Palliative care and hospice

1. Introduction

Version followed: the WHO palliative care fact sheet (current online version) for the definition and model; NICE guideline NG142, End of life care for adults: service delivery, for UK service organisation; Cicely Saunders' concept of total pain as the Cicely Saunders Institute (King's College London) describes it; dignity therapy as delivered in the Chochinov et al. 2011 Lancet Oncology randomised trial; individual meaning-centred psychotherapy (IMCP, seven sessions) as specified in the Memorial Sloan Kettering protocol NCT01323309 and meaning-centred group psychotherapy (MCGP, eight sessions) as reported for Breitbart et al. 2015; CALM as specified in Rodin et al. 2018.

What it is. Palliative care is not a single therapy or a single registered profession. It is a model of care. WHO defines it as "an approach that improves the quality of life" of patients (adults and children) and their families facing life-threatening illness. It does this by preventing and relieving suffering through early identification, careful assessment and treatment of pain and other problems, "whether physical, psychosocial or spiritual". It uses "a team approach to support patients and their caregivers", covers practical needs and bereavement counselling, and is "most effective when considered early in the course of the illness" [source: WHO fact sheet; ehospice report of the WHO fact sheet]. Hospice care is the setting-based tradition from which the modern model grew. Cicely Saunders (1918–2005) had worked as a nurse and a medical social worker before qualifying as a physician in 1957. In 1967 she founded St Christopher's Hospice in Sydenham, London, widely regarded as the first modern hospice [source: KCL Cicely Saunders Institute; Leeds Living with Dying].

Core idea of how change happens. The model does not aim to cure. Suffering is reduced by assessing and treating every dimension of distress together. In Saunders' concept of total pain, suffering has physical, psychological, social and spiritual components, and the Cicely Saunders Institute adds practical struggles. Pain judged only by its bodily cause is under-treated. Once physical symptoms are controlled, the patient and carers can turn to quality of life, relationships and meaning [source: KCL; Leeds Living with Dying]. Psychological change, as the meaning-centred and dignity approaches frame it, comes from sustaining a sense of meaning, purpose, identity and dignity while dying, and from preparing family members for life after the death [source: Chochinov et al. 2011 via Focus; NCT01323309 protocol; Rodin et al. 2018].

Who delivers it and regulation. Palliative care is delivered by multidisciplinary or "multipractitioner" teams. WHO lists physicians, nurses, pharmacists and volunteers among others. NICE defines a multipractitioner team as practitioners from different disciplines and organisations who make treatment decisions together, and expects skills across disease-specific, physical, psychological, social, daily-living, spiritual and cultural needs [source: WHO; NICE NG142 1.9]. Each team member is regulated by their own professional body (for example, doctors, nurses, social workers and practitioner psychologists each have a statutory regulator in the UK). Statutory regulation of the title "psychotherapist" or "counsellor" varies by country [uncertain]. In this model, the psychotherapist is one member of the team: they work collaboratively, refer on, and integrate psychological work into a shared plan. They do not run the plan. This guide contains no medication content. All questions about symptom control, medicines or medical treatment go to the medical and nursing team.

Cross-reference. Other guides in this collection may cover dignity therapy, meaning-centred psychotherapy, psycho-oncology and grief therapies in more depth. Here they appear in the form a therapist uses within a palliative or hospice team.

2. Framework

Palliative care is organised around stages of the illness trajectory, not fixed therapy phases. The stages below follow the NICE service-delivery pathway and the WHO model, with the psychotherapist's tasks at each one. The task assignments are [synthesis] built on the cited structure.

Stage A: Identification (possibly the last year of life). Services set up systems to identify adults likely to be approaching the end of life (NICE names tools such as the Gold Standards Framework, AMBER care bundle and SPICT) and identify carers and other people important to them [source: NICE NG142 1.1.1–1.1.2]. Goal: timely recognition so that advance care planning and holistic assessment can begin. Psychotherapist: referral may come in at this point, often for adjustment, anxiety or depression after a prognosis conversation. Move on when: the person has been identified and an initial holistic assessment is planned.

Stage B: Holistic needs assessment and care planning. The practitioner carries out and documents an initial holistic needs assessment with the person. Staff need training to do this sensitively. Practitioners should know about the duty to offer carers' assessments (Care Act 2014) and young carers' assessments (Children and Families Act 2014) in England [source: NICE NG142 1.2.1–1.2.3]. Services find out what information people want, give it in their preferred way, and review information needs as things change [source: NICE NG142 1.4.3]. Advance care planning is offered, carers are involved if the person agrees, and the person keeps a copy of the plan with them [source: NICE NG142 1.6.1–1.6.3]. Psychotherapist: psychological assessment (section 4, B1), a total-pain formulation shared with the team, and support for information and advance care planning conversations. Move on when: needs are documented, a care coordinator is named, and the person knows who is in the team [source: NICE NG142 1.10.4].

Stage C: Living with advanced illness (months, sometimes years). This is the main window for structured psychotherapy, because the person still has the energy and cognitive capacity for it. Typical formats: CALM, three to six individual sessions of 45–60 minutes over 3–6 months, at least monthly in the first 3 months, for people with a prognosis of at least about a year, with optional caregiver attendance [source: Rodin et al. 2018]. IMCP, seven weekly one-hour individual sessions, completed within up to 14 weeks [source: NCT01323309 protocol]. MCGP, eight manualised group sessions [source: ASCO Post on Breitbart et al. 2015]. Supportive and existential work, family sessions and anticipatory grief work run alongside. Move on when: function or cognition declines, or the team signals that prognosis is now short. Then switch to briefer, legacy-focused or presence-based work.

Stage D: Short prognosis (weeks). Typical format: dignity therapy, usually three or four contacts over about 7–10 days: an introductory meeting of about 30 minutes, a recorded session of about 60 minutes, then a final session of about 30 minutes to read back the edited document. The trial included people with a prognosis of 6 months or less and excluded people with delirium or cognitive impairment [source: Chochinov et al. 2011 via Focus]. Sessions are short, flexible and at the bedside. Care coordination, out-of-hours access to the plan, and crisis anticipation become central [source: NICE NG142 1.9.1, 1.12.1]. Move on when: the person enters the last days of life.

Stage E: Last days of life. Clinical care of adults expected to die within hours or days is outside NG142's scope and is covered by NICE NG31 [source: NICE NG142 scope]. Psychotherapist: presence with family, supporting goodbyes, and preparing family for what they may see, in coordination with nursing staff [synthesis].

Stage F: Bereavement. WHO includes bereavement counselling in palliative care [source: WHO fact sheet]. Psychotherapist: follow-up contact, risk screening, bereavement support, and referral for specialist grief therapy where grief stays impairing [synthesis]. The NG142 service-delivery document does not set out bereavement recommendations [source: NICE NG142].

Throughout: staff support. Reflective practice, debriefing after difficult deaths, and attention to staff wellbeing [synthesis]. NG142 addresses staff training but not staff wellbeing [source: NICE NG142 1.2.2].

3. Guiding principles

Quality of life, not cure, is the aim. Judge each session by whether it adds something the person values in the time they have [source: WHO fact sheet].
Total pain. Physical, psychological, social, spiritual and practical suffering interact. Never treat psychological distress in isolation from uncontrolled symptoms, and always ask the team whether physical pain is controlled [source: KCL; Leeds Living with Dying].
The family is part of the unit of care. WHO's definition names patients and families. Identify carers early and offer them support of their own [source: WHO; NICE NG142 1.1.2, 1.3.1].
Early integration. Psychological care is most useful early in the illness, not only at the very end, so take referrals at diagnosis of advanced disease [source: WHO fact sheet; Rodin et al. 2018].
Team working. Decisions are made by the multipractitioner team. Share your formulation, document in shared records, and know who coordinates care [source: NICE NG142 1.8.1–1.8.2, 1.9, 1.10].
The person sets information preferences. Ask what and how much the person wants to know, and review it as things change [source: NICE NG142 1.4.3].
Open communication reduces anguish. Saunders' hospice practice favoured telling patients, not only families, their prognosis. Support honest conversations at the person's pace [source: Leeds Living with Dying].
"You matter because you are you." Saunders' words. Affirm the person's identity beyond the illness [source: KCL].
Meaning remains available. Following Frankl, the meaning-centred approach holds that meaning can be found in history (legacy), attitude toward limitation, creativity and responsibility, and experience (love, beauty, humour). When illness closes one source, help the person turn to another [source: NCT01323309 protocol].
Dignity and generativity. Help the person leave something lasting and pass something on to the next generation. Their dignity is shaped by how others see and treat them [source: Chochinov et al. 2011 via Focus; Dose & Rhudy 2017].
Flexibility over fidelity to session counts. Session number and focus shift with health status. Offer shorter or bedside sessions as needed [source: Rodin et al. 2018; Chochinov et al. 2011 via Focus].
Capacity and consent. Use advance care planning while the person has capacity. When capacity is lost, carers' views are considered within the legal framework (in England and Wales, the Mental Capacity Act 2005) [source: NICE NG142 1.6.4].
No medication advice. Notice and pass on symptom concerns, and route every treatment question to the prescriber or team [synthesis].
Know the law where you practise. This covers capacity, advance decisions, and whether any form of assisted dying is lawful, since legal frameworks vary by jurisdiction. Refer questions to the medical team or the legal pathway [synthesis].
Look after yourself and the team. Repeated exposure to death calls for reflective supervision and team support [synthesis].

4. Intervention inventory

Part A describes how the palliative care model is delivered, as WHO and NICE publish it, so the therapist knows the system they work in. Part B lists the psychotherapist's own interventions. All example language is illustrative wording written for this guide, not text from the authors' manuals.

A1. How palliative and hospice care is delivered (descriptive)

Purpose: to orient the therapist to the team and pathway they work within.
Steps (as published):
1. Systems identify adults likely to be approaching the end of life, and identify carers and other important people [source: NICE NG142 1.1].
2. An initial holistic needs assessment is done with the person and documented. Carers' and young carers' assessments are offered where the law requires it (England) [source: NICE NG142 1.2].
3. Information needs are explored and reviewed [source: NICE NG142 1.4.3]. Advance care planning is offered, and the person keeps a copy of the plan [source: NICE NG142 1.6].
4. A multipractitioner team with skills across physical, psychological, social, spiritual and cultural needs anticipates and tries to "prevent or minimise crises" and supports the person's preferred place of care and death [source: NICE NG142 1.9.1–1.9.2].
5. Care is coordinated through primary and community care (usually the GP) and through hospital, hospice or disease-specific specialists. The coordinator tells the person who is in the team, arranges reviews, and shares information [source: NICE NG142 1.10].
6. Records and the advance care plan are shared electronically across services and are available to out-of-hours practitioners [source: NICE NG142 1.8, 1.12.1].
7. Internationally, WHO calls for palliative care to be part of primary, community and home-based care at all levels of the health system, supported by family and community volunteers, and includes bereavement counselling [source: WHO fact sheet; WHA67.19 as summarised in the fact sheet].
Example language (illustrative): "I'm the psychotherapist in the team. The nurse specialist and doctor look after your symptoms. My part is how you and your family are coping. With your permission we share notes so you don't have to repeat your story."
Watch for: confusion about who coordinates care. Refer the person to the named coordinator, never fill gaps yourself. Watch also for psychological concerns that never reach the shared record.

B1. Psychological assessment within the holistic needs assessment

Purpose: to identify psychological, social, spiritual and practical suffering, and to separate expected sadness from disorders or crises that need specific responses. Use it at referral and repeat it when the person's condition changes [source for holistic assessment: NICE NG142 1.2; total-pain dimensions: KCL].
Steps [synthesis built on the total-pain dimensions]:
1. Before meeting, check with the team how the person is physically: pain and symptom control, fatigue, best time of day, and any known cognitive change.
2. Ask the person what they understand about their illness and what they want to know (information preferences, NICE 1.4.3).
3. Go through each total-pain domain. Physical: how symptoms affect mood, and whether pain is controlled (if not, flag it to the team). Psychological: mood, anxiety, fear of dying, loss of role, guilt, anger, past mental health history. Social: family, finances, carers, children, unfinished business. Spiritual/existential: meaning, faith, hope, peace, sense of burden, wish to hasten death. Practical: home, care, legal affairs.
4. Screen for depression and anxiety using a validated tool your service has adopted, and for delirium or cognitive change by observation and by asking the team. Treat sudden confusion as a medical matter first.
5. Ask directly about suicidal thoughts and any wish for death to come sooner. Explore what lies behind it (for example pain, fear, feeling a burden, loss of dignity) and assess risk using standard practice (B10).
6. Write a short total-pain formulation and share it with the team. Agree who addresses which need.
Example language (illustrative): "Some people in your situation feel low, some frightened, some mostly worried about family. Where are you with all of that?" / "Has there been a time recently when you wished it would all be over sooner?"
Watch for: fluctuating attention, disorientation or new perceptual disturbances (possible delirium; request urgent medical review). Watch for distress that goes away when pain is treated (it was physical). Watch for pervasive hopelessness or anhedonia beyond what the losses explain (possible depression; discuss with the team). Working as intended: the team acts on the formulation, and the person feels heard across all domains.

B2. Total-pain formulation and team liaison

Purpose: to make psychological and spiritual suffering visible in team decisions [source for concept: KCL; Leeds Living with Dying; team decision-making: NICE NG142 1.9].
Steps [synthesis]:
1. Map the main sources of suffering onto the four or five domains, and note how they interact (for example, breathlessness causing panic, which worsens the breathlessness).
2. Bring the formulation to the multidisciplinary meeting in two or three sentences, with one clear request (for example, a symptom review, a chaplaincy visit, social-work help with money, or a family meeting).
3. Record it in the shared record in plain language, within consent and confidentiality limits agreed with the person.
4. Review it after each major change.
Example language (to team, illustrative): "Her nights are the worst point. Fear of dying alone drives the breathlessness calls. I'm seeing her twice weekly. Could nursing review the night plan, and could chaplaincy visit? She asked for that."
Watch for: psychological labels used to dismiss physical complaints. Watch for the team assuming distress is "for psychology" when it needs medical review. Working as intended: requests are acted on and duplicate questioning of the patient drops.

B3. Exploring existential distress (supportive-expressive and existential work)

Purpose: to help the person speak about mortality, fear, loss of self, meaning and hope in a reflective relationship. CALM draws on relational, attachment and existential theory and offers a therapeutic relationship and "reflective space" [source: Rodin et al. 2018]. The supportive comparator in the IMCP trial was built on Rogerian person-centred principles: here-and-now focus and emotional expression [source: NCT01323309 protocol].
Steps:
1. Invite, don't push. Ask whether the person wants to talk about the future, and how much.
2. Follow their language and metaphors. Reflect feeling and meaning.
3. Name the losses explicitly (body, roles, plans, independence) and allow grief for each.
4. Explore fears concretely (pain, being a burden, the process of dying, what happens after). Route physical fears to the team for factual answers.
5. Help the person hold two things at once, living now and preparing for death, without forcing either [synthesis].
6. Close each session by grounding the person in the present and checking their energy.
Example language (illustrative): "You said you've been 'putting a brave face on it'. What's behind the face when nobody is looking?" / "What frightens you most when you think about the end? We can look at it a piece at a time."
Watch for: exhaustion (shorten the session), avoidance as a needed coping style (respect it), spiritual questions the person wants a faith adviser for (offer chaplaincy). Working as intended: the person reports feeling less alone with it, can name what matters, and talks more openly with family.

B4. Dignity therapy (Chochinov)

Purpose: a brief, individual, recorded life-review interview that produces an edited "generativity document" for the person to leave to people they choose. It aims to strengthen meaning, purpose, sense of self and dignity near the end of life. Generativity means guiding the next generation and taking comfort that something lasting remains [source: Chochinov et al. 2011 via Focus]. It is based on an empirical model of dignity with three components: illness-related concerns, a dignity-conserving repertoire, and a social dignity inventory [source: Dose & Rhudy 2017].
When to use: people with short prognosis (the trial used 6 months or less), in hospital, hospice or home palliative care, who are cognitively intact enough to take part and want to leave a record. Not suitable with delirium or significant cognitive impairment, or when too ill to complete the contacts [source: Chochinov et al. 2011 via Focus].
Steps (as delivered in the 2011 trial):
1. Introduction (about 30 minutes). Explain the process and show the person the question framework so they can think about what to include [source: Chochinov et al. 2011 via Focus]. Ask who the document is for.
2. Recorded session (about 60 minutes), within a few days. Use the framework flexibly, following the person's preferences. Its prompts cover, in paraphrase: life history and the times they felt most alive; what they want family to know and remember about them; important roles; accomplishments and pride; things still to be said to loved ones; hopes and dreams for loved ones; life lessons and advice; words to help family prepare for the future; anything else for the permanent record [source: Chochinov et al. 2011 via Focus, paraphrased]. The authorised framework is published in Chochinov's work and is not reproduced here.
3. Transcribe and edit. Transcribe the recording verbatim, then edit it into a clear, readable narrative. Fix the chronology, remove hesitations and repetitions, and keep the person's voice [source: Chochinov et al. 2011 via Focus; Dose & Rhudy 2017].
4. Return quickly. In the trial, the document came back within about 4 working days [source: Chochinov et al. 2011 via Focus]. With shorter prognosis, work faster [synthesis].
5. Read-back session (about 30 minutes). Read the whole document aloud. The person corrects errors and omissions and may add or delete content [source: Chochinov et al. 2011 via Focus; Dose & Rhudy 2017].
6. Hand over the final version for the person to give to the recipient of their choice [source: Chochinov et al. 2011 via Focus].
Training: trial therapists were psychologists, psychiatrists or experienced palliative care nurses, with a 3-day workshop and ongoing supervision [source: Chochinov et al. 2011 via Focus]. Seek formal training before using the method [synthesis].
Example language (illustrative): "This is a chance to record the things you most want the people you love to know, in your own words. I'll type it up, read it back to you, and you decide what stays." / "You mentioned the farm. When did you feel most alive there?"
Watch for: fatigue (split the recording into shorter segments [synthesis]). Watch for statements that could hurt recipients. Gently ask how the person wants them to be read, and whether to keep, rephrase or remove them; the person decides, but name the possible impact [synthesis]. Watch for rapid decline: prioritise the most important messages early and agree in advance what happens to the document if the person dies before read-back [synthesis]. Some people decline because they expect the conversation to be too hard; respect that [source: Dose & Rhudy 2017]. Working as intended: the person engages, edits actively, and expresses comfort at what they are leaving.

B5. Individual meaning-centred psychotherapy (IMCP, Breitbart)

Purpose: to help people with advanced cancer sustain or enhance meaning, peace and purpose, drawing on Viktor Frankl's logotherapy. Use it when the main distress is loss of meaning, hopelessness or a wish for hastened death, and the person has a few months and enough energy for weekly sessions [source: NCT01323309 protocol]. Adaptation beyond cancer is [synthesis].
Format: seven weekly one-hour individual sessions, completed within up to 14 weeks. Each session combines teaching, discussion and experiential exercises, with session-specific homework and readings (including Frankl's Man's Search for Meaning), plus an optional Legacy Project [source: NCT01323309 protocol]. The full manual is Individual Meaning-Centered Psychotherapy for Patients with Advanced Cancer: A Treatment Manual (Oxford University Press, 2014), usually cited as Breitbart & Poppito [uncertain: the Oxford Academic record credits Shannon Poppito; Breitbart's co-authorship is confirmed only for the companion group manual].
Steps (session topics as the protocol lists them; content within sessions summarised in own words):
1. Concepts and sources of meaning. Introduce the idea that meaning can be found in four sources and explore the person's own definition of meaning and moments when life felt most meaningful.
2. Cancer and meaning: identity before and after diagnosis. Explore who the person was before and who they are now, and what the illness has changed or not changed.
3. Historical sources of meaning: legacy (past, present, future). Review the life lived, what was given and received, and what the person wants to leave behind. Introduce the Legacy Project here [synthesis on timing].
4. Attitudinal sources of meaning: encountering life's limitations. Explore choosing one's stance toward suffering and limitation that cannot be changed.
5. Creative sources of meaning: creativity and responsibility. Explore what the person still creates, contributes or takes responsibility for, including unfinished business.
6. Experiential sources of meaning: connecting with life through beauty, love and humour.
7. Transitions: reflection and hopes for the future. Review the work and the Legacy Project, and say goodbye. [source for titles and structure: NCT01323309 protocol] Throughout, stress flexibility: when illness closes one source of meaning, help the person turn to another [source: NCT01323309 protocol].
Legacy Project: an optional product made outside sessions, such as an autobiography, artwork or photo album [source: NCT01323309 protocol].
Training: trial therapists held at least a master's degree in mental health counselling, social work or psychology and received manual-based training, booster training and supervision. Fidelity was checked with session checklists and recordings [source: NCT01323309 protocol].
Example language (illustrative): "When you look back, what are the moments that made you most yourself?" / "You can't change the diagnosis. What can you still choose about how you meet it?" / "This week, notice one moment of beauty or humour and bring it next time."
Watch for: missed sessions through illness (the 14-week window allows this). Watch for homework that becomes a burden (make it optional or oral). Watch for a person who finds the teaching parts abstract (lead with their own stories) [synthesis]. Working as intended: the person names concrete sources of meaning still available, hopelessness eases, and the legacy work progresses.

B6. Meaning-centred group psychotherapy (MCGP, Breitbart)

Purpose: the group version of meaning-centred work for outpatients with advanced cancer, based on Frankl's work, aimed at building or strengthening a sense of meaning [source: ASCO Post on Breitbart et al. 2015].
Format: eight manualised weekly group sessions of about 1½ hours each, mixing teaching, discussion and experiential exercises on themes related to meaning [source: Breitbart, ASCO Post 2015]. The trial at Memorial Sloan Kettering compared MCGP with supportive group psychotherapy [source: ASCO Post on Breitbart et al. 2015]. The manual is Breitbart WS & Poppito SR (eds), Meaning-Centered Group Psychotherapy for Patients with Advanced Cancer: A Treatment Manual (Oxford University Press, 2014) [source: MSKCC publication record; Oxford Academic book page]. Session themes, from the manual's chapter titles (paraphrased): 1 concepts and sources of meaning, with introductions; 2 cancer and meaning: identity before and after diagnosis; 3 historical sources: the legacy one has been given; 4 historical sources: the legacy one lives and will give; 5 not confirmed from the chapter pages (by the sequence, presumably attitudinal sources, as in B5) [uncertain]; 6 creative sources: creativity, courage and responsibility; 7 experiential sources: love, beauty and humour; 8 transitions: final reflections and hopes for the future [source: Oxford Academic chapter pages, Breitbart & Poppito 2014]. Content within each session is not reproduced here.
Steps [synthesis for group process]: screen members for fitness to attend and for current crises. Set group agreements (confidentiality, absence because of illness, how members will hear if someone becomes too ill or dies). Run each session with a short teaching segment, an experiential exercise, sharing in pairs or the whole group, and homework (the published format combines didactics, discussion and experiential exercises [source: Breitbart, ASCO Post 2015]). Plan in advance how the group will mark a member's death.
Example language (illustrative): "Today's theme is legacy. In pairs, share one thing you received from someone that you want to pass on." / "We've lost Maria since we last met. Let's take a moment before we begin."
Watch for: members' health diverging sharply, attrition through illness (in the trial, mean attendance was about 5.5 of 8 sessions [source: ASCO Post]), and one member's grim news overwhelming the others. Working as intended: members take up each other's themes and report more meaning and peace.

B7. CALM – Managing Cancer and Living Meaningfully (Rodin, Hales)

Purpose: a brief, manualised, individual, "tailored supportive-expressive" psychotherapy for people with advanced cancer, grounded in relational, attachment and existential theory. It aims to relieve and prevent depression and distress and to give a reflective space for the problems of advanced disease [source: Rodin et al. 2018].
When to use: advanced cancer with a prognosis of at least about a year, early in the palliative trajectory [source: Rodin et al. 2018]. Use in other advanced illnesses is [synthesis].
Format: three to six sessions of 45–60 minutes over 3–6 months, at least monthly in the first 3 months. Fewer than three sessions counted as not completing the intervention. The primary caregiver may join one or more sessions if the patient and therapist agree [source: Rodin et al. 2018].
Steps: cover the four domains in the order and depth the person needs [source for domains: Rodin et al. 2018; process steps are synthesis]:
1. Symptom management and communication with healthcare providers. Explore how the person experiences their symptoms and treatment and how they talk with their team. Help them prepare questions, clarify what they want to know, and decide how to raise concerns.
2. Changes in self and relations with close others. Explore changes in identity, body and roles, attachment needs, dependence, and communication with partner and family. Invite the caregiver when this would help.
3. Spiritual wellbeing and sense of meaning and purpose. Explore meaning, faith, values, priorities and purpose now.
4. Mortality and future-oriented concerns. Explore fears about dying, hopes, the wish for death to come sooner, advance care planning, and preparing others.
Training: in the trial: a 2-day workshop, at least two supervised cases judged satisfactory by the developers, then weekly case supervision with audiotape review. Fidelity was rated on an integrity scale adapted from Spiegel and Spira. Trial therapists were master's-level social workers and psychiatrists, and the authors state that psychologists, psychiatry residents and clinical nurse specialists could also be trained [source: Rodin et al. 2018]. Current training is run by the Global Institute of Psychosocial, Palliative and End-of-Life Care (GIPPEC), Princess Margaret Cancer Centre, University Health Network, Toronto, in three levels: introductory training open to all health professionals (rationale, structure, domains and processes of CALM, case presentations and practice with standardised patients); advanced training with group supervision, optional case review and two small-group supervision sessions, leading to certification as a CALM therapist; and train-the-trainer for certified therapists [source: GIPPEC CALM training programme page].
Example language (illustrative): "What has it been like talking to your oncologist about what lies ahead?" / "You've gone from being the one who looked after everyone to being looked after. How is that for you and for him?" / "Some people find they think about dying and also make plans for next summer. Is that true for you?"
Watch for: sessions that turn into only symptom talk (link back to how it affects the person and their relationships). The trial raters noted that offering interpretations was the skill with most room for improvement, so practise this in supervision [source: Rodin et al. 2018]. Working as intended: depressive symptoms fall, and the person can talk more openly with the team and family about the future.

B8. Supporting information-sharing, informed consent and shared decision-making

Purpose: to help the person take part in decisions about their care at the level they choose. NICE asks services to find out what information people want, communicate in their preferred way, and review needs as circumstances change [source: NICE NG142 1.4.3]. The CALM domain on communication with healthcare providers covers similar ground [source: Rodin et al. 2018].
Steps [synthesis]:
1. Ask how much the person wants to know, and who should be present for key conversations.
2. Help them list questions for the doctor, including what each option would mean for the things they value.
3. Explore ambivalence about treatment choices without advising. Reflect both sides and link them to values.
4. Encourage them to raise every medical question, including about medicines, with the prescriber or team, and offer to support them in that meeting.
5. After significant news, check what they took in and how they feel, and pass any misunderstanding to the team.
Example language (illustrative): "Some people want every detail, some want the headlines, some want the doctor to talk mostly to family. What suits you?" / "I can't tell you which treatment to choose; that's for you and Dr X. I can help you work out what matters most to you in that choice."
Watch for: the therapist being drawn into giving medical opinions (decline and redirect). Watch for family pressure on decisions, and for capacity concerns (refer for formal assessment). Working as intended: the person goes into medical conversations prepared and leaves them clearer.

B9. Advance care planning conversations

Purpose: to help the person think through and record their wishes, values and preferences for future care while they have capacity. NICE asks services to offer advance care planning to adults approaching the end of life, including under-served groups; to involve carers if the person agrees; to make sure the person has a copy of the plan; and, where capacity is lost, to consider carers' views within the Mental Capacity Act 2005 (England and Wales) [source: NICE NG142 1.6.1–1.6.4]. NICE points to its decision-making and capacity guidance for detail [source: NICE NG142 1.6.5].
Steps [synthesis]:
1. Agree with the team who leads the formal plan (often a doctor or nurse). The therapist's role is to prepare and support the person for the conversation and help them process it.
2. Explore values first: what a good day looks like, what they fear most, what they would trade for more time and what they would not, and where they would prefer to be cared for and to die.
3. Explore who should speak for them if they cannot, and whether that person knows their wishes.
4. Help them rehearse telling family.
5. Pass the values and preferences to the clinician who records the plan, and know the local legal forms (in England and Wales, for example, an advance decision to refuse treatment and lasting power of attorney under the Mental Capacity Act). Never complete legal documents yourself.
6. Revisit when the illness or the person's wishes change.
Example language (illustrative): "If things got harder and you couldn't speak for yourself, what would you want the people caring for you to know about you?" / "Who would you trust to speak for you, and have you told them what you've told me?"
Watch for: the person or family not being ready (offer later, record the offer). Watch for cultural or religious norms about planning or discussing death (ask, don't assume). Watch for conflict between the person's and family's wishes (B11). Working as intended: the plan reflects the person's values, the family knows it, and the person says they feel relieved or settled.

B10. Responding to a wish to hasten death, suicidal thoughts and crisis planning

Purpose: to assess and respond to suicidal thoughts and a wish for death to come sooner. These are common and often change over time, and the meaning-centred trials targeted "desire for hastened death" as an outcome [source: ASCO Post on Breitbart et al. 2015]. Steps follow current standard risk-assessment practice [synthesis].
Steps [synthesis]:
1. Ask directly and without judgement. Separate a passive wish for death, a wish for death to come sooner, a request about assisted dying (B12), and active suicidal thoughts or plans.
2. Explore what drives it: uncontrolled symptoms, fear of what dying will be like, feeling a burden, loss of dignity or control, depression, hopelessness, or family conflict.
3. Assess risk in the usual way (intent, plans, access, past attempts, protective factors). Remember that people in palliative care may have medicines at home: lethal-means counselling here means agreeing safe storage and supervision of supplies with the nursing team and family, never discussing amounts or methods.
4. Tell the medical team the same day about any active suicidal thinking, and about any wish for hastened death linked to symptoms, so the drivers can be reviewed.
5. Write a safety plan with the person and, with consent, the family: warning signs, coping steps, people to contact, the 24-hour palliative and crisis numbers, and safe storage.
6. Address the drivers through B3–B7 and team action. Reassess at every contact.
Example language (illustrative): "When you say you've had enough, can you tell me more? Some people mean they're tired of the struggle, some are thinking of ending their life. Where are you?" / "I'll let Dr X know the nights are unbearable. That's something the team can work on."
Watch for: sudden calm after despair, giving things away beyond expected legacy-making, hoarding of medicines (tell the team at once), and depression hidden behind "it's natural to feel this way". Working as intended: the wish lessens as the drivers are addressed, and the person and family know how to get help at any hour.

B11. Family work, carers and anticipatory grief

Purpose: to support carers and other important people, who are part of the unit of care. NICE asks services to identify carers, consider and review their practical and emotional support, and recognise that young carers' needs differ [source: NICE NG142 1.1.2, 1.3.1–1.3.2; WHO fact sheet]. CALM may include the caregiver in sessions [source: Rodin et al. 2018]. A separate manual exists for carers: Meaning-Centered Psychotherapy for Cancer Caregivers: Therapist Manual and Caregiver Workbook (Oxford University Press, 2024) [source: Oxford Academic book page]. In its pilot trial, MCP-C was a seven-session individual intervention using teaching, discussion and experiential exercises, running from concepts and sources of meaning and identity before and after becoming a caregiver, through historical, attitudinal, creative and experiential sources of meaning, to transitions [source: Applebaum et al. 2022].
Steps [synthesis]:
1. Map the family: who is involved, who cares, the children, and anyone estranged.
2. Offer carers their own space and point them to a statutory carer's assessment where one applies [source: NICE NG142 1.2.3].
3. Hold family meetings with the team when information or decisions need to be shared. Agree aims and who speaks beforehand.
4. Name anticipatory grief, grieving losses before the death, as normal. Help family members say what they need to say, and mark "lasts" (for example, a last holiday or a last birthday).
5. Support honest communication with children at their developmental level, and involve the child's school or a children's bereavement service where available.
6. Respond to requests to keep information from the patient ("don't tell her") by exploring the family's fear and values, while being clear that the patient's own information preferences guide the team (NICE 1.4.3).
7. Screen carers for exhaustion, depression and risk factors for difficult bereavement, and plan follow-up.
Example language (illustrative): "It's common to start grieving before someone dies. You're losing pieces of the life you had together already." / "I understand you want to protect your mum. Can we think together about what she might already sense, and what she's asked to know?"
Watch for: carer collapse, conflicts that block decisions, children kept away or left uninformed, and guilt about feeling relief. Working as intended: family members talk more openly, carers accept support, and goodbyes happen.

B12. Questions about assisted dying

Purpose: to respond professionally when a person or family raises assisted dying, euthanasia or a request to die. Legal frameworks vary by jurisdiction: in some places a form of assisted dying is lawful under specific conditions, and in others it is a crime to assist [synthesis]. The therapist's role is to know the current law where they practise, and their profession's and employer's guidance, and to refer. This guide does not describe procedures or eligibility processes.
Steps [synthesis]:
1. Listen and explore what lies behind the question (as in B10). Exploring is not endorsing, and it is not a reason to close the conversation.
2. Do not give legal or procedural information yourself. Refer the person to the treating doctor, the service's designated lead, or the official information source for the jurisdiction.
3. Inform the team, following local policy and documentation requirements.
4. Know your own position, and any conscientious objection provisions that apply to you, and handle them openly, without abandoning the person.
5. Continue psychological support whatever the person decides, and support the family and staff afterwards.
Example language (illustrative): "I'm glad you felt you could ask me. I'd like to understand what's leading you to think about this. The legal side is something Dr X or the team lead can explain properly. I can help you think it through and stay alongside you."
Watch for: depression, coercion or feeling a burden underlying the request (tell the team), and your own feelings steering the conversation (take them to supervision). Working as intended: the person feels heard, the right professional handles the question, and therapy continues.

B13. Recognising when to request a medical or team review

Purpose: to make sure physical, cognitive and medication-related problems reach the clinicians responsible. The therapist does not assess or advise on medicines or symptoms [synthesis built on the team model: NICE NG142 1.9].
Steps [synthesis]:
1. Contact the team the same day if you notice: new or fluctuating confusion, agitation or hallucinations; uncontrolled pain, breathlessness or other symptoms; marked drowsiness or sudden change in condition; distress the person links to a medicine or treatment; signs that the person is not managing at home; suicidal thinking.
2. Report what you observed, not a diagnosis.
3. If the person wants to stop or change any treatment, encourage them to talk with their doctor, and tell the team with consent.
Example language (illustrative): "You seem more muddled today than last week. I'd like to ask the nurse to see you today; changes like this can have causes they can treat."
Watch for: reluctance to "bother" staff (the person's and your own). Working as intended: problems are picked up early and crises are avoided.

B14. Presence in the last days of life

Purpose: to support the dying person and family when structured therapy is no longer possible. Clinical care in the last days is covered by NICE NG31 [source: NICE NG142 scope].
Steps [synthesis]: shorter visits that follow the nursing team's lead; sitting with the person; supporting family to talk to, touch and say goodbye to the person even if they seem unresponsive; asking nursing staff to explain to the family the changes they may see; attending to cultural and religious rites (with chaplaincy); and offering staff a brief debrief afterwards.
Example language (illustrative): "You don't need to find the perfect words. Telling her what she means to you is enough."
Watch for: family exhaustion, conflict at the bedside, and wishes from the advance care plan not being known to the people present. Working as intended: family feel accompanied and the person's wishes are honoured.

B15. Bereavement support

Purpose: palliative care includes bereavement counselling [source: WHO fact sheet]. The steps follow common grief-support practice [synthesis].
Steps [synthesis]:
1. Make contact after the death in the way the service has agreed (for example, a letter, a call, or an invitation to a remembrance event).
2. Screen for risk: a sudden or traumatic death, prior mental health problems, a dependent or conflicted relationship, little support, multiple losses, young children, and carers who were exhausted beforehand.
3. Offer graded support: information and peer or volunteer support for most people, counselling for some, and referral to specialist grief therapy or mental health services when grief stays intense and impairing well beyond what culture and context lead you to expect, or when there is suicidal risk.
4. Use the generativity document or Legacy Project, if one exists, as a resource the bereaved can return to.
5. Close the episode clearly and explain how to re-contact the service.
Example language (illustrative): "There's no right way to grieve. I'd like to check in over the coming months and see how you're doing." / "You've said the nights in the hospice keep replaying. Shall we look at that together?"
Watch for: traumatic memories of the death, guilt about decisions taken, a role vacuum for former carers, and suicidal thoughts. Working as intended: the person gradually re-engages with life while keeping a bond with the person who died.

B16. Staff self-care and team support

Purpose: to sustain the team (including the therapist) through repeated exposure to dying and grief. NG142 addresses staff training for sensitive assessment but does not address staff wellbeing [source: NICE NG142 1.2.2]. The steps are [synthesis].
Steps [synthesis]:
1. Personal: regular clinical supervision; noticing your own grief, overidentification or numbness; limits on caseload and on contact outside working hours; rituals to mark the deaths of patients.
2. Team: regular reflective-practice groups (for example, Schwartz Rounds where available); brief structured debriefs after distressing deaths; remembrance events for staff.
3. Organisation: encourage access to occupational health and staff counselling, and raise workload concerns.
Example language (illustrative, facilitating a debrief): "Let's take fifteen minutes. What happened, what was hardest, and what does each of us need now?"
Watch for: cynicism, avoiding certain patients, sleep problems, intrusive images, and increased sick leave. Working as intended: staff can name their reactions, ask for help, and stay engaged.

B17. Ending therapy with a dying person

Purpose: to plan for endings that may be abrupt (through death or decline) [synthesis].
Steps [synthesis]: discuss early how the work might end; at each session, close as though it might be the last; agree whether you will visit if the person is admitted, and whether family will tell you of the death; have a short final review when possible (as in IMCP session 7, Transitions [source: NCT01323309 protocol]); write a brief handover note for the team.
Example language (illustrative): "We don't know how long we'll have. If there's something you'd want to make sure we've said, let's not leave it to the end."
Watch for: the therapist's own avoidance of endings. Working as intended: neither person is left with things unsaid.

5. Handling problems

The published protocols say little about handling problems. Except where a source is cited, the guidance below is [synthesis].

Deteriorating health interrupts a structured programme. CALM varies the number of sessions and the time spent on each domain with health status [source: Rodin et al. 2018]. IMCP allows up to 14 weeks for seven sessions [source: NCT01323309 protocol]. Shorten sessions, meet at the bedside or by phone or video if the person wishes, drop homework, and move to dignity therapy or presence-based work when energy is very limited.
The person dies before a dignity therapy document is finished. Agree at the start whether a draft may be given to the named recipient. Prioritise the most important messages in the first recorded session.
Cognitive decline or delirium mid-intervention. Stop structured work and request medical review (B13). Dignity therapy is not used with delirium or significant cognitive impairment [source: Chochinov et al. 2011 via Focus]. If capacity returns, resume briefly. If not, shift support to the family.
"Stuck" or circular despair. Check total pain first: are symptoms controlled, is depression being missed, is there a spiritual need for chaplaincy? Then move to concrete meaning sources (experiential and creative moments today), or narrow the focus to one achievable task such as a letter or a conversation.
Avoidance, denial or "I don't want to talk about dying". Treat it as coping, not resistance. Respect the person's information preferences (NICE 1.4.3), work on present-focused goals, and leave the door open. Raise safety-relevant planning (for example, who decides if they can't) gently and record that it was offered.
Overwhelm in session. Slow down, ground the person in the present (breathing at their own pace, the room, a familiar object), and close the topic with a plan to return to it. With breathlessness or panic, tell the nursing team so the physical side is addressed.
Non-attendance. Find out whether it reflects illness, fatigue, transport, or emotional avoidance. Offer home, ward or remote sessions. Fewer than three CALM sessions was counted as not completing that intervention [source: Rodin et al. 2018], so name the minimum together if you are using it.
Rupture: anger at the therapist or team. Anger is often grief or loss of control. Acknowledge it, avoid defending the team, separate what you can change from what you can't, and pass on concrete complaints through the proper route. Repair by naming what happened in the next session.
Family asks to withhold the diagnosis or prognosis. Explore the fear, cultural values and the patient's own wishes. Explain that the team follows the patient's information preferences. Offer a family meeting with the doctor.
Family conflict over the advance care plan or place of death. Hold a facilitated family meeting with the team, keep the patient's voice central, and note that in England and Wales the Mental Capacity Act framework applies if capacity is lost [source: NICE NG142 1.6.4].
A hurtful message in a legacy document. Explore the intent and likely impact, and offer alternatives (a private letter, rewording). The person decides, and you document the discussion.
A request for help to die. Explore, follow B12, know the local law, refer, and continue support. Never give procedural information.
Spiritual or religious distress outside your competence. Refer to chaplaincy or a faith leader of the person's choice and keep working on the psychological side.
Cultural and language differences. Use professional interpreters (not family) for key conversations. Ask about beliefs around death, disclosure, decision-making and rituals.
Children and young carers. Their needs differ from adults' [source: NICE NG142 1.3.2]. Involve specialist children's services and schools.
Group (MCGP) problems: a member dies or deteriorates. Tell the group as agreed at the start, mark the loss in session, and offer individual follow-up to members who are affected strongly.
The therapist's own distress, overidentification or wish to rescue. Bring it to supervision promptly. Keep a sustainable caseload. Notice boundary drift, such as extra visits or personal contact numbers, and decide on funeral attendance by team policy and reflection, not impulse.
Team tension about psychological care. Use the shared formulation (B2), attend MDT meetings, and make clear, specific requests.

Sources

Pages consulted:

Publications cited:

World Health Organization. Palliative care, fact sheet (online, current version).
National Institute for Health and Care Excellence. End of life care for adults: service delivery (NG142).
National Institute for Health and Care Excellence. Care of dying adults in the last days of life (NG31) [referenced by NG142; content not summarised here, uncertain].
Chochinov HM, Kristjanson LJ, Breitbart W, McClement S, Hack TF, Hassard T, Harlos M (2011). Effect of dignity therapy on distress and end-of-life experience in terminally ill patients: a randomised controlled trial. Lancet Oncology, 12(8), 753–762. DOI 10.1016/S1470-2045(11)70153-X.
Dose AM, Rhudy LM (2017). Perspectives of newly diagnosed advanced cancer patients receiving Dignity Therapy during cancer treatment. Supportive Care in Cancer, 26(1), 187–195.
Breitbart W, Rosenfeld B, Pessin H, et al. (2015). Meaning-centered group psychotherapy: an effective intervention for improving psychological well-being in patients with advanced cancer. Journal of Clinical Oncology, 33, 749–754.
Individual Meaning-Centered Psychotherapy for Patients with Advanced Cancer: A Treatment Manual (2014). Oxford University Press. ISBN 9780199380688 (Oxford Academic credits Poppito S; usually cited as Breitbart & Poppito [uncertain]).
Breitbart WS, Poppito SR (eds) (2014). Meaning-Centered Group Psychotherapy for Patients with Advanced Cancer: A Treatment Manual. Oxford University Press. ISBN 978-0-19-983725-0 (per MSKCC publication record).
Meaning-Centered Psychotherapy for Cancer Caregivers: Therapist Manual and Caregiver Workbook (2024). Oxford University Press (Oxford Academic credits Breitbart W).
Applebaum AJ, Baser RE, Roberts KE, Lynch K, Gebert R, Breitbart WS, Diamond EL (2022). Meaning-Centered Psychotherapy for Cancer Caregivers: a pilot trial among caregivers of patients with glioblastoma multiforme. Translational Behavioral Medicine, 12(8), 841–852.
Rodin G, Lo C, Rydall A, Shnall J, Malfitano C, Chiu A, Panday T, Watt S, An E, Nissim R, Li M, Zimmermann C, Hales S (2018). Managing Cancer and Living Meaningfully (CALM): a randomized controlled trial of a psychological intervention for patients with advanced cancer. Journal of Clinical Oncology, 36(23), 2422–2432.
Frankl VE. Man's Search for Meaning (assigned reading in IMCP per the MSKCC protocol; edition not specified).
Saunders C (2005). Watch with Me: Inspiration for a life in hospice care. Observatory Publications [as cited by Living with Dying, Leeds].

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