Essential Component 4
There is early recognition that a person
may be approaching or reaching the end of life

Early recognition that a person may be approaching or reaching the end of life is beneficial for everyone

Why is this an Essential Component?

Evidence for Inclusion

Earlier recognition that a person may be approaching the end of their life provides both clinicians and patients and their families opportunities to establish their goals of care and to plan for their changing care demands into their future. This also allows for earlier consideration of approaches to care that focus on improved quality of life. Improved satisfaction with care, quality of life, physical and psychological symptoms and health service utilisation are all documented benefits of this approach to care (El-Jawahri et al, 2011; van der Steen et al, 2014; Temel et al, 2010; Zimmerman et al, 2014).

Earlier recognition also increases capacity to improve support to carers and families, especially where the patient’s goals of care include remaining at home.

Intended Beneficial Outcomes

  • Clinical staff are able to identify those people who may benefit from integrated care as they approach the end of life.
  • Standardised screening tools are available and used.
  • People have an opportunity through early recognition to benefit from enhanced care models.
  • Conversations about goals of care commence earlier to optimise opportunities to align care to those goals.
  • There are earlier opportunities for advance care planning.
  • Negotiated goals of care guide service provision to prioritise quality of life for patients, their families and carers.
  • Liaisons and partnerships are built with other services to provide multidisciplinary and cross-sectoral care.
  • Liaison and coordination with other specialists occur.
  • Patients, carers and families are informed and educated about the expected course of the patient’s illness and can plan for that.
  • Earlier involvement of specialist palliative care services based on assessed need can improve quality of life, potentially improve survival and reduce distress for patients, their carers and families.
Early recognition that a person may be approaching or reaching the end of life is beneficial for everyone

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

The Agency for Clinical Innovation commissioned CareSearch (Palliative and Supportive Services, Flinders University) to identify local, national and international tools or resources that can potentially be used to implement each of the ten (10) Essential Components of Care within the Blueprint.

To be included, tools and resources were required to be in English, be applicable to the Australian context and be supported by evidence (such as published validation studies, clinical guidelines representing expert consensus, or advice from expert clinicians who were consulted).

The set of tools and resources provided is not intended to be exhaustive, nor is any one tool specifically recommended. Click here for more information on the methodology adopted by CareSearch in identifying these tools and resources.

Core Palliative Care Tools

  • Amber Care Bundle
    Description
    The AMBER care bundle is a systematic approach for the multi-disciplinary team to follow when clinicians are uncertain whether a patient may recover and are concerned that they may only have a few months to live. It encourages clinicians, patients and families to continue with treatment, if they wish, in the hope of a recovery, whilst talking openly about preferences and wishes, and putting plans in place should the worst happen. The tool combines 2 identification questions, four clinical interventions and systematic monitoring that can be applied in any ward setting.
    Registration/Payment
    Communication with the CEC regarding use is recommended - CEC-AmberCare@health.nsw.gov.au
  • Australia-Modified Karnofsky Performance Score (AKPS)
    Description
    The Australia-modified Karnofsky Performance Score (AKPS) is a single score measure between 10 and 100 assigned by a clinician based on observations of a patient’s ability to perform common tasks relating to activity, work and self-care. The AKPS is also one of 5 assessment tools used in the national Palliative Care Outcomes Collaboration (PCOC) open to participation by all palliative care services.
    Registration/Payment
    No requirement for registration or payment
  • FACIT-Pal: Functional Assessment of Chronic Illness Therapy - Palliative Care
    Description
    A series of questionnaires informing clinical management of chronic diseases and cancers. The first questionnaire, the Functional Assessment of Cancer Therapy – General (FACT-G), was developed and validated many years ago and since then more than 50 questionnaires have been translated and linguistically validated in over 60 languages.
    Registration/Payment
    The “FACIT System” comprising questionnaires and all related subscales, translations, and adaptations are owned and copyrighted by David Cella, Ph.D. The latter has granted FACIT.org the right to license usage of the FACIT System to other parties. Copies of the questionnaire in English are available through the link. Registration is required to access to the scoring and interpretation materials. Fees for use of the English version for investigator-initiated studies are generally waived.
  • Gold Standard Framework Prognostic Indicator Guidance (PIG) 4th Edition Oct 2011
    Description
    Represents a series of indicators (such as the surprise question) and processes designed to support GPs.
    Registration/Payment
    The products are copyright protected. The National GSF Centre website indicates that subject to permission, materials “available on the website” are free subject to correct referencing, that is- Prognostic Indicator Guidance (PIG) 4th Edition Oct 2011 © The Gold Standards Framework Centre In End of Life Care CIC, Thomas. K et al
  • Palliative Prognostic Index (PPI)
    Description
    The Palliative Prognostic Index (PPI) was devised and validated in patients with cancer in a hospice inpatient unit in Japan. Performance status (PS) and clinical symptoms were assessed prospectively. The Palliative Prognostic Index (PPI) was defined by PS, oral intake, oedema, dyspnoea at rest, and delirium. Predicts 3 week and 6 week survival
    Registration/Payment
    The tool carries a copyright held by Elsevier.
  • Resource Utilisation Groups – Activities of Daily Living (RUG-ADL)
    Description
    The Resource Utilisation Groups – Activities of Daily Living (RUG-ADL) is a four-item scale measuring motor function with activities of bed mobility, toileting, transfer and eating. The RUG-ADL tool is also one of 5 assessment tools used in the national Palliative Care Outcomes Collaboration (PCOC) open to participation by all palliative care services.
    Registration/Payment
    No requirement for registration or payment
  • Supportive and Palliative Care Indicators Tool (SPICT)
    Description
    The SPICT™ is a clinical tool developed as a collaborative project between NHS Lothian and The University of Edinburgh Primary Palliative Care Research Group. The SPICT can support clinical judgment by multidisciplinary teams when identifying patients at risk of deteriorating and dying.
    Registration/Payment
    No requirement for registration or payment
  • The “Surprise” Question
    Description
    The surprise question; ‘Would I be surprised if this patient died in the next year? is a simple screening aid to identify patients who might benefit from end-of-life interventions.
    Registration/Payment
    Unless referring to the Prognostic Indicator Guide, reference use to the author - Lynn J, Schuster JL, Kabcenell A: Improving Care for the End of Life: A Sourcebook for Health Care Managers and Clinicians, Oxford, Oxford University Press, 2000, pp 5, 123, 144, 171

Core Resources

Evidence Check

The ACI Palliative Care Network commissioned an Evidence Check to identify and review tools to aid clinical identification of end of life. The Evidence Check sought to identify populations and settings in which clinical assessment tools could be used; barriers and enablers to their implementation and to develop a better understanding of the relevant and potential applicability of the tools in the NSW context.

Evidence Check:  Tools to aid in clinical identification of end of life

Disclaimer: This Evidence Check has identified a growing body of work supporting the development of tools to aid clinical identification of end of life. It is important to acknowledge that prognostication is an inexact science, and the tools identified are clinical aids rather than the answer to the question of specific prognostic accuracy.