Although death is a universal and inevitable occurrence, the experience is often extremely challenging for all involved. Even with the help of hospice and other medical professionals, most people are totally unprepared to deal with what the end of life asks of them. To address these concerns, NEDA is stepping forward to identify and meet unmet needs. Our goal is to improve how people prepare for and experience the end of life by developing, sharing, reinforcing, and advocating efforts that provide access to holistic, non-medical support services offered by capable practitioners that we call end-of-life doulas.
What is an end-of-life doula, and how can they help?
The essence of doula care is to provide non-medical, holistic support and guidance to individuals and families through times of critical, transformative life change. Their role is to nurture, inform, support, guide, empower, and comfort. Typically, a doula serves as a kind of project manager who helps to coordinate a wide array of supportive services. Offerings vary by individual doula—some concentrate their focus on just a few specific issues and tasks; others provide a broad spectrum of services, which may include but are not limited to the following:
- Education about death and grief to help prepare for anticipated life changes
- Immediate, urgent problem-solving assistance when someone is dying
- Advance care planning assistance, for example:
- Establishing a power of attorney for healthcare and a durable power of attorney
- Creating a living will and last will and testament
- Selecting an authorized personal representative to handle arrangements for final disposition
- Handling other paperwork, including writing an obituary
- Helping to get affairs in order and saying goodbye
- Life review/legacy work
- Help planning for final disposition (e.g., burial, cremation, organ donation, etc.)
- Help with choosing and working with hospice and/or other clinical providers; coordinating community resources
- Facilitation of communication between family and friends
- Advocacy and mediation to ensure the dying person’s wishes are honored
- Emotional, social, and spiritual support for the dying person, their family, and/or other caregivers
- Non-medical comfort measures for the dying person and/or family (stress reduction, music therapy, aromatherapy, Reiki, healing touch, etc.)
- Assistance with activities of daily living (ADLs) (e.g., personal care tasks such as bathing, dressing, toileting, feeding, etc.)
- Help with logistical matters: setting up visiting hours and guidelines, as well as shopping, errands, pet care, childcare, transportation, meal preparation, and other household tasks
- Providing respite, companionship, and sitting vigil
- Guidance for care of the body after death
- After-death support, notification, and communication with funeral directors and others
- Creating rituals or ceremonies, memorial service planning
- Wrapping up loose ends
- Offering grief support
How does someone become an end-of-life doula?
Doulas come from rich and varied backgrounds. Some are formally trained, some are self-taught; some are new to the field, and some have been serving their communities for years. As interest grows in this field, an increased number of instructional programs are being offered—each with their own focus, philosophy, and teaching style. Facilitated both by private individuals and renowned educational institutions, these programs present numerous opportunities for doulas to gain valuable skills and knowledge used when supporting people at the end of life. Certificates of course completion are often awarded by training entities, and many who complete these trainings identify as “certified end-of-life doulas.” However, the profession is unregulated and doulas are not currently eligible for licensure or credentialing by a governmental, third-party, or academic agency or board. If you’d like to learn more about doula training programs and how to choose one for your own learning, please visit our Tips for Selecting End-of-life Doula Training page.
How to find and engage with an end-of-life doula
Before you start looking for a doula, it helps to research and reflect so that you know what options are available to you and are best suited for your particular circumstances. It’s important to know your own motivations—how, when, where, and why you want or need support, and who else, besides you, will be involved? Even if you are in desperate, immediate need, try to devote enough time and energy to this process so that you find the best match for your personality, beliefs, and desired type of care. An inexperienced doula with whom you feel a warm rapport may be preferable to a more experienced doula that you can’t communicate with easily. Ultimately, ensure that you hire someone who can offer non-judgmental support to you and your family. Trust your instincts. This is all about meeting your needs.
Suggested steps to take in locating a doula who’s right for you:
1. Identify your needs and desires for doula support. Review the list of services provided above and note those you think will be most helpful to you in your own particular situation.
2. Consider factors that will impact the kind of relationship you hope to develop with a doula:
- What communication and social styles do you prefer?
- Are you able to work with a doula remotely (via computer or phone), or do you require in-person support?
- Would your doula need to share a similar cultural background (race, faith, ethnicity, etc.)?
- What are your true expectations for outcomes?
3. Although NEDA does not recommend or make referrals for individual doulas and training programs, we do offer an extensive list of NEDA member providers in our directory. Reach out to potential service providers by reviewing the list. Note also that several of the organizations listed in the Trainer Directory have their own listings that may or may not include NEDA members.
4. Interview doulas that sound interesting to you. Introduce yourself and briefly share your story and why you are contacting them. Give them a chance to respond and base your decision on the conversation that follows. Note what information or questions they ask and whether their input feels welcoming, supportive, and inviting enough to explore further how you might develop a beneficial relationship.
Here are some suggested questions to use when interviewing potential doulas, keeping in mind your needs and desires. Not all of these questions may be applicable to you, and you may have additional questions that are specific to your circumstances. Most doulas will also have their own interview questions for you to answer, to ensure the working relationship is a good fit.
- How do you explain what you do? What specific services do you offer? Can you describe your style, approach, and process? What’s your personal philosophy about EOL?
- What drew you to this work? How did you get started? How long have you been practicing?
- What is your personal, educational, and/or professional experience? Do you have formal training or credentials? Have you ever been a hospice volunteer and in what role?
- What are your strengths? What do you enjoy most about your work?
- What do you most dislike about your work?
- How do you promote your services? Do you have a website? Are you on social media?
- What is your knowledge/relationship with local hospice and palliative care providers in our community? Other long-term care facilities?
- How many clients have you served? How many deaths have you attended? What is your main focus/area of interest/expertise? What is your philosophy of care?
- How big of a service area do you cover? What is your availability? How many hours could you put in per week? Are you available twenty-four hours? What if I need help and you aren’t available? Do you work with others in a collaborative capacity?
- Do you charge for your services? What is your fee structure? How would you like to be paid? Do you offer a sliding scale? Do you have a formal agreement?
- Are your services bundled with other caregiving/counseling services?
- Do you carry liability insurance?
- Can you describe your primary client demographic? (Ask cultural awareness questions that show how much they may understand about your personal situation.)
- As your client, what would you need or expect from me?
- From what I’ve told you about my current situation, how do you think we could work together?
- What happens if this isn’t a perfect fit for you or me or you can’t fulfill our needs?
- Can you provide references?
- Any objections to a caregiver background check?
Remember, each doula is different, not only in their geographic location—some are available for personal home visits, while others may work remotely over Zoom, FaceTime, or phone—but also in how they work and what specific services they provide..
Note also that fees for doula support vary depending on the specific types of support provided, and not all doulas charge for their services. Fees can be based on a package of services, by the hour, or by task. Currently, at least in the United States, Medicare and other insurance programs do not provide reimbursement. Therefore, any remuneration is usually done out of pocket as private pay. If the doula does charge for their services, it may mean paying some part of the fee upfront as a non-refundable retainer. Although doulas work independently, some hospices and other care organizations may offer doula programs. In these programs, doulas may be volunteers, independent contractors, or employees who must abide by approved standards and procedures set by each organization.
We hope the information above helps you to locate and select someone who will be able to provide you with the support you are seeking. If you have additional questions or feedback, please feel free to send an email to eoldalliance@gmail.com.
NEDA is the only membership organization that provides a big tent for all end-of-life doulas to come together and honor both what we have in common—and what sets us apart—as we share ideas and grow this profession. Because this is a relatively new and emerging field, the future is wide open as to what can be done to legitimize, improve, and expand our place in the world of end-of-life care. NEDA is an inclusive and transparent network that welcomes all end-of-life doula practitioners and trainers, as well as other interested parties, irrespective of background, level of experience, and area of interest. Regardless of how individual doulas come to this work, they all share the common desire to improve the way people experience the end of life. Their practice is based on a strong foundation of knowledge, compassion, integrity, and skill.
Note: This article was written and submitted for use by NEDA by Karen Reppen, NEDA Board Member, March 2022, with permission to edit as needed.