Overview
This lecture covers the shift from anti-cancer treatment to palliative and end-of-life care. It defines the key terms (curable, incurable, palliative, terminal), sets out the different illness trajectories seen in metastatic cancer, and covers communication skills for breaking bad news and discussing prognosis. It introduces the psychological stages patients move through, works through a real case (Mr PW), then covers hospice, goals-of-care conversations, the evidence for early palliative care referral, recognising that a patient is dying, and how to balance hope with honesty when defining a “good death”.
Definitions
- Curable: there is a chance of eradicating the cancer; the patient lives a normal lifespan after treatment.
- Incurable: the cancer/disease cannot be eradicated, but life expectancy still varies enormously even within “incurable” (e.g. metastatic prostate or breast cancer can mean years of life; metastatic pancreatic cancer can mean months).
- Palliative: can refer to any time within the incurable phase.
- Terminal: short life expectancy.
- Palliate: from Latin, “to cloak”. The goal of palliative treatments is to cover up symptoms of a disease that cannot be cured, balancing the benefits and burdens of treatments such as palliative chemotherapy or palliative radiation. Palliative treatments can themselves be aggressive and intensive.
- Palliative care is part of everyone’s job, not the sole domain of hospices. [!important] Palliative Medicine is the clinical field; hospice is one way it is provided, not the only way.
- Palliative care is about more than cancer.
Prognosis and illness trajectories
Median survival of the top 5 metastatic (incurable) cancers, by subtype/treatment:
- Breast, ER+: 53 months
- Breast, HER2+: 56 months
- Colorectal: 30-36 months
- Lung, EGFR mutation: 38 months
- Lung, immunotherapy (PDL1 >50%): 26 months
- Melanoma, immunotherapy: 32 months
- Melanoma, BRAF mutation: 24 months
- Prostate, endocrine sensitive: >60 months
Three illness-trajectory patterns (Geijteman et al., BMJ 2024) describe how function changes over time in metastatic disease:
- Traditional disease trajectory: gradual deterioration in function, then a short period of evident decline ending in death (e.g. metastatic pancreatic cancer). The gradual-decline phase is “palliative”; the terminal steep-drop segment near death is “end of life”.
- Major temporary improvement: patients who respond well to targeted therapy (e.g. lung cancer with an EGFR mutation treated with tablets) can have their function improve for weeks to years before a final deterioration.
- Long-term ongoing response: patients who respond well to immunotherapy (e.g. melanoma) can plateau at a moderate function level indefinitely, with only minor fluctuation, rather than following the traditional decline.
Communication in incurable disease
Common communication mistakes:
- Having significant discussions when the patient is alone, post-operative (still affected by anaesthetic), on strong analgesics, or in a shared multi-bed room (“behind the curtain”).
- Using medical language or euphemisms (“a growth”, “a lesion”, “a tumour”) instead of saying “cancer”.
- Being in a hurry.
- Avoiding the issue.
- Failing to balance being clear against overdoing it.
Communication approach:
- Clarify the agenda: “I wonder if this is a good time to talk about how things are going.”
- Listen and enquire: “What do you understand about what is going on?”
- Show the evidence: a picture is worth 1000 words.
- Show empathy: “That must be quite hard.”
- Agree a strategy: “What is the next step” and schedule follow-up.
- Avoid debating, defending, persuading, or arguing.
The SPIKES Protocol for breaking bad news: Setting, Perception, Invitation, Knowledge, Emotion, Strategy and Summary.
Information about prognosis:
- Be clear about the aims of treatment (curable vs incurable), presenting evidence clearly; pictures may help.
- This information may need to be revisited frequently, since patients (and different whānau members) vary in how much information they need and how fast they can absorb it.
- It is hard to give a bad prognosis, and hard for patients to hear it.
Prognostication
- Describe the physical changes seen.
- Acknowledge uncertainty using broad time bands rather than exact figures: hours to days, days to weeks, weeks to months, months to years.
- Don’t play God, despite the pressure to be precise. A Kaplan-Meier survival curve example (two near-identical chemotherapy regimens, FOLFIRI/FOLFOX6, P=.99) illustrates that predicting an individual’s survival time becomes progressively more uncertain the further out the prediction.
Why prognosis understanding matters: knowing their prognosis lets patients make decisions about what is important to them, undertake significant tasks, and make treatment decisions in line with their values. A patient’s perception of their own prognosis affects their medical decisions.
Psychological response to incurable illness: Kübler-Ross Grief Cycle
Five stages, in sequence:
- Denial – avoidance, confusion, excitement, shock/fear.
- Anger – frustration, irritability, anxiety.
- Bargaining – struggle to find meaning, to help others.
- Depression – helplessness, hostility, avoidance.
- Acceptance – exploring opportunities, introducing new plans, moving forward.
The slide also shows two "pendulum" diagrams contrasting patients whose expressed hopes are less likely versus more likely to be realised, but the caption explaining this figure was cut off in the source and could not be fully transcribed.
Case: Mr PW
- 80-year-old man from Oamaru, ex-smoker, previously well.
- Jan 2024: presents to GP with weight loss and chest pain; CXR done; referred to respiratory for CT and biopsy.
- CT: 115 mm mass invading mediastinum and chest wall. Biopsy: squamous cell lung cancer, PDL1 = 70%.
- Referred to oncology: cancer inoperable and incurable. Told immunotherapy has a 50-60% chance of shrinking the cancer; average survival around 18 months but ranging from short months to several years, with 30% alive at 5 years.
- March 2024: commences pembrolizumab immunotherapy. Comorbidities: gout, prostatism, hearing aids. Married, lives with well wife; daughter in Auckland.
- Dec 2024: routine scan; referred to hospice. Described as psychosocially complex and reluctant to discuss how he is coping; initial hospice meeting focused on establishing a relationship. A golfer and sportsman, described as very private; showed distress at a public function when his weight loss was raised.
- June 2025: increasing fatigue and shoulder pain; trialled steroids (dexamethasone) and started regular morphine. Reluctant to accept help (grew up believing asking for help is “a sign of weakness”). Clinician noted: “I suspect there will have to be a crisis to accept help.” Given a 24-hour phone number.
- June 2025: accepted showering help, daughter visits, considered transfer to local rest home.
- Died peacefully June 2025, at home until the last 3 days of life when he became unconscious and family were unable to manage; whānau, including North Islanders, were with him when he died.
Hospice and whole-person care
Introducing hospice to a patient:
- Do so in the context of worsening disease/symptoms; acknowledge the patient’s increasing needs.
- Discuss ways support can be increased, including hospice.
- Explain hospice’s role in broad terms (specialist symptom team, broad support); address the misconception directly - hospice is “not just a place where people go to die”.
- Confirm ongoing support, e.g. the next appointment, since people like to have a plan.
Hospice in New Zealand:
- The patient and whānau are the unit of care.
- Timing: typically the last year of life.
- Hospice provides Specialist Palliative Care; GPs and rest homes manage many patients whose course is uncomplicated.
- Philosophy of whole-person care: not all symptoms are physical. Domains covered: physical (disease, treatments), social (isolation/disenfranchisement/estrangement), spiritual (protective silence/moral burden/“why me?”), psychological (fear/anxiety/guilt).
- Te Whare Tapa Whā (Durie, 1994): a house model of wellbeing (hauora) with four walls - Taha Wairua (spiritual wellbeing), Taha Hinengaro (mental and emotional wellbeing), Taha Tinana (physical wellbeing), Taha Whānau (family and social wellbeing) - resting on Whenua (land, roots).
Establishing goals of care
Factors to weigh: the patient’s own goals, their prognosis, and their treatment options/choices.
- Hospitals are structured to be good at “saving” people, so goals-of-care conversations need to explicitly address ceiling of care and resuscitation status.
- Cultural variations and inequities must be considered, since a clinician’s own values may not match the patient’s values.
Evidence for early palliative care: the Temel study
Landmark article: Temel, New England Journal of Medicine, 2010. Patients with metastatic lung cancer were randomised to either immediate referral to a palliative care team or standard care alone. Patients who received early palliative care had:
- Better quality of life.
- Better mood.
- Less aggressive/toxic treatment at end of life.
- Better survival, by 2 months.
Reasons early palliative care referral can help:
- Establishes rapport and trust before a crisis.
- Allows early anticipatory education.
- A crisis is not the time to think deeply about big decisions.
- Eases transitions - it represents concurrent care, not abandonment.
- Gives patients and families tools (a “toolbox”), especially for symptom management.
Recognising dying
Clinician-side recognition happens in stages:
- Acknowledgement of non-curable illness.
- Recognition of the last year of life.
- Recognition of the last days to weeks of life.
Signs that time is short: increasing symptoms, weight loss, deteriorating performance status, reduced ability to do activities of daily living (ADLs). Imaging and test results are helpful but not definitive if the patient is declining in other ways.
Balancing hope, honesty, and a good death
Two balances underpin decision-making: communication balances hope against honesty; interventions balance benefit against burden. Getting both balances right lets people make the best choices for themselves.
Features of a “good death” as posed to the class: comfortable, in a place of choice, with significant people present, no suffering, symptoms all controlled, family all prepared, no shocks or crises.
Self-test
- Define curable, incurable, palliative, and terminal, and explain how they relate to one another.
- What is the literal meaning of “palliate”, and what is the goal of a palliative treatment?
- Describe the three illness trajectory patterns seen in metastatic cancer and give an example cancer/treatment for each.
- List four common mistakes to avoid when communicating about incurable disease.
- Describe the steps of the SPIKES protocol for breaking bad news.
- Why should prognosis be given as a time band (e.g. “weeks to months”) rather than an exact figure?
- Explain why it matters for patients to understand their own prognosis.
- Describe the five stages of the Kübler-Ross grief cycle in order.
- A patient tells you it is “a sign of weakness” to ask for help and is reluctant to accept increased support despite worsening fatigue and pain. What approach does the case of Mr PW suggest a clinician might anticipate?
- What are the four domains covered by whole-person palliative care philosophy, and what does Te Whare Tapa Whā call them?
- What two factors should a goals-of-care conversation explicitly address, given that hospitals are structured to “save” people?
- Describe the design and key findings of the Temel (NEJM 2010) study on early palliative care referral in metastatic lung cancer.
- List two reasons why early palliative care referral can be beneficial, beyond the survival benefit shown by Temel.
- What are the three stages of clinician recognition that a patient is dying, and what four physical signs suggest time is short?
- Name the two balances described as underpinning good communication and intervention decisions in incurable illness.
Answers
Reveal answers
- Curable means there is a chance of eradicating the cancer and the patient lives a normal lifespan afterward. Incurable means the cancer cannot be eradicated, but life expectancy still varies enormously (from months to years). Palliative can refer to any point within the incurable phase. Terminal specifically means a short life expectancy, i.e. it is a subset/late part of the incurable/palliative phase.
- “Palliate” comes from the Latin for “to cloak”. The goal of a palliative treatment is to cover up symptoms of a disease that cannot be cured, balancing the benefits and burdens of the treatment (e.g. palliative chemotherapy or radiation).
- (1) Traditional trajectory: gradual decline then a short steep drop to death, e.g. metastatic pancreatic cancer. (2) Major temporary improvement: function improves for weeks to years after a good response to targeted therapy before final deterioration, e.g. lung cancer with EGFR mutation treated with tablets. (3) Long-term ongoing response: function plateaus at a moderate level indefinitely after a good response to immunotherapy, e.g. melanoma.
- Any four of: having significant discussions when the patient is alone, post-operative, on strong analgesics, or in a shared room; using euphemisms instead of saying “cancer”; being in a hurry; avoiding the issue; not balancing clarity against overdoing it.
- Setting, Perception, Invitation, Knowledge, Emotion, Strategy and Summary.
- Because predicting an individual patient’s survival time becomes progressively more uncertain, so a broad time band acknowledges that uncertainty rather than giving a falsely precise figure (“don’t play God”).
- Understanding their prognosis lets patients make decisions about what matters to them, undertake significant tasks, and make treatment decisions in line with their own values; their perception of prognosis directly affects their medical decision-making.
- Denial, Anger, Bargaining, Depression, Acceptance.
- The case suggests a clinician might anticipate that a crisis will be needed before the patient accepts help (“I suspect there will have to be a crisis to accept help”), and should ensure support structures (e.g. a 24-hour phone number) are in place in advance so help can be mobilised quickly when that crisis occurs.
- Physical, social, spiritual, and psychological. Te Whare Tapa Whā calls these Taha Tinana (physical), Taha Whānau (family/social), Taha Wairua (spiritual), and Taha Hinengaro (mental/emotional), all resting on Whenua (land/roots) and supporting Hauora (wellbeing).
- Ceiling of care and resuscitation status.
- Patients with metastatic lung cancer were randomised to immediate referral to a palliative care team versus standard care alone. Early palliative care was associated with better quality of life, better mood, less aggressive/toxic treatment at end of life, and better survival, by 2 months.
- Any two of: establishes rapport and trust early; allows early anticipatory education; avoids having to make big decisions during a crisis; eases transitions as concurrent care rather than abandonment; gives patients and families symptom-management tools in advance.
- Recognition stages: acknowledgement of non-curable illness, recognition of the last year of life, recognition of the last days to weeks of life. Signs time is short: increasing symptoms, weight loss, deteriorating performance status, reduced ability to perform activities of daily living.
- Communication balances hope against honesty; interventions balance benefit against burden.