NDIS and Palliative Care: Provider Guide to End-of-Life Support and Documentation

NDIS vs Palliative Care System

Palliative care and the NDIS are two separate systems with different purposes, funding sources, and service models. Understanding the distinction is essential for providers supporting participants at end of life.

Palliative Care System

Palliative care is a health system responsibility. It is funded through state and territory health departments and delivered by specialist palliative care services. Palliative care focuses on:

• Symptom management — pain relief, nausea management, breathing support, and other clinical symptom control
• Medical treatment decisions — clinical decisions about treatment options, medication management, and medical interventions
• Specialist nursing — palliative care nursing visits, clinical assessments, and health monitoring
• Psychological support — counselling for the participant and family (clinical)
• Hospice care — inpatient palliative care in a hospice or hospital setting
• Bereavement support — support for family and carers after the participant's death

NDIS at End of Life

The NDIS continues to fund disability-related supports throughout the participant's life, including the end-of-life period. NDIS supports at end of life focus on:

• Personal care — assistance with daily activities as the participant's needs increase
• Daily living support — meal preparation, household tasks, medication prompting
• Community participation — supporting the participant to do what matters to them during their remaining time
• Support coordination — coordinating between NDIS providers, palliative care services, family, and the NDIA
• Assistive technology — comfort equipment, positioning aids, communication devices
• Home modifications — modifications to facilitate care at home (e.g., hospital bed space, accessibility changes)

What the NDIS Funds at End of Life

As a participant approaches end of life, their NDIS-funded supports typically change in nature and intensity. Understanding what the NDIS will and will not fund during this period helps providers plan appropriate support and manage expectations.

Supports the NDIS Continues to Fund

Supports the NDIS Does Not Fund

• Palliative care nursing or clinical services (health system funded)
• Medication and pharmaceutical supplies (health system / PBS)
• Hospice admission costs (health system funded)
• Counselling or psychological support for family and carers (health system or community services)
• Funeral costs or bereavement services

Requesting Urgent Plan Reviews

When a participant receives a terminal diagnosis or their condition deteriorates significantly, an urgent plan review should be requested. The NDIA can process these reviews quickly — often within days — when end-of-life circumstances are identified. The review can increase support hours, add new support categories, and adjust the plan to reflect the participant's changed needs and priorities.

Provider Obligations

NDIS providers supporting participants at end of life must continue to meet all standard Practice Standards obligations while also adapting their approach to the sensitive context of end-of-life care.

Core Obligations

• Person-centred approach — the participant's wishes, values, and preferences must drive all decisions about their care and support. This includes respecting their choices about how and where they want to spend their remaining time.
• Dignity and respect — maintaining the participant's dignity is paramount during end-of-life care. This includes privacy during personal care, respecting cultural and spiritual practices, and ensuring the participant is treated with compassion.
• Informed consent — the participant (or their guardian/nominee) must consent to all changes in their support. If the participant lacks capacity to make decisions, follow advance care directive provisions and guardian/nominee instructions.
• Incident reporting — continue to report all reportable incidents to the NDIS Commission, including unexpected death.
• Documentation — maintain comprehensive, timely documentation throughout the end-of-life period.

Reporting a Death

The death of an NDIS participant is a reportable incident under the NDIS (Incident Management and Reportable Incidents) Rules. Providers must:

• Report the death to the NDIS Commission within 24 hours
• Notify the NDIA of the participant's death
• Complete a full incident report with details of the circumstances
• Cooperate with any NDIS Commission investigation (particularly for unexpected deaths)

Documenting Changing Needs

End-of-life care involves rapidly changing needs that must be documented accurately and promptly. Good documentation during this period serves multiple purposes: ensuring continuity of care, supporting plan reviews, fulfilling incident reporting obligations, and providing a record for the NDIS Commission if they investigate the death.

What to Document

• Changes in condition — any deterioration in the participant's physical condition, mobility, communication, cognition, or emotional state
• Changes in support needs — increased assistance required, new care tasks, changes in positioning or feeding requirements
• Participant preferences — any wishes expressed by the participant about their care, who they want to see, where they want to be, and what matters to them
• Clinical information received — information shared by palliative care professionals, GPs, or hospital staff
• Communication with other providers — records of all communication between your organisation, palliative care, support coordinator, and family
• Advance care directive status — whether an advance care directive is in place, what it says, and how it applies to your support delivery
• Staff observations — detailed observations during each shift, including pain indicators, comfort measures used, and participant responses

Progress Notes at End of Life

Progress notes during end-of-life care should be more frequent and more detailed than standard notes. Consider:

• Writing notes at the end of every shift (not just when something notable happens)
• Including specific comfort measures provided and the participant's response
• Documenting the participant's pain level using an appropriate pain assessment tool
• Recording any communication with the palliative care team, GP, or family
• Noting the participant's emotional state and any expressed wishes
• Describing positioning, skin integrity, and hydration/nutrition intake

Coordination with Health Services

Effective coordination between NDIS providers and palliative care services is essential for seamless end-of-life care. Without deliberate coordination, gaps appear — medications are missed, comfort measures are inconsistent, and the participant and family receive conflicting information.

Coordination Framework

• Single point of contact — establish one person in your organisation (typically the team leader or coordinator) as the primary contact for the palliative care team
• Case conferences — participate in palliative care case conferences (multidisciplinary meetings) to align approaches
• Shared care plan — where possible, contribute to a shared care plan that covers both health and disability supports
• Communication protocol — agree on how and when information is shared between NDIS and palliative care providers
• Escalation protocol — ensure your support workers know when and how to contact the palliative care team for clinical concerns (pain, breathing changes, seizures, nausea)

Common Coordination Challenges

• Role confusion — palliative care and NDIS workers may not understand each other's roles. Clarify early what each provider is responsible for.
• Scheduling conflicts — palliative care visits and NDIS support shifts may overlap. Coordinate schedules to ensure both can access the participant.
• Information silos — clinical information may not be shared with NDIS workers, and disability information may not be shared with palliative care. Establish consent-based information sharing.
• After-hours access — palliative care emergencies can happen at any time. Ensure your workers have after-hours contact details for the palliative care team.

Advance Care Directives and Decision-Making

Advance care directives (ACDs) are legal documents that record a person's preferences for future health care and personal care in the event they lose the capacity to make or communicate decisions. For NDIS providers supporting participants at end of life, understanding and respecting ACDs is critical.

What NDIS Providers Need to Know

• Check for an existing ACD — ask the participant, family, or support coordinator whether an advance care directive or advance care plan exists
• Understand the ACD's scope — ACDs may address medical treatment decisions, personal care preferences, religious and cultural requirements, and who should be contacted in an emergency
• Follow the ACD — your support workers must comply with the ACD's instructions in their area of responsibility (personal care, daily activities, communication with health providers)
• Document ACD status — record in the participant's file whether an ACD exists, where it is held, and how it applies to your support delivery
• Escalate clinical decisions — ACDs that address medical treatment decisions (e.g., resuscitation, hospitalisation, tube feeding) are the responsibility of the clinical team. Your workers should know the ACD exists but should escalate any clinical decision to the appropriate health professional.

Supporting Your Staff

Supporting a participant through end of life is emotionally demanding for support workers. Many disability support workers develop close relationships with their participants over months or years, and the participant's death is a significant loss.

Staff Support Strategies

• Prepare workers in advance — when a participant receives a terminal diagnosis, brief all support workers on the situation, what to expect, and what their role will be
• Provide training — offer training in end-of-life care, grief and loss, and self-care strategies
• Regular check-ins — increase supervision frequency for workers supporting end-of-life participants
• Post-death debriefing — offer individual and group debriefing sessions after a participant dies
• Employee Assistance Program — ensure workers know how to access counselling through your EAP (or equivalent)
• Time off — consider offering workers time off following a participant's death if they are significantly affected
• Peer support — create opportunities for workers to support each other (team meetings, informal check-ins)

Cultural and Spiritual Considerations

End-of-life care is deeply cultural and spiritual. Different cultures have different beliefs, practices, and rituals around death and dying. NDIS providers must respect and accommodate these differences.

Key Considerations

• Ask, do not assume — ask the participant and family about their cultural and spiritual needs rather than making assumptions based on their background
• Religious and spiritual support — facilitate access to chaplains, ministers, elders, or spiritual advisers if the participant requests this
• Dietary requirements — some cultures have specific dietary practices during illness or end of life
• Visitors — some cultures expect large numbers of family and community visitors. Accommodate this where possible, including in SIL settings
• Body care after death — different cultures have specific requirements for the care of the body after death. Discuss these in advance and document them
• Aboriginal and Torres Strait Islander considerations — connection to Country, Sorry Business, and community protocols around death require specific cultural sensitivity and may involve extended mourning practices

After a Participant Dies

The period immediately following a participant's death involves several practical, administrative, and emotional tasks.

Immediate Actions

• Contact emergency services if the death occurs at home or in SIL (an ambulance must attend to confirm death unless the participant is under active palliative care with a death-at-home plan)
• Contact the participant's family or nominee
• Report the death to the NDIS Commission within 24 hours
• Notify the NDIA of the participant's death
• Notify the participant's support coordinator, plan manager, and other NDIS providers

Administrative Actions

• Complete the incident report and submit to the NDIS Commission
• Process any outstanding invoices or claims (for services delivered up to and including the date of death)
• Close the participant's file (retain records for the required period — generally seven years)
• Manage the participant's belongings in accordance with their wishes or family instructions
• Debrief support workers and offer wellbeing support

In SIL Settings

When a participant dies in a SIL setting, additional considerations include:

• Supporting other residents who may be affected by the death
• Managing the emotional impact on the support team
• Communicating sensitively with other residents' families
• Addressing the practical impact on the shared roster of care
• Managing the vacancy (the participant's room/space)

End of Life in SIL Settings

Supporting a participant through end of life in a SIL setting is particularly complex because it affects the entire household — other residents, support staff, and the shared living environment.

Key Considerations for SIL Providers

• Participant's wish to stay — many participants want to die at home (in their SIL). Support this wish wherever possible by coordinating with palliative care to provide in-home end-of-life care.
• Environmental adaptations — the SIL environment may need temporary modifications (hospital bed, pressure care equipment, medication storage, privacy screens)
• Other residents — communicate with other residents (at an appropriate level for their understanding) about what is happening. Provide emotional support and monitor for signs of distress.
• Staffing — additional staffing may be needed for the dying participant without reducing support for other residents. Request a plan review to increase funding.
• Privacy — balance the dying participant's need for privacy and dignity with the shared living environment. Where possible, create a calm, private space within the home.
• After-hours support — deaths can occur at any time. Ensure after-hours on-call staff know the procedures and have contact details for palliative care, family, and emergency services.

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Summary

Supporting an NDIS participant through end of life is deeply meaningful work that requires compassion, coordination, and compliance in equal measure. The key principles are: the NDIS continues to fund disability supports alongside palliative care; the participant's wishes and dignity drive all decisions; thorough documentation protects the participant, your organisation, and your staff; and effective coordination with the palliative care system ensures seamless care.

No provider can be fully "prepared" for end-of-life care — it is inherently unpredictable and emotionally demanding. But having the right policies, training, and documentation frameworks in place means your organisation can focus on what matters most: providing dignified, compassionate care during the most significant period of a participant's life.

The Complete SIL Kit from NDISCompliant provides 109 audit-mapped documents covering the NDIS Practice Standards Core Module — the compliance foundation that supports your organisation through all aspects of NDIS service delivery, including the most sensitive ones.