INELDA Scope of Practice
INELDA defines an end-of-life doula as a nonmedical person who accompanies, educates, and advocates for those who are planning for death, diagnosed with a terminal illness, or facing imminent death, and their circle of care. Doulas also support people and communities who have experienced a sudden death.
INELDA-practicing doulas offer holistic support to the dying person and their circle of care through presence, full-self listening, respect of autonomy, and awareness of the dying process. Doulas may offer resources and education, when asked, to help individuals and their care circles make informed decisions around end of life. End-of-life doulas aim to reduce health care inequity through more access to information, support in navigating complex decisions, and increased encounters with the dying. The positive impacts of having end-of-life doula support can reduce direct care provider burnout, lower emergency room visits and aggressive treatments, and increase death literacy and quality of life at the end of life. Furthermore, those who have end-of-life doulas present for the death of a loved one often pursue the field of study and become stewards of this work.
Accountability
We acknowledge that there are no currently enforced industry standards that end-of-life doulas must adopt, and we invite our community to utilize INELDA’s scope of practice, code of ethics, and core competencies as guiding frameworks for delivering care. We start from the premise that a robust practice of self-awareness allows conscientious support for the dying person and their relational autonomy. We acknowledge that we are part of a larger movement of deathcare practitioners.
INELDA-practicing doulas act as stewards of an accessible, equitable, and compassionate deathcare system that seeks to holistically affirm one’s humanity and end-of-life choices.The INELDA scope of practice and code of ethics are in addition to the policies and procedures put forth by care provider facilities and communities where doulas offer their services.
Skills and services that doulas may provide:
- Cultivating death-curious conversations
- Presence and accompaniment
- Safe space for listening
- Education about planning for end of life
- Physiological death education
- End-of-life planning
- Supporting cultural, religious, and spiritual practices
- Reprocessing sessions
- Scribing of end-of-life planning choices
- End-of-life projects
- Connection to community resources
- Respite care
- Nonmedical comfort care
- Navigation through complexities of dying process
- Sitting during imminent death
- Basic grief education
The INELDA Doula Approach
The INELDA Doula Approach offers a process-based model with three principles that help inform doulas as they provide support for a dying person and their circle of care. The INELDA Doula Approach was co-created by practicing end-of-life doulas, gleaning from their lived experiences and essential practices. Our approach describes a simultaneous experience and set of principles we engage as doulas. As we created the approach, we thoughtfully considered how this reiterative process can be utilized in any situation.
The three principles within the approach are brought together by the foundation of full-self listening—the underlying skill that is required to be an end-of-life doula. It serves as the underpinning for how we show up to meet the dying person. INELDA’s approach is applicable in inpatient care facility models, private settings, and anywhere a person may die. This reiterative approach can be used to address the needs of any person planning for death, diagnosed with a terminal illness, or facing imminent death, and for those who have experienced a sudden death.
Doula Approach Principles
Self-awareness: Doulas practice from a place of self-awareness, which invites ongoing reflection of their own beliefs, preferences, and biases toward the concept of death. When the doula can separate their own identity from those they support, they can show up with greater cultural sensitivity, understanding, and respect for the dying person and their circle of support.
Autonomy of the dying: A dying person has the ability to exercise self-determination and relational autonomy when considering their choices for end of life. The doula understands that the person they are accompanying and supporting at the end of life, or that person’s proxy, drives the agenda.
The dying process: The dying person goes through both physiological changes and loss at the end of life. Each person’s dying process is unique and will inform the type of doula care that can be offered to the dying person and their circle of support.
Standards of INELDA-Practicing Doulas
INELDA-Practicing Doulas:
- Recognize the autonomy of the dying person and their circle of care.
- Offer communication and presence rooted in self-awareness and full-self listening.
- Commit to understanding the intersectionalities of the people they are accompanying and aim to increase access and equity in end-of-life care.
- Discuss and explore end-of-life options available by state and country, when initiated by the dying person.
- Offer knowledgeable and supportive context for the dying process along with community-based resources to the dying person, their circle of care, and the community at large.
- Support and advocate for the dying person and their circle of care.
- Provide deathcare from within or outside structural systems.
Limitations of Practice
INELDA-Practicing Doulas:
- Recognize that engaging in activities of touching, moving, and cleaning the dying person may involve the exchange of bodily fluids and that personal protective equipment should be used. Furthermore, these physical care practices are not required by the end-of-life doula. Providing physical care may unintentionally create harm and requires explicit consent of both the dying person and their circle of care as well as their medical team. Consent is deeply nuanced, and it is recommended that doulas co-create an approach for consent with the dying person to ensure clarity throughout all the phases of end of life.
- Are not required but may choose to provide (with consent) physical contact, including hand-holding, light massage, and applying lotions or lubricants. Doulas are encouraged to never initiate or suggest touch, rather to wait until the support is explicitly requested from the dying person and/or their circle of care. The doula may agree or disagree based on their own personal boundaries and level of safety.
- Respect the boundaries of medical care providers and do not engage in giving medical assessment or initiate interventions pertaining to either mental and physical diagnoses and treatment.
- Recognize that there are inherent risks when supporting someone at the end of life and will go out of their way to seek permission for approval for anything that may affect the dying person’s physiological outcomes.
- Those holding additional licenses acknowledge that those services are outside of the scope of practice as an end-of-life doula. Doulas who carry multiple certificates, certifications, or skill sets that a dying person may benefit from, should engage solely in their role as a doula, unless consent from the dying person and their circle of care has been reached. Doulas acknowledge that enacting multiple roles at one time may cause boundary confusion and unintended harm. Enacting dual roles may also threaten a doula’s additional licenses. It is the doula’s responsibility to consider previously held licenses and agree to always be transparent with those they are serving. INELDA advises that doulas strive to maintain the singular role of doula as they provide care. This stance is born out of a desire to lessen confusion in care, decrease coercion, and maximize the efficacy of the end-of-life doula role.
- Cannot deliver drink or food to the dying person without prior consent from the medical team or primary caregiver.
- Cannot provide delivery of medication to the dying person. In the case of supporting someone who is enacting the benefit of medical aid in dying, a doula may act in the role of support and/or handling medications used. Visit the Academy of Aid-in-Dying Medicine for latest best practice information.
INELDA-Practicing Doulas Are Informed by INELDA’s CARE Values
Collaborative: Work together toward a collective goal
Community: Cultivate connected spaces that nurture trust, belonging, and safety
Cultural Humility: Honor different lived experiences in a shared space
Advocacy: Mobilize action toward a cause
Accessible: Strive toward representation and an open path for all
Accountable: Demonstrate responsibility for our actions and results
Respect: Value others culturally and spiritually
Risk-taking: Defy social norms in order to create a greater awareness
Reputable: Serve with integrity
Equitable: Recognize the differences in others’ needs and circumstances
Ethical: Represent humanity in terms of rights, obligations, and fairness
Evolving: Continue to acknowledge change and gain wisdom from that change