Author: Carolynn Gaiason

I think a lot about this work that we do as doulas and the sacredness of simply holding space and bearing witness and affirmation as another soul labors out of this life–their soul set free from earthly body. If we are very lucky and gifted with the grace of time between the terminal diagnosis and active dying of a loved one, we can celebrate the life lived and find peace of mind in those “bonus hours,” days, and weeks.

In my personal experience, the gift of bonus hours changed my perception of how the time approaching death can be experienced on both sides of the bedrail. I have seen it work its “magic” time and again in my deathwork too.

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In our last conversation, we sat together in the bonus hours—that sacred, often unexpected window of time between a diagnosis and the final transition. We talked about the power of Legacy Work, from transcribing ‘Lasting Words’ to the quiet healing found in an ‘Ethical Will.’ We also explored the Doula’s role as a Gatekeeper, a gentle but firm protector of a loved one’s energy, ensuring that their sanctuary remains a place of peace rather than a revolving door of logistics.

But what happens when the bonus hours end, and the body begins its final, rhythmic retreat? For many, this is where the silence becomes heavy and the waiting turns into wondering. In this post, we step into the Active Dying phase. It is a time that requires a different kind of sight—a ‘Doula’s Wisdom’ if you will—to recognize the body’s subtle language. Today, we’ll discuss how to navigate these final physical hours not with fear, but with a steady, informed presence that honors the soul’s departure as much as we honored its arrival and its journey.”

The Shift

In the beginning, Doula work is about doing (paperwork, cleaning, advocating). In the Middle Space, it shifts to being. We are holding space for the person to exist as themselves—not as a patient, not as a tragedy, but as a human being with a story that is still being written.

Vigil Planning

It remains important to continue to use this period, before active dying begins, to put pieces in place for the things to come. I am a planner and I have the added blessing of having a pretty clear idea of how the dying process will unfold. It is my process to have the answers to the to some questions not only written down, but also pre-arranged. I have seen this strategy lend itself to actuating a calm and peaceful environment repeatedly. No guesswork involved much more focused time for a client and their family to say their farewells unhurriedly. My list of things to know includes:

• If the room were to be silent, would you enjoy music to be playing sloftly? Or would nature sounds or the laughter of children playing outside be more comforting?
• Would you like a visit or visits from a faith leader?
• Do you have a favorite nightgown or quilt you want to be wearing and wrapped in?
• Do you want the windows open or closed?
• Who do you want at your bedside? Who do you not want in the room?
• Where do you want your pets to be? (We encourage companion animals to be allowed into the room as similarly as they are accustomed to being under regular circumstances. Animals understand death. Without the opportunity to process the senses of death, they can experience the senses of loss as abandonment instead.)

From here, we are more prepared for the transition. Recognizing the signs of active dying and how the Doula supports the family through the final hours of the physical journey.

The following is a list of transitions in the active dying process, some may be more subtle than others. The gentle progression of these transistions are merely medical markers. They are the cues for us to tighten the circle, dim the lights, and begin the sacred task of witnessing the untethering–the body’s innate wisdom of letting go:

• The Inward Retreat: Leading up to this time, you may have observed a definitive lack of appetite and thirst. This is completely normal. The body no longer needs sustenance for its earthly form. Insisting on feeding tubes and IV hydration at this time only serves to comfort those in the surroundings. We recommend letting the body follow the natural path it knows instinctively–food and water are for the living world.
• At this time, you will likely notice a profound withdrawal from the outside world. This is not a loss of feeling, but a shift in focus. The soul is beginning to untether from earthly concerns, preferring silence, dimmed lights, and the presence of only one or two “anchor” people.
• RE-patterning of Breath: Breathing begins to tell its own story. It may become very slow, with long pauses or take on a rhythmic, “ebbing and flowing” quality. This is the body finding its own pace for the journey, often more distressing to the witness than to the one traveling.
• The Coolness of the Journey: As the heart focuses its remaining energy on the vital core, the hands and feet may become cool to the touch or take on a mottled, purplish hue. Think of this as the body gently gathering its warmth inward to protect the spirit’s transition.
• “Vigil Sleep”: This is a transition into a deep, non-responsive sleep. While they may no longer speak or open their eyes, the sense of hearing is often the last to fade. This is the time for “heart-speak”—whispering gratitude, giving permission, and simply being a steady, loving frequency in the room.
• The Final Release: The muscles of the throat and face relax completely. The breathing may become shallow and “sigh-like” until it eventually stops. This is the moment the Doula calls the Grand Transition—the physical container has finished its work, and the soul is set free.

Throughout this process, the EOL doula provides the bedside vigil if that is what is wanted or needed. If there are others at the bedside, your doula will offer comfort care all around and will be a continuing source of reassurance, knowledge, and understanding for grieving.

In closing, I share my Gatekeepers Manifesto. In my next post a few days from now, I will share more about the topics of unity, forgiveness, and unconditional love from the perspective of nearing death.

The Soul at Heart Manifesto

We believe that the final labor of a human life is a sacred transition that deserves a sanctuary of protection. As Gatekeepers, we commit to:
– Unity: Holding a space where family friction bows to the singular purpose of peace.
– Forgiveness: Clearing the emotional threshold so the soul may untether without weight.
– Unconditional Love: Offering a non-judgmental witness to the body’s inward retreat.
The Vigil is not a medical event; it is a love brought full circle.

If you are navigating these hours right now and feel overwhelmed, reach out. You do not have to hold this space alone.”

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Thank you for reading. I invite you to share your stories. We are made stronger and more unified as humans on this planet when we offer the blessings of shared experiences. End-of-life moments can hold some of our most treasured memories and lasting feelings of love and fulfillment. I would love to hear your stories.

With love, compassion, and comfort for those bearing witness to life’s labor out today,

Carolynn

Hello friends,

We have talked about the first 48 hours after a diagnosis and creating the sanctuary space, but what happens in the weeks or months that follow?

This is the period where the medical and care-giving routines have been established, but the “active” dying stage has yet to begin. Once pain and other discomforts are well managed the door opens on the “bonus hours,” days, and weeks. For some families this may be a time of uncertainty. It’s where waiting meets wondering–what happens next and when and how to make plans with many unknowns. My reply is: Look to the experts for signs and guidance on what is ahead and lean softly into the blessing of this time.

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As a doula, this is where we move from managing practical logistics into the soul of our death work. It is time for gentle engagement focused on bringing lasting hopes and final wishes to fruition–to the very best of our ability.

Legacy

“A person’s legacy is: The lasting impact, memory, and influence one leaves behind after they are gone, encompassing tangible things like property and money, as well as intangible gifts like values, stories, traditions, lessons, and the positive effect their actions have had on others. It’s the sum of their life’s work, character, and spirit that continues to resonate with family, friends, and the world, and at its best, may shape future generations or inspire change long after their physical presence ends.”

Sometimes legacy work can be an exercise called “Life Review” resulting in a summary of life in words or photographs (or both) about what has meant the most. Sometimes it is helping to make amends and heal fractured relationships. Sometimes it is transcribing Lasting Words to Loved Ones or preparing an “Ethical Will” to pass along values, wisdom, and items of sentimental value. Helping to bring these desires to fruitful conclusion, is the best of doula work, and it allows our loved ones to leave this life feeling fulfilled, unburdened by regret, and ready to live final days in peace. This work has extraordinary value–to both giver and receiver–and should not be overlooked unless physical, medical, or resistive conditions preclude it. It is an opportunity not a requirement.

Gatekeeping

As sunset nears, energy becomes the most valuable asset. It is import to have some control over who has access. This is another role perfect for your doula. We can easily step into this role because we don’t have the emotional history and we don’t mind being perceived as “the bad guy.” With guidance from our loved one, and with input from family, we can graciously regulate visitation and preserve energy.

Part 2 of This Post will come in the days ahead and will continue with more ways to celebrate the now and continue to prepare for what is ahead. We offer some insights on recognizing the signs and stages of the active dying period and discuss how the doula supports the family through the final hours of the physical journey.

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In conducting the final edit of this post, I want to clarify something that is true of this post and most of my writing. I use the word “family” to specify a certain grouping of individuals. I am not referring necessarily to blood relations. In my view as well as the usage of the term, the word “family” means whomever our person has chosen to surround him or herself with in their life.

Thank you for visiting once again. I will value your thoughts, insights, or questions about this topic. You can send them “quick and easy” by clicking in the Reply box located below.

I close with warmest regards and gratitude for the gradual increase in daylight that feels so hopeful now,

Carolynn

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.

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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:

1. “What is the one thing no one is saying out loud right now?”
2. “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).
3. “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.

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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