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[1]; van der Steen et al, 2014[2]; Temel et al, 2010[3]; Zimmerman et al, 2014[4]).
Earlier recognition also increases capacity to improve support to carers and families, especially where the patient’s goals of care include remaining at home.
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.
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 or payment Communication with the CEC regarding use is recommended - CEC-AmberCare@health.nsw.gov.au
Palliative Prognostic Index (PPI)
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 or payment The tool carries a copyright held by Elsevier.
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 or 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
Australia-Modified Karnofsky Performance Score (AKPS)
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.
FACIT-Pal: Functional Assessment of Chronic Illness Therapy - Palliative Care
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 or 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.
Resource Utilisation Groups – Activities of Daily Living (RUG-ADL)
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.
Supportive and Palliative Care Indicators Tool (SPICT)
A tool to help clinicians identify people with deteriorating health using general indicators of poor or deteriorating health and clinical signs of life limiting conditions. The tool aids assessment and care planning. SPICT looks at health status and is not a prognostic time frame.
The Gold Standards Framework (GSF) Proactive Identification Guidance (PIG)
A guideline that aims to identify patients early who may be nearing the end of life who may require additional supportive care. This tool is used to identify people based on three different end of life trajectories – those who are experiencing rapid, predictable decline (e.g. Cancer), erratic decline (e.g. organ failure) and gradual decline (e.g. Frailty and Dementia). The GSF PIG comprises three steps – 1) Using the Surprise Question (Would you be surprised if the patient were to die in the next year, months, weeks, days?). 2) Identifying general indicators of decline and increasing needs; and 3). Specific clinical indicators related to the three trajectories.
Assessing and Managing Symptoms
Australian Government funded PCC4U learning resource focusing on life-limiting conditions and their associated differential patterns of illness referred to as illness trajectories.
Registration or payment Registration or payment is not required but permission is required to reproduce (e.g. in publications).
Early palliative care for advanced illnesses
Practical caring involves undertaking a coordinated assessment as part of end of life care.
Dr Kirsty Boyd Honorary Clinical Senior Lecturer in Palliative Care, Primary Palliative Care Research Group, Usher Institute, University of Edinburgh, SPICT International Programme Lead, RED-MAP Framework Lead
Through four clinical perspectives this forum explored how identifying when someone may be in the last year of life is an essential element of good patient care. Presenters also discussed some of their local challenges, barriers and ways forward.
Speakers
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.
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.
