After reading this you can
- Summarise what the major trials of early palliative care found, including their limits.
- Explain why the serious illness conversation is the clinician's, and how a doula's earlier values work can prepare for it.
- Name the decision each kind of clinic leads (dialysis, heart devices, breathing support, dementia planning) and the doula's part beside it.
- Explain what Principal Illness Navigation is, who may provide it, and why it does not make a doula billable.
Documented means we opened a source that describes it; the source is listed at the bottom with the date we checked it. Proposed means a way it could work that we could not find in practice, with the reason it might not.
Scope check for clinics
A doula may
- Help the person and family prepare questions in their own words before a visit.
- Keep a shared notebook the family owns: questions, answers they were given, what matters to the person.
- Hold the person's stated values in view between visits, and remind them they can bring those values to the clinician.
- Go to an appointment if the person wishes and the clinic allows, sit quietly, and take notes if asked.
- Support the family emotionally and practically after hard news.
Hand to the care team
- Treatment choices, prognosis, test results and side effects.
- Starting or stopping dialysis, turning off a heart device, breathing machines, feeding tubes.
- The serious illness conversation and advance care planning visits, which clinicians lead and bill for their own time.
- Capacity questions: whether a person can still make a given decision.
- Any new or worsening symptom, and any mention of wanting to die sooner or of self-harm (in the US, 988 as well).
Three rails in a clinic, and which one you are on
| Rail | What it looks like | Status |
|---|---|---|
| 1. The family engages you privately | You work for the person and family in their home and by phone, and may come to a visit as their guest if the clinic agrees. You are not part of the clinic. | Documented The common arrangement today. |
| 2. An organization engages you | A hospice, palliative program or community group engages you as staff, contractor or volunteer, and may work alongside a clinic. | Documented in some community programs (see below); we found no cancer center that describes its own end-of-life doula program. |
| 3. A model that does not exist yet | A clinic keeps a vetted community partner list of doulas or runs a doula volunteer program. | Proposed See the section on how a clinic might do it. |
Medicare and Medicaid do not pay for end-of-life doula services, and there is no billing code for them. Medicaid doula benefits in the states that have them are for birth doulas, a different service. See getting paid.
Clinic realities
- Time is short. A specialist visit may be brief and packed with test results and treatment decisions. Preparation before the visit is where a doula adds the most.
- Consent comes first. You attend only if the person wants you there, and the clinic can say no. Ask the front desk ahead of time.
- Privacy. Under the federal Privacy Rule, clinicians may share information with people involved in a patient's care when the patient agrees or does not object. It does not oblige them to talk to you. Expect them to speak to the patient.
- The clinic sets who attends. Rooms are small; some visits (exams, procedures, infusion areas) limit visitors. Follow the clinic's rule without debate.
- Telehealth. If the person wants you on a video visit, they should tell the clinician at the start who else is present.
Early palliative care alongside treatment: what the evidence says
Palliative care is specialist care for symptoms and the stress of serious illness, given alongside treatment. It is not hospice (see palliative care or hospice?). In cancer, the case for starting it early rests on a small number of trials.
| Source | What it found | Limits to keep in mind |
|---|---|---|
| Temel et al., NEJM 2010 | 151 people newly diagnosed with metastatic non-small-cell lung cancer. Early palliative care with oncology care improved quality of life at 12 weeks and fewer people had depressive symptoms (16% vs 38%). Fewer received aggressive end-of-life care (33% vs 54%), and median survival was longer (11.6 vs 8.9 months). | One hospital, one cancer type. Survival was not the trial's primary question, and later reviews found the survival effect uncertain. |
| Temel et al., J Clin Oncol 2017 | 350 people with incurable lung or gastrointestinal cancer. Quality of life improved at 24 weeks but not at 12; effects differed by cancer type. People in the palliative care group were more likely to have discussed their wishes with their oncologist if they were dying (30.2% vs 14.5%). | Benefit was clearer for lung cancer than for GI cancers. |
| Haun et al., Cochrane review 2017 | 7 trials, 1,614 people. Early palliative care improved quality of life and symptoms by a small amount. | Evidence certainty low to very low; effects on survival and depression uncertain. |
| ASCO guideline 2017, updated 2024 | Recommends that people with advanced cancer receive dedicated palliative care early, alongside active treatment, from interdisciplinary teams, and that caregivers may be referred too. | A guideline for clinicians; it does not mention doulas. |
None of these studies tested doulas. They tested clinical palliative care teams. A doula should never cite them as evidence that doulas improve outcomes. What they do support is that asking about palliative care early is reasonable, and that is a question a doula can help a family write down.
The serious illness conversation belongs to the clinician
The Serious Illness Conversation Guide, from Ariadne Labs, gives clinicians (physicians, nurses, social workers, chaplains and others) structured language, in phases (set up, assess, share, explore, close), to learn a seriously ill person's goals, values and priorities for their care. It is part of a wider Serious Illness Care Program of tools, training and system changes. In a cluster randomized trial in outpatient oncology (Bernacki et al., JAMA Internal Medicine 2019), the program did not change its two main measures (goal-concordant care and peacefulness), which the authors said were limited by measurement and sample size; it did reduce moderate to severe anxiety and depression symptoms.
A doula does not run this conversation, use the guide as a script, or bill for it. The advance care planning codes 99497 and 99498 are for a physician's or other qualified practitioner's own face-to-face time; that time cannot be delegated to a doula. What a doula can do is the earlier values work: unhurried time in which the person names what matters, in their own words, so they arrive at the clinician's conversation ready (see values and planning conversations).
| The clinician's conversation | The doula's preparation beside it |
|---|---|
| Shares prognosis and medical options. | Helps the person decide what they want to know and write the question. |
| Explores goals, fears and trade-offs, and makes a recommendation. | Gives the person time at home to think about what matters, without any recommendation. |
| Documents in the medical record; may lead to orders such as a POLST form. | Helps the family keep their own notes; the person decides what to share. |
| Bills for the clinician's own time, when the rules are met. | Is paid, if at all, by whoever engaged the doula, never through the clinician's claim. |
Example of what a doula might say: "When you see Dr. [name] on Thursday, would you like to bring the list we made of what matters most to you? You could ask, 'How does this treatment fit with that?'"
Clinic by clinic: the decision, and the doula's part
| Clinic | A decision the clinical team leads | Where a doula can help |
|---|---|---|
| Oncology | Whether to start, continue or stop a treatment; when to involve palliative care or hospice. | Question lists; a shared notebook; support after scan results. |
| Kidney and dialysis | Dialysis, conservative kidney management, or stopping dialysis. | Help the person say what a good day looks like; support the family through a decision to stop. |
| Heart failure | Whether to turn off the shock function of an implanted defibrillator (ICD). | Help the person ask what the device will do near the end of life. |
| Lung disease | Oxygen, hospital care during flare-ups, breathing machines. | Help the person say in advance what they would and would not want. |
| ALS | Breathing support, including a tracheostomy and ventilator, and feeding tubes. | Time and space to think before a crisis; help with communication as speech changes. |
| Parkinson's and other neurological illness | Treatment changes, swallowing and feeding, place of care. | Keep the person's own words on record for later. |
| Dementia | Advance planning while the person can still take part; later, feeding, hospital transfer and comfort-focused care. | Help the person record wishes and choose a proxy early; support the proxy later. |
Dialysis: conservative management and stopping
The National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) describes conservative management as the care team continuing care without dialysis or a transplant, focused on symptoms and quality of life, and says that people who need dialysis to survive and do not receive it "may live a few days or weeks"; people who stop dialysis are switched to comfort care or hospice. Medicare-certified dialysis facilities must have an interdisciplinary team that includes a nurse, a physician, a social worker and a dietitian (42 CFR 494.80). The social worker is the natural person for the family to ask about support.
Heart failure: device deactivation
The Heart Rhythm Society published an expert consensus statement, endorsed by cardiology, geriatrics and hospice and palliative care organizations, on managing implanted heart devices in people nearing the end of life or asking to withdraw the therapy. These are conversations for the cardiology and palliative teams. A doula can help the person bring the question; a doula never gives an opinion on what to do with the device.
ALS: breathing decisions
American Academy of Neurology guidance treats noninvasive ventilation as an important treatment in ALS. The ALS Association suggests people consider two ALS-specific choices when writing an advance directive: a feeding tube, and invasive ventilation with a tracheostomy. Making those choices before a crisis, with the neurology team, is the point. The doula's part is time, listening and help putting the person's own words on paper.
Dementia: planning while capacity remains
The National Institute on Aging's Alzheimers.gov advises planning as early as possible after a diagnosis, while the person can still make and communicate decisions: advance directives, a health care proxy, and, where relevant, medical orders such as POLST. Whether a person can still make a given decision is a clinical judgement, not a doula's. See advance directives.
Between visits: the doula's real work
- Preparing questions. Before each visit, a short list in the person's words. Afterwards, what was answered and what is still open.
- A shared notebook. On paper or on a device the family controls. It belongs to the family, not the doula. Keep nothing the family did not ask you to keep.
- Holding values in view. Reminding the person what they said matters, so they can test each choice against it. Not steering the choice.
- Going to appointments. Only if the person wishes and the clinic allows. Sit where the person wants you; speak only if asked; take notes if they asked you to.
- After hard news. Staying with the family, practical help, and calling the clinic's nurse line with the family if a symptom worries them.
A 2025 article in the Journal of Palliative Medicine by doula-program leaders and palliative care researchers argues that doulas can bridge the long gaps between clinical visits. That is expert opinion, not a trial. A 2026 survey of 39 gynecologic oncologists in New England found that 39% had heard of an end-of-life doula and none had worked with one. Expect clinicians not to know what you do, and explain it briefly.
How a clinic might bring in a doula
Proposed We did not find a cancer center or specialty clinic that publicly describes its own end-of-life doula program. These are ways it could work, each with a reason it might not.
| Approach | How it could work | Why it might not |
|---|---|---|
| Social work resource list | The clinic's social worker keeps a neutral list of local doulas and training bodies, alongside other community resources. | Hard to vet quality; the list must stay neutral, with more than one option. |
| Community partner agreement | A written agreement with a local doula group or hospice volunteer program sets scope, privacy and how referrals are made. | Needs compliance review; the partner must receive nothing of value for referrals. |
| Clinic volunteer program | Trained volunteers offer companionship to patients who ask, supervised by the clinic. | Volunteer recruitment and supervision take staff time that clinics rarely have. |
Safeguards any approach needs
- No per-referral payment, in either direction. The HHS Office of Inspector General describes the Anti-Kickback Statute as a criminal law against paying "remuneration" (anything of value) to induce or reward referrals of federally payable business.
- No clinician may bill for a doula's work. A doula's time is not a clinician's service. The advance care planning codes 99497 and 99498 remain the billing clinician's own time and cannot be delegated.
- A written, non-clinical scope, a privacy agreement, and a named clinic contact for concerns.
- The patient chooses. A referral list is information, not a requirement.
Principal Illness Navigation: what the codes are, and why they are not a doula route
Since 2024 Medicare has paid for Principal Illness Navigation (PIN): help for a patient with a serious, high-risk condition to navigate their care. CMS finalized it in the 2024 Physician Fee Schedule rule and clarified who may provide it in the 2025 and 2026 rules. We checked the rule text on 2026-09-29.
| What CMS says | What it means here |
|---|---|
| G0023 and G0024: navigation "by certified or trained auxiliary personnel under the direction of a physician or other practitioner, including a patient navigator or certified peer specialist" (60 minutes, then each additional 30 minutes, in a calendar month). G0140 and G0146 are the peer-support versions. | The codes describe work done by someone else under a billing practitioner. The practitioner bills; the navigator does not. |
| For a serious, high-risk condition expected to last at least 3 months that puts the patient at significant risk of hospitalization, nursing home placement, acute decompensation, functional decline, or death. | Many doula clients would have such a condition. That alone makes nothing billable. |
| Requires an initiating visit by the billing practitioner, patient consent (verbal or written, documented, renewed each year), and time documented in the medical record. Furnished under general supervision, incident to the practitioner's services. | This is clinical-practice infrastructure: an employer or contract, supervision, and record-keeping under the practice. |
| Auxiliary personnel must act under the practitioner's supervision, must not be excluded from federal programs, and must meet any state requirements, including licensure (42 CFR 410.26). Where a state sets no requirements, CMS requires training in patient and family communication, relationship-building, capacity building, service coordination and systems navigation, advocacy, facilitation, assessment, professionalism and ethics, and the specific illness. Peer-support training must be consistent with SAMHSA's National Model Standards for Peer Support Certification. | These are requirements for a navigator or peer support role, not a description of end-of-life doula training. |
| The 2026 rule says the codes do not limit which types of auxiliary personnel may perform them, so long as they meet the requirements to provide all elements of the service, and that the billing practitioner must ensure all payment rules and state requirements are met. | Whether any particular person qualifies is the billing practice's compliance responsibility. |
The plain answer
A death doula is not covered or billable under the PIN codes. Being a doula does not make someone "certified or trained auxiliary personnel" for PIN. Whether a person who happens to be a doula could ever work as a PIN or peer-support provider under a billing practitioner is a compliance question for that practice and its counsel. This page does not say they could. If they did, it would be a different job: navigation under a clinician's supervision and record, not independent doula work for a family. We also searched the CY 2027 proposed rule (July 2026) and found no proposed change to who may provide PIN.
Documented examples, and what we did not find
Documented Doulas at rural health clinics and a navigation center. OHSU News reported in March 2023 that, through two grant-funded projects of The Peaceful Presence Project (an independent organization founded by an OHSU School of Nursing graduate), doulas and public health interns were trained to hold advance care planning "pop-ups" at a navigation center for people experiencing homelessness and in rural health clinics. It is a community organization working in clinic settings, not a clinic's own program, and the report does not describe outcomes.
Reported, not verified: the 2025 Journal of Palliative Medicine article above says some community palliative care programs bring in doulas at diagnosis or at admission to palliative care. It does not name them, and we could not confirm which do.
Not found: a cancer center, dialysis organization, heart failure clinic, ALS clinic or memory clinic that publicly describes employing or contracting end-of-life doulas. That does not prove none exist. For hospice-run doula programs, see hospice; for hospital volunteer programs, see hospitals and palliative care.
Questions to ask
A person or family, of the clinic (a doula can help write these down)
- Is this treatment meant to cure, to control, or to help me feel better?
- Could a palliative care team see me now, alongside this treatment?
- If this does not work, what would the next choices be?
- What decisions should I think about now, before a crisis? (breathing support, dialysis, my heart device, who speaks for me)
- May I bring a support person to visits, and may they take notes?
A doula, of the clinic
- What is your policy on a support person attending, in person or by video?
- Who is the social worker or nurse navigator the family should call?
- How would you like me to pass on a concern: through the family, or the nurse line with them?
A clinic, of itself
- Would a neutral community resource list that includes doulas help our patients, and who would keep it current?
- Has compliance confirmed that no referral path involves anything of value?
See also the playbook for a health system, the doula readiness checklist, and the training module working with the care team.