Finally, we talked about what Margaret needed to sustain herself through this emotional time. We did some breath work and a brief grounding exercise and decided to connect again in a couple of days.
2. Finding Peace by Giving Thanks
Angela is the primary family caregiver for her dad who has advanced brain cancer. They have a beautiful relationship and Angela is doing everything she can to enable her dad’s vision of his fitting death, though her caregiver duties are seemingly endless. There are so many practical tasks to discuss like organizing home care visits and meal planning, coordinating doctor’s appointments and communicating with friends and family. Angela feels like this precious time with her dad is passing her by. There is so much she wants to say, but she doesn’t know where to start and fears upsetting him by being too emotional.
I invited Angela to imagine at time near her own end-of-life. What she might want her own daughter to say to her? Angela imagined this scene and let flow beautiful words of love that honoured her mothering and the role-model she wants to be for her daughter. She realized she could give this same gift of validation and gratitude to her dad by having the courage to speak her heart. She also realized any sadness or emotion this conversation might bring would likely tether them more tightly together. It was an opportunity she didn’t want to miss.
I offered Angela a series of questions to help gather her thoughts and prepare for this moment with her dad.
3. Holding Space for the Unexpected
Mika is a new death doula just starting their practice who asked me to guide them through creating a comfort care plan. Their goal is to prepare for their future and to also be in integrity with themselves by doing the work they will soon be asking their own clients to do.
On the afternoon of our third session, Mika told me they had learned only moments before that a cousin had died suddenly. Deep breaths. I held space and supportive silence for Mika to just be, to just experience, and to listen inwardly for what they needed in our time together. Mika told me about their cousin and their special bond, but they seemed unsure of what else to do. I offered to lead us in a visualization to honour their cousin’s gifts and imagine her as her whole self, transitioning to her next manifestation. Together we created sacred space for Mika to hold themselves gently as they started their grief journey.
What fascinates me about the doula role is how differently each doula may respond to the above experiences. How might their unique qualities and talents inform the questions they ask and guidance they offer?
My approach reflects who I am, my strengths and passions. The questions I ask and the guidance I offer are firmly grounded in my training as a death doula with Douglas College, my graduate degree in Education, my years of experience as a frontline youth worker and health policy analyst, and my growing understanding of person-centred, trauma-informed care. When I distill my practice in to three simple words, warm, dynamic, and professional are what I strive to be. Similarly, I strive for that moment of connection when my unique qualities fit with the unique needs of an individual or family.
Therein lies the magic and the deep privilege of being of service as a death doula.
If you’d like to explore the many ways I might support you and your loved ones, please send me a message at firstname.lastname@example.org
What would help calm your fears, soothe your spirit and ground your body if you had to quickly leave your home to be cared for in an unfamiliar setting like the ER, hospital, cancer clinic, respite care or hospice?
In this video I'll share the items I've included in my comfort travel bag. What will you include in yours? Let me know in the comments.
P.S. For more comfort tips see My Personal Comfort Plan booklet at www.circlespace.ca
In our interview, Dave aptly names traditional masculinity as a force impeding many men's involvement in their health and future planning. Cis gendered men (1) are often expected to suppress their emotions and project dominance. In this world view, experiencing illness and being mortal is the antithesis of traditional masculinity which prizes infallibility. Performing and enforcing traditional masculinity can cause both physical and mental illness, impair healthy relationships and normalize aggression. People who are gay, bisexual or transgender face even greater hostility, violence and pressure to conform to traditional norms. Boys and men socialized in traditional masculinity are less likely to engage in healthy behaviors, including embracing the vulnerability that is required to accept their mortality and make their end-of-life plans.
“Because of the way many men have been brought up—to be self-sufficient and able to take care of themselves—any sense that things aren’t OK needs to be kept secret,” says Fredric Rabinowitz, PhD, a psychologist at the University of Redlands. “Part of what happens is men who keep things to themselves look outward and see that no one else is sharing any of the conflicts that they feel inside. That makes them feel isolated. They think they’re alone. They think they’re weak. They think they’re not OK. They don’t realize that other men are also harboring private thoughts and private emotions and private conflicts.” (2)
Perhaps a partial antidote to this isolation and the toxicity of traditional masculinity is sharing stories of vulnerability and making multiple masculinities visible. Stories like Dave's that role-model bravely opening the door to intimate conversation. Stories that acknowledge death is not a failure nor a weakness. It is, in fact, human nature.
I encourage you to share Dave's answers with the men in your life who may be hesitant to prepare their end-of-life wishes. Do they share Dave's perspective or feel differently? You may also try these conversation starters:
With love and light,
(1) When a person's sense of personal identity and gender corresponds with their birth sex.
Interview with Dave Curtis
Please introduce yourself. What would you like readers to know about you?
Hi my name is Dave Curtis. I’m 41 years old. Dad to a tiny dog and husband to my sweetheart of 20+ years. I’ve spent the last 5+ years struggling on long term disability with debilitating persistent pain from a hand injury. I have lived with a range of health issues for most of my life despite a generally healthy lifestyle.
Why is it important for you to make your end of life plans? What motivates you?
Throughout my life I have experienced some life altering and potentially deadly health challenges. My times in hospital taught me what I do not want for my last days of life. It also showed me that health issues arrive unexpectedly so preparedness is prudent. Once you are living with illness everything is harder to accomplish.
I am motivated to plan for death for two reasons: to ease the burden of my loved ones in dealing with my body and to reduce my own discomfort during my transition to death.
What do you think holds some men back from making their end of life plans?
I think it’s possible men still feel their spouse will outlive them and will be there to deal with all the logistics of death. This is no longer the norm due to modern medicine and changes in activity and employment.
I personally have experienced some internal resistance for death planning with my elders and within myself. It usually takes the form of feeling like not wanting to ‘wake the dragon.’ As if not talking about death might keep it at bay.
Our society and our history has put a lot of pressure on men to be strong and tough. Admitting that you are mortal does not fit well into society‘s mould for men. It’s possible this has an impact on the willingness of men to engage in end of life planning.
What would you say to a man who is hesitant about starting on making their end of life plans?
You already treat many types of insurance as a given. You insure your car, house, cell phone and more. End of life planning is just another kind of insurance but it’s not for objects. It’s insurance for your end of life comfort and to reduce the burden on your loved ones at an emotional moment.
How can death care professionals, like myself, help men do this important work?
I think the My Personal Comfort Plan booklet you are offering is a great way to engage men in end of life planning. Insurance for your comfort during your final days is an easy starting place.
Is there anything else you'd like to say?
I find being prepared for something to be a worthwhile and rewarding process. It puts my mind at ease and allows me to focus my energy elsewhere. Talking about end of life planning can seem awkward. Knowing you have things mapped out for end of life transition is worth some awkward moments.
The other evening, as I stood in my kitchen preparing Okanagan peaches for the freezer, the setting sun glanced through my window, bathing the room in a warm, golden light. My mind flashed back to moments in my mum’s kitchen, then deeper in to my childhood to my gran’s kitchen. I saw three generations of girls and women working together, carefully placing rows of hand-picked raspberries and blackberries on freezer trays... the smell of cinnamon and the feel of aching muscles from milling fresh apples for apple sauce... and each of us taking a turn to stir the fragrant, sticky pot of Christmas pudding for good luck.
Feet firmly planted in my kitchen, I noticed how my body reacted to these sense memories. I inhaled more deeply, feeling my breath move oxygen through my body. My shoulders relaxed, a smile played on my lips, peace filled my heart. And my first thought was: I need to add this to my Personal Comfort Plan.
I had spent some time several months ago reflecting on the things that would bring me comfort through illness and my end of life. Things like:
I’d love to gather with my daughters and other women in my life to prepare raspberries, blackberries, apples or peaches. I want to feel the magic that happens when women share work: the conversation, connection, laughter and sense of purpose as we nurture our families through food.
Join our FREE Workshop!
I'm collaborating with Reimagine: Love, Life and Loss a Worldwide Virtual Festival on embracing life, facing death, and loving fully, during COVID-19 to host our workshop, "Getting Comfortable with Death: Preparing your personal comfort wishes." In this experiential workshop we'll explore the question, how do you wish to live as you are dying? You'll visualize your final months and moments and reimagine what's possible by defining your Personal Comfort Wishes.
My Personal Comfort Plan is filled with many original and thoughtful ways to find comfort at end of life. It gave my client a sense of control and the ability to get creative and even have some fun preparing for their end of life."
Strange times we are living in. And, as always, there is something to be learned in adversity. I am noticing that questions related to death and preparation for it are burbling to the surface for me and for other people right now.
How did we get here?
During the last century, in western settler cultures in particular, we have taken death largely out of our homes and away from our faith communities and handed it off to the experts. Medical folks, funeral directors, hospices, hospitals, long term care homes. This is where and how death is managed now. Consequently, we have lost skills. We don’t see or handle or anoint dead bodies anymore. Most of us don’t know what to do or how to be when sitting with a dying loved one or a woman who has just miscarried. No one modelled that for us, and we can’t model it for others. We often allow the professionals to mediate the experience for us. We don’t trust our instincts. No one is laid out in the front parlour anymore. Most of us don’t live on farms or hunt for our food so we are removed from the natural cycles of birth and death amongst animals.
How do we experience death and dying now?
Death is mostly an individual event in our lives and the lives of our families. It is less and less a community event. We speak in hushed tones. We don’t know much about how to move through grief or support others moving through it. The rituals and signposts of mourning are fading in our collective memories.
That is certainly how I felt witnessing the dying of my mother-in-law and my father a number of years ago. They did not seem prepared and I did not know what they wanted or how best to support them. Or even talk with them about what was going on. That felt empty and lonely and unsatisfying – as if I had somehow failed at something where no-one had explained the rules of the game to me.
How is COVID-19 impacting this?
Into this social context comes COVID-19. Suddenly pictures and statistics and warnings about death are taking up the entire media landscape. We get hour by hour updates on the number of deaths and detailed stories of how people died and the stresses on the people caring for them. It isn’t just the occasional life event that we stumble through now. We can’t escape it. Our fear and denial are harder to hide. Maybe this is an opportunity…
How could we make this a positive thing?
What if instead of allowing this to ratchet up our fear of death, and running from it, we turn around, face it, and allow ourselves to actually feel it and see where that takes us? What if that created opportunities to contemplate our own mortality, to make plans to guide our loved ones when our time comes, to think about our legacy and how we want to be remembered?
What if we brought the idea of death into the light and turned that fear into positive action? What if we took some of this ‘found time’, now that our busy busy lives have been slowed down, to take control of some small things that we can. Like making a will or an advance care plan? Like telling stories about elders and ancestors to grandchildren? Like pre-paying for our funerals? Like writing our life story or love letters to unborn descendants? What if we actually did some of that? What might happen?
Being more prepared can soften our fear
What if taking control of some concrete actions actually softened our fear? What if it made us more mindful after this is all over? What if we had a clearer sense of what is most important in life? And allowed that to guide us in the days ahead?
Death doulas witness this all the time with people who are near the end of their lives. Facing their fear and taking concrete steps to influence the kind of death and legacy they want really can soften people’s fear. It could help all of us right now. Because, while any single one of us is very unlikely to die from COVID-19, we will all die at some point. And so will everyone we love. We don’t know when or how. So why not take this time to be just a bit better prepared? Perhaps you will feel a little less afraid as a result.
I know I felt better after letting my husband and grown children know that in the current circumstances, I would not want to be put on a ventilator if it came to that. I don’t want to burden them or the doctors with not knowing my wishes. I have already lived a full life and would rather a ventilator go to someone younger – that children lose a grandparent in this epidemic rather than a parent. Sharing my wishes with my loved ones is one action I have taken to be better prepared for my eventual death.
CIRCLESPACE'S NEWEST FREE RESOURCE
Caring from Afar: Staying Connected and Saying Good-Bye During Physical Distancing
How do we show our love when we can’t be there to hold a loved one who is ill? How do we accompany them through the dying process if we can’t be physically present? This resource offers 6 steps to comfort people who are separated from their ill or dying loved one. It includes ideas for how to stay connected and ways to honour your grief through these unprecedented times.
In this field the personal is definitely linked with the professional. I’m happy to share this interview I recently did with Girl Warrior Productions and for the opportunity to reflect on the experiences that called me into being an end-of-life doula.
Chelsea Peddle. The End-of-Life Doula Bringing Comfort and Guidance When it’s Needed Most.
Today we raise our fists high and put our hands together in celebration of our Feature Girl Warrior, the compassionate and wise End-of-Life Doula Chelsea Peddle, founder of CircleSpace, a warm and engaging space to reimagine death as a normal part of the lifecycle.
What makes you a Girl Warrior?
My resilience. My willingness to find lightness, love, and connection even in difficult times.
My name, “Chelsea,” means a harbour. As a kid, I thought that was so boring! At the time I didn’t understand a harbour’s purpose, which is to shield vessels from stormy waters and to welcome people to new shores. Looking back on my career and personal life, I see now that my name was actually quite prophetic. In every role, I’ve held space for diverse people to come together to create more equitable relationships and communities. Now, in my role as an end-of-life doula, I hold individuals and families through very difficult times.
How did your father’s diagnosis of glioblastoma brain tumor change your life?
Like many teenagers, I thought I was invincible. At 15 years old, I had a great group of friends, I had found my passion in local theatre and I thought my family and my world were completely safe. That bubble popped when my dad was diagnosed with an extremely rare and aggressive form of brain cancer...
"What's your favorite thing about death?" was the first question I was asked by an earnest and inquisitive student. Whoa! Way to get things started!
This past week I had the privilege of being interviewed by a group of university students at an event called Campus Conversations, organized by Christopher Bowers, multi-faith co-Chaplain at the University of Victoria. It was a truly delightful opportunity for me to talk about my profession and to reflect on why I love this work! It was also amazing insight in to how this group of post-millenials view their relationship to death and the supports they need to accept the reality of their mortality.
Several students approached me after the interview with further questions and comments. The theme that came up the most: My grandparent recently died, how can I support my parents through their loss? We talked about being direct and honest, saying things like, "I don't know what to say but I want you to know I see how much this hurt. I'm here for you. How can I help?" We talked about setting up a weekly phone call with their mum back home, so they can look forward to a regular, loving connection. And we talked about the importance of seeking grief support, even years after the death of a loved one. Finally, the piece that surprised these students the most: we talked about the importance of sharing their own grief; for a death in the family is an opportunity to explore their own relationship to death and to put plans in place for themselves. (I'm sure you've heard me say this before, if you're 19 years old or older, you need to make an Advance Care Plan that defines the care you would want if you couldn't make decisions for yourself!).
These young people expressed so feverently their desire to be there for their parents. Their love and loyalty was incredibly touching. For me, this reinforced my belief that many of us are seeking more authentic connections and a relationship to death. But, sadly many of us aren't yet equipped for it. As my friend, counsellor Shauna Janz says, grief is a learned skill. So, too, is dying.
I felt energized and even more committed to my work as an end-of-life planner and death doula after this interview. I hope this video inspires you, too!
Campus Conversations: Chelsea Peddle... Death Doula
Chelsea Peddle is an end-of-life planner and death doula. In 2017, she founded CircleSpace: Empowered End-of-Life Planning in Victoria, BC, to help people prepare for end-of-life so they can live in peace. Through workshops and coaching, Chelsea offers emotional, physical, spiritual and pragmatic support for individuals and their families. Chelsea recently expanded her services to offer death doula care: guiding and companioning people and their families before, during and after death. Chelsea's passion is helping people find peace of mind and peace of heart in a time of great stress. She has an End-of-Life Doula certificate from Douglas College and is a member of the End-of-Life Doula Association of Canada.
You can’t take it with you, so why do we make those impulse buys this time of year? The talking unicorn you’ll want to smash within 5 minutes of inserting its batteries. The novelty back scratcher. The wind-up robot and stockings-full of plastic dollar store wares. Are we seeking connection? A moment of shared indulgence? Are we pacifying our fear of being unliked by buying more and more? If you’re like me, the answer is sadly, “Yes.”
In Dr. Phil’s words, “How’s that working for you?” Do you feel connected and loved? Are you living your values? Are you caring for your family and our planet? Are you getting what you really want and need? Likely, not.
During my annual pre-Christmas clean up, I recently took 3 bags of long forgotten toys to the donation bin and 2 more bursting with broken things to the dump. As I tossed the bags down the chute I wondered, how many of these items were meant to show my love on Christmas days past? The cost to the planet became crystal clear as my bags tumbled down, landing on other obsolete demonstrations of "love"; the cost to my relationships: a hollow feeling in my chest.
I know consumerism doesn’t bring connection; you know you can’t buy love. So, why is it so hard to change?
Perhaps it’s because this holiday season and our desire to consume is tightly wrapped in our culture of death denial.
Writer Philip Roth says, “In every calm and reasonable person there is a hidden second person scared witless about death.” And boy, do we humans work hard to quell the petrified voice of that second being.
It makes sense that shopping appears to be the perfect antidote to death. First, you feel that lovely hit of serotonin when you lay out your debit card for something shiny and new. We literally feel “love,” thanks to the hormone surge. A base need seems to be met. Sheldon Solomon, one of the founders of terror management theory, suggests our purchase then becomes a symbol of immortality; something intended to last longer than we do, thereby helping us to conquer death. For a moment, our death anxiety is quieted.
But in our world of planned obsolescence, these material symbols are fragile and their effects fleeting. They break or fall out of favour and are soon cast aside, speeding the destruction of the planet and leaving a void in our relationships. Awareness of our mortality creeps back in to our psyche. To keep our existential anxiety at bay (and to demonstrate our love), we must buy again, and again and again.
Our search for immortality is not inherently a bad thing. We just need to seek it in the right places (and perhaps become more aware of the false promises of consumerism). Being mindful about our desire to be a part of something bigger and longer-lasting than ourselves can move us in a productive direction. One that can enrich our lives now and soften our loved ones’ grief, later.
So, here’s my challenge for you this holiday season:
As you go about your holiday shopping this year, IMAGINE THIS IS YOUR LAST CHRISTMAS, HANUKKAH OR WINTER SOLSTICE.
How do you want your loved ones to remember this time with you? Is there a family heirloom or special object you’d like them to enjoy now? Are there things unsaid? Love to express? Wisdom to pass down? Next year, when they look back on this time, will your loved ones still be cherishing your gifts, or will these gifts have already faded in to the past?
Invest in experiences. Give the present of your presence and undivided attention. Gift a love letter to your beloveds. Don’t turn away from death this season. Let it inspire you and guide you to true immortality through genuine connection and love.
I’ve been debating whether to share this post as it is about my own journey through the grief of my mum’s death this past summer. I’ve heard from many people that hearing about my experience has helped them. So, I’m sharing this story in hopes that it will soothe in some way, whatever darkness may be pulling at your heart at the moment.
No matter your faith or beliefs, we seek meaning and purpose, especially when our world seems untethered through loss. Maybe it’s a message of love and release brought by an unexpected visitor. Maybe it’s a loved one asking, “how are you?” and listening deeply to your truthful reply... but my hope for you, today, is for you to ask for what you need and for the Universe to answer. May you be blessed with an open heart and open mind to receive it!
This morning, I packed up the remaining items at my mum’s and said goodbye to the house my sister, Briana and I grew up in. I wondered, as I walked through the empty rooms, how do I say goodbye to a home that holds so many memories?
Turns out, the answer came in the form of a little brown bird.
Briana and I have a long-standing relationship with birds. We believe our deceased loved ones return to us through birds to give us reassurance and comfort. Or, just a little “hello, I’m here” nudge. Our Dad has been visiting us for over 20 years, buzzing in as a hummingbird when we need it most.
This morning as I sat in the sunshine on mum’s back porch, saying my goodbyes, I heard that familiar sound of flapping at a window. I turned and saw a little brown bird trapped INSIDE mum’s house. How did it get in???! I realized I had left the front door open and on this day, of all days, this little bird chose to fly through the door and in to the house. I was stunned for a moment but then thought, Ya, this is about right! Of course mum would want to be here, in this moment, helping me to let go.
It dawned on me, with trepidation and awe, that the task before me was to literally and figuratively release bird/mum from her home. But how do I do this without giving bird/mum a heart attack? (Can you imagine?!!). A quick search yielded a long handled broom, which I used to gently encourage bird/mum to stop stunning itself against the window and fly for the open back door. After a few tries, I managed to get it out of the den and in to the kitchen where it fell on the window sill. I could see its little breath puffing circles on the glass as it rested. Bird/mum flapped about some more and eventually collapsed on to the end of my broom, exhausted. With relief, I shuffled toward the back door, bird/mum balanced on the bristles. I whispered, “it’s ok to go.”
As soon as bird/mum was through the door and clear of the house it took to the sky, directly in to the path of a HUMMINGBIRD!!! My mouth agog, I watched the two birds dance together, circling one another for a moment then perch side by side in a nearby tree. I mean, come on! Hi mum and dad!
It’s a strange reality that both my parents are now on the other side. It also feels so perfect, so poetic to witness bird/mum literally released from the physical confines of her home and welcomed by hummingbird/dad to the freedom of the open air.
Thanks mum, for once again finding a way to lead our healing. You sure come up with some beautiful and creative ways of doing it! Love you. Miss you.