What is an end-of-life doula (also called death doula or death midwife):

An end-of-life doula (EOLD) is a non-medical professional trained to care for a terminally ill person's physical, emotional, and spiritual needs during the death process, which may start at diagnosis and continue through their final days. We can work with someone facing a terminal illness, their loved ones and caregivers at any point following a diagnosis to support them emotionally, spiritually, and physically (when possible). The EOLD can also provide information to help the dying person decide how much intervention they want and educate them and their loved ones about the nature of the dying process itself.  

 

Above all, the doula listens deeply to the concerns, fears, hopes, and life stories of the dying person and their loved ones to bring them peace at the end of life. The doula holds the space for the dying experience that honors who the person is and has been in their life and helps them live with purpose up to the final breath (https://inelda.org/about-doulas/what-is-a-doula/).

 

An EOLD collaborates with their circle of support, hospice and other medical professionals. Doulas provide nonjudgmental support, educate rather than advise, and are resource experts. EOLDs follow up with loved ones after a death to help them start their time of mourning and provide resources to help them with the grieving process.

 

What an end-of-life Doula is NOT:

An EOLD does not provide medical advice or assistance (administer medications or treatments).  The doula does not make decisions for clients but assists them in ensuring they have the information and clarity they need to make their own decisions regarding their care.  The doula is not a caregiver (unless explicitly hired as one) and shouldn’t be expected to help with the physical care of the dying person.
 

How is an end-of-life doula different from hospice or palliative care?

End-of-life doulas complement professional medical care from hospitals, senior-care facilities, palliative care and hospices. An EOLD supports the person facing a terminal illness and their family (biological or chosen). In addition, an EOLD may be more available to help and care for the client than hospice or palliative care, which generally can only come by once or twice a week.  An EOLD provides another set of eyes for the hospice and support team to ensure the client is comfortable, has what they need, and can recognize and report any significant changes in the client.

 

How can an end-of-life doula assist the dying and their loved ones as the end-of-life approaches?

An EOLD can help people plan for their wishes during their last days of life. This involves reviewing and explaining the choices they have in where they want to die, how the space is set up around them, the kinds of interaction they want with loved ones, caregivers, and others, and the kind of sounds, reading, smells, light, and touch they would find comforting and helpful as they transition. 

 

If the wishes of the dying person and their loved ones conflict, the doula will advocate for the importance of the dying person’s wishes while exploring ways to support the loved ones.  

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Other services an end-of-life doula might provide:

• Ensure you have all the necessary end-of-life documents, both medical and non-medical, to ease the burden on your designated representative and survivors.

• Help create a legacy project like an ethical will or life history to leave behind for their loved ones and community.

• Facilitate difficult conversations between the dying person and their loved ones.

 

Is there a standard of training and certification for EOLD?

Many EOLDs obtain their training through an EOLD training program, of which there are many in the US and elsewhere. Some training programs are offered on-line, some are solely in-person, and some are a hybrid of both approaches. In addition, there are EOLDs who have obtained their training through other end-of-life-related educational offerings, hospice volunteer training, or practical experience by serving in their community for years or working in other related professions. An individual EOLD may choose to obtain the NEDA Proficiency Badge, based on NEDA Core Competencies, to assess whether their knowledge and skill are comparable to other EOLDs that meet an agreed-upon standard. However, this is voluntary. Please note: NEDA does not accredit or evaluate any individual EOLD training program. 

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How are end-of-life doulas paid?
Currently, EOLDs are not covered by medical insurance and must be paid by the client or their care team. There is no standardization of fees, so the cost of hiring an EOL doula can vary considerably. Some explicitly have sliding-scale fees, and others might be willing to be flexible depending on their client’s financial situation.