End-of-Life Doulas provide support, guidance, and comfort to individuals and their families before, during, and after the dying process. We do this by companioning people as they navigate the mental, physical, and emotional process of dying.

—My goal is to help you reflect on your relationship to death and previous losses, and help you get clarity around what matters for you when it comes to the end of your life.

—I want to help address some of the unknown, confusing, or scary parts of death.

—I want to help you consider how your death might affect the people around you and plan for that.

—And I want to empower you and show you that you have options.

Doulas support people at the transitions of life. The role is modeled on birth doulas and came about when a hospice worker was inspired by the care that they saw birth doulas providing to people giving birth. They realized that dying IS labor. The dying person is working, and the body is going through a natural process—just like the body knows how to give birth, the body knows how to die. A doula helps people prepare for what to expect and helps make it more comfortable and potentially less scary.

I was trained by an organization called INELDA, which stands for International End-of-life Doula Association. I really like them and their approach, which is why I chose them for my training. Read on to see how their website describes death doulas.

FROM INELDA’s website (inelda.org):

End-of-life doulas provide companionship, comfort, and guidance to those facing a terminal illness or death. Our non-medical holistic support encompasses emotional, spiritual, and practical care. We offer resources to help the dying person, along with their family and loved ones, make informed decisions in a supportive environment.

A doula can become involved any time in a person’s life. We offer support when people are impacted by a life changing illness, after a terminal diagnosis, when death is imminent, or even after a death—to help with light grief support. Sometimes family members or loved ones of the person dying seek support and guidance from end-of-life doulas.

Doulas normalize deathcare by creating spaces to hold conversations leading to increased communication and increased spiritual and emotional well being. When individuals plan for death, they have autonomy over their decisions and are able to clearly define their end-of-life wishes with family and loved ones. While there are alternative names for end-of-life doulas like death doula, death midwife, death coach, end-of-life coach—we all seek to provide compassionate deathcare.

Know that different doulas will have a different focus or specialty, but generally, doulas provide a wide range of support to people…

EMOTIONAL & MENTAL SUPPORT:
This looks like holding space for you to explore difficult things. Lots of active listening and reflecting back what is said, helping you hear your own questions, rather than always providing answers. Sometimes this looks like helping you or your loved one prepare for and accept death, and making it feel as comfortable and safe as possible.

In exploring emotions, feelings, desires, and wishes, we help people wrestle with questions like whether their final days will be spent with joy and wonder and love, or sadness and regret for the things not done, emotions not explored, and sentiments never shared?

SPIRITUAL & CULTURAL SUPPORT:
We’ll consider their spiritual beliefs and cultural practices and look for ways they might be brought into the journey, again leaving our own beliefs out of the process—because we’re not here to impose.

PHYSICAL SUPPORT
This can include things like non-medical comfort measures like guided visualizations and use of the breath. Or it can consist of hands-on support ranging from welcomed hugs and literal hand holding, to help with positioning and personal care at the end of life—an example of this is providing gentle foot or hand massages at the time of active dying and during the vigil. The degree of touch involved depends on both what the doula offers and what the client is comfortable with. I have yet to have any interest in being a foot massager! 🙂

Physical support can also involve simply sitting with the dying person while a family caregiver takes a much-needed a break.

LOGISTICAL & PRACTICAL SUPPORT
This might look like helping the family in administering the dying person's final wishes, but it can also include household help, running errands, transportation to medical appointments and so on. This will vary by individual doulas, as each doula establishes their own professional boundaries.

INFORMATION AND PLANNING
Some support comes in the form of sharing unbiased and evidence-based information, and as well as offering proactive planning and guidance.

Our goal is to encourage informed decision-making (and we’ll do our best to refrain from giving advice or promoting a specific choice or course of action). We might provide information about advance directives or offer resources and referrals to community resources and care providers. We might share information about a broad range of end-of-life choices, including natural burials and medical aid in dying. We might provide education as needed and desired, like what to expect during the dying process. Our support can look like anticipating pending needs and helping create a plan to address them. Or we might empower families to exercise their right to care for their own dead, through ritual, home funerals, or visitation.

Doula support can be pretty broad, but there are some things that fall outside of our scope of practice:

Doulas are non-medical care providers, so you won’t see us performing any clinical or medicalized tasks like dispensing medications or managing wound care. We won’t provide medical advice or persuade clients to follow a specific course of action or treatment. Some doulas may hold medical licenses and serve as health care aides in some form, but they when serve as doulas, they are expected to be very intentional about which role they’re playing and when.

We take the idea of being neutral and non-judgmental very seriously. We won’t strong-arm you into doing or seeing things our way, and we won’t lobby for specific methods or choices. We’re there to honor your values and beliefs, not ours.

No power grabs: We respect your support network and broader care teams. It’s not our place to usurp the roles of other professionals and caregivers such as hospice nurses, social workers, chaplains, home health aides, etc., and we won’t undermine your confidence in them. Instead, we’ll use our active listening skills to support you. If you’re experiencing dissatisfaction with a caregiver's practice or attitudes, we’ll empower you to initiate a discussion to voice your concerns with them and we may work with you to facilitate effective communication between all parties.

When it comes to Medical Aid in Dying, we might offer information and guidance about seeking MAiD and even be present at our client’s request, but we don’t directly facilitate the Medical Aid in Dying process. MAiD is a medical practice and therefore outside of the doula scope of practice.

No sneak attacks: We won’t force someone out of denial. You might have someone in your life who doesn’t want to talk about or admit that they’re dying. It isn’t a doula’s job to convince them to accept death. We tend to work with people who are open to engaging with us about death. If you have someone in your life who isn’t ready to talk about death, but their impending death is source of concern for you, then *you* might benefit from talking to a doula or even a therapist. While we generally advise against trying to change others, a doula can help you explore your own relationship to death.

The role implies a way of being with people…

These are some values that many of us share:

Presence—We might describe this as “walking with someone” until the end. Although we can’t take the journey for you, we can help you prepare, we can give you a sense of what to expect, and we can accompany you for most of the way. This means being present for people and bearing witness to their experience. You might frequently hear the phrase, “holding space,” which refers to being with people and allowing for whatever they need to feel or experience.

Death can bring up difficult emotions, and these are emotions we’re comfortable being with. We provide a space for people to talk through these emotions and thoughts safely and without judgment—to help them make sense of things.

Non-judgmental—The doula way of being is values neutral, which means we don’t impose our values or beliefs on our clients, and we try not to show any bias towards specific methods or choices. Instead, we’ll consider ALL of the intersecting identities, cultures, and values of the people we serve. And we’ll do our best to ensure that their wishes are honored, once we've identified them.

Empowering—We empower people by helping them get clarity and by showing them where they have agency. Our goal is to encourage self-advocacy rather than dependency. We’ll proactively provide information and support so they can make informed choices that are right for them, and when needed, we’ll facilitate effective communication between parties.

“How we choose to be and exist at the end of life is our choice and our personal journey. When possible, it should look and feel how a person wants it to, within the confines of the medical system.” -Alex Rosen, End-of-Life Doula (from a recent AARP article, quote slightly edited)

Holistic—We believe in holistic care, and we consider the needs and comfort of the whole person. Death is not a medical event or an emergency; doulas explicitly provide non-medical care. This means you won’t see them performing any clinical or medicalized tasks like dispensing medications or managing wound care, and we don’t provide medical advice. Instead, we provide a wide range of support, including mental & emotional, spiritual & cultural, physical, and logistical support.

Revolutionary—One of my instructors planted a seed with me that what we’re doing when we engage with death in this way is part of a revolution, and I had never considered that. She was speaking to the fact that bringing death out of the shadows was revolutionary because death has become so taboo in our culture. Much of the care a doula provides used to be handled by the family, community, and society, but we’ve lost that and death has become this scary and unfamiliar thing that’s hard to talk about.

Death used to be part of everyday life, and we used to do much of this for our dying and dead; and some cultures still provide this type of care. Bringing doulas into the mainstream gives us as individuals a way to reclaim some of these lost ways of caring for one another. I find this idea so empowering and inspiring!

From what I can tell, no. I use the terms “End-of-Life Doula” and “death doula” interchangeably. For my purposes, they’re the same thing. You might also hear or see me write EOL Doula to refer to the role. I change how I capitalize the terms *all the time*. I can imagine that some people care passionately about standardizing the term, but I don’t have a dog in this fight and don’t care. I do think death doula sounds cooler. And spelling it like “deth doula” feels more metal.

Sometimes, when I’m introducing myself and also talking about the fact that I am a personal and professional coach, I might describe myself as a Life and Death Coach. I’m using all of these terms to describe the collection of actions and ways of being that are embodied by an End-of-Life Doula. I’ve noticed that some people bristle when I call it a death doula. And I’ve found that others find End-of-Life Doula clinical or off putting.

It depends on the doula, but EOL doulas most commonly work with a dying person, their caregivers, family, and their loved ones as they prepare for and during the last months of life.

Some doulas specialize in working with specific populations. For example, some doulas work in the pediatric space, caring for children who are dying, while others work with pets and the people who love them. Others might focus on populations like BIPOC, veterans, or LGBTQIA+, or they might have a focus on people with a certain medical condition. I don’t have a specific focus, although I’m a bit partial to child-free adults, solo agers, and people with non-traditional family structures.

My dream is that more people have the privilege and benefit of working with an End-of-Life doula, even if it isn’t me.

A few tips for finding a death doula include:

—Start with a directory like INELDA or NEDA (National EOL doula alliance / nedaalliance dot org), or google “death doula near me” or “End-of-Life doula near me”). There are several of us on social media platforms like Instagram, Facebook, and I think TikTok (I’m not on TikTok, so I’m not positive). You can also look for a referral from someone in an adjacent space like hospice, palliative care, and funeral homes.

Directories:

—I was trained by INELDA (International End-of-Life Doula Association), so I’m partial to that organization. You can find a directory on their site: INDELDA.org. Be warned that the search function within the INELDA directory is not the greatest in the world.

—NEDA is another organization that provides training, education, and resources. Their site is: nedaalliance.org

—Lifespan Doulas is another organization who trained a dear colleague and friend of mine.

—The Institute for the Study of Birth, Breath, and Death is another organization: https://birthbreathanddeath.com/

—Other orgs exist but are somewhat of an unknown entity to me, you’re mostly on your own with them—proceed at your own risk! ;-)

Many sites are emerging as one-stop-shops for anything related to End-of-Life, or resources related to aspects of death planning. Some of them are starting to incorporate doula directories as well as other death-related resources. Some good ones are:

—JoinCake.com

—NHFA (homefuneralalliance.org)

Death doulas are still relatively new, so we’re generally not covered by insurance, but people are working on that. And while some have managed to get their services bundled with hospice coverage, that’s still an edge case.

We tend to be independent contractors, with some charging hourly rates from $25-$150+ an hour, while others set a flat fee or offer packages. And some offer sliding scale pricing. In general, pricing can vary depending on the complexity and duration of the support required, as well as the doula’s experience and location.

Packages might cover a specific scope of services, a set number of sessions, or it could cover a defined period of time, like a week or a month.

I compiled and synthesized this information while creating a presentation titled “What is a death doula?.” This information was informed by conversations with other doulas in the community, as well as wonderful information on the INELDA and NEDA sites. It contains a heavy sprinkling of my own voice, thoughts, and beliefs.
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