Key clinical processes: assess, plan, and communicate.
- Goals of care
- Tools for identify patients at risk of deterioration
- Holistic MDT assessment and Care Plan
- Communication
- Advance care planning
- Symptom management and medication
- Carer support
- Equipment provision
- For patients with complex needs- referrals to palliative care
- Voluntary assisted dying
Goals of Care: maintenance of symptom control, function and QOL within context of life limiting diagnosis; limitations of care and treatment likely.
Prognosis: months sometimes years.
Recognition and timely identification of individuals with a life limiting illness.
The Gold Standards Framework Proactive Identification Guidance (PIG).
- Palliative Assessment and Clinical Response template (RUG-ADL, AKPS, SAS).
- SPICT.
- SPICT4ALL.
- Symptom Assessment Scale (SAS).
- NAT-PD progressive disease.
Palliative Care NSW resource: how to refer GP | when to refer GP.
PCOC resource:
Patient/carer holistic needs assessment, including physical, psychological, emotional, social, spiritual and cultural domains.
Determine goals of care and instigate holistic care plan:
- Identifying goals of care: tip for clinicians.
- NSW Ambulance role in community palliative care - Health Practitioners Fact Sheet.
- Advance care planning documents and goals of care guide paramedic decision making; consider including as part of GPMP.
- Remuneration for palliative care provision in primary care.
Communicate with patient and carer:
- Communicate using the PREPARED Model.
- Starting Palliative Care Conversations fact sheet.
Provide the 'Palliative Approach' information link or leaflet to palliative care patients, carers and family members:
Initiate advance care planning discussion and complete documentation, if appropriate (including Advance Care Directive (ACD).
Refer to ACP toolkit as a guidance tool.
Identify substitute decision maker (SDM).
Initiate or review resuscitation discussion, if appropriate.
Complete resuscitation plan, if appropriate.
Complete ambulance plan, if appropriate.
For further information read the NSW Ambulance role in community palliative care fact sheet.
- NSW capacity toolkit.
- Advance care planning fact sheet for health professionals.
- Advance care planning and palliative care.
Discuss with patient Preferred Place of Care (PCC).
Engage with all MDT members to provide quality symptom management.
Optimise symptom management.
- Symptom control in palliative care by Dr Benjamin Thomas and Dr Roger Coles.
- Palliative Assessment Clinical Response form.
- Medications in palliative care HealthPathway - Illawarra Shoalhaven | ACT and SNSW.
- palliAGED symptoms and medicines.
Rationalise regular medications.
Consider alternative consultation OPTIONS when patient is unable to attend the practice:
- Home visits, virtual care consultations (VCC), telehealth (video).
- Virtual care palliative care resources.
Communicate with carer.
Assess carer needs, ask the carer to complete one of the following needs assessment tools (dependent on condition):
- Needs assessment tool for carers of people with cancer (NAT-C).
- Needs assessment tool for carers of people with a chronic condition (NAT-CC).
- Care giver strain index - a 13-item tool originally developed to screen for caregiver strain following the hospital discharge by an elderly family member. The tool supports quick identification and measurement of family concerns in the employment, financial, physical, social and time domains.
Identify needs and supports, offer information, refer to other supports and services as required:
- Provide carer booklet.
- Provide information on carer supports - Illawarra Shoalhaven local support | SNSW local support.
Consider referral to Carer Gateway or My Aged Care.
Communicate with carer:
Is a home and mobility assessment required?
- Refer to Allied Health for assessment via GPMP/TCA or LHD.
- Palliative care equipment loans and purchases - ISLHD | SNSW.
SASH home modification program - Enable NSW and application process FAQ.
Discuss with patient preferred place of care (PCC):
- Caring@Home resources and training for carer/family (if home is PCC).
Consider referral for grief counselling.
Referral and palliative care information:
- Refer to Specialist Palliative Care Team Illawarra Shoalhaven LHD | Southern NSW LHD.
- Palliative Care NSW flowchart - When to refer | How to refer GP.
Palliative care after hours helpline (Healthdirect Helpline) 1800 022 222.
Patients and practitioners interested in knowing more about Voluntary Assisted Dying:
- The Illawarra Shoalhaven LHD VAD team are available Monday-Friday (excluding public holidays) between 8.00am-4:30pm and contactable by phone 1300 256 684 or email ISLHD-VAD@health.nsw.gov.au
- Southern NSW LHD VAD team are available Monday-Friday (excluding public holidays) between 8.00am-4:30pm and contactable by phone 046 874 453 or email SNSWLHD-VAD@health.nsw.gov.au
- NSW State-wide VAD Care Navigator and Support Services are available Monday-Friday (excluding public holidays) between 8.00am-4:30pm and contactable by phone 1300 802 133 or email NSLHD-VADCareNavigator@health.nsw.gov.au
General information for health practitioners or providers:
- NSW Health - Health practitioner or provider - voluntary assisted dying information.
- NSW Voluntary Assisted Dying Clinical Practice Handbook.
- First request patient information guide - VAD.
- COORDINARE - VAD resource 2023.
Navigating the topic of VAD in ACP conversations:
- Guiding principles for health professionals.
- Guiding principles for health and aged care organisations.
Consumer information:
- NSW Health - VAD in NSW consumer map.
Key clinical processes: reassess clinical goals of care, anticipatory care planning and MDT care coordination.
- Goals of care
- Holistic MDT assessment and Care Plan
- Communication
- Advance care planning
- Symptom management and medication
- Carer support
- Equipment provision
- For patients with complex needs - referrals to palliative care
- Voluntary assisted dying
Deterioration: symptom management and support of functional decline to sustain quality of life (QOL) in context of life limiting diagnosis and within limitations of expected deterioration.
Rapidly Declining: treatment of potentially reversible cause of acute deterioration; Symptom control and functional support within context of life limiting diagnosis; Limitations in care and treatment likely.
Reassess holistic care needs frequently.
Review goals of care and care plan to address current and future anticipated needs.
- Include limitations of medical treatment after episodes of acute deterioration.
- Identifying goals of care: tip for clinicians.
Care coordination and liaison across MDT settings / discussion at MDT Case Conference.
Consider including General Practice Palliative Management Plan.
- Click the following link to download the COORDINARE - South Eastern NSW PHN General Practice Palliative Management Plan.
Clinical assessment tools:
Discussion / input at MDT Case Conferencing.
Communicate with patient and carer:
- Communicate using the PREPARED Model.
- Starting palliative care conversations fact sheet.
Confirm with patient preferred place of care (PCC), if practical and update in ACD.
Implantable cardioverter-defibrillator (ICD) discussion if applicable.
Explore bereavement needs of person and carers.
Discuss and confirm preferred place of death (PPD).
Planned home death:
- Identify needs, supports and service of carer and their person.
- Palliative care guide for GPs - families and carers.
- Supporting a planned home death: the GP's interactive checklist.
- GP to complete - Medical Certificate Cause of Death (MCCD) for expected home death.
Planned hospital death:
- Hospital referral - Illawarra Shoalhaven LHD | Southern NSW LHD.
Planned residential aged care home death:
- Residential Aged Care Referral AN ACC Classification 1 - entering permanent RAC to receive planned palliative care.
- Guide to palliative care entry into aged care facilities.
- Palliative care status form - Medical Practitioner or Nurse practitioner must complete part B (medical assessment).
- AN-ACC Reference Manual and AN-ACC Assessment Tool.
Review and update advance care plan (ACP) / advance care directive (ACD) and person centred goal setting.
Confirm preferred place of care (PPC) / preferred place of death (PPD) and consider transfer, if appropriate.
If commencing initial ACP discussion, see information under stable ACP as guidance.
Initiate or review resuscitation discussion:
- Complete resuscitation plan, if not already done.
- Complete ambulance plan, if not already done.
- For further information read the NSW Ambulance role in community palliative care fact sheet.
Optimise symptom management.
- Symptom control in palliative care by Dr Benjamin Thomas and Dr Roger Coles.
- palliAGED symptoms and medicines.
Rationalise regular medications.
- Review medicines and deprescribe as appropriate.
Prescribe anticipatory crisis drugs and orders.
For a home death:
- Ensure drug administration equipment and charts are in place.
- National Core Community Palliative Care Medicines List.
- Medications in palliative care HealthPathway - Illawarra Shoalhaven | ACT and Southern NSW.
- Managing palliative care symptoms - a guide for health professionals supporting a carer with a planned home death.
Initiate carer assessment or reassess carer needs.
Assess carer needs, ask carer to complete one of the following needs assessment tools (dependent on condition):
- Needs assessment tool for carers of people with cancer (NAT-C).
- Needs assessment tool for carers of people with a chronic condition (NAT-CC).
- SPICT4ALL.
- Caregiver strain index - a 13-item tool originally developed to screen for caregiver strain following the hospital discharge by an elderly family member. The tool supports quick identification and measurement of family concerns in the employment, financial, physical, social and time domains.
Identify needs and supports, offer information, refer to other supports and services as required:
- Provide carer booklet.
- Caring@Home resources and training for carer/family (if home is PCC/PPD).
- Information for patients and families.
- Provide information on carer supports - Illawarra Shoalhaven local support | Southern NSW local support.
- Planning for the future and palliative care.
Carer respite:
- Consider referral to Carer Gateway or My Aged Care.
Communicate with patient and carer
Is a home and mobility assessment required?
- Refer to allied health for assessment via GPMP/TCA or LHD.
- Palliative care equipment loans and purchases Illawarra Shoalhaven LHD | Southern NSW LHD.
SASH Home Modification Program - Enable NSW and application process FAQ.
Referral and palliative care information:
- Refer to Specialist Palliative Care Team - Illawarra Shoalhaven LHD | Southern NSW LHD.
- Palliative Care NSW flowchart - when to refer | how to refer.
- For patients with complex needs, request palliative care assessment.
- For symptom management or input from a Palliative Care Specialist doctor only refer to Symptom Management Clinic.
Consider referral for grief counselling.
Provide information on 24/7 palliative care helpline.
- Clinicians - NSW after hours palliative care support helpline - call 1800 548 225.
- Healthdirect helpline - palliative care support for patients, cares and families - call 1800 022 222. The helpline is available 24 hours a day, 7 days a week.
Consider referral to LHD:
Patients and practitioners interested in knowing more about Voluntary Assisted Dying:
- The ISLHD VAD team are available Monday -Friday (excluding public holidays) between 8am-4:30pm and contactable by phone 1300 256 684 or email ISLHD-VAD@health.nsw.gov.au
- SNSWLHD VAD team are available Monday -Friday (excluding public holidays) between 8am-4:30pm and contactable by phone 046 874 453 or email SNSWLHD-VAD@health.nsw.gov.au
- NSW State-wide VAD Care Navigator and Support Services are available Monday-Friday (excluding public holidays) between 8am-4:30pm and contactable by phone 1300 802 133 or email NSLHD-VADCareNavigator@health.nsw.gov.au
General Information for health practitioners or providers:
- NSW Health - Health practitioner or provider - voluntary assisted dying information.
- NSW Voluntary Assisted Dying Clinical Practice Handbook.
- First request patient information guide - VAD.
- COORDINARE - VAD resource 2023.
Navigating the topic of VAD in ACP conversations:
- Guiding principles for health professionals.
- Guiding principles for health and aged care organisations.
Consumer information:
- NSW Health - VAD in NSW consumer map.
Key clinical processes: end of life pathways and comfort care.
- Goals of care
- Holistic MDT assessment and Care Plan
- Communication
- Provide care in line with advance care plan
- Symptom management in the last days of life
- Carer support
- Equipment provision
- Voluntary assisted dying
Comfort, dignified and compassionate care in the last days of life.
Reassess care needs daily.
Review care plan, in line with person centred medical goals of care / treatment, when appropriate:
Prepare terminal care management plan for PPD.
- Management of the terminal phase HealthPathways - Illawarra Shoalhaven | ACT and Southern NSW.
- Management of pain in the last days of life.
Commence end of life pathway.
- Aged Care Home - consider completing the Residential Aged Care End of Life Pathway form.
- Home - helping the person, carers, families plan for an expected home death:
Clinical assessment tools:
Communicate with patient (if applicable) and carer:
- Using the PREPARED Model.
- Provide ‘last days of life’ information leaflet
- At the end – dying explained
Document the terminal plan and share with carers, families and after-hours providers.
- ICD discussion and deactivation if not previously activated.
- Provide checklist for immediate after-death care.
- Identify carer needs, supports, services.
Preferred place of death (PPD) confirmed.
- Hospital referral process.
- RACF AN-ACC and referral process.
Complete Palliative Care Status Form.
Review and update advance care plan / advance care directive if appropriate.
Confirm preferred place of death (PPD) and consider transfer to PPD, if appropriate.
Provision of culturally appropriate terminal care.
Complete resuscitation plan, if not already done.
Complete ambulance plan, if not already done.
Complete Medical Certificate Cause of Death (MCCD) for Expected Home Death, if at home.
Optimise symptom management.
Discontinue non-essential medications.
Prescribe anticipatory crisis drugs and orders.
Ensure drug administration equipment and charts are in place.
NSQHS comprehensive care standard end of life care: last days of life.
Consider referral to LHD:
Provide carer information and resources:
- PCA the dying process - information for carers.
- Provide carer medical certificates, if needed.
- Identify carers ‘at risk’ of bereavement.
- Caregiver Strain Index - a 13-item tool originally developed to screen for caregiver strain following the hospital discharge by an elderly family member. The tool supports quick identification and measurement of family concerns in the employment, financial, physical, social and time domains.
- At the end factsheet, video and resources for patients and carers.
Referral for provision of aids and equipment Illawarra Shoalhaven LHD Equipment Loan Pool | Southern NSW LHD Equipment Loan.
Refer to allied health team, if required.
Refer to LHD for end of life package supports if required.
Home care package supports.
If death occurred as a result of the administration of a VAD substance, the usual guidelines for non-reportable deaths apply, with the additional requirements that the MCCD must:
- record that the patient self-administered or was administered a voluntary assisted dying substance, and
- record the underlying medical condition that made the patient eligible for voluntary assisted dying.
Section 19.4: Notification of Death from the NSW Voluntary Assisted Dying Clinical Practice Handbook.
Key clinical processes: post diagnosis and post death.
- Grief support- post diagnosis
- Care after death
- Communication
- Bereavement support
- MDT communication and reflection
Explore the social, emotional and wellbeing (SEWB) needs of the person, carer, families after diagnosis and throughout the palliative journey.
Grief and Anticipatory grief:
- Carer Support Needs Assessment (CSNAT) - a self-assessment tool for carers, facilitated by clinicians, to identify their needs and issues and assist them to rate how concerning these needs and issues are for them.
- Grief before death - understanding anticipatory grief.
- Assessment tool to distinguish depression from normal grief.
Legal documents for completion (as needed).
Complete medical certificate of cause of death.
- Verification of death and medical certificate of cause of death.
- Issuing a medical certificate of cause of death HealthPathways - Illawarra Shoalhaven | ACT and Southern NSW.
- Completing medical certificate cause of death (COD) quick reference guide.
- How to order medical certificate cause of death forms.
Undertake verification of death - completion of this verification of death form is not required when a person’s death is reportable to the Coroner or where a MCCD has been completed.
Complete Coroners checklist.
Completed Attending Practitioner’s Cremation certificate if required.
Communicate with family and carers.
Provide bereavement information to carer and family members.
Identify carers 'at risk' of bereavement.
After death information:
Information about grief and bereavement - consider bereavement care for all.
The role of the GP:
- Following up on the bereaved.
- Bereavement, loss and grief counselling HealthPathways - Illawarra Shoalhaven | ACT and Southern NSW.
Available supports:
MDT Communciation:
- Notify healthcare professionals involved in MDT.
- Wider MDT reflection and debrief, if required.
Reflection:
- After death audit - Quality Improvement After Death Audit - COORDINARE.
Self Care
- Drs4Drs - Doctors health advisory and referral service dedicated to the well-being of doctors and medical students.
- Self care matters resources - Palliative Care Australia (PCA).
- Self care matters planning tool.
- Self care resources - ELDAC.