The Role of Doulas in End-Of-Life Care
Introduction
When people talk about a “good death,” they often refer to a comfortable and pain-free experience. But what if we could go beyond that and ensure that a person’s final days are filled with the things they cherish the most, providing them with peace and comfort? This is where end-of-life doulas come in.
What are End-of-life Doulas?
End-of-life doulas are professionals who assist individuals in preparing for their death and reflecting on their lives. They help individuals identify their greatest joys and regrets, address any fears or worries they may have, and define how they wish to be remembered.
Going Beyond Medical Care
Unlike medical professionals who focus on clinical and medical tasks, doulas provide emotional and practical support. They may engage in activities such as reading aloud, offering companionship, and creating a peaceful environment through soothing activities like singing or aromatherapy.
Breaking the Taboo
Society often shies away from discussions about death. Elizabeth Johnson, executive director of the Peaceful Presence Project, highlights that doulas play a crucial role in initiating conversations about death and providing the necessary support and resources to help individuals prepare for the end of life.
The Allied Team
End-of-life doulas work collaboratively with other professionals in the palliative care and hospice teams. Their unique skill set allows them to offer more time and emotional support to individuals during their final days.
Expanding the Reach
End-of-life doulas are not limited to hospice settings. They can also assist individuals who opt to receive care at home, ensuring that they are aware of all available resources to make their final journey as comfortable as possible.
Meeting the Doulas
End-of-life doulas can be referred to by various names such as soul midwife, end-of-life coach, or transition guide. While their services are not covered by Medicare or private insurers, some doulas provide voluntary services or operate on a sliding scale fee basis.
Going the Extra Mile
Similar to birth doulas, end-of-life doulas offer personalized services to each client, encouraging them to reflect on their lives, make amends, and leave behind a meaningful legacy.
Support for Families
It’s not just the person who is dying that benefits from a doula’s presence. Families often require practical and emotional support, and doulas step in to provide a comforting and understanding presence during these challenging times.
Where to Find End-Of-Life Doulas
Interested individuals can seek the assistance of end-of-life doulas through local hospices or by exploring directories provided by organizations such as the National End-of-Life Doula Alliance. Training programs and organizations also help match individuals with certified doulas.
Choosing the Right Doula
When selecting an end-of-life doula, it’s essential to inquire about their training, experience, and services offered. While certification is not mandatory, it can provide an added layer of assurance. References and testimonials can also aid in the decision-making process.
Unveiling the Secrets of End-Of-Life Care
End-of-life care is an area that often remains unexplored. Many individuals are unaware of the role that doulas play in providing comfort and support during the final stages of life. These compassionate professionals go beyond medical care to ensure that individuals have a dignified and peaceful transition.
Embracing Conversations About Death
The presence of doulas encourages open discussions about death, enabling individuals to express their desires and choices for their final days. This proactive approach helps alleviate fears and ensures that the person’s wishes are respected and fulfilled.
Creating Lasting Legacies
End-of-life doulas aid individuals in creating meaningful legacies, whether it’s through writing letters, planning a funeral, or engaging in legacy projects. By capturing important memories and experiences, they leave behind a tangible and heartfelt gift for their loved ones.
Enhancing Support for Families
The support offered by doulas extends to the family, providing them with solace and guidance as they navigate through the emotional and practical challenges that come with a loved one’s terminal illness. Their presence eases the burden and fosters a sense of understanding and empathy.
Furthering the Reach of Doulas
With the growing recognition of the role of end-of-life doulas, it’s crucial to expand their availability and accessibility to individuals across various settings, ensuring that everyone has access to compassionate and personalized end-of-life care.
Summary
End-of-life doulas play a vital role in providing emotional, practical, and spiritual support to individuals during their final days. Their presence goes beyond medical care, creating a nurturing environment and facilitating meaningful conversations and experiences. By embracing the role of doulas in end-of-life care, individuals can ensure a peaceful and dignified transition for themselves and their loved ones.
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When people say someone had a “good death,” they usually mean that someone was comfortable and pain-free. But what if you could help their final days include the things they treasure—like their favorite song, who's at their bedside, even the scent of a candle in the room—so they feel at peace?
That's why some people turn to doulas at the end of their life. They are among the professionals who can help someone prepare for their death and reflect on their life: their greatest joys and regrets, any fears or worries on their mind, and how they want to be remembered.
It's a job that many people don't want to think about.
“We live in a culture that denies death,” says Elizabeth Johnson, executive director of the Peaceful Presence Project, a nonprofit end-of-life doula collective in Bend, Oregon. Doulas can be part of the team that helps prepare people for death by starting conversations about it, as well as providing comfort and resources. Hospice care Palliative care teams and other professionals also work in these areas.
Palliative care often involves a team of people, such as a social worker, chaplain, and nurse who check the patient's vital signs, administer medications, and change dressings. Doulas, on the other hand, do not have the required medical training and do not perform any clinical or medical tasks. They may read aloud to a patient, clean up the mess, or sing with someone.
“Doulas can enter those spaces without support,” Johnson says. While a hospice social worker or chaplain may visit once a week, “doulas have more time and bandwidth. They are available to listen deeply during times of acute need,” says Johnson, who serves on the board of directors for the National End-of-Life Doula Alliance (NEDA).
Doulas can also help patients outside of hospice. Merilynne Rush, RN, a doula in Ann Arbor, MI, and vice chair of NHPCO's End-of-Life Doula Advisory Council (formerly the National Hospice and Palliative Care Organization), remembers a client who felt overwhelmed after bringing her husband home. from the hospital to die. Rush talked to her about palliative care, a social worker, palliative care and how to get a hospital bed. “She had no idea about any of that. No one at the hospital tells you,” says Rush, who was also president of NEDA.
Likewise, Cynthia Schauffler of central Oregon contacted Peaceful Presence about a friend with terminal cancer. “My friend asked me when she should call hospice and I didn't have the means, resources or contacts to help her.”
The group's doulas began visiting their friend twice a week. Visits included reiki, art therapy and conversation with a chaplain. They received palliative care and talked to their family about what to expect.
You may hear end-of-life doulas referred to as soul midwife, end-of-life coach, death midwife, transition guide, or death doula. Unlike hospice care, Medicare does not cover the cost of a doula.
Private insurers also do not reimburse doulas. But some doulas provide voluntary services through a hospice or nonprofit organization.
Doulas may charge an hourly rate, from $45 to $100, or on a sliding scale. Or you may be quoted a flat fee of $500 to $5,000. Costs will vary depending on the number of visits, location, whether the doula will stay overnight, or other service requests.
Similar to a birth doula, an end-of-life doula tailors services to each client. Beyond putting wills and advance directives in order, they encourage the dying to reflect on their lives. Are there relationships you want to repair? Anything you should say or do before you leave? Who do you want to see again before you die?
There is no typical case when you are a doula. “She's everywhere,” says Rush, a former palliative care nurse and also a midwife. It's no different than the old tradition of having a neighbor, friend or aunt come help, she says.
Doula visits can be daily, weekly, or last several years. They can help write letters, do laundry, plan a funeral, or create a legacy. A legacy project might involve captioning photos, creating scrapbooks, or organizing recipes to pass down to family.
One of Johnson's patients had an extensive collection of records. She helped him write meaningful stories about his life that coincided with each album. She hung the stories in her room for visitors to read and discuss with him.
Sometimes the family needs more practical or emotional support than the person who is dying, especially if that person is not conscious or alert.
Joanna Harmon of Finksburg, MD, described her doula as “a formidable advocate” who helped her cope with stress and emotional strain when her father was dying in 2019. The doula was trained by Gilchrist, a hospice in Maryland that has offered volunteer doulas for her clients since 2010.
“He sat with my dad for up to 3 hours and held his hand so I could leave the room.” The doula also helped her stop thinking about “the inevitable” by asking her about her childhood with her father. “She was someone to talk to, to cry with, to get those things off your chest,” Harmon says.
Schauffler says her friend's doula dropped everything to be there during her friend's final hours and then stayed in touch with her husband. “She made a big difference,” she says.
To find an end-of-life doula, check with local hospices that can work with volunteer doulas. Or start with the National End-of-Life Doula Alliance's state-by-state doula directory.
These end-of-life doula training programs can also match you with people who have completed the course work:
- International End of Life Doula Association
- The International Douglas Institute
- University of Vermont Larner College of Medicine
- Lifespan Doula Association
Ask potential doulas about their training, experience, and rates, as well as their availability and support, advises Rush, who also trains doulas as the owner of The Dying Year. Also, see if they offer the services you want. Massage Therapy? Meditation? Meal preparation?
You may choose to hire an end-of-life doula who has completed training courses and received certification. But no license or credential is required to practice. “There is no local, regional, or federal authority, nor universally recognized regulatory or accrediting body that assumes responsibility for or provides monitoring for doulas at the end of life,” the National End-of-Life Doula Alliance website states. “There are a growing number of organizations that offer certification, but it is voluntary.”
Get references and also consider if they have experience but no formal credentials. “The person may have a lot of experience and not have any certifications, so don't rule it out,” Rush says.
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