Our Code of Ethics

Purpose
The National End-of-Life Doula Alliance supports end-of-life doulas (EOLD) by offering this Code of Ethics as a working guide to standards for appropriate behavior and practices in business and research. Our goal is to encourage EOLD practices that exhibit compassion, integrity, consistency, and competency across all platforms and approaches by providing clear ethical expectations of practicing end-of-life doulas.

Definition
End-of-life doula — trained individual who provides non-medical, holistic support and comfort to the dying person and their family, which may include education and guidance as well as emotional, spiritual or practical care.

Code of Ethics
NEDA, as a membership organization, provides the highest ethical standards to guide our members’ conduct. NEDA members agree to:

• act honestly, truthfully and with integrity in all their transactions and dealings;
• avoid conflicts of interest;
• appropriately handle actual or apparent conflicts of interest in their relationships;
• treat every individual with dignity and respect;
• honor confidentiality;
• deal fairly and with total transparency with money matters;
• comply with both the spirit and the letter of the law;
• act responsibly toward the communities in which they work and for the benefit of the communities that they serve;
• be responsible, transparent and accountable for all their actions.

 
Conduct

• EOLDs maintain the highest standards of conduct in their service to others
• EOLDs do not engage in nor condone acts by others that may constitute sexual harassment 

 
Confidentiality

• EOLDs protect information received in confidence from individuals, families, caregivers, and involved professionals
• EOLDs share information only with written permission or, when all efforts to obtain permission have been exhausted and only in the event that the information may inform a situation that is life-threatening (as in the case of communicable disease)
• EOLDs take all necessary precautions to safeguard electronic (including social media), written, and spoken communications with anyone involved, including extended family and professional colleagues
• EOLDs continue to protect the privacy of individuals and involved parties after death occurs
• EOLDs obtain written consent to disclose details of cases for the purpose of educating others and take care to disguise names and details
• EOLDs are careful when sharing confidences with colleagues, respecting the privacy of all involved 

 
Conflict of interest

• EOLDs do not accept gifts from suppliers, organizations or businesses that in any way set up a reciprocal expectation
• EOLDs do not show favor to clients for personal benefit
• EOLDs are aware of conflicts that may arise between their role as consultant, the families they serve, and other professionals
• EOLDsare free to consult with other professionals provided that the consultation does not place the consultant in a position of conflict of interest and providing that all concerns of privacy, informed consent, and confidentiality are met appropriately
• EOLDsavoid conflicts of interest that interfere with discretion and impartial judgment. If a real or potential conflict of interest arises, they take reasonable steps to resolve the issue in a manner that reflects the best interests of the person(s) served.

 
Completion of duties

• EOLDs have a duty to complete services as contracted according to the terms of agreement
• EOLDs unable to conclude the contract will give ample advanced notice, help the family find a replacement, and refund any fees for services that were incomplete.
• EOLDs are strongly encouraged to provide contracts in the form of a detailed proposal, including aims, activities, costs, timescales and deliverables

 
Communication

• EOLDs accurately describe training, expertise, and credentials when representing themselves to the media or other outside entity
• EOLDs represent the end-of-life doula profession in a responsible, ethical and professional manner at all times
• EOLDs maintain high standards of scholarship and objectivity when presenting information regarding end-of-life issues and practices

 
Duty of care

• EOLDs have a duty to care for others that first does no harm
• EOLDs keep the highest standards of practice and conduct at the forefront of all service to others
• EOLDs treat others with the same level of dignity and respect
• EOLDs take great care in communicating when collaborating with other EOL professionals

 
Education

• EOLDs provide accurate and timely information to the public, including individuals, families, communities, support networks, and other professionals, as needed
• EOLDs accurately represent their level of training and credentials, and attempt to provide educational material that is unbiased and consistent with universal EOLD tenets
• EOLDs make every effort to participate in continuing education to stay informed and active in the EOLD community 

 
Equality and Discrimination

• EOLDs exercise fair and objective judgment when providing quality services to all, regardless of age, color, race, gender, sexual orientation, lifestyle, religion, national origin, marital status, political belief, or mental or physical disability

 
Legal Compliance

• EOLDs comply with the spirit and letter of the law
• EOLDS know the legal ramifications and consequences of acting beyond the scope of practice as defined by NEDA and all local, state and federal laws
• EOLDs are responsible for knowing and abiding by the laws and regulations that directly and indirectly affect their services
• EOLDs adhere to the highest standards when dealing with public officials and may not accept, offer, provide or solicit any special treatment or favor from those in law enforcement, political, or other regulating or enforcement office

 
Fees for Service

• EOLDs may charge for pre-death services and bereavement services; any post-death care of the deceased’s body must be on a consultation basis only and must conform to FTC regulations regarding the practice of funeral directing
• EOLDs provide complete detailed cost information in writing prior to beginning service
• EOLDs do not solicit funds from clients separate from the contract for services; once the agreed-upon financial transaction is concluded, the client is under no further financial commitment, obligation, or responsibility to the EOLD
• EOLDs neither offer, seek, nor accept payment of any kind for referral services

 
Professionalism

• EOLDs treat colleagues with respect, integrity, sensitivity, and collegiality
• EOLDs provide transparent, detailed information to clients in writing about the services they offer/will offer
• EOLDs cooperate with other professional groups

• EOLDs are aware of the limits of their competency limits and do not misrepresent themselves as having training, experience, or qualifications beyond those they possess
• EOLDs exhibit respect for colleagues and trainers of all affiliations and training programs

 
Research

• EOLDs who engage in any sort of research with clients or other EOLDS are bound by the fundamental principles of research ethics, outlined in the Belmont Report found here, (https://www.hhs.gov/ohrp/regulations-and-policy/belmont-report/read-the-belmont-report/index.html) which include:

 1) Respect for persons– people will be treated as autonomous and be able to make decisions about whether or not they engage in research, and people with diminished autonomy will be protected;
2) Beneficence– research should do no harm and researchers will strive to maximize benefits while minimizing risk for research participants;
3) Justice– fairness (to access, recruitment, location) will be considered when designing any research study and participants should not be included merely because they are easy to access or are vulnerable and less likely to decline participating. Research conducted should have relevance to the population being studied. 

• Research Integrity Training: Researchers must have knowledge/training about how to conduct ethical research, such as that provided here (https://ori.hhs.gov/general-resources-0).
• Conflict of Interest: Research should not be conducted with participants who are paying, or have paid, for services to the EOLD from whom the researcher is receiving funds (“dual role research conflict guidelines” - one cannot conduct research with someone who is also paying your wage and/or is vulnerable to care).
• Informed Consent and IRB approval: An informed consent process must be engaged for any persons participating in research that is intended for publication and/or wide dissemination (as opposed to internal quality control processes). Details of the specific informed consent process and a protocol of the study to be undertaken must be submitted to an Institutional Review Board (IRB) or a formally recognized ethics committee to determine that the basic principles of ethical research are maintained. No research should commence without specific approval by an IRB or ethics committee. IRBs are maintained by most universities, hospitals and healthcare systems, and can be accessed by the public at large. 
• Violations of these standards that are brought to the attention of the NEDA board are subject to NEDA Board review regarding consequences, including formal reporting to relevant IRB/ethics committee.

 
Volunteer services

• EOLDs who volunteer services are held to the same standards as those who charge a fee for service 
• EOLDs volunteer their services when conducting after-death care