How to read this
These are plain-language summaries for learning, not legal or medical definitions. Where a term rests on a rule or law, the number in brackets points to the source, opened and checked on 2026-09-29. Rules differ by state and change over time; check the source, or ask the care team, before relying on one. Clinician only marks decisions, orders and tasks that belong to clinicians; Not a doula task marks physical tasks a doula should not do.
A
Actively dying. Clinician only The last hours or days of life, when changes such as altered breathing, cool hands and feet, and darker or bluish skin are common. The team, not the doula, judges that someone is actively dying; a doula reports what they see. [1]
Adult Protective Services (APS). The state or local agency that takes reports of abuse, neglect or exploitation of older and vulnerable adults. In an emergency, call 911 first. [2]
Advance care planning (ACP). Discussing and preparing for future decisions about medical care in case a person becomes seriously ill or unable to communicate. A doula can help a person think and talk; decisions and documents are theirs. [3]
Advance care planning codes (99497, 99498). Clinician only Medicare billing codes for a physician's or other qualified health professional's own face-to-face advance care planning discussion: the first 30 minutes, then each additional 30. They cannot be billed for a doula's conversation. See how doulas get paid. [4]
Advance directive. Legal documents that give instructions for medical care and take effect only if a person cannot communicate their own wishes; the living will and the durable power of attorney for health care are the most common. Forms differ by state; see advance directives. [3]
Allow natural death (AND). Clinician only Another name some places use for a do-not-resuscitate order. [3]
Anticipatory grief. Grief felt before a death, by the dying person or by those close to them. It is common and does not mean someone has stopped hoping.
Anti-Kickback Statute. A federal law that makes paying for referrals in federal health care programs a crime, for the payer and for the person paid. A doula must never be paid per referral or as a share of what a clinician bills. [5]
B
Background check. Federal hospice rules require criminal background checks for hospice employees with direct patient contact or access to records; each hospice sets its own requirements for volunteers. [6]
Bereavement. The state of having lost someone to death. Grief is the response to it.
Bereavement services (hospice). Support a Medicare hospice must make available to the family for up to one year after the death, under the supervision of a qualified professional. [7]
Business associate. Under HIPAA, a person or company that does work for a covered entity involving its protected health information, under a written contract; for example billing, legal or cloud services. [8] [9]
C
Capacity (decision-making capacity). Clinician only Whether a person can understand a particular decision, weigh it and communicate a choice. It can change from day to day and decision to decision.
Care Compare. Medicare's online tool for finding hospices that serve an area and comparing them on quality of care. See the resources page. [10]
Caregiver (family caregiver). A relative, partner or friend who gives day-to-day care, usually unpaid. Supporting caregivers is a large part of doula work.
Chaplain (spiritual care). The hospice team member who offers spiritual support. Medicare hospices must assess spiritual needs, offer spiritual counseling as the patient and family accept it, and help arrange visits from their own clergy. [7]
Cheyne-Stokes breathing. A breathing pattern near death that alternates deep, heavy breaths with shallow breaths or pauses. Tell the nurse what you see; do not interpret it for the family. [1]
Comfort care. Care aimed at comfort and quality of life rather than cure. Medicare describes hospice as accepting comfort care (palliative care) instead of care to cure the terminal illness. [11]
Comfort kit. Clinician only A small supply of medicines some hospices leave in the home for symptoms that may arise. Only the hospice nurse or physician directs its use; a doula helps the family call them.
Conditions of Participation (CoPs). The federal rules a hospice must meet to take part in Medicare, published at 42 CFR Part 418. [12]
Confidentiality. Keeping what a person and family tell you, and what you see, private unless they agree it may be shared or the law requires a report. See Module 13.
Continuous home care. A hospice level of care: care, predominantly nursing care, given continuously at home during a period of crisis, rather than in an inpatient facility. [13]
Covered entity. Under HIPAA, a health plan, a health care clearinghouse, or a health care provider that sends health information electronically in certain standard transactions. A hospice that bills Medicare is one. [9]
D
Death certificate. Clinician only The official record of a death, filed with the state. Its medical section, including the cause of death, is completed by a clinician or medical examiner, never by a doula.
Death rattle (noisy breathing). Noisy breathing some people have very near death. The NIA says it usually does not upset the dying person, though it can alarm family. Call the nurse with questions. [1]
Decision-maker (when there is no advance directive). If a person has named no proxy and cannot decide, state law determines who may make medical decisions, typically a spouse, parents or adult children. Partners who are not married can be left out. [3]
Do not hospitalize (DNH) order. Clinician only An order telling long-term care staff that a person prefers not to be sent to hospital for treatment at the end of life. [3]
Do not intubate (DNI) order. Clinician only An order telling hospital or nursing-facility staff that a person does not want to be put on a ventilator. [3]
Do not resuscitate (DNR) order. Clinician only An order in a person's medical chart saying CPR or other life-support measures should not be attempted if their heart and breathing stop. A clinician writes it; a doula can help the family know where the paper is kept. [3]
Durable power of attorney for health care. A legal document that names a health care proxy to make medical decisions if the person cannot communicate them. [3]
E
Eldercare Locator. A public service of the federal Administration for Community Living that connects older adults and families with local services, online or by phone at 1-800-677-1116. [14]
End-of-life doula (death doula). A non-clinical companion who supports a dying person and those close to them with presence, planning conversations, vigil and legacy work, and support after the death. Not a clinician, and not a credentialed profession with a single governing body. See Module 1.
Executor. The person who settles a dead person's estate. Under HIPAA an executor may act as the dead person's personal representative for health information relevant to that job. [15]
F
False Claims Act. A federal law against submitting false claims to government programs. A claim that results from a kickback may also be treated as false. [5]
Family meeting. A planned meeting of the family with members of the care team to share information and make decisions. A doula may attend if the family and team agree; clinical explanations come from the clinicians.
Funeral Rule. A federal rule that lets people buy funeral goods and services separately rather than as a package, and requires funeral homes to give written price lists. [16]
G
General inpatient care. A hospice level of care given in an inpatient facility for pain or symptoms that cannot be managed in other settings. [13]
Goals of care. What matters most to a seriously ill person, used by clinicians to shape treatment choices. A doula can help a person find words for their values; the goals-of-care conversation about treatment is the clinician's.
Grief. The response to loss: emotional, physical, social and spiritual. It has no fixed stages or timetable. See after a death.
H
Hand hygiene. Cleaning hands with alcohol-based sanitizer or soap and water. The CDC prefers sanitizer in most clinical situations unless hands are visibly soiled, and soap and water when they are, before eating and after the restroom. [17]
Health care proxy (agent, surrogate). The person named to make health care decisions for someone who cannot communicate their own wishes; also called a representative, surrogate or agent. [3]
HIPAA. The federal law whose privacy and security rules protect health information held by covered entities and business associates. It does not reach everyone who hears health information. [9]
Home funeral. Family-led and community-centered care of a person's body after death, at home. Rules differ by state; ask a funeral director or a home funeral educator where you live. [18]
Hospice. A comprehensive set of services, coordinated by an interdisciplinary team, for the physical, psychosocial, spiritual and emotional needs of a terminally ill person and their family. See palliative or hospice. [19]
Hospice aide. A trained member of the hospice team who helps with personal care such as bathing. Personal care is not a doula task.
Hospice election. Under Medicare, the signed statement choosing hospice care instead of other Medicare-covered treatment for the terminal illness and related conditions. [11]
Hospice 24-hour line. The number a hospice gives families to reach its team at any hour. Help the family keep it by the phone, and help them call it; your own number is not an emergency line.
I
Informed consent. Clinician only Agreement to a treatment after a clinician has explained its purpose, risks and alternatives. Obtaining it is the clinician's job.
Inpatient respite care. A hospice level of care: a short stay in an approved facility to give family caregivers a rest. [13]
Interdisciplinary group (IDG). The hospice team that identifies and coordinates a patient's care and plan of care. A doula working privately is not a member of it. [19]
L
Legacy work. Projects that help a person leave something of themselves: letters, recordings, recipes, stories. Done with consent and without pressure. See Module 9.
Lethal means safety counseling. Clinician only A voluntary, patient-centered health care intervention in which clinicians help a person and family reduce access to lethal means, such as firearms, while risk is higher. [20]
Life review. Looking back over one's life, its meaning, regrets and gifts, often in conversation. A doula listens and may help record it; it is not therapy.
Living will. A legal document that says which common medical treatments a person would want or refuse, and under what conditions, if they cannot decide for themselves. [3]
M
Mandatory reporter. A person required by state law to report suspected abuse or neglect. For children, federal law requires every state to have reporting procedures; in approximately 17 states and Puerto Rico, any person who suspects child abuse must report. Learn your state's rules. [21]
Medicaid. A health coverage program run by each state with federal funding. Under HIPAA it is a health plan. [9]
Medical aid in dying (MAID). Clinician only A process, lawful only in some U.S. states and the District of Columbia, in which a terminally ill adult who meets the law's conditions may obtain a prescription to end their life. A doula supports the person within the law, never counsels for or against, and hands all clinical questions to the clinician. Check your state with the MAID state check. [22]
Medical examiner or coroner. The official who investigates certain deaths, such as unexpected ones. When they must be called depends on state and local rules; the hospice or family's plan says what to do.
Medicare hospice benefit. Medicare coverage of hospice for a person whose doctors certify a life expectancy of six months or less if the illness runs its usual course, and who chooses comfort care instead of curative treatment for that illness. It does not pay end-of-life doulas (see how doulas get paid). [11] [19]
Minimum necessary. HIPAA's standard that covered entities limit uses and disclosures of health information to what is needed for the purpose. A good habit for doulas too. [23]
Moral distress. The pain of believing you know the right thing to do but being unable to do it, or of taking part in something that feels wrong. See Module 12.
Mottling. Blotchy, darker or bluish skin, often on the legs, hands or feet, that can appear near death. Report it to the nurse; do not interpret it for the family. [1]
N
Non-clinical. Not involving diagnosis, treatment, medicines or hands-on medical or nursing care. Every part of a doula's work is non-clinical.
O
Out-of-hospital DNR. Clinician only An order that tells emergency medical personnel a person's wishes about attempts to restart heart or breathing outside a hospital. Knowing where it is kept matters; a doula does not write it. [3]
Oxygen safety (home oxygen). Oxygen makes fires burn faster. Fire-safety guidance says never smoke where oxygen is used, keep cylinders away from heat, flames and electric devices, and post no-open-flame signs. No candles; the hospice's instructions come first. [24]
P
Palliative care. Specialized medical care for people living with a serious illness, focused on relief from symptoms and stress. It is based on need, not prognosis, and can be given alongside curative treatment. [25] [19]
Palliative sedation. Clinician only A clinical treatment in which the medical team uses medicine to lower consciousness when symptoms cannot otherwise be relieved. Decided and managed only by clinicians.
Personal representative. Under HIPAA, a person authorized by state or other law to act for someone in health care decisions, who can exercise that person's privacy rights; after a death, an executor can be one. [15]
POLST (also MOLST, POST). Clinician only A portable medical order form that turns a seriously ill person's wishes into orders medical teams can act on in an emergency. It is completed with a health care professional, and names and availability vary by state. [26] [3]
Prognosis. Clinician only A clinician's estimate of how an illness is likely to go, including how long a person may live. Never estimate one for a family.
Pronouncement of death. Clinician only The formal determination that a person has died. State law decides who may pronounce: for example, Virginia allows certain nurses working for a hospice or home care organization to pronounce an anticipated death under set conditions. Never a doula. [27]
Protected health information (PHI). Under HIPAA, identifiable health information that a covered entity or business associate holds or sends. [8]
PRN (as needed). Clinician only A medicine order to be given when needed rather than on a schedule. The nurse or physician decides when; a doula never advises on it.
R
Referral. Pointing a person to a service or professional. A doula may refer freely to public resources, but must never pay or accept anything for referring someone in federal health programs. [5]
Respite care. Short-term care that gives a family caregiver a break. Under Medicare hospice, inpatient respite is a short stay in an approved facility. [13]
Routine home care. The most common hospice level of care: a day the patient is at home and not receiving continuous care. [13]
S
SBAR and SBAR-lite. SBAR (Situation, Background, Assessment, Recommendation) is a structure for communication between members of a health care team. This program teaches a doula's SBAR-lite, which replaces the Assessment with what the family says. See Module 14. [28]
Scope (of practice or role). What a role may and may not do. For nurses and doctors it is set by state law; for doulas it is defined by training, agreements and any organization you work for. Every module here has a scope box.
Serious illness conversation. A clinician-led conversation about a seriously ill person's goals, values and priorities, often using a guide such as Ariadne Labs' Serious Illness Conversation Guide, which is written for clinicians. [29]
Standard precautions. Infection-prevention practices used in all patient care, including hand hygiene, protective equipment when exposure is expected, and cough and sneeze etiquette. [30]
Symptom management. Clinician only Assessing and treating symptoms such as pain, breathlessness or agitation. Clinical work: a doula reports what they see and what the person says.
T
Terminally ill. In the Medicare hospice rules, having a medical prognosis of a life expectancy of six months or less if the illness runs its normal course. [19]
Terminal restlessness. Clinician only Agitation or restlessness in the last days of life, such as calling out or pulling at bedding. Only the clinical team assesses its cause and treats it; a doula helps the family call.
Transfer (moving a person). Not a doula task Lifting or moving a person between bed, chair or floor. OSHA notes that lifting and moving clients carries a high risk of back injury. Call the hospice or the family's plan instead. [31]
V
Vigil. The time of keeping company with a person who is dying, often in their last hours or days, planned with them and their family. See Module 6.
Volunteer (hospice). Medicare hospices must train volunteers, use them in defined roles under a designated employee's supervision, and have volunteers provide at least 5 percent of patient care hours. Volunteering is one route to supervised practice. [32]
Voluntarily stopping eating and drinking (VSED). A decision by a person with decision-making capacity to stop eating and drinking in order to hasten death. It involves the clinical team for comfort care; a doula supports the person's own decision within the law, does not advise on it, and hands questions to the clinician.
W
Workforce (HIPAA). Employees, volunteers, trainees and others whose work for a covered entity or business associate is under its direct control, paid or not. A hospice volunteer is part of the hospice's workforce. [33]