Tips For Choosing an End-of-Life Doula
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, the National End-of-life Doula Alliance (NEDA) is stepping forward to identify where unmet needs exist to help meet them. Our goal is to improve ways that people can 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 (EOLDs).
What is an End-of-Life Doula, and how can they help?
The essence of EOLD 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, an EOLD 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 (POA for healthcare, living will, authorized personal representative to handle arrangements for final disposition; durable power of attorney, last will and testament, and other paperwork, including writing an obituary)
● Helping people get their affairs in order and saying goodbye
● Organizing important information that will be needed after the death, including notifying key people, writing an obituary, etc.
● 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 dying person’s wishes are honored
● Emotional, social, spiritual support for the dying person, their family, and/or other carers
● 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, guidelines, etc., as well as shopping, errands, pet care, child care, transportation, meal preparation, other household tasks.
● Providing respite, companionship, and sitting vigil
● Guidance for after-death care of the body
● After-death support, notifications, communicating 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?
Currently, EOLDs 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 styles. Facilitated both by private individuals, as well as renowned educational institutions, they present numerous opportunities for people 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 with such training use “certified end-of-life doula” to identify their role. However, the profession is unregulated and EOLDs 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 EOLD training programs and how to choose one for your own learning, please visit: https://www.nedalliance.org/choose_eold_trainer.html.
How to find and engage with an End-of-Life Doula
Before you start looking for an EOLD, it helps to do some upfront research and reflection 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 motivation—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 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. In the end, make sure you hire someone who can provide non-judgmental support for you and your family. Trust your instincts. This is all about getting your needs met.
Here are some suggested steps to take in locating a doula who’s right for you.
1. Identify your own needs and desires for EOLD support. Review the list of the 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 an EOLD:
3. Although NEDA does not recommend or make referrals to individual doulas and training programs, we do offer an extensive list of NEDA member providers in our “Find a Doula” directory at www.nedalliance.org. Reach out to potential service providers by reviewing the list of NEDA members in our EOLD directory, which is organized by state (keep in mind that some EOLDs are happy to work remotely if you can’t find a doula in your state). Note also that several of the organizations listed in the “Find a Trainer” directory have their own separate 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 see what kind of conversation evolves from there. 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 is a helpful list of questions to use when interviewing potential EOLD support providers. Some may or may not be important to you. You may have other questions of your own. Most EOLDs will also have their own interview questions for you to answer, to ensure the working relationship is a good fit.
Remember, each EOLD is different--not only in their geographic location, but in how they work and what specific services they provide. Some are available for personal home visits, while others may work remotely over Zoom, Skype, FaceTime, or phone.
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 EOLDs work independently, some hospices and other care organizations may offer doula programs. In these programs, doulas may be volunteers, independent contractors, or employees that must abide by approved standards and procedures set by each organization.
We hope the information above helps you to locate and select someone that 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 [email protected]
###
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.” For more information about NEDA, please visit: www.nedalliance.org, or on facebook at: https://www.facebook.com/national.end.of.life.doula.alliance/.
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. © NEDA, 2022.
What is an End-of-Life Doula, and how can they help?
The essence of EOLD 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, an EOLD 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 (POA for healthcare, living will, authorized personal representative to handle arrangements for final disposition; durable power of attorney, last will and testament, and other paperwork, including writing an obituary)
● Helping people get their affairs in order and saying goodbye
● Organizing important information that will be needed after the death, including notifying key people, writing an obituary, etc.
● 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 dying person’s wishes are honored
● Emotional, social, spiritual support for the dying person, their family, and/or other carers
● 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, guidelines, etc., as well as shopping, errands, pet care, child care, transportation, meal preparation, other household tasks.
● Providing respite, companionship, and sitting vigil
● Guidance for after-death care of the body
● After-death support, notifications, communicating 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?
Currently, EOLDs 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 styles. Facilitated both by private individuals, as well as renowned educational institutions, they present numerous opportunities for people 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 with such training use “certified end-of-life doula” to identify their role. However, the profession is unregulated and EOLDs 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 EOLD training programs and how to choose one for your own learning, please visit: https://www.nedalliance.org/choose_eold_trainer.html.
How to find and engage with an End-of-Life Doula
Before you start looking for an EOLD, it helps to do some upfront research and reflection 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 motivation—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 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. In the end, make sure you hire someone who can provide non-judgmental support for you and your family. Trust your instincts. This is all about getting your needs met.
Here are some suggested steps to take in locating a doula who’s right for you.
1. Identify your own needs and desires for EOLD support. Review the list of the 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 an EOLD:
- 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 to individual doulas and training programs, we do offer an extensive list of NEDA member providers in our “Find a Doula” directory at www.nedalliance.org. Reach out to potential service providers by reviewing the list of NEDA members in our EOLD directory, which is organized by state (keep in mind that some EOLDs are happy to work remotely if you can’t find a doula in your state). Note also that several of the organizations listed in the “Find a Trainer” directory have their own separate 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 see what kind of conversation evolves from there. 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 is a helpful list of questions to use when interviewing potential EOLD support providers. Some may or may not be important to you. You may have other questions of your own. Most EOLDs 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 and 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? Formal training? Credentials? Have you ever been a hospice volunteer--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 a service area do you cover? What is your availability? How many hours could you put in per week? Are you available 24-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 care-giving/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 EOLD is different--not only in their geographic location, but in how they work and what specific services they provide. Some are available for personal home visits, while others may work remotely over Zoom, Skype, FaceTime, or phone.
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 EOLDs work independently, some hospices and other care organizations may offer doula programs. In these programs, doulas may be volunteers, independent contractors, or employees that must abide by approved standards and procedures set by each organization.
We hope the information above helps you to locate and select someone that 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 [email protected]
###
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.” For more information about NEDA, please visit: www.nedalliance.org, or on facebook at: https://www.facebook.com/national.end.of.life.doula.alliance/.
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. © NEDA, 2022.
Copyright 2022 National End-of-Life Doula Alliance, nedalliance.org
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