flowers on a dark background
by
Donna Baker
,
January 18, 2021

Hearts and Bones

Death Doulas mind the gap between life and death.

One of the reasons I became a death doula is because I believe, as a culture, that we can do better. I believe that death, like birth, is one of life’s great experiences and it doesn’t have to be filled with fear and suffering.

Life and death happen in an infinite cycle. Every beginning has an ending and every ending is a kind of beginning. How are you with beginnings? With endings?

There’s also a small something in between; a sacred and sometimes sticky middle ground. A type of bridge, a transitional passage. How are you with transitions?

Death doulas (sometimes referred to as end-of-life doulas) are skilled in managing the transition. We are trained to guide folks through this passage; a kind of sherpa or docent to the dying. We understand and appreciate the stickiness. We help others get unstuck.

Just as birth doulas assist in the birthing process, death doulas assist with dying,  and birthing and dying at home are not new concepts. Until the 20th century, birth and death were home-centered. Mothers were encouraged to trust their bodies and relied on their community for support. Folks died at home not because hospitals weren’t available or accessible, but because death wasn’t considered a medical event.

Once our life cycle moved from home to hospital, technological demands and institutional policies took precedence. Mothers had strict orders to follow physicians’ instructions (some we now understand didn’t make good sense) and fathers were banned from delivery rooms. Family members who were dying were hooked up to machines so that every breath, every beat, could be monitored. Information was sent out to the waiting room in sound bites. Birth and death became seen as potentially dangerous and inherently traumatic.

But the tide is turning and as a culture we are reclaiming death and birth as natural, even sacred, events. Women have redefined birthing by giving birth at home, and death doulas are redefining death by embracing it as a human event, not a medical event. I believe it will be women, sisters in our community, who change the way we view the life cycle, not physicians and thought leaders. And death doulas are spearheading this revolution. We recognize death as a natural and important part of life. We acknowledge our cultural desire to slow down and stay close and take care of our dying at home. When death is understood as part of life and not separate from it, dying becomes less frightening, less traumatic and less expensive.

Death doulas are common in Europe, the UK, and Australia. In these places, doulas have staff positions in hospices and assisted living facilities to assist busy nurses, physicians, social workers, and clergy. Over the last 2 years, death doulas have become increasingly popular in the US; specifically, on the coasts and in the Pacific Northwest. But in other areas, like the Midwest for example, where I’m from, we are lagging a bit behind and there are lots of questions about this work. Here are a few of those questions and some answers:

At what point do I hire a doula?

Doulas are available through all stages of the end-of-life process, from notice of terminal diagnosis through active dying and death. Once you reach a point in your disease where nothing more can be done for a terminal illness, or you decide to forego additional curative treatments, death doulas offer a comprehensive approach to give you the best life possible from that point forward.

Most doulas offer a one-hour free consultation and will use this time to assess the needs and wishes of the dying person and their loved ones. If they are a good fit, together they will decide how best to move forward and when services will commence.

How will a doula help us?

Hiring a doula is helpful in many ways. We provide practical, personalized, non-medical support and fill in the gaps of end-of-life care by collaborating with hospice either at-home or in-facility. We emphasize the emotional and spiritual aspects of death by honoring the experience that the dying person and their family are going through. We facilitate conversations to help family members open their hearts and speak freely to each other.

Who hires the doula — the patient or the caregiver?

End-of-life doulas are hired by the dying person, their family members or friends, social workers, therapists, or anyone who recognizes that “dying well” takes a community. Death doulas are hired for a myriad of reasons. Some families hire doulas because caring for their dying loved one is too much to handle emotionally and they feel they would benefit from a neutral third-party. This is often the case when family members are estranged. Some folks hire doulas because they live far away from their dying family member and are unable to be physically present. Others hire doulas as a supplement to their already capable support system for respite care and sometimes the dying patient hires the doula to alleviate or minimize involving loved ones in their end-of-life care.

I’ve hired a death doula. Now what?

The process begins after everyone involved agrees on the plan to move forward and can be summarized in 3 steps:

Planning phase — Begins after an initial consult and takes place over a matter of days or weeks, depending on disease state and prognosis. During this phase the doula works with the dying and their family to address concerns, provide conscious dying education and support, assess quality-of-life and weigh that against current treatment plan, researching end-of-life options, explore life meaning, create legacy projects to leave behind, plan atmosphere and environment for final days, explore and design rituals.

Conducting Vigil — Begins at the active dying stage and takes place over a matter of days. During this time the doula carries out the end-of-life vigil plan and serves as an advocate for the dying. This includes things like assisting in physical care, providing respite for caregivers, holding space for difficult emotions and unexpected experiences, facilitating open, compassionate discussions with family, doctors, hospital and hospice staff, normalizing death and dying, maintaining sacred space, and using guided visualization, meditation, music, touch and ritual.

Reprocessing and Bereavement — Begins 4–5 weeks after death and is typically family-led but can include things like retelling the story of death and addressing recurring images, navigating grief and cultivating meaning, offering therapy referrals.

How much is this going to cost?

Most death doulas charge by the hour and rates are between $30–150 depending on experience level and geographic location. These rates include unlimited access to your doula electronically and by phone during active stage of dying, daily visits through death, and sitting bedside/holding vigil while dying. As community-centered practitioners, most doulas offer at least some of their services on a sliding scale. Many doulas take on pro-bono clients or combine their paying gigs with hospice volunteer work.

Do doulas only work with patients who choose to die at home?

Visits are generally at home, in hospice or in assisted-living facilities. Although doulas are also trained to assist those who die unexpectedly and most are accustomed to working with families in hospitals and emergency rooms. This kind of trauma requires a different level of care and these visits are customized and will look different for everyone. In all cases, doulas are committed to honoring and protecting the dying through patient advocacy and comfort care; and honoring and protecting the family through education, resource sharing and respite care.

But isn’t this what hospice does?

Hospice provides medical advice, medication, equipment and care. These services will account for roughly 5% of the care you will need. There’s a lot happening the other 95% of the time and most people find themselves in need of additional help. While we aim to work in tandem with hospice, we also acknowledge that hospice has limitations. Recent data shows that 98% of hospice patients are at the Routine Home Care level. This is defined as spiritual support, volunteer visits, comfort care and bereavement counseling— the work of a death doula.

While it’s important that we have choices when it comes to dying, we believe that most deaths can peacefully occur at home. Death doulas work to empower families and provide them with the skills and confidence they need to feel competent and central to the dying process. We create space for the dying and their loved ones to ask questions, to fumble through difficult conversations, and ultimately define and create the kind of environment the dying person has requested. We have no predisposition as to how things should go. We work patiently to discover what a good death looks like, then commit to helping loved ones carry out that plan.

There’s a gap in our healthcare system and that gap is an opportunity for community deathcare workers— doulas, hospice volunteers, grief counselors, home funeral and burial guides, art therapists, massage and reiki practitioners— to step in and destigmatize death. To help others be at peace with the inevitable so that they may live presently and die peacefully.

One of the reasons I became a death doula is because I believe, as a culture, that we can do better. I believe that death, like birth, is one of life’s great experiences and it doesn’t have to be filled with fear and suffering. I believe we can create conditions that are free from avoidable distress and excessive expense and work to ensure that no one dies alone. I believe the best death is one that takes place surrounded by the loving support of others, not at the end of expensive, unnecessary medical interventions. I believe we inherently know how to transition peacefully (wherever it is we’re headed) but fear gets in the way. I believe society perpetuates that fear. I believe we can care for our dying at home, say goodbye over the course of many days, and then grab a shovel and dig the grave and bury our dead in the places they have chosen for themselves.

These ideas are not new. In fact, they’re very old. Let’s get back to where we need to be— to a place where we care for ourselves and each other because we know and trust that we have the skills to do it more patiently and tenderly than any institution can. Back to a place where we value the dying process as much as we value being alive.

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Donna Baker is an artist, mother, wife and friend. She left a swanky career in advertising to search for an honest life that doesn’t involve persuasion and compromise. She is the founder of Columbus Community Deathcare.


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