Death Dialogues: Death Doula Merri-Lee Agar
Death Dialogues features interviews with professionals who deal with death, grief, and grieving in their work. From creatives to funeral directors to taxidermists—we talk about why and how they've chosen to spend their working life examining the afterlife.
When I first heard about doulas, I was familiar with the term as it related to bringing life into the world. I understood this work to involve babies and birthing plans and moms who wanted anything but fluorescent hospital lights and medicated drips. And, before my mom died, I really only understood end of life care as something that was an option for people who were terminally ill or far down the path to old age.
Since speaking with Merri-Lee Agar, I've come to understand what expansive, important work doulas do when it comes to death and EOL care. And, most importantly, why it's work that should be better understood by the general public before they reach the point where they "need" it. The concept of "needing" it alone is one that I'd like to shift and rework for people with interviews like these, as thinking about how we want to live out our lives until the end is necessary and "needed" long before we die.
I work in a fast-paced job full of planning and spreadsheets and calendars. "Looking to the future" is the backbone of my work, and yet... I have yet to talk to my partner about exactly who I want holding my hand when I die if I end up in hospice. I have yet to plan what kinds of measures I want taken if I fall ill, and I am nowhere near knowing exactly what I want to happen if I have complications during child birth, surgery, or old age.
"We are BUSY. Our lives are packed with careers, family, friends, lists, and we always assume there will be a tomorrow. But there is no tomorrow for many." - Merri-Lee Agar
As complicated and personal as birth can be, so too can be death. But it's something that we can begin to plan for long in advance of diagnoses or grey-hair-days of the future, and that planning is accessible to all of us if we're proactive rather than reactive.
I was lucky enough to pick Merri-Lee's brain about her life, her work as a Death Doula, Bereavement Specialist and Reiki Master/Teacher, and how all of her experiences have combined to make her an inspiring, hard-working woman. In return, she provided me with insight into the doula and hospice professions and great advice for people who want to die well, but also live well until then.
AF: As a professional in the death space, you’ve dealt with the many stages of death and loss. Also, your personal experience—your mother dying while giving birth to you, her coming back to life, then eventually you guiding her through her last six weeks alive—has shaped how you think about death as a “journey” rather than a simple, final end point.
If all of us looked at death as something we have to plan for—both in regard to how we live our life, as well as with regard for the loved ones we leave behind—how could this change our society’s relationship with death?
MLA: Death is not the opposite of life, death is a part of life. Death is the opposite of birth, and all of it is a journey from our first breath to our last. Along that journey, there are a myriad of “milestones”, birthdays, graduations, engagement, marriage, children, retirement and death is just another one of the milestones in our lives. I think that if our society viewed death that way—as something to plan for, which it absolutely can be and is with my clients—it could help to eliminate some of the fear around it.
But we are BUSY. Our lives are packed with careers, family, friends, lists, and we always assume there will be a tomorrow. But there is no tomorrow for many. Nothing is promised beyond this moment. That can be scary to consider. But if we lived our lives appreciating each moment, leaving nothing unsaid, mindful that nothing is promised, what would be left to fear?
AF: Some (probably many) people think that end of life care strictly deals with a single person and their final days or weeks on earth. Your work as a hospice professional is complex, though. It involves many stages—living well, dying well, grieving well—and considers the entire community that surrounds and supports a dying person.
What’s unique about the kind of perspective and care you bring to dying and grieving people?
MLA: Bereavement begins at diagnosis, not death. Life is forever changed for the person diagnosed and those who love them at that moment, regardless of the prognosis or the outcome. A diagnosis puts life into perspective—it is a “slap in the face” reminder that we are, in fact, mortal.
The person with the diagnosis begins to grieve the life they thought they would have, and things often change quickly for them. If they are seeking treatment, often times they are off work, they are having horrible side effects, they feel sick, and their appearance changes. All of these are reasons people grieve. They have lost their routine, their sense of accomplishment, contribution to the home, their social circle—so many losses in a short time.
A colleague of mine once said “the dying experience many deaths before they die”, and I found that to be so poignantly accurate. These feelings are often replicated in loved ones—fear, frustration, sadness, anger. There is always so much going on.
I have been told that I naturally exude an openness that sets people at ease and allows them to feel safe to explore their dark thoughts and feelings with me. I hold space for them, I support them, I encourage them, I empower them. Sometimes it is validating their choices. Sometimes it is answering hard questions honestly. Sometimes it is finding a way to shift hope for a cure to hope for a good death. Sometimes it is just crying with them. But it is always about helping the dying person to define what living well and dying well means to them, and then encouraging their family to get involved to plan and create their dying journey together.
AF: Given the unique work that you do, I assume there are always questions, discomfort and, unfortunately, skepticism.
What might people not know about the kind of work you do? What, in your experience, is the most common misconception, and how do you combat those misguided understandings?
MLA: I think the biggest misconception is how much death doulas can offer, if given the opportunity. Many think that we are essentially the Grim Reaper, showing up just in time for death. But there are so many missed opportunities that can have immense meaning for the dying person and their loved ones when we join the journey that late.
I prefer to be contacted when someone has received a terminal diagnosis. I first like to learn about the dying person—who they are, their family, their career, the life they have lived so far. I offer to help capture all of that and/or who they want to be remembered as through legacy projects. I like to learn about their goals: what do they want to accomplish before they die? Where do they want to die? What they want to happen after (if they even know)? I offer information on all of the options available to them in their community. Once it is established where they want to die, I like to learn about who they want there, what they want to be happening (music, reading, etc.) and help plan the vigil. Once I learn what they want to happen after they die, in the case of a home funeral, I can help plan and facilitate that. All of these are opportunities for deep meaning with the dying person and those who love them, which often leads to a more peaceful death and creates a beautiful foundation for grief.
AF: Though I’m sure the work of traditional doctors—those that work in hospitals, the ICU, etc.—and people in your field could be viewed as completely separate solutions for the dying, I’m curious about how they could also work together.
What is your take on how people preparing for death should think about traditional hospital services, in-home palliative care, and services like a death doula?
MLA: I view traditional hospital services as acute care—something entirely different from palliative care. They are two completely different mindsets and types of care. My opinion is that hospitals are where people go to get well, not to die. That said, not everyone has the option of in-home palliative care and a hospital is their only option. It is not ideal to die in a hospital, but it is better if there is dedicated palliative care there. My experience has been that anyone who works in palliative care does their very best to help people die peacefully and as well as possible. Death doulas can be very helpful in trying to create the desired atmosphere and facilitate the vigil. The problem is, it’s still a hospital—cold, sterile, busy, noisy, public.
In-home palliative care is certainly more desirable and more comfortable for everyone. Often times, the reason people end up in the hospital is because the family who is home with the dying person doesn’t know what to expect or what active dying looks like, and they call 911 out of fear. Education is a big piece of what death doulas do. We teach the dying person and their loved ones what to expect so when it happens it isn’t scary and they don’t panic. Things are often more rushed in a hospital than at home as well when it comes to after death care. The line I say to all of my clients is “pick up the kettle, not the phone” at the time of death, meaning that there is no rush to call anyone to come and pick up the body. I encourage them to make a cup of tea and spend time with the body of their loved one. Bodies look very different when someone has died. They are completely still. No breath. No movement. Still. Being in that space and witnessing the stillness of their person helps to register and integrate the loss and can help immensely with grief. I encourage touching the body, bathing, anointing and dressing the body. Spending some last precious time with their loved one before their body is taken away. There are not the same time restrictions when death occurs at home as there are in a hospital, though death doulas can certainly help create a more meaningful space in both.