🕊 Palliative Care & End of Life

A guide for Australian nursing students — PCOC phases, advance care planning, palliative medications, NIKI T34, VAD in SA, cultural considerations, and the nursing role in end of life care.

🇦🇺 Australia Year 2 & 3 Clinical Practice PCOC Framework
🎓 Educational Resource Only: This page supports nursing student learning and reference. Clinical decisions must always be guided by your institution's policies, clinical supervisors, and the patient's individual goals of care. Processes may vary between health services.
🧡 Content Notice — Sensitive Topic

This page covers death, dying, and end of life care — topics that can bring up strong emotions, grief, or personal experiences. It is completely normal to feel affected by this content.

🌏 Cultural awareness: Attitudes to death, dying, and discussing terminal illness vary greatly across cultures and communities. What feels open and informative in one cultural context may feel disrespectful or distressing in another. Approach patients and families with curiosity, humility, and without assumptions.

💬 Please debrief. After engaging with this content — or after difficult clinical experiences — take time to check in with yourself. Talk to a peer, clinical supervisor, educator, or counsellor. You don't have to process this alone.

📞 Lifeline — 13 11 14 📞 Beyond Blue — 1300 22 4636 🌐 nmsupport.org.au 🎓 Your university counselling service 🏥 Employee Assistance Program (EAP)

🕊 What is Palliative Care?

"Maximise living, minimise suffering through comfort, care and choice for people facing a life-limiting illness."

— CAPCS (SA Palliative Care Service)

Physical Care
  • Pain & symptom management
  • Comfort-focused nursing
  • Medication optimisation
Psychological & Social
  • Emotional support — patient & family
  • Social work & counselling
  • Bereavement support
Spiritual & Cultural
  • Culturally sensitive care
  • Spiritual care chaplains
  • Respect for beliefs & values
💡 Palliative care is not just for the last days of life. It can begin at diagnosis of a life-limiting illness and continue alongside active treatment — often commenced up to 12 months before death.

⚖️ Palliative Care vs End of Life Care

🕊 Palliative Care
Specialist medical & nursing approach
For those with life-limiting illnesses focusing on symptom control
Can continue daily activities at home
Usually commenced up to 12 months prior to death
In hospital, community, hospice, or RACF
May include palliative chemo or radiotherapy
💔 End of Life Care (EOLC) / Comfort Care
Usually hospital, hospice or RACF-based
Entering last week(s) of life — managing symptoms only
No routine obs, no escalation of care
Sedatives and analgesia given as required
Comfort is priority — patient may be sedated
Also: Conservative Management | NFR | Ceiling of Care

🏥 Who Needs Palliative Care?

Life-Limiting Conditions
  • Cancer — especially metastatic or advanced stage
  • Neurodegenerative diseases — MND, MS, Huntington's, Parkinson's
  • End-stage organ failure — heart, lung, kidney
  • Advanced dementia or frailty
Symptom-Based Triggers for Referral
  • Uncontrolled pain & nausea / vomiting
  • Psychological, spiritual & family distress
  • Complex symptom management needs
  • Patient or family requesting a palliative approach

🔄 The 5 Phases of Palliative Care PCOC Framework

Phases are not sequential — patients can move back and forth between phases as their condition changes.

1
Stable
Symptoms adequately controlled. Developing & implementing the care plan.
2
Unstable
Urgent change in care plan required. New or worsening problem not previously anticipated.
3
Deteriorating
Gradual worsening. No urgent intervention. Increased care needs expected. Shifting to EOLC.
4
Terminal
Death likely within days. Focus on comfort, dignity & emotional/spiritual support.
5
Bereavement
Patient has died. Bereavement support provided to family & carers is documented.

Source: PCOC (Palliative Care Outcomes Collaboration) | AIHW 2025

📄 Advance Care Planning in Australia

💡 Key Principle: Encourage patients AND families to discuss and document wishes early. Often the patient wants something different from their family. Planning ahead ensures the patient's voice is heard, reduces family conflict, and facilitates death in the preferred place.
📝 Advance Care Directive (ACD) SA
SA-based legal document. Patients can document EOL care wishes, healthcare preferences, values and refusals (e.g. blood transfusion refusal for Jehovah's Witnesses). Only activated when a patient cannot make their own decisions.
👥 Power of Attorney / Guardianship
An appointed person who makes decisions when the patient lacks capacity. Power of Attorney covers financial decisions; Guardianship covers healthcare. Distinct from the healthcare-specific Advance Care Directive.
🚫 NFR & Ceiling of Care
NFR (Not For Resuscitation) — patient/family and medical team agree CPR will not be attempted. Must be clearly documented.

Ceiling of Care — the maximum agreed treatment level (e.g. ward care only; IV antibiotics but no ICU). Both must be documented and communicated to the whole care team.
📋 7-Step Pathway SA Health
A standardised SA Health process for developing and implementing a clinical care plan that documents treatment decisions relating to resuscitation and end-of-life care. Also consider organ and body donation — raise sensitively at the appropriate time.

👩‍⚕️ Nursing Role in Palliative & End of Life Care

This is one of the most important nursing roles — deeply human, family-centred, and largely nurse-driven.

🌿 Environment & Comfort
  • Ensure room is calm, private and tidy
  • Minimise unnecessary interventions
  • Consider whether routine obs are still appropriate
  • Advocate for a dignified environment
💊 Medication Management
  • Subcutaneous route preferred in EOLC
  • Administer PRN medications promptly
  • Monitor for side effects & symptom changes
  • Consult team early if symptoms uncontrolled
👪 Family Communication
  • Clear, compassionate communication at all times
  • Keep family informed at each step
  • Educate on mouth care and positioning
  • Explain what to expect as death approaches
🥤 Nutrition & Hydration
  • Food for taste & comfort — not nutrition targets
  • Mouth care is essential even without oral intake
  • MUST screening not required in terminal phase
  • Educate family: reduced intake is normal & expected
📊 Observations
  • Visual observations only when appropriate
  • Assess pain & sedation score regularly
  • Report changes to team promptly
  • Routine obs chart may be discontinued in EOLC
📋 Documentation
  • Document in the EMR contemporaneously
  • Record symptom assessments & responses
  • Document all family conversations & education
  • Record medication administration & response

💊 Common Medications in Palliative Care

⚠️ Opioids do NOT speed up death when used correctly. Types of pain in advanced illness: background (persistent, controlled by slow-release), breakthrough (unpredictable, PRN immediate-release), incidental (with activity). Remind patients: do not wait for severe pain — it becomes harder to control once established.
Medication Used For Common Route Nursing Notes
Morphine / Hydromorphone Pain & dyspnoea (breathlessness) SC, oral, patch Start low, titrate up. SC preferred in EOLC. Slow-release for background pain; immediate-release for breakthrough. Monitor sedation level.
Midazolam Anxiety, agitation, seizures, terminal restlessness SC (NIKI pump or PRN) Monitor respiratory rate. Common in end-stage agitation. Often combined with morphine in NIKI driver.
Hyoscine Butylbromide Excess secretions ('death rattle') SC Reduces respiratory secretions. Does not sedate. Reassure family — death rattle is normal and the patient is not distressed.
Metoclopramide / Haloperidol Nausea & vomiting; terminal agitation/delirium SC, oral Nausea is often temporary and treatable. Haloperidol also effective for terminal delirium and agitation.
Laxatives (e.g. Movicol) Prevention of opioid-induced constipation Oral Constipation is very common with opioids — prescribe laxatives prophylactically from the start. Do not wait for the patient to complain.

SC route is preferred in EOLC as swallowing often becomes difficult. Medications can be delivered via NIKI T34 syringe driver (continuous SC infusion) or as individual SC PRN injections.

⚙️ NIKI T34 Syringe Driver

Used for continuous subcutaneous delivery of medications to improve patient comfort and control symptoms (pain, nausea, secretions). Standard device for SC continuous infusion in palliative care in SA.

⚙️ Key Setup Points
  • 9V Duracell Alkaline battery
  • BD 10 mL syringe (dilute to 10 mL) or BD 30 mL (dilute to 23 mL)
  • Extension tubing + anti-siphon valve required
  • Default: 24-hour delivery duration
  • Set in Palliative Care Mode (occlusion 540 mmHg, max rate 5 mL/hr)
  • Must be kept in a LOCKED BOX at all times when loaded
🔔 Alarms to Know
  • Syringe occluded or displaced
  • Pump paused too long
  • Infusion 15 minutes from finishing
  • Infusion complete
  • Battery low (15-min warning) or depleted
  • Technical fault → escalate to clinical team immediately

✓ Shift Change + 4-Hourly Monitoring Checks

✓Medication — matches the medication chart exactly
✓Pump delivering — display screen active and counting
✓Infusion rate — verify rate is correct for the 24-hour volume
✓SC cannula site — check for redness, swelling, leakage
✓Pain score — assess and document response
✓Sedation score — assess and document level of consciousness

📚 Complete NIKI T34 training via your institution's learning management system before operating the device independently. Document all entries in the Medication Infusion Flowsheet in the EMR.

📞 CAPCS — Palliative Care Service in SA

CAPCS (SA Palliative Care Service) supports people to remain at home and receive end-of-life care in their preferred place.

Phone(08) 8222 6825
EmailHealth.QEHCAPCS@sa.gov.au
HoursMon–Fri, 8:00 am – 5:00 pm
After Hours(08) 8222 6000
Who Can Refer?
  • Anyone can refer — with patient consent
  • GP must be informed of the referral
  • No charge for CAPCS services
  • Patients in the SA metropolitan region
What CAPCS Provides
  • Specialist medical advice on symptom management
  • Community nurses for care coordination
  • Occupational therapy & specialist pharmacy
  • Social work, counselling & bereavement support
  • Telehealth, home visits, hospice & outpatient clinics

⚖️ Voluntary Assisted Dying (VAD) — South Australia SA

🔴 CRITICAL — Health practitioners MUST NOT initiate VAD discussions. Only the patient can raise VAD first. Contacting VAD services without patient consent is a breach of the Act. If a patient raises VAD, listen respectfully, then notify your NUM and consultant with the patient's consent.
Voluntary Assisted Dying Act 2021 (SA) — Legal from 31 January 2023
Who may access VAD:
  • Metastatic or advanced cancer
  • Neurodegenerative diseases (MND, MS, Huntington's, Parkinson's)
  • End-stage kidney, heart or lung disease
  • Must have full decision-making capacity
  • Must meet strict eligibility criteria under the VAD Act 2021 SA
💡 A death following VAD is NOT a reportable death. The death certificate records the underlying disease — not VAD.
👩‍⚕️ Nursing Responsibilities with VAD
What to do:
  • Listen respectfully if the patient raises VAD
  • Notify NUM, Consultant & VAD Liaison Nurse — with patient consent
  • Continue providing best possible palliative care regardless
  • VAD Liaison Nurse: 0468 577 687
What NOT to do:
  • Do NOT initiate VAD discussions under any circumstances
  • Do NOT act as a formal witness or contact person
  • Staff may conscientiously object — but must not impede the patient's access to VAD

🩺 Assessment of Life Extinct — RN Role in the Community

Applies in community palliative care settings only — where the patient is NFR, no GP is available, and an expected death has occurred during office hours.

Clinical Assessment (RN can perform)
  • No carotid pulse
  • No heart sounds × 2 minutes
  • No breath sounds × 2 minutes
  • Bilateral fixed & dilated pupils
  • No response to stimuli
Important Distinctions
  • Assessment of life extinct → RN can undertake this
  • Declaration of life extinct → RN can declare when patient is NFR AND no GP can attend
  • Certification of death → ONLY a medical practitioner can certify (required within 48 hours — Births, Deaths and Marriages Registration Act 1996, S.36)
⚠️ RN may NOT declare if: cause of death is unclear | uncertainty about life extinction | GP can attend | patient is an organ or tissue donor candidate.
After Declaration — Nursing Actions
📞 Notify Substitute Decision Maker / Emergency Contact 📞 Notify patient's GP ✊ Assist family with funeral director arrangements 📋 Document contemporaneously in the EMR

🌟 Cultural & Spiritual Considerations

Australian healthcare is multicultural — both patients and staff. Culture and religion often become more significant at end of life. Never assume — always ask respectfully about preferences.

🦅 Aboriginal & Torres Strait Islander
  • Holistic view of wellbeing — culture, spirit & community
  • Cyclical concepts of life, death & spiritual dreaming
  • Consult Aboriginal Health Workers & Liaison Officers
  • No direct equivalent for 'VAD' in some languages
🌎 Culturally & Linguistically Diverse (CALD)
  • Use accredited NAATI interpreters — not family members
  • Interpreters must not benefit from the patient's death
  • Communication must be culturally aware at each step
  • VAD discussions via phone/video have legal limits in SA
✍ Religion & Body Preparation
  • Different cultures require specific body preparation before & after death
  • Plan ahead — engage spiritual care early in the admission
  • Spiritual Care Chaplains are qualified clinical staff
  • Document cultural and religious preferences in the care plan

💬 Communication — Words Matter

Use Clear, Honest Language
  • Use the words "die" and "dead" — avoid vague terms like "passed away" or "gone to sleep" which can cause confusion
  • Check understanding: "Can you tell me what you understand about your situation?"
  • Silence is okay — you don't need to fill every moment
  • Document all significant conversations contemporaneously in the EMR
Practical Tips
  • Ensure interpreter support for CALD patients at every stage
  • Be especially careful with language around VAD — never initiate
  • Families may use very different words for death — be culturally aware
  • Communication is a clinical skill. Words matter enormously at end of life.

📊 Palliative Care in Australia — By the Numbers

107,500
Palliative care hospitalisations in Australia (2023–24)
+46%
Increase in palliative hospitalisations since 2015–16
55%
Of palliative hospitalisations ended with the patient dying in hospital (2023–24)
95,500
Palliative care episodes recorded in PCOC in 2024
92%
Of episodes commenced within 2 days of the patient being ready for care
86%
Of unstable phases resolved within 3 days

Source: AIHW (2025) Palliative care services in Australia — aihw.gov.au

💜 Self-Care for Nurses

Palliative and end of life care is deeply rewarding — and deeply challenging. It is okay to feel this. Looking after yourself is not optional; it enables you to care for others well.

🏥
Employee Assistance Program (EAP)
Free, confidential counselling available through most Australian health services. Available during your grad year and beyond. Ask your NUM or HR for the contact details.
🎓
University Counselling
While studying, your university offers free student counselling services. Don't wait until you're overwhelmed — early support is most effective.
🤝
Peer Support & Debrief
Debrief after difficult shifts with trusted colleagues. Clinical supervision is available in many palliative care settings. You are not alone in this work.
📞
National Support Lines
Beyond Blue: 1300 22 4636
Lifeline: 13 11 14
nmsupport.org.au
24/7 nurse & midwife support

🔗 Key Resources