Essential Component 8
There is quality care during the last days of life

Quality care in the last days of life is safe, effective, responsive and appropriate

Why is this an Essential Component?

Evidence for inclusion

Health professionals should be skilled in recognising the imminently dying patient and responding safely and appropriately to the needs of that person, their families and carers. They should also have the skills to explain clearly and sensitively that a person may be imminently dying to that person, their family and carers, in a way that is appropriate to their circumstances.

Being unaware that a loved one may be imminently dying can compound the distress and subsequent grief felt by families and carers, after what they may perceive to have been the sudden death of their loved one ( LACDP , 2014)[1].

Timely recognition that a person may be imminently dying and clear communication of that possibility enables goals of care to be discussed and a plan of care developed, implemented and reviewed so care is responsive to the changing needs and preferences of the patient, their family and carers.

Intended beneficial outcomes

  • Timely recognition of the imminently dying person occurs.
  • Quality care in the last days of life is safe, effective, responsive and appropriate.
  • Care is provided in the most appropriate environment, in accordance with the needs of patients and in consultation with the person, their family and carers.
  • Patients, families and carers are provided with information and support.
  • Care plans are developed, implemented and reviewed regularly to support people who are imminently dying, their families and carers.
  • Patients and care providers across all settings have access to 24-hour-a-day, 7-day-a-week support.
Quality care in the last days of life is safe, effective, responsive and appropriate

What tools/resources could support the implementation of this component?

The Agency for Clinical Innovation conducted a review of the tools and resources supporting this component in 2021. The review identified local, national and international tools and resources that could be used to support the implement this essential component. None are specifically recommended or advised to be used in preference over another.

Click the Acknowledgement button below to view the working group members involved in the latest review.

Working group members

Name

Role/Organisation

Peter Cleasby

Palliative Care Education Program Manager, Health Education & Training Institute, ACI Palliative Care Network Co-Chair

Working Group Lead

Dr Antony Kodsi

Palliative Care and Pain Physician, Royal North Shore Hospital

Barbara Lewis

Manager Carer Support, Northern Sydney LHD

Brian Long

Consumer representative

Kaye Duffy

Board of Health Consumers NSW, Chair Hunter Manning Community Advisory Committee, Newcastle

Karen Martin

Manager Support Services, Motor Neurone Disease NSW

Dr Pippa Blackburn

Clinical Service Manager, Illawarra Shoalhaven LHD

Usha Kuthirayodan

Clinical Nurse Consultant Palliative Care, Dubbo Health Service

Patricia Lowe

Clinical Nurse Consultant Palliative Care, Hunter New England Local Health District

Jessica Scaife

Nurse Unit Manager, Department of Palliative Care, Calvary Mater Newcastle

Dr Megan Ritchie

Palliative Care Physician, Concord Repatriation General Hospital

Close acknowledgements

Physical / functional assessment - palliative care

Palliative Care Self Assessment (PaCSA)

Palliative Care Self Assessment (PaCSA) provides services with an online portal to self-assess against the National Palliative Care Standards (5th ed.), mapped against the National Safety and Quality Health Service Standards (2nd ed.), resulting in a quality improvement action plan.

Support Team Assessment Schedule [STAS]

A clinical audit tool, the Support Team Assessment Schedule (STAS), is used to measure outcomes of palliative care. The STAS was developed in the UK to audit community palliative care services provided by a support team. An expanded support team assessment schedule (E-STAS) has been developed (Edmonds et al) to determine symptom prevalence and outcome for inpatients and outpatients referred to a multi-professional hospital palliative care team.

Registration or payment Registration required – details on website (as per link)

Carers

Carer Gateway – planning for the end of life

An Australian Government resource to support people caring for someone who is approaching end of life.  Helpful practical information and support for carers of people at end of life, as well as links to useful organisations and websites. 

CarerHelp

CarerHelp is funded by the Australian Government Department of Health and provides a collection of resources for carers supporting someone approaching the end of life.

Carers Australia

Carers Australia is the national peak body representing Australia’s carers, advocating on behalf of Australia’s carers to influence policies and services at a national level.

Carers NSW

Carers NSW is the statewide peak organisation for carers and they have a suite of resources for carers supporting someone at the end of life. This link shares videos of carers sharing their experiences and insights of caring for someone living with a chronic condition or terminal illness as information factsheets. This page also takes you to an interactive online learning module called ‘Caring for someone with a life-limiting illness’.

Palliative Care Australia

Palliative Care Australia is the peak national body for palliative care and have resources for clinicians, patients, families and carers. The link below takes you directly to the carer resources.

Case conferences / family meetings

Family meetings in palliative care: multidisciplinary clinical practice guidelines

Guidelines for health professionals working with cancer and palliative care patients developed by the Centre for Palliative Care Education and Research in 2009.

Multidisciplinary Case Conferences

Commonwealth Government specifications for MBS payments for multidisciplinary case conferences.

Multidisciplinary meetings for cancer care: A guide for health service providers

National Breast Cancer Centre produced guide (2005) for health service providers and multidisciplinary team members with ideas and tools to improve multidisciplinary care at a local level.

Additional tools for specific populations

Quality Palliative Care in Long-Term Care: Self-Assessment Checklist

The checklist was developed to assess whether key structural, process, and outcome components are present in a given long-term care facility. This checklist can be used in conjunction with the Model for Quality Palliative Care in Long-Term Care to assist agencies to perform self-audits to monitor progress toward best practice in providing quality palliative care in long-term care facilities.

Medication

Core Palliative Care Medicines List for NSW Community Pharmacy

State-specific core medicine list for NSW community pharmacy developed by NSW Health.

Last days of life anticipatory prescribing recommendations (for inpatient setting – adult)

This guidance document, outlining the use of the anticipatory prescribing guide and flowcharts, has been developed to provide generalist (non-specialist palliative care) clinicians caring for patients dying in all inpatient hospital settings guidance on how to prescribe anticipatory subcutaneous medications for the symptoms that may be experienced by patients in the last days of life. It is designed to promote and systematise consistent, best practice, patient-centered use of medication in the last days of life.

Outcome measures - palliative care

Caring@home

Using the caring@home resources to support home-based consumers and their carers helps providers to meet Aged Care Quality Standards #1,2,3,7 & 8 and the Charter of Aged Care Rights. The resources are free, evidence-based and facilitate high-value care; they support person-centred outcomes and improve service performance efficiency and effectiveness

FAMCARE / FAMCARE2 [PCOC]

A Canadian tool for obtaining family/care giver feedback on services - during and/or after the period of palliative care provision. The FAMCARE Scale was developed to measure family satisfaction with advanced cancer care. The next generation FAMCARE tool (FAMCARE-2) was adapted to reflect inpatient and team-based care using palliative care services

Palliative Care Outcomes Scale [POS]

The POS measures are a family of tools to measure patient’s physical symptoms, psychological, emotional and spiritual, and information and support needs. They are validated instruments that can be used in clinical care, audit, research and training. The POS measures are specifically developed for use among people severely affected by diseases such as cancer, respiratory, heart, renal or liver failure, and neurological diseases.

References

  1. Leadership Alliance for the Care of Dying People. Once Chance to Get it Right: Improving people’s experience of care in the last few days and hours of life. United Kingdom: LACDP; 2014.

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