Atlas›Domain XV · Nature, philosophy, social & rites of passage›Guide 116
Guide XV-116

Death doulas

Henry Fersko-Weiss2015
A 35 · L 49 · M 1621 interventions in the Trinity explorer
Client cardCompare
[source: …] where a claim comes from[uncertain] not confirmed in a primary source[synthesis] the writer's reconstruction

1. Introduction

Version followed: the doula model of Henry Fersko-Weiss (Caring for the Dying: The Doula Approach to a Meaningful Death, 2015) as the International End of Life Doula Association (INELDA) publishes it, together with INELDA's published approach, scope summary and Code of Ethics; End of Life Doula UK is used for UK practice. Where INELDA's current "process-based", non-staged description differs from the three-part account of the book, both are named.

An end-of-life doula (also called a death doula or death midwife) is a trained, non-medical companion to a dying person, their family and their "circle of care". INELDA describes the doula as a "nonmedical companion" offering personalised support built on presence, full-self listening, respect for the dying person's autonomy, and knowledge of the dying process [source: INELDA trainings page]. INELDA was founded in 2015 by Henry Fersko-Weiss, whose model is adapted from the work of birth doulas [source: Mendoza 2018, Psychology Today; National End-of-Life Doula Alliance book listing]. End of Life Doula UK is a national membership organisation and registered charity whose doulas offer emotional support, help make sure a person's wishes are heard, advance and legacy planning, companionship and help to families after a death [source: Information Now listing]. A systematic review describes the role as social rather than medical, a "companion, mentor and advocate", with services varying widely between doulas [source: Rawlings et al. 2018, as summarised on the Flinders palliative care blog].

This is not a psychotherapy. Its core idea of change, as the model states it, is that a dying person who reflects on the meaning of their life, expresses it in a legacy, and plans how the last days should go, and who is then accompanied through those days by someone holding that plan, has a more meaningful death; and that family members who process the dying time afterwards begin their grief on firmer ground [source: Mendoza 2018; National End-of-Life Doula Alliance book listing]. The psychotherapist's work around it is: delivering doula care only where trained (and then managing the dual role), integrating the model's meaning, legacy and planning work into therapy with a dying client, preparing a client or family to use a doula, collaborating with the doula and the hospice or medical team, and treating grief afterwards, including prolonged grief disorder, disrupted rites, children's grief and suicide bereavement [synthesis]. Related guides: Domain VI 128 (grief counselling), Domain II 127 (prolonged grief treatment), Domain XV 115 (hospice spiritual care) and XV 112 (mourning rites).

Evidence status in one line: the review literature finds wide variation in services and training and major gaps in research on doula outcomes [source: Rawlings et al. 2018 via Flinders blog].

2. Framework

The doula model's phases (book version) [source: Mendoza 2018; National End-of-Life Doula Alliance book listing]. The phases below follow Fersko-Weiss's account. INELDA's current wording calls its approach "reiterative" and process-based, not fixed stages, so phases can overlap and repeat as the person's condition changes [source: INELDA trainings page].

  1. Meaning and legacy. Goal: the dying person reviews their life, explores what it has meant, and expresses this in a legacy project (examples published: scrapbooks, collages, audio or video interviews) that the family keeps.
  2. Planning the final days (vigil plan). Goal: the person decides how the last days should unfold: who is present, music, where and in what kind of bed, and other details; the doula records the choices and acts on them. INELDA lists end-of-life planning and "scribing planning choices" among doula services.
  3. Vigil (holding space). Goal: the plan is carried out as the body declines. The book describes "around-the-clock vigil care" shared with family; INELDA lists sitting during imminent death, respite and non-medical comfort care. Doulas also explain signs of dying to the family and alert them to significant changes.
  4. After death: reprocessing and early grief. Goal: family and friends go back over the dying time with the doula and begin grieving; INELDA lists reprocessing sessions and basic grief education.

The psychotherapist's frame around it [synthesis]:

  • A. Referral and assessment: what the client wants, whether a doula fits, cultural and spiritual context, risk, and the therapist's own role (therapist only, or therapist who is also a doula).
  • B. Preparation and collaboration: consent for information sharing, a written note of who does what (therapist, doula, hospice or palliative team, chaplain or religious leader).
  • C. Accompaniment during dying: therapy continues in whatever form the client's condition allows; the doula and medical team lead on vigil and comfort care.
  • D. Bereavement: debriefing with family members who are the therapist's clients; grief assessment, including prolonged grief disorder once the time thresholds are reached.

Session count and format. The sources give no session counts or durations for doula work or for therapy around it. Format varies: home, hospice, hospital or care home, with the dying person, the family, or both [source: INELDA trainings page; Information Now listing]. In the UK the first call to End of Life Doula UK is free; some doulas work for free and others charge [source: Information Now listing]. Financial arrangements vary across doulas [source: Rawlings et al. via Flinders blog].

Criteria for moving between phases. The model gives no fixed criteria. Movement follows the dying person's (or proxy's) wishes and the course of the illness. Medical judgement about decline belongs to the medical team, not the doula or the therapist [source: INELDA trainings page; synthesis]. For the therapist: move from preparation to accompaniment when the medical team signals decline; move to bereavement work when the client is ready and asks [synthesis].

3. Guiding principles

  • Non-medical scope. Doulas do no medical assessment or intervention, respect medical providers' boundaries, do not give medication, and give food or drink only with the consent of the medical team or primary caregiver [source: INELDA trainings page]. Practical meaning: every clinical question goes to the hospice or medical team, whether the therapist or the doula hears it.
  • Autonomy of the dying. The dying person, or their proxy, guides their emotional, spiritual and cultural support [source: INELDA trainings page]. Practical meaning: the client's plan wins over the family's, the doula's or the therapist's preferences.
  • Self-awareness. Ongoing reflection on one's own beliefs, preferences and biases about death [source: INELDA trainings page]. Practical meaning: take your own losses and views on a "good death" to supervision.
  • Each dying process is unique. Services fit the person's dying process, not a template [source: INELDA trainings page]. Practical meaning: no standard script for legacy, vigil or rites.
  • Full-self listening and presence. The basis of all three INELDA principles [source: INELDA trainings page]. Practical meaning: being with matters more than doing to.
  • Consent for touch. Physical care and touch need explicit consent from the dying person, the circle of care and the medical team [source: INELDA trainings page]. Practical meaning: ask before and during any touch, honour a stop at once, and never sexual touch [synthesis].
  • One role at a time. INELDA encourages doulas who hold other licences to act solely as doulas unless consent is reached, to reduce confusion [source: INELDA trainings page]. Its Code asks doulas to avoid multiple relationships that risk exploitation or harm and, where unavoidable, to set clear, culturally sensitive boundaries [source: INELDA Code of Ethics]. The APA Ethics Code addresses multiple relationships in Standard 3.05 [source: APA Ethics Code]. Practical meaning: a therapist who is also a doula decides, with the client, which role applies, and documents it.
  • Competence within training. Doulas present themselves as competent only within their training and use only techniques they were trained or supervised in [source: INELDA Code of Ethics]. Practical meaning: therapists do not offer doula care without doula training, and doulas do not offer therapy.
  • Confidentiality with stated limits. Protect personal and health information; disclose without consent only to prevent serious, imminent harm; explain limits at the start; tell clients promptly of any breach [source: INELDA Code of Ethics]. Practical meaning: agree in writing what the therapist and doula may share with each other.
  • Cultural sensitivity. Respect the role of culture in dying and in the person's idea of a "good death"; ask directly or consult outside sources [source: INELDA Code of Ethics]. Practical meaning: use the Cultural Formulation Interview and ask about rites before assuming.
  • Impartial, non-judgemental companionship and no exploitation. No soliciting beyond the role; no use of the relationship for personal, religious, political or business interests; reasonable fees; no sexual relationships with clients or families, including for a period after the client's death; caution with social-media contact [source: INELDA Code of Ethics]. Practical meaning: no recruitment to beliefs, products or services.
  • Referral when objectivity slips. Refer to another impartial doula, seek supervision, or end involvement [source: INELDA Code of Ethics]. Practical meaning: a therapist's own grief response is a reason to consult.
  • No enforced industry standard. INELDA states there are "no currently enforced industry standards"; no state or national body certifies doulas in the US; training varies and many doulas lack supervision [source: INELDA trainings page; Mendoza 2018; Rawlings et al. via Flinders blog]. Practical meaning: check each doula's training, code and supervision before referring.
  • Equity and access. INELDA's standards aim to "increase access and equity in end-of-life care" [source: INELDA trainings page]. Practical meaning: raise cost, volunteer doulas and hospice-based doula programmes when a client cannot pay [synthesis].

4. Intervention inventory

The doula sources describe the doula's activities (meaning and legacy work, planning, vigil, reprocessing, education, respite, comfort care). They do not describe psychotherapist procedures. The therapist-side procedures below (assessment, preparation, collaboration, debriefing, grief work) are marked [synthesis] unless a source is given. Where an item adapts a doula activity for therapy, the doula activity is attributed and the therapeutic adaptation is marked [synthesis].

4.1 Explaining what a doula is and is not

  • Purpose and when to use: a dying client or a family member asks about doulas, or a doula is already involved and roles are unclear. Doulas offer non-medical companionship, planning, legacy and vigil support, respite and grief education; they do not give medical assessment, medication or treatment [source: INELDA trainings page; Mendoza 2018].
  • Steps: (1) Ask what the client has heard and hopes for. (2) Describe the role in plain terms: companion, planner, vigil sitter, support to family, not a nurse or counsellor. (3) Say there is no enforced industry standard and training varies, so it is worth asking any doula about training, code of ethics and supervision [source: INELDA trainings page; Rawlings et al. via Flinders blog]. (4) Explain how the doula, the hospice or palliative team, any chaplain and the therapist differ. (5) Leave the decision with the client.
  • Example language (illustrative): "A doula is a trained companion for the dying and their family. They can help you plan how you want your last days to be and sit with you and your family. Medical questions still go to your nurses and doctors, and what we do here stays our work together."
  • Watch for: the client expecting the doula to replace hospice care, or the family hiring a doula the dying person does not want. It is working when the client can say in their own words what each helper does.

4.2 Evaluating a doula or doula service before a referral

  • Purpose and when to use: before suggesting a doula, or when a client asks whether a doula they found is suitable.
  • Steps: (1) Check training and the training body (in the UK, End of Life Doula UK doulas complete the Living Well Dying Well programme [source: Information Now listing]; in the US, INELDA and the National End-of-Life Doula Alliance publish certification, a scope of practice and a code of ethics [source: INELDA trainings page; National End-of-Life Doula Alliance website]). (2) Ask whether the doula follows a published code and scope. (3) Ask about supervision and support, as many doulas lack it [source: Rawlings et al. via Flinders blog]. (4) Clarify fees in writing; some doulas volunteer, others charge [source: Information Now listing]. (5) Ask how they work with the hospice team and how they respond to medical questions. (6) Ask about insurance and liability cover in general terms; the doula's training body can say what it expects [synthesis; uncertain: not verified]. (7) Give the client the questions, not a verdict.
  • Example language (illustrative): "Here are some questions you could ask: where they trained, which code of ethics they follow, who supports them, what they charge and how they work with your hospice nurses."
  • Watch for: promises of medical or spiritual outcomes, pressure to sign up or pay up front, recruitment into a belief system, criticism of the medical team. These cut against INELDA's non-medical scope and its Code's ban on exploitation [source: INELDA trainings page; INELDA Code of Ethics]. It is working when the client chooses with clear expectations.

4.3 Deciding on and managing a dual role (therapist who is also a doula)

  • Purpose and when to use: a therapist trained as a doula is asked to serve as doula for a current or former therapy client or their family, or a doula client asks for therapy.
  • Steps: (1) Name the two roles and how they differ. (2) Default to one role: INELDA encourages licensed doulas to act solely as doulas unless consent is reached [source: INELDA trainings page]. (3) Weigh risk of exploitation, impaired objectivity and harm, per the INELDA Code and APA Ethics Code Standard 3.05 [source: INELDA Code of Ethics; APA Ethics Code]. (4) If a dual role is unavoidable (for example, a rural area with no other doula), agree in writing which role applies, what is recorded where, fees for each, and confidentiality between roles [synthesis]. (5) Consult a colleague or supervisor before starting and at endings [synthesis]. (6) Offer referral to another doula or therapist [source: INELDA Code of Ethics].
  • Example language (illustrative): "I can be your therapist, or I can be your family's doula, but doing both could blur things for you. Let's look at what you most need and who else could take the other role."
  • Watch for: family members treating doula visits as therapy, or disclosure in one role used in the other. It is working when everyone can say which role is active at a given time.

4.4 Consent, confidentiality and information-sharing agreement

  • Purpose and when to use: at the start of any work where a doula and therapist both serve the same client or family.
  • Steps: (1) Explain your confidentiality and its limits; doulas have their own (disclosure without consent only to prevent serious, imminent harm) [source: INELDA Code of Ethics]. (2) Ask the client what, if anything, they want shared with the doula and the medical team. (3) Record written consent for each recipient. (4) Agree how to handle risk information (for example, a suicide concern heard by the doula) [synthesis]. (5) Review consent if capacity changes; follow local law on proxies and capacity [synthesis].
  • Example language (illustrative): "Your doula and I can talk to each other only if you want that. What would you like us to share, and what should stay just with me?"
  • Watch for: relatives asking the therapist for content; diminishing capacity. It is working when the client knows who knows what.

4.5 Meaning exploration and life review

  • Purpose and when to use: a dying client wants to make sense of their life. In the doula model this is the first area of work: the person reviews their life and explores its meaning [source: Mendoza 2018; National End-of-Life Doula Alliance book listing]. The therapist may do this within therapy, or support it when the doula leads it [synthesis].
  • Steps: (1) Ask permission to look back over the client's life. (2) Use open questions on key people, turning points, what they are proud of, what they regret, what they want understood. (3) Follow the client's pace; stop on fatigue. (4) Reflect themes back, in the client's words. (5) Note threads that could become a legacy project (4.6) or a vigil wish (4.8). (6) Check whether religious or spiritual meaning matters and who the client wants to speak with (4.10) [synthesis].
  • Example language (illustrative): "When you look back, what stands out? What would you want the people you love to understand about your life?"
  • Watch for: guilt or regret that turns into rumination, unresolved trauma, demoralisation or hopelessness (screen for suicide risk, 4.15). It is working when the client describes their life with more coherence or peace, by their own account.

4.6 Legacy project support

  • Purpose and when to use: the client wants to leave something behind. The doula model's "living legacy" project expresses the meaning found; published examples are scrapbooks, collages and audio or video interviews, which the family keeps [source: Mendoza 2018].
  • Steps: (1) Ask what the client wants to leave and for whom. (2) Choose a form the client's energy allows (a recording, letters, a photo album, a recipe book) [synthesis]. (3) Break it into short pieces; a doula or family member may do the practical work. (4) Agree who keeps it and when it will be given. (5) Consider children's needs and age when legacy items are for them (4.14) [synthesis].
  • Example language (illustrative): "If you could leave one thing for your grandchildren, what would it be? We could record you telling the story, a little at a time."
  • Watch for: pressure to finish, perfectionism, family conflict over content, legacy work used to avoid hard conversations. It is working when the client finds the work meaningful, not a duty.

4.7 End-of-life planning conversations and recording choices

  • Purpose and when to use: the client wants to set out wishes. INELDA lists end-of-life planning and scribing planning choices; End of Life Doula UK lists advance and legacy planning and helping make sure wishes are heard [source: INELDA trainings page; Information Now listing].
  • Steps: (1) Explore values first: what matters most at the end. (2) Separate emotional and practical wishes from legal and medical decisions. (3) Route advance directives, treatment decisions and legal documents to the medical team and legal advisers [synthesis]. (4) Explore conflicts between the client's wishes and family's. (5) Help the client rehearse telling the family. (6) With consent, share the wishes with the doula, who records them.
  • Example language (illustrative): "Before we look at forms, let's talk about what matters to you. Then your doctors can help with the medical decisions and your doula can write down the rest."
  • Watch for: coercion by relatives, ambivalence, capacity questions. It is working when the client feels their wishes are clear and heard.

4.8 Vigil planning

  • Purpose and when to use: the client wants a say in how their final days unfold. In the doula model the doula asks who the person wants present, what music, where and in what kind of bed, and then acts on the answers [source: Mendoza 2018]; the book covers planning for the final days and vigil care [source: National End-of-Life Doula Alliance book listing].
  • Steps: (1) Ask whether the client wants to plan; some do not, and that is respected. (2) Explore the senses and setting: people, sounds, music, light, readings, objects, smells, words they want to hear [synthesis built on the published examples]. (3) Ask about religious or cultural practices at the time of death and after, and who should lead them (4.10). (4) Ask who should not be present and how to handle that. (5) Plan for the possibility the plan cannot be followed (sudden death, hospital admission) [synthesis]. (6) With consent, give the plan to the doula and medical team.
  • Example language (illustrative): "Some people like to picture how they'd want the room to be near the end: who's there, what you'd hear. Would that feel helpful, or would you rather not?"
  • Watch for: family disagreement, a plan that cannot fit the care setting, distress at thinking about the end (slow down). It is working when the client has a plan they recognise as theirs, or a clear choice not to plan.

4.9 Preparing family for the dying time

  • Purpose and when to use: relatives are frightened of what dying will look like or are exhausted. Doulas explain the dying process and what the patient is facing and alert the family to significant changes, so they can rest [source: Mendoza 2018]; the book offers guidance on signs and symptoms of dying [source: National End-of-Life Doula Alliance book listing].
  • Steps: (1) Ask what the relative fears most. (2) Leave descriptions of physical signs to the hospice team and doula; the therapist's job is the emotional response [synthesis]. (3) Normalise anticipatory grief, ambivalence, relief and exhaustion. (4) Help the family share vigil time so no one carries it alone. (5) Talk through being absent at the moment of death, which may happen despite planning [synthesis].
  • Example language (illustrative): "Your nurses and the doula can tell you what changes to expect. Here, let's talk about how you're holding up, and what you'd need to feel less alone in this."
  • Watch for: guilt about wanting it to end, conflict between siblings, a carer at breaking point. It is working when relatives can take breaks and describe a shared plan.

4.10 Cultural, spiritual and religious assessment; collaboration with faith leaders

  • Purpose and when to use: at the start, and whenever rites, beliefs or moral distress arise. The INELDA Code asks doulas to respect culture's role in dying and in the idea of a "good death", and to ask directly or consult outside sources [source: INELDA Code of Ethics].
  • Steps: (1) Use the DSM-5-TR Cultural Formulation Interview with its supplementary module on spirituality, religion and moral traditions [uncertain: not verified]. (2) Ask which rites the client and family expect at death, at the funeral and in mourning, and who holds authority for them. (3) Where a crisis of faith, guilt before God or conflict with the tradition is the focus, the DSM-5-TR "Religious or Spiritual Problem" may apply, coded Z65.8 (ICD-10-CM Z65.8, "Other specified problems related to psychosocial circumstances", which lists religious or spiritual problem under Includes) [source: ICD-10-CM Z65.8 (Unbound Medicine)]; DSM-5-TR wording [uncertain: not verified]. (4) Offer collaboration with the client's chaplain, imam, rabbi, priest or other leader if the client wishes (see XV 115). (5) Respect beliefs about death, the afterlife and ancestors as the client and tradition hold them, without endorsing or disputing them [synthesis]. (6) Ask about LGBTQ+ partners, estranged relatives, disability access and cost, which can shape who is allowed at the bedside or the rites [synthesis].
  • Example language (illustrative): "Are there prayers, rituals or customs that matter to you or your family around death? Who would you want to lead them?"
  • Watch for: the doula's or therapist's own beliefs shaping the plan (the Code bars using the relationship for religious interests [source: INELDA Code of Ethics]); family excluding a partner. It is working when the plan reflects the client's own tradition, or chosen lack of one.

4.11 Collaboration with the doula and the hospice or medical team

  • Purpose and when to use: whenever the therapist, doula and medical team serve the same person. Doulas respect medical providers' boundaries [source: INELDA trainings page]; how doulas fit with mainstream services is unclear in the research [source: Rawlings et al. via Flinders blog].
  • Steps: (1) With consent, contact the doula and the hospice key worker. (2) Agree a short written division of labour: medical and nursing care (team), comfort, vigil and practical support (doula), psychological care and risk assessment (therapist), spiritual care (chaplain or faith leader) [synthesis]. (3) Agree how and when to share concerns, especially risk. (4) Route every medical or medication question to the team; neither doula nor therapist advises on medicines [source: INELDA trainings page; synthesis]. (5) Review roles as the illness progresses.
  • Example language (illustrative, to a doula): "With [client]'s permission, I'd like us to agree who covers what, and how we let each other know if something worries us."
  • Watch for: role drift (the doula doing counselling, the therapist doing practical care), conflict with hospice staff. It is working when the family experiences one coordinated team.

4.12 Respite and caregiver strain

  • Purpose and when to use: the main carer is the therapist's client and is exhausted. INELDA says doula support can reduce caregiver burnout and lists respite care [source: INELDA trainings page].
  • Steps: (1) Assess sleep, health, mood and drinking or other coping [synthesis]. (2) Identify what respite exists: doula, hospice volunteers, relatives. (3) Address guilt about leaving the bedside. (4) Plan small breaks the carer will actually take. (5) Screen for depression and suicide risk if strain is severe (4.15).
  • Example language (illustrative): "You can't be at the bedside every hour. If the doula sat with your mother for an afternoon, what would you do with that time?"
  • Watch for: refusal of all help, health decline in the carer. It is working when the carer accepts some respite.

4.13 Touch and comfort-care boundaries

  • Purpose and when to use: when the therapist is also acting as a doula, or when a client asks about touch from the doula. INELDA lists non-medical comfort care, and requires explicit consent for physical care and touch from the dying person, the circle of care and the medical team [source: INELDA trainings page].
  • Steps: (1) Ask before any touch, and again during. (2) Say clearly the person can stop it at any time. (3) Check with the medical team where the body is fragile [source: INELDA trainings page]. (4) Never sexual touch; the INELDA Code also bars sexual relationships with clients and their families, including for a period after death [source: INELDA Code of Ethics]. (5) In a therapist-only role, touch is not part of the work [synthesis].
  • Example language (illustrative): "Would you like me to hold your hand? Tell me if you want me to stop."
  • Watch for: a person who cannot speak (watch for withdrawal, grimacing, turning away) [synthesis]. It is working when touch is welcomed and stopped on request.

4.14 Involving children and supporting children's grief

  • Purpose and when to use: children are in the family of a dying person or have been bereaved. The doula sources do not address children specifically [uncertain: not verified]; DSM-5-TR notes that in children and adolescents the preoccupation in prolonged grief may focus on the circumstances of the death [source: APA DSM-5-TR prolonged grief fact sheet].
  • Steps: (1) Ask parents what the child knows and how they have reacted [synthesis]. (2) Help parents give honest, age-appropriate information. (3) Offer children a choice about visiting, being present at the vigil, joining rites and contributing to legacy work. (4) Watch for magical thinking, guilt and worry about the circumstances of the death. (5) Follow safeguarding duties; child consent and assent; refer to specialist child bereavement services when needed. Never record identifying details about the child beyond what the record needs [synthesis].
  • Example language (illustrative, to a parent): "Children often cope better with clear, simple truth than with silence. What words would feel right for your family?"
  • Watch for: children excluded from all rites, adult tasks placed on an older child, regression or school refusal. It is working when the child asks questions and shares feelings with a trusted adult.

4.15 Suicide risk assessment with the dying and the bereaved

  • Purpose and when to use: a dying client voices hopelessness or a wish to hasten death, or a bereaved relative shows suicidal thinking. Wishing for death can be part of dying and still needs careful assessment [synthesis].
  • Steps: (1) Ask directly and calmly about suicidal thoughts, intent and plans, following your service's current risk-assessment practice [synthesis]. (2) Separate a wish for death to come, distress about suffering, and active suicidal intent. (3) Tell the medical team about unrelieved pain or symptoms, with consent where possible and as safety requires. (4) Lethal-means counselling: secure storage and removal, coordinated with the hospice team, without method detail [synthesis]. (5) Where a client raises a lawful assisted-dying route, follow local law and your service's policy, and do not advise for or against it; the doula's role stays non-medical [synthesis; uncertain: not verified]. (6) Give crisis resources: 988 Suicide and Crisis Lifeline (US); Samaritans 116 123 (UK and Ireland). (7) Agree with the doula how they will pass on a risk concern (4.4).
  • Example language (illustrative): "Sometimes people this ill wish it would all be over. Have you had thoughts of ending your life yourself?"
  • Watch for: sudden calm after despair, giving away belongings, stockpiling, a bereaved person wanting to "join" the deceased. It is working when the client can talk openly about death wishes and a safety plan is in place.

4.16 Reprocessing and debriefing the dying time

  • Purpose and when to use: after the death, with a family member who is the therapist's client. In the doula model the doula reprocesses the death with the family and begins early grief work; INELDA lists reprocessing sessions [source: National End-of-Life Doula Alliance book listing; INELDA trainings page]. The therapist's version takes place in therapy, and does not replace the doula's session [synthesis].
  • Steps: (1) Ask if the client wants to go over the dying time, and when. (2) Invite the story in order: the last days, the moment of death, what came after. (3) Notice moments of meaning and moments of horror, guilt or regret. (4) Address "if only" thoughts with compassion and facts (many of which the medical team can supply). (5) Note intrusive images or avoidance that suggest trauma and need assessment [synthesis].
  • Example language (illustrative): "Would it help to go back over those last days together? You can tell it however it comes."
  • Watch for: the client stuck on one image, unrelenting guilt about not being present at the death. It is working when the story becomes tellable and holds both pain and meaning.

4.17 Grief assessment, including prolonged grief disorder

  • Purpose and when to use: in bereavement follow-up, to tell expected grief from prolonged grief disorder (PGD) and other conditions.
  • Steps: (1) Assess grief alongside depression, PTSD, substance use and suicide risk [synthesis]. (2) ICD-11 (6B42): persistent, pervasive grief after the death of a partner, parent, child or other close person, with longing for or preoccupation with the deceased plus intense emotional pain (for example sadness, guilt, anger, denial, blame, difficulty accepting the death, numbness); lasting atypically long, at least six months after the loss; clearly exceeding the person's social, cultural or religious norms; with significant impairment [source: ICD-11 6B42]. (3) DSM-5-TR places PGD in the trauma- and stressor-related disorders chapter; core features are intense longing and preoccupation with the deceased, and in children and adolescents preoccupation may centre on the circumstances of the death [source: APA DSM-5-TR prolonged grief fact sheet]. DSM-5-TR time thresholds and symptom counts [uncertain: not verified]. (4) Ask what grief looks like in the client's culture before judging it prolonged. (5) For PGD, refer to or provide a grief-focused treatment (see Domain II 127; for non-disordered grief, Domain VI 128).
  • Example language (illustrative): "In your family and community, how long do people usually mourn, and how does your grief compare with what you'd expect?"
  • Watch for: diagnosing too early or applying majority-culture norms. It is working when the formulation fits the client's experience and context.

4.18 Supporting the client's own mourning practices; disrupted and unfinished rites

  • Purpose and when to use: mourning rites were missed, curtailed or contested: pandemic restrictions, a death abroad or in migration, a vigil plan that could not happen, or a family that excluded the client [synthesis]. The doula model's emphasis on planned vigils means a disrupted plan can feel like a second loss [synthesis].
  • Steps: (1) Ask which rites happened, which did not, and what that means. (2) Ask what the tradition allows later (later memorials, anniversaries, prayers) and who has authority; consult the client's faith leader if they wish (see XV 112). (3) If the client wants a personal ritual, they design it; the therapist helps with structure, not content [synthesis]. (4) Use the legacy items and vigil plan as resources. (5) Revisit at anniversaries.
  • Example language (illustrative): "You weren't able to be there or to hold the funeral you wanted. Is there something you'd still want to do, now or on the anniversary?"
  • Watch for: shame about breaking with tradition, conflict with relatives about rites. It is working when the client finds a form of mourning that feels right.

4.19 Suicide bereavement and safe messaging

  • Purpose and when to use: the death was by suicide, or the bereaved relative is at risk. The doula sources do not address suicide bereavement [uncertain: not verified].
  • Steps: (1) Assess the client's own suicide risk regularly (4.15). (2) Follow safe-messaging principles: no method details, do not present suicide as a solution or as inevitable, avoid sensational language, emphasise that help exists [synthesis; specific guideline documents uncertain: not verified]. (3) Address guilt, anger, stigma and questions of why. (4) Help the client decide what to tell others, including children (4.14). (5) Signpost suicide-bereavement peer support and crisis lines: 988 (US); Samaritans 116 123 (UK and Ireland).
  • Example language (illustrative): "Many people bereaved by suicide carry questions that may never have full answers. We can make room for those questions here."
  • Watch for: identification with the deceased, anniversary risk. It is working when the client stays safe and can speak of the death without shame.

4.20 Supporting a doula as a client

  • Purpose and when to use: the therapy client is a doula, or the therapist is a doula working through their own reactions. Many doulas lack supervision [source: Rawlings et al. via Flinders blog]; many trainees describe the work as a spiritual calling and say it changed them [source: Mendoza 2018]; the INELDA Code mentions supervision by an experienced doula or end-of-life clinician [source: INELDA Code of Ethics].
  • Steps: (1) Explore cumulative grief and losses re-activated by the work [synthesis]. (2) Review boundaries, fees and dual roles against the doula's code. (3) Encourage formal supervision and peer support. (4) Plan rest between vigils [synthesis].
  • Example language (illustrative): "You sit with a lot of death. Who sits with you after?"
  • Watch for: over-involvement with families, loss of objectivity (the Code's cue to refer or seek supervision) [source: INELDA Code of Ethics]. It is working when the doula keeps clear boundaries and sustainable rest.

4.21 Ending and transition after the death

  • Purpose and when to use: after the death, when the doula's and therapist's work with the family changes. Doulas stay available for early grief after death [source: Mendoza 2018].
  • Steps: (1) Clarify whether the doula's involvement has ended, and what the therapist continues. (2) Offer the bereaved a choice to continue therapy, pause, or be referred to bereavement services [synthesis]. (3) Keep the INELDA Code's boundaries after death, including no sexual relationships with families for a period after the death and caution with social media [source: INELDA Code of Ethics]. (4) Mark the ending explicitly.
  • Example language (illustrative): "The doula's work with your family is ending now. You're welcome to keep coming here as you grieve, or we can find a bereavement group if you'd prefer."
  • Watch for: abrupt loss of all supports at once. It is working when the bereaved person knows where ongoing support is.

5. Handling problems

The doula sources address scope, consent, confidentiality, dual roles and objectivity; most other guidance below is [synthesis].

  • Client too unwell or fatigued for meaning or legacy work. Shorten contacts, offer a single question per visit, let a relative or the doula do the practical part, or let the work go; presence alone is part of the model [source: INELDA trainings page; synthesis].
  • Client refuses to plan or talk about dying ("resistance"). Respect it; autonomy of the dying is a core principle [source: INELDA trainings page]. Ask what talking about it would cost them, and offer to return to it later. Do not let the family's need for a plan override the client's [synthesis].
  • Overwhelm during life review or vigil planning. Pause, ground in the present (the room, a hand held with consent, breath at the client's own pace), return to safer topics; check for trauma or depression [synthesis].
  • Family conflict over the plan or rites. Bring the client's recorded wishes back to the centre; offer a family meeting with the doula and hospice social worker; involve a faith leader the client chooses [synthesis]. Watch for excluded partners, including LGBTQ+ partners [synthesis].
  • "Non-adherence" (legacy work unfinished, plan abandoned). Treat it as information: energy, ambivalence or changing priorities. An unfinished project can still be given as it is [synthesis].
  • Rupture with the doula or between doula and hospice staff. Clarify roles in writing (4.11); return medical questions to the team [source: INELDA trainings page]. If the doula oversteps scope (medical advice, medication, pressure, recruitment), raise it with the client and, with consent, with the doula and their training body; the INELDA Code requires doulas to report unethical conduct by other caregivers [source: INELDA Code of Ethics].
  • Rupture with the therapist. Name it, own your part, and check whether the client wants a different helper at this stage of life [synthesis].
  • Dual-role strain (therapist as doula). Stop and consult; offer referral to another doula or therapist [source: INELDA Code of Ethics; APA Ethics Code Standard 3.05].
  • Unregulated or poorly trained doula. No enforced industry standard exists and training varies [source: INELDA trainings page; Rawlings et al. via Flinders blog]. Give the client the evaluation questions in 4.2; support a change of doula if wanted [synthesis].
  • Cost barriers. Some doulas volunteer; ask about hospice-based or charity doula programmes [source: Information Now listing; synthesis].
  • The death did not go as planned (sudden death, death in hospital, absent family). Work with the gap between the plan and what happened (4.16, 4.18); avoid implying the death was "bad" [synthesis].
  • Suspected abuse, neglect or financial exploitation of the dying person. Follow adult safeguarding and reporting duties in your jurisdiction; the doula's confidentiality also yields to serious, imminent harm [source: INELDA Code of Ethics; synthesis].
  • Suicide concern (dying client, carer or bereaved). See 4.15 and 4.19; 988 (US), Samaritans 116 123 (UK and Ireland).
  • Prolonged grief. Assess against ICD-11 and DSM-5-TR (4.17) and refer to grief-focused treatment (Domain II 127) [synthesis].
  • Therapist's own grief or burnout. Take it to supervision; refer on if objectivity is affected [source: INELDA Code of Ethics; synthesis].

Sources

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