Recognising the dying phase and illness trajectories

At a glance

• Most deaths in Australia are expected, and about half happen in hospital (AIHW, 2014-15 data). Recognising that someone is dying is the trigger for everything else in end-of-life care.
• Two time frames matter: the last year or so (identify, plan ahead, involve palliative care) and the last days (change the goals of care to comfort).
• Illness with a recognisable decline follows one of three trajectories (Murray 2005, building on Lunney 2003), and each needs a different planning approach.
• Doctors overestimate survival, often by a large margin. Uncertainty is a reason to plan, not to delay.
• The National Consensus Statement (2nd edition, 2023) from the Australian Commission sets the standard: recognise, communicate, plan, provide comfort care and support families, including into bereavement.

Illness trajectories

Trajectory	Typical diseases	Pattern	Planning implication
Short period of evident decline	Cancer	Function maintained until a steep fall over the last few months	Decline is recognisable; involve palliative care early: in Temel 2010, early palliative care in metastatic lung cancer improved quality of life and mood
Long-term limitation with intermittent exacerbations	Heart failure, COPD, end-stage kidney and liver disease	Gradual decline with acute episodes; any one may be fatal, and sudden death is possible	Prognosis uncertain until late. Plan alongside active treatment, revisit after each admission
Prolonged dwindling	Frailty, dementia, multimorbidity	Low baseline function, slow decline over years	Death often follows a minor event (pneumonia, fracture). Advance care planning while the person can still take part

• Lunney (JAMA 2003) described four trajectories: these three plus sudden death (arrhythmia, stroke, trauma), which has no decline to recognise.
• Murray (BMJ 2005) added that social, psychological and spiritual wellbeing follow their own trajectories, and that psychological distress often peaks at diagnosis, at recurrence and in the terminal phase.

Identifying people in their last year of life

Triggers

• Surprise question: "Would I be surprised if this patient died in the next 12 months?" A "no" should prompt a needs assessment and advance care planning. In Downar's 2017 meta-analysis it had a sensitivity of 67%, specificity of 80% and a positive predictive value of only 37%, and it performed worse in non-cancer illness.
• SPICT (Supportive and Palliative Care Indicators Tool) combines general indicators with disease-specific ones:
  • General: urgent or unplanned hospital admissions (older versions said two or more in 6 months), poor or falling performance status, dependence on others for care, weight loss, persistent symptoms despite optimal treatment, the person or family asking for palliative care or to stop treatment.
  • Disease-specific: for example heart failure with breathlessness or chest pain at rest or on minimal effort, COPD with breathlessness at rest or on minimal effort between exacerbations, stage 4 or 5 CKD (eGFR under 30) with deteriorating health or stopping or not starting dialysis, decompensated cirrhosis, or dementia with inability to dress, walk or eat without help.

Measuring function and phase in Australia

• AKPS (Australia-modified Karnofsky Performance Status): 100 (normal) down to 10 (comatose or barely rousable). Used with the Palliative Performance Scale (PPS) for prognosis.
• PCOC phases (Palliative Care Outcomes Collaboration), assessed at each contact in Australian specialist palliative care:

Phase	Meaning
Stable	Symptoms controlled, plan working
Unstable	New problem or rapid escalation needing urgent change in plan
Deteriorating	Gradual worsening of function or symptoms over days to weeks
Terminal	Death likely within days
Bereavement	After death; support for family

Prognosis

• Christakis 2000: only 20% of doctors' estimates were accurate, 63% were overoptimistic, and survival was overestimated by a factor of 5.3. Longer doctor-patient relationships made estimates less accurate.
• Tools such as the Palliative Prognostic Index and PaP score improve on intuition in cancer but give probabilities, not dates.
• Talk about prognosis in ranges ("days to weeks", "weeks to months") and say what is uncertain.

Recognising the last days

Diagnosing dying is a clinical judgement, best made by the team rather than one person, and reviewed at least daily.

Signs

Earlier (sensitive, less specific)	Late (Hui 2014 and 2015: specific for death within 3 days)
Bed-bound, profound weakness (PPS 20% or less)	Pulselessness of the radial artery
Drowsy or reduced conscious level for more of the day	Respiration with mandibular movement
Little or no food or fluid, difficulty swallowing liquids and tablets	Decreased urine output
Loss of interest, withdrawal	Cheyne-Stokes breathing and apnoeas
New delirium	Death rattle (see Tracheobronchial secretions in the dying patient)
	Non-reactive pupils, inability to close the eyelids, drooping nasolabial folds, neck hyperextension

• Late signs have high specificity but appear in a minority, and only in the final hours to days. Their absence doesn't mean death is far off.
• Peripheral mottling and cool peripheries are common in the last hours.

Rule out reversible deterioration first

Before calling it dying, ask whether something treatable fits the picture and whether treating it fits the patient's goals:

• Opioid toxicity (renal impairment, recent dose increase).
• Hypercalcaemia (see Hypercalcaemia of malignancy).
• Sepsis, especially neutropenic sepsis after chemotherapy.
• Hypoglycaemia, hyponatraemia, AKI or dehydration.
• Other drugs: benzodiazepines, anticholinergics, steroid withdrawal.
• Raised intracranial pressure or seizures.

Pitfall: labelling a drowsy patient with renal failure on morphine as "dying" when they have opioid toxicity that would respond to a switch.

Once dying is recognised

Communicate

• Tell the patient (if able) and those important to them that the person is likely to be dying, what that may look like, and what is uncertain.
• Find out wishes: preferred place of death, who should be present, cultural and religious practices, organ and tissue donation where relevant.
• Check for an advance care directive and the substitute decision-maker under state or territory law.
• Document a clear resuscitation plan (not for CPR) and the goals of care.

Review treatment

• Stop drugs without a comfort benefit: statins, antihypertensives, most oral hypoglycaemics, bisphosphonates, vitamins, and usually anticoagulants.
• Diabetes: stop oral agents. In type 1 diabetes keep a small dose of basal insulin to prevent ketoacidosis and check glucose only if symptoms suggest it.
• Corticosteroids for cerebral metastases: stopping abruptly may cause headache or seizures; continue SC if the patient can't swallow, or plan for symptoms.
• ICDs: deactivate shock therapy to avoid painful shocks at death. Pacing function can stay on.
• Stop routine observations, blood tests and imaging. Assess comfort instead: pain, breathlessness, agitation, mouth, skin, bladder and bowels.

Anticipatory medicines

Prescribe SC "just in case" doses for the five common symptoms, so a nurse can give them without delay:

Symptom	Typical drug class
Pain or breathlessness	Opioid (morphine; in renal impairment fentanyl preferred, or hydromorphone at reduced dose with care)
Agitation or distress	Benzodiazepine (midazolam), with haloperidol for delirium
Nausea	Antiemetic (haloperidol, metoclopramide)
Respiratory secretions	Antimuscarinic (hyoscine butylbromide)

• Doses and the move to a continuous subcutaneous infusion are covered in the symptom notes: Pain, Dyspnoea, Nausea and vomiting, Terminal delirium.

Food and fluids

• Support eating and drinking for as long as the person wants and can swallow safely. Offer mouth care for thirst.
• Clinically assisted hydration is an individual decision (NICE NG31): consider a trial if the patient is thirsty or the family asks, and review daily. Bruera 2013 found 1 L/day of parenteral fluid no better than placebo for symptoms, delirium or survival in advanced cancer.
• Too much fluid worsens secretions, oedema and breathlessness.

Support families and bereavement

• Families need to know what to expect: changing breathing, mottling, reduced consciousness, and that not eating is part of dying rather than its cause.
• The 2023 Consensus Statement extended expectations to bereavement support for families and carers, and to aged care and community settings.

How it's tested

• An older person with heart failure and a fourth admission in 6 months: is it time to raise palliative care? (Yes, while continuing active treatment.)
• A family asking for IV fluids because "she's starving to death".
• A drowsy patient with a reversible cause mistaken for dying.
• Which signs predict death within days, and which tools identify the last year of life.

Special populations

• Aboriginal and Torres Strait Islander people: decisions are often made by family and community, not the individual alone. Ask who should be involved, offer an Aboriginal health worker or liaison officer, and support a wish to die on Country, which may need early transfer planning in rural and remote areas. Sorry business and practices after death vary between communities.
• Culturally and linguistically diverse families: use professional interpreters rather than relatives for prognostic conversations.
• Dementia and frailty: the trajectory is long and recognition is hard; recurrent pneumonia, eating problems and weight loss in advanced dementia signal the last months.
• Residential aged care: most residents die within a few years of admission. Plan ahead to avoid futile transfers to hospital in the last days.
• Voluntary assisted dying is lawful in every state and the ACT under separate legislation. It is distinct from palliative care and from palliative sedation, and is covered in the medicolegal notes.

Pitfalls

• Waiting for certainty before talking about dying, so the conversation happens too late or not at all.
• Relying on your own estimate of survival without allowing for optimism bias.
• Treating the surprise question as a prognosis rather than a prompt for a needs assessment.
• Missing reversible causes of deterioration, or chasing them in someone whose goals are comfort.
• Applying an end-of-life pathway as a checklist without daily review. That was the failure of the Liverpool Care Pathway.
• Continuing parenteral fluids, observations and blood tests by default.
• Forgetting to deactivate an ICD or to keep basal insulin in type 1 diabetes.