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  • Writer's picturePortland Elder Care Council

PECC March Blog

Many people have heard of or experienced the support of a birth doula, but a surprising amount of folks are still stunned by the concept of a death doula. Both are significant transitions in the lifespan, and we feel both deserve to be equally tended to and prepared for. This month we're talking about what End-of-Life Doula is and Community Death Care. Read on for more information.

The End-of-Life Doula and Community Death Care

Did you know that in the US, 90% of people say that talking with their loved ones about end-of-life care is important, yet only 27% have actually done so? Or that 60% of people say that making sure their family is not burdened by tough decisions is extremely important, but 56% have not communicated their end-of-life wishes?

Our culture is funny - we work very hard to avoid talking about or planning for death, the most inevitable thing in all of our lives. But we’ll thoroughly plan for trips to the grocery store! Is it because we don’t feel able to plan for what we don’t understand? Maybe our avoidance is due to not knowing where to begin or what supports are available. Or maybe it’s because our culture is so entrenched in death-avoidance on pretty much all levels, i.e., “if I talk about or plan for it, death will surely come sooner!” (As end-of-life doulas, we can attest if this were the case, we would be long gone!) We often meet people in a place of “I don’t even know what I don’t know.”

Let me introduce you to end-of-life doulas, a solution to help guide you wherever you are in your end-of-life planning process.

Many people have heard of or experienced the support of a birth doula, but a surprising amount of folks are still stunned by the concept of a death doula. Both are significant transitions in the lifespan, and we feel both deserve to be equally tended and prepared for.

There was a time when death-care was a normal community event. Your neighbors helped to dig your grave and build your coffin, your family tended to your bedside, and your wake was held in your home. The Civil War marked a time of change in death-care where dead soldiers were shipped long distances back home to their families, and embalming practices and mortuary professionals gained in popularity. This new practice, combined with the rise of modern medicine, contributed to the medicalization of death and the loss of knowledge of the community-based care we once all leaned on.

So here we are in 2023, re-educating families and communities on their rights, options and meaning-making opportunities in end-of-life preparation with fresh new eyes. Are people more excited to talk about death now? No, not really. But slowly, we are seeing a shift in the recognition that the death doula practice even exists - from the laymen to the medically trained.

What is an end-of-life doula?

Doulas are essential members of the community with training and/or experience in end-of-life care. Doulas offer non-medical, holistic emotional, and practical support. They empower clients and families by sharing information and knowledge that helps them make informed choices based on their values and priorities. This can lead to individuals feeling more in control and having an end-of-life experience that is more aligned with who they are.

According to the National End-of-Life Doula Alliance, or NEDA, doulas are “at the forefront of social change in America that will have far-reaching, positive impacts on those who are served.” We truly believe in this notion of cultural activism, as seen in our support of shifting ideas about death - one client, family, or conversation at a time.

How do doulas help?

We focus on the normalization of end-of-life and meet our clients where they are on their journey. We use a coaching model to educate and empower our clients. By helping folks plan ahead - ideally, when clients have more energy - they are freer to focus on the quality of life and spending time with their loved ones as their health declines, rather than having to use the last of their energy scrambling to make those decisions and plans.

Although no two client journeys look the same, we approach each experience with open hearts, minds, and ears. We hold space for whatever comes up along the way - be it emotional processing or resource needs. With our commonly used tools of deep active listening and presence, we can help you identify your priorities, leave a lasting legacy through heart-centered projects of your choosing, and create a death-plan based on your values.

Benefits of working with end-of-life doulas:

Doulas can provide consistency of support, being there when a person is healthier, through early diagnosis and palliative or curative care, then through hospice and active dying. As other care teams change, doulas are the common thread throughout the whole experience. It’s important to note that most of the beneficial work done with a doula is best achieved when we are engaged early in a disease process; however, the reality is that is not the norm thus far. Our hope is that with education and possibly a little encouragement if needed, folks will engage with doulas and additional benefits like hospice much earlier for extra support.

End-of-life doulas can help to round out the care team by introducing families to other local resources like chaplains, social workers, counselors, and caregivers. We also provide education on possibly lesser-known/utilized adjunct services like grief counseling, ceremonialist, and home funeral guides, to name a few. We understand the sentiment “it takes a village,” and we can help you create one! And it’s important to know doulas work alongside your medical team and that no support or services on your care plan need to be forfeited when engaging with a doula.

As mentioned earlier, doulas can provide education on lesser-known death-care options. This can include Voluntarily Stopping Eating And Drinking (or VSED) as well as Medical Aid In Dying (or MAiD, also known in Oregon as the Death With Dignity Act). Doulas, take the time, hold the space, and don’t shy away from these challenging yet important conversations.

So as you can see, current death-care can be much more robust than the traditional standard you may know would imply. There are many more service options available than most know to even ask for (doula support included!), and more flexibility to what families can do for themselves, which can lead to much more personalized, authentic, and potentially healing end-of-life experiences.

Contributed by Maryann Giunta of Evening Star End-of-life Doula Services, LLC


Community Events

Dying Well Series: Remembrance and Memorialization

Saturday, April 1 at, 11 am-12 pm | West Linn Public Library

Join us in a discussion about how to memorialize, remember and honor our loved ones in a death-denying culture. We will be exploring Legacy Projects, which are unique creations in which individuals can pass on emotional & spiritual inheritance to their loved ones. We’ll also look at rituals and traditions that can help bring meaning to a time of loss and support coping and healing throughout an end-of-life journey. This is part of our Dying Well Series.

Since 2018, Evening Star End-of-Life Doula Services has been providing public education on end-of-life issues, as well as personal support for families dealing with serious illnesses and end-of-life. We are happy to be participating in this series presented by West Linn Library. Our sessions are part information/education and part conversation. Bring your open mind and heart, and sense of humor as we talk about tools/approaches that can ease the end-of-life experience.

Rose Elder Law Events & Free Seminars

March Events | Online & In-Person

We offer seminars throughout the Portland Metropolitan area and, on special request, throughout Oregon. Topics we discuss include: Planning for Incapacity, Protecting Your Family in 2023, Estate Planning 101, You Can Afford Long-Term Care and more. Click the link below for the full calendar and events.


Thanks for Reading

If you have any questions or suggestions on topics you would like to see, let us know! We would love to hear from you. Don't forget to check out our events page for our next webinar or in-person event.

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