Death Doula, Hospice Nurse, Chaplain, or Social Worker: Who Does What?

When someone is dying, a surprising number of people may be involved: a nurse, a doctor, a social worker, a chaplain, an aide, volunteers, and maybe a death doula you’ve hired. It’s easy to wonder whom to call about what. This guide explains the roles, using federal rules for Medicare-certified hospices as a baseline. Every hospice organizes its team a little differently, so ask yours who your contacts are.

What does federal law require of a hospice team?

Medicare’s hospice rules (42 CFR § 418.56) require a hospice to designate an interdisciplinary group that works together to meet the physical, medical, psychosocial, emotional, and spiritual needs of the patient and family facing terminal illness and bereavement. The group must include:

• A doctor of medicine or osteopathy (an employee of the hospice or under contract)
• A registered nurse
• A social worker (the current rule also allows a marriage and family therapist or a mental health counselor)
• A pastoral or other counselor

With the patient’s attending physician, the group prepares a written, individualized plan of care. The hospice must designate a registered nurse to coordinate the plan, assess the patient’s and family’s needs on an ongoing basis, and make sure the plan is carried out.

The rules also set out core services (§ 418.64) that the hospice must routinely provide directly by its own employees: nursing services, medical social services, and counseling. Counseling includes bereavement counseling, and the rules require bereavement services to be available to the family and other individuals in the bereavement plan of care for up to one year after the patient’s death. Medicare hospice coverage also includes aide and volunteer services; for coverage details, see Medicare and hospice coverage.

Who does what, and whom do I call?

The hospice physician. The hospice medical director and physicians, working with the patient’s own doctor, are responsible for palliation and management of the terminal illness and related conditions. Questions about the medical course, medications, and decisions about treatments go to the doctor or the nurse.

The hospice nurse. A registered nurse coordinates the care plan, and nursing care is provided by or under the supervision of a registered nurse. Pain, breathing, restlessness, changes in eating and drinking, and “is this normal?” questions usually go to the nurse first. Ask your hospice for the after-hours number and use it.

The social worker. Medical social services are provided by a qualified social worker under the direction of a physician. Social workers typically help with the practical and emotional side: coping, caregiver strain, family conflict, planning, funeral and financial questions, and community resources, and they support the family as well as the patient. A hospice social worker is a good first call when the stress isn’t about symptoms.

The chaplain or spiritual counselor. The rules call this role a “pastoral or other counselor,” and it isn’t limited to any one religion. A hospital chaplain interviewed by TIME described using life review, in which people reflect on the experiences, relationships, and legacy that shaped their lives, and gave students a simple rule: show up and stay quiet. Chaplains can help with questions of meaning, fear, regret, rituals, and prayer, whether or not you are religious, and can connect you with your own faith leader.

The hospice aide. Medicare’s hospice benefit includes intermittent home health aide and homemaker services, according to one health system’s summary of the benefit. An aide typically helps with personal care such as bathing, but not live-in care.

Hospice volunteers. The benefit also includes visits from trained volunteers, who may provide companionship or give family members a break.

The bereavement counselor. After the death, the hospice’s bereavement program supports the family for up to a year under federal rules, which is worth knowing if you’re wondering whether anyone will call you. See bereavement care.

Where does an end-of-life doula fit?

A doula isn’t part of the federally defined hospice team. NEDA describes end-of-life doulas as providing non-medical, holistic support. Compassion & Choices describes them as complements to medical, spiritual, and community-based supports. They’re usually hired privately, and some hospices have relationships with doulas, so ask. A doula can overlap with other roles, such as helping with legacy projects or keeping a vigil, and can offer time that scheduled visits don’t. See what an end-of-life doula does.

A quick guide to whom to call

Need	Usually start with
Pain, breathing, nausea, restlessness, medications	Hospice nurse (ask for the after-hours number)
Medical questions about prognosis or treatment decisions	Hospice physician or nurse
Caregiver exhaustion, family conflict, paperwork, funeral planning	Hospice social worker
Fear, regret, meaning, prayer, rituals	Chaplain or spiritual counselor (or your own faith leader)
Bathing and personal care	Hospice aide
Companionship, a break for the caregiver	Hospice volunteer (or a doula, if privately hired)
Legacy projects, vigil planning, extra non-medical presence	Doula (if you’ve hired one)
Grief support after the death	Hospice bereavement program

What if the roles overlap or disagree?

They overlap often, and that’s fine. Social workers, chaplains, and doulas can all help someone talk through what matters. If you get different advice from different people, bring it to the hospice nurse or the hospice team: the plan of care is meant to be coordinated by the interdisciplinary group. If you’ve hired a doula, give permission for the doula and the hospice to speak with each other.

What should I ask my hospice?

• Who is my main contact, and what’s the number for nights and weekends?
• Who are the members of our team, and how often will each visit?
• Does the hospice work with doulas, and what’s their policy?
• What volunteer services are available?
• What does the hospice’s bereavement program offer, and for how long?

See also what family does during hospice and what is hospice.

For the people who can help during a visit or at the end, see how to visit someone who is dying and being with someone at the moment of death.

This is general educational information, not medical or legal advice. Federal rules set minimum requirements for Medicare-certified hospices; staffing, schedules, and services vary by hospice and by state. Your hospice team can tell you who does what in your case.