Primary care and the community: the work between the visits

Three rails, kept apart

Every example below says which of three rails it is on. Mixing them up is how people get hurt or get into legal trouble.

What the primary-care clinician does at the end of life

A primary-care clinician is the doctor, nurse practitioner or physician assistant who knows the person over years. Near the end of life they manage symptoms and medicines, refer to palliative care or hospice, and sign the forms only a clinician can sign.

They also hold advance care planning (ACP) conversations: discussing and preparing for future medical decisions, as the National Institute on Aging puts it. CMS lets a physician or qualifying practitioner bill ACP with CPT 99497 and 99498, for the billing clinician's own face-to-face time, and not at all for 15 minutes or less. That time cannot be done by a doula and billed by someone else; the getting-paid page explains why.

Rules differ by state. Colorado's health department notes that if you cannot speak for yourself, no one, not even a spouse, can automatically make medical decisions for you, so it urges every adult to name a decision-maker in writing. Other states differ. A doula points to the state's own forms and the advance directives page, not to their own reading of the law.

Between the visits: how a family-engaged doula helps

A visit is short, and families often arrive tired with the questions still in their heads. The doula's most useful work happens before and after, on the family's side.

Consent comes first. The person (or, if they cannot decide, their legal decision-maker) decides what the doula sees and what is shared. A doula does not request records for the person or keep copies of medical documents without a clear request and safe storage. See Privacy, records and safety.

Examples of what a doula might say

• "Before Thursday, would it help to write down what you most want your nurse practitioner to know? I can hold the pen."
• "You mentioned the new pain in your side. That is one for the nurse line today, not for Thursday. Shall we call together?"
• "Do you want me in the room, or waiting outside? Either is fine."

Examples, not scripts: none judges a symptom, and each hands the clinical question back to the team.

Community health workers: the closest cousin, not a twin

New Jersey's palliative care guidance defines a community health worker as a professional who supports people through outreach, education, care navigation and links to services, helping build trust and spot barriers such as transportation or housing. NASHP notes the term covers promotores de salud, outreach workers and patient navigators.

CHWs show that a non-clinical, trusted messenger can have a formal place in the system. That place was built through state law, training standards and Medicaid rules:

• Documented NASHP reported in October 2025 that 20 states have Medicaid state plan amendments authorizing payment for CHW services, and 15 have used Section 1115 waivers to support CHW services.
• Documented In Colorado, a 2023 law (SB23-002) authorized Medicaid payment for CHW services. The state health department runs a voluntary CHW registry. Colorado's Medicaid agency has since delayed the benefit: originally July 1, 2025, then January 1, 2026, and now January 1, 2028, assuming the legislature restores funding in 2027.
• Documented Medicare's Community Health Integration and Principal Illness Navigation services (described below) can be delivered by CHWs and other trained auxiliary staff working under a billing practitioner's supervision.

A CHW is not a doula. A doula cannot bill as a CHW, call themselves one, or borrow CHW rules. Someone who is both is doing CHW work under CHW rules when in that job.

Medicaid community-based palliative care: what the programs actually say

Community-based palliative care is palliative care (comfort and quality of life, alongside any treatment) delivered outside the hospital. A few state Medicaid programs now pay for it. We opened each program's own documents to see who delivers it.

New Jersey Documented

• NJ FamilyCare's benefit began April 1, 2026, after a 2023 law. A terminal diagnosis is not required, and members do not give up curative treatment.
• Members qualify with a serious illness plus reduced quality of life, such as functional decline, two or more emergency visits in six months, or a hospital stay in the past year.
• The required team is a physician or nurse practitioner, a registered nurse, a licensed mental health professional (LCSW, LPC or LMFT) and a chaplain, with a child life specialist for children.
• Optional roles include pharmacists, aides, licensed practical nurses and community health workers, who must complete a named state training and have community-clinic or Medicaid experience.
• Payment is a monthly bundle to the provider organization, covering services such as advance care planning discussions by the licensed team.
• The word "doula" appears once in the 71-page guidance: "community doula services" in a general list of NJ FamilyCare benefits. That is the state's pregnancy-related doula benefit. End-of-life doulas are not part of the palliative care team.

California Documented

• Under a 2014 law (SB 1004), Medi-Cal managed care plans must provide palliative care. The current rule, All Plan Letter 18-020, covers members with certain advanced conditions who are not dually eligible for Medicare.
• The state recommends a team of a physician, registered nurse, licensed vocational nurse or nurse practitioner, and social worker, and recommends access to chaplain services, while noting chaplain services are not reimbursable through Medi-Cal.
• Since January 2024, California also requires Medicare Dual Eligible Special Needs Plans to have palliative care programs. No doula role appears in either.

Other states

NASHP reports CMS approved Hawaii's community palliative care state plan amendment in 2024, the first in the country, and that Ohio, Maine, Texas and Washington have taken steps. We did not open Hawaii's team rules, so we make no claim about who delivers care there.

For doulas: these benefits pay a clinical team. A doula works beside that team (rail 1), in an organization's defined role (rail 2), or helps design a role that does not exist yet (rail 3).

Birth doulas in Medicaid are a different thing

You will read that "Medicaid covers doulas." That is true only for birth doulas. NASHP counted 26 states and DC paying doulas through Medicaid as of March 2026, for support during pregnancy, delivery and after childbirth. Its brief does not mention end-of-life doulas, and none of those benefits cover them.

The two roles share a word, not a benefit, training standard or billing path. If a family hears that "doulas are covered now," correct it gently and point to what is actually true.

Colorado: what is documented, and what is not

• Documented The Colorado End-of-Life Collaborative, a 501(c)(6) nonprofit led by a volunteer board, keeps an end-of-life doula directory and focuses on non-medical care. It is not a state agency and licenses no one.
• Documented NASHP lists Colorado among six states in its 2023 to 2025 State Policy Institute on serious illness care. Its August 2025 brief does not describe Colorado adopting a community-based palliative care benefit, and we found no Colorado Medicaid page announcing one.
• Documented Colorado's CHW Medicaid benefit is delayed to January 1, 2028 (see above).
• Not found: any Colorado law, rule or state program that defines, registers or pays end-of-life doulas. Treat any claim otherwise as unverified until you see the state's own page.

Community models nobody bills

Much end-of-life support is never billed. For a doula these are places to learn, serve and be known, not to sell.

• Documented Death cafés. Strangers gather to eat cake, drink tea and discuss death, on a not-for-profit basis with no intention of leading anyone to a product or course of action. The organization reports more than 24,000 in 100 countries since 2011. Come as a participant.
• Documented Compassionate communities. A public-health approach in which caring through illness, dying and grief is everyone's job. A 2020 systematic review rated the evidence on building and measuring them low to very low quality.
• Documented Vigil companion programs. The Catholic Health Association (July 2025) describes No One Dies Alone volunteers at Providence Cedars-Sinai Tarzana Medical Center and a Comfort Companion program at Trinity Health Oakland and Livonia in Michigan. Volunteers sit with patients who would otherwise be alone; they give no medical care.
• Documented Faith-community projects run by hospices. Angela Hospice in Livonia, Michigan runs a Faith Community Empowerment Project that trains congregation members in five sessions covering hospice, advance directives, grief and empathic listening. Hospice of Santa Cruz County runs End of Life Faith Outreach for clergy and congregations.

Medicare Advantage extra benefits: what CMS permits

Medicare Advantage plans may offer supplemental benefits beyond original Medicare:

• Documented A 2018 CMS memo widened what counts as "primarily health related." It lists benefits such as home-based palliative care, in-home support services and support for caregivers. In-home support must be provided by people licensed by the state to provide personal care, or otherwise consistent with state rules. The benefit must be recommended by a licensed medical professional as part of a care plan.
• Documented Special benefits for the chronically ill must have a reasonable expectation of improving or maintaining the enrollee's health or function (42 CFR 422.102). Plans must keep a bibliography of evidence. The rule lists funeral planning and expenses among benefits that may not be offered.
• Documented KFF reports that in 2026 most Medicare Advantage plans do not offer these chronic-illness benefits; 12% of individual plans offer at least one.

We found no plan document naming end-of-life doula services as a benefit, so this page does not say any plan pays for doulas.

Medicare's navigation and planning codes, described accurately

If a practice suggests a doula "do the planning conversation and we will bill it," or pays per patient referred, refuse.

How a primary-care practice or health center might add a doula role Proposed

We found no primary-care practice or health center that publicly describes an end-of-life doula role. This is a proposal, not a report.

• Volunteer role. A practice tells patients about a local hospice or community group whose trained volunteers offer companionship. The partner supervises.
• Employed role. A health center hires a doula-trained staff member with a written job description: presence, preparation for visits, legacy work, community linkage. Pay is a wage for the job, not tied to referrals or billed codes.
• Resource list. The practice lists local doulas and community programs, with no payment either way.

Safeguards any version needs

• A written scope that says what the doula does not do (clinical questions, medication, forms, billing).
• A named clinician or social worker the doula reports concerns to.
• Consent and privacy rules; no payment linked to referrals or billed services; legal review before launch.
• An honest evaluation plan. A 2022 scoping review found little evidence yet about doulas' impact.

Why it might not work: no payer covers the role, so it depends on grants or the practice's budget, and a busy clinic may not have time to supervise it.

Finding the community's referral pathway, without buying it

Families find help through people they already trust. Know these doors:

• Area Agencies on Aging. Local agencies for older adults and caregivers. Find yours through the federal Eldercare Locator (1-800-677-1116).
• Hospice and palliative care social workers, who know which families want more support.
• Senior centers, libraries and faith communities: offer a talk if invited; show up as a neighbor.
• Community groups such as your state's end-of-life doula network or a local death café.