Tag: advance directives

And why you need to know about their work

In my position as a retired hospice physician I often hear stories of end-of-life experiences that did not go well for patients or their families, both in the hospital and at home. When people describe the challenges they’ve faced, even when working with a local hospice, I tell them that a death doula might have made all the difference. But most have never heard of a death doula and have no idea what they do.

Unfortunately many people are unaware of this rather new field of deathcare that is poised to change how people and their loved ones navigate death, dying, and what comes after. But I’m here to tell you about it so you can have more options and make better decisions for yourself and your loved ones when you are in a time of need.

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What Is a Death Doula?

A death doula is a non-medical guide who offers emotional, spiritual, and practical support before, during, and after death. We often say that death is much more than a medical experience—it is a personal, emotional, spiritual, familial, societal experience that we have largely chosen to ignore for the past century. Most people at the end of life need far more than medical care alone can offer.

Hospices have been created to help with the medical aspects of care and also offer social work and chaplaincy support. But in this modern world of Western medicine, hospice staff members are often carrying heavy caseloads and may have constraints on the time they can spend with patients and families. Many gaps in care can arise for those being served at their time of greatest need, which leads to the stories of suffering I’m often told.

Unlike hospice nurses, who manage the medical aspects of end-of-life care, death doulas aren’t bound by institutional rules or time limits. They show up and fill in the gaps during those times of great need. In the best of worlds they work alongside the hospice staff, each offering their expertise and collaborating for the best care possible. But when the hospice staff experiences pressure to shorten visits, the death doula is more able to focus on presence for as long as needed.

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What Do Death Doulas Actually Do?

The services offered by death doulas vary widely and some may choose to specialize in one area or another. Some doulas sit at the bedside, some hold space in advance when illness is newly diagnosed, some serve the dying directly through the last breath, others assist families and caregivers with after-death plans.

What unites them is a passion for changing how we care for people at the end of life. The people called to this work are devoted and excel at being present during times of suffering with love and compassion. Here is a list of some core services provided by death doulas:

• Death education – helping people understand the dying process, physically and spiritually, including early in the process of illness
• Advance directives & planning – guiding people through end-of-life paperwork with compassion
• Ritual design – creating meaningful vigils, farewells, or legacy ceremonies
• Family support – helping loved ones navigate grief, guilt, and decision-making
• Hospice augmentation – providing what hospice often can’t: time, touch, storytelling, bedside presence
• After-death guidance – assisting with body care, home funerals, or grief rituals
• Meaning-making – helping the dying reflect on life, purpose, forgiveness, and legacy

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Why This Work Is Still So Unknown

While the modern death doula movement got started in the early 2000’s, the work of providing support to the dying is ancient and used to be available in every neighborhood and village. But modern healthcare and burial practices that emerged at the turn of the 20^th century caused a dramatic shift in illness and death care away from the family home and into institutions. So over the span of a half century we lost all the intrinsic knowledge of how to care for our own dying loved ones—and we made death taboo, the very aspect of life we used to hold near us so tenderly.

The death doula movement is trying to revitalize the “old ways” of being with dying in a new form—not necessarily a next-door neighbor, but a trained helper who can show up at your door in a time of need with just the right tools to offer. Most people are unaware of death doulas and many communities lack access to this kind of care because the movement is still young. But things are changing and we can help them change faster—by talking about death doulas and sharing what’s possible. And also by getting training ourselves so that we can be the ones holding presence when the people we love are at the end of life.

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Why Everyone Needs What Death Doulas Offer

It’s hard for most of us to imagine what the end of our own lives might be like. If we have not experienced the death of someone close to us we have no idea what it involves and what it takes to make the last breath as peaceful and loving as possible. That’s one reason why so many people are caught off guard when they suddenly find themselves caring for someone 24/7 with absolutely no training or understanding of what’s happening.

Take it from those of us who have been through these scenarios many times—you will need support when someone you love is dying and at the time of your own death. You’ll be better off if you spend some time now learning about the work of death doulas and if there are any in your community.

Some aspects of death care that you may not think of now—but you will need later—include:

• Permission to grieve—not just at the time of death but throughout the process of illness
• Time to reflect on life and relationships and what is needed for healing old emotional wounds
• A sense of meaning and tying up loose ends; making sense of the events of life and how they have mysteriously unfolded for you
• Guidance when systems fall short, which they inevitable will; you will have impossible decisions to make and will need support through that process
• A calm, compassionate presence that can change everything for the people going through loss; a tragic experience can become sacred in the presence of love
• A role model for how to show up for one another—not just in dying, but in living with more depth

“If you don’t need a death doula today, you will someday. Or someone you love will. And when that time comes, I hope you know they exist.”

Death Doulas and Modern Technology

At this time of rapidly expanding technology and artificial intelligence there is even more need for the human touch and heart-based presence of a human death doula. While AI may be able to augment the work of doulas by recording advance directives, researching funeral poetry and customs, or offering tips to caregivers—in the quiet moments and the liminal spaces where the breath falters and the veil is thin—the touch of a human hand, the tear that falls on a cheek, the softly whispered blessing, are not replaceable.

Death doulas may choose to use AI themselves to augment their training, to learn about unfamiliar cultural or religious death traditions, to find recipes for a client’s special dietary needs, or the perfect prayer for a vigil. But they should not fear the technology—the need for human presence will never disappear.

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How to Choose a Death Doula

Remember that there are many different types of services offered by death doulas, so be clear about what type of help you need. Consider factors like training, area of specialization, availability, experience, and certification when making a choice. Many doulas will offer a free consultation to get acquainted before you decide who to hire.

Check with local hospices, palliative care facilities or community websites to find out if there are doulas in your area. In addition the following organizations have national doula registries where you can search within your state and community:

• International End of Life Doula Association (INELDA)
• National End-of-Life Doula Alliance (NEDA)
• Going With Grace Death Doula Directory
• Ever Loved
• Doulagivers
• Death Doula Collecive

Be sure to talk to your loved ones if you’re interested in the possibility of hiring a death doula. Let them know that everyone benefits when the right care and assistance are available. And now that you know about death doulas pass this information on to others who may need it as well.

You matter because you are you, and you matter to the end of your life. We will do all we can not only to help you die peacefully,
but also to live until you die. 

-Cicely Saunders

Check out my next post on Substack where I’ll explore how AI might help us deepen our own death awareness.