Hello everyone,
It is gently snowing once again here in the northeast. No worries though, it is enough to offer a sense of coziness, and not enough to warrant logistical concerns. Luna is keeping me company, gently snoring and (seemingly) dreaming of lions.
Thank you for joining me again in this space. My mission is to expand the understanding of where, when, and how the end-of-life doula-work fits in, in the end-of-life story.
When a terminal diagnosis arrives, the world tends to shrink. The air in the room gets thinner, and the future—once a wide-open map—suddenly has a very visible–yet abstract–border.
In our last few posts, we looked at the EOL Planning Templates–the “Paperwork of Peace.” Those are the “what” in this circumstance. Today, we’re talking about the “how.” How does a Doula actually step into that space?
The Shift from Patient to Person
The medical system is designed to treat a patient. A Death Doula is there to support a person–a loved one, a family member. Doulas come into the environment with love and compassion leading the way. Your loved one very quickly becomes our loved one too.
In the first session following a diagnosis, my job isn’t to look at medicines and charts, we leave that to the medical team. A doula begins by assessing the environment through a lens of peace and loving care.
In addition, we are looking for the “Unspoken Heavy”—the stack of mail piling up, the family members who are vibrating with anxiety, and the person at the center who might feel like they’ve lost their identity to a medical label adhered with a death sentence.
The Emotional Audit
Before we can use the Papers of Peace, we need to alleviate initial reactive worries. I begin by asking a few questions that the doctors won’t:
- “What is the one thing no one is saying out loud right now?”
- “What is your biggest worry of this moment?” (It’s often something small, like who will feed the cat or how the guest room needs tidying).
- “How can we arrange logistics in your home to pave the way for convenience, comfort and peace in the days ahead?”
Creating a Sanctuary Space
I seek to prepare an already favored space within the home where our loved one will spend most of the time as energy begins to wane. Is there a sunny space with a cozy chair and a corner table that holds your watercolor supplies or a current puzzle? Or maybe you most enjoy the chaise by the fireplace, where family can relax not far away, and you can easily reach your book or your crochet bag, and you can hear the cat purring on the guest chair.
- Doulas curate for the senses: What should it smell like–lavender, mint, chocolate chip cookies?
- What comforts can we bring in? A special quilt or hand-knitted throw, some framed photographs? An easy-to-reach charging station, and electric tea kettle, and a speaker to play music softly in the background when the quiet becomes imposing?
- How do we make it welcoming for others to draw near yet private enough for resting?
Advocacy and the Chosen Path
Connecting with the Healthcare Proxy is very helpful now. Knowing clearly what our loved one has decided for the course of care ahead allows us to advocate and uphold care wishes. The healthcare proxy provides the understanding based on our loved one’s values and most heartfelt wishes, which paves the way for a solid and unified support system. From there we practice saying phrases, such as: “We understand the medical recommendation, but based on [Name]’s Quality of Life values, we are choosing [X] instead.” A similar dialog is sometimes needed with family members, dearest friends, and other well-wishers who have opinions that conflict with the chosen course of treatment or non-treatment.
Why This Matters Now
The gap between diagnosis and active dying can be weeks, months, or years. If we don’t start the Doula work early, we spend the final days in a panic of logistics. Typical doula-assisted clients spend more time in gentle meaningful activity–such as legacy projects and recording lasting words for loved ones–than those without trained guidance. By starting now, we claim that time for living as fully as possible focused on what matters most.
In the next post: I take a deeper dive into the time that follows the initial crisis response and shifts to weaving the path toward legacy work (and play), and focuses on what matters most in this time–the “now” that remains. This is an important, and the most unique, part of the story, no two are the same, and it is where our loved one can recapture some control. Stay tuned.
As always, I welcome your questions and thoughtful contributions in the reply box below.
Have a wonderful today. Do make it a point to spend some moments practicing true presence and mindfulness before the sun sets. That regular practice improves our outlook significantly.
With great warmth and love,
Carolynn