What is an End-of-Life Doula?
End-of-life (EOL) doulas will work with a dying person and their loved ones at any point following a terminal diagnosis, and especially in the last months of life to support them emotionally, spiritually and physically.
Below are services EOL doulas provide. The person/family can pick and choose what is most meaningful to them, and what is needed at this time. For example, some people do not want to do a life review or legacy project, that's completely fine. Some families only need respite care and emotional support during this time, and that's what will be provided. It is tailored to what you need.
Death should be honored. An end-of-doula supports the person and family and honors the process.
The EOL doula will inform loved ones and caregivers about the signs and symptoms of the active dying process and imminent death, discuss how and when to address these symptoms, as well as what to expect as the process continues to unfold. If the loved ones or caregivers need further clinical understanding, or events and issues suggest the need for greater professional involvement, the EOL doula will reach out to the appropriate clinician to have them provide information or to intervene appropriately.
The EOL doula will be with the dying person while the loved ones and caregivers can take a break. Whether it's getting groceries, a hair appointment, going to church, etc.... the EOL doula will accompany the dying person while the caregiver can step away for several hours with ease and confidence knowing that their loved one is well taken care of.
The EOL doula may also assist in the physical care of the dying person by providing simple mouth care, assisting the caregivers in repositioning the dying person or changing the bedsheets, applying a cool or warm compress, or wiping sweat from the person’s face and neck. The doula will not administer medication or change wound dressings, or do any other kind of physical care which is out of the scope of practice.
When the doula is providing care in a facility, hospital, or hospice in-patient setting they will only assist with physical care if asked by a clinician to assist and the doula is comfortable in doing so. If assisting with physical care, the doula must abide by the rules and regulations of that setting for the kinds of physical care assistance that is permitted for non-staff people.
Life Review and Legacy Project
One of the primary areas of focus for the EOL doula is to explore life meaning through life review that helps a dying person and those close to them look at what has been important to that person over the course of their life, what they have learned, the values they have come to hold, their impact on the people they have lived among, and what they consider to be their legacy.
The EOL doula may support a dying person and loved ones in extracting from this life review the material they might want to use in creating a remembrance project, often referred to as a legacy project. This project may reflect who the dying person has been and the impact they will leave behind on people and their community.
The EOL doula may help the dying person and loved ones plan for their wishes during the 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; as well as the kind of sounds, reading, smells, light, and touch they would find comforting and helpful as they go through the dying process. If there is conflict in the wishes of the dying person and their loved ones, the doula may advocate for the primacy of the dying person’s wishes and also explore ways to support the loved ones.
When the dying person is in the last days of life - the time we refer to as the “vigil” - the EOL doula may be present within reasonable hours in ways that reflect their wishes. The primary focus of the EOL doula in this stage is maintaining and advocating for the spirit of a plan they had worked out beforehand. If no such planning work occurred prior to the EOL doula involvement, the EOL doula will work on the choices and options with those involved as the vigil begins. The EOL doula will do what they can to hold the space for the choices about the atmosphere and the wishes of all involved. The EOL doula may use sound, readings, touch, guided imagery, and ritual to deepen the sense of meaning and bring greater comfort to everyone involved.
* The EOL doula will not perform any medical assessment or intervention, regardless of their background or licensure, which lies outside of the EOL doula training and scope of practice.
Following the death, the EOL doula may help loved ones reprocess the dying experience through one or more sessions. The focus of these sessions will be to uncover recurring images, sounds, or other experiences, as well as things said or not said, things not done, or wishes unmet.
The EOL doula may discuss the nature of bereavement and encourage the processing of some of the emotions grief may bring. The EOL doula may also refer loved ones to bereavement services offered through the organizations the dying person and family had been involved with or detail community resources available to assist in bereavement. The post-death processing the EOL doula facilitates may also involve the use of music, guided imagery, and ritual to deepen the meaning of this part of their work and bring closure to their involvement.
* Adapted from INELDA Scope of Practice
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