Essential Component 5
Care is based on the assessed needs
of the patient, their families and carers

Care should be based on the assessed needs of the patient, the carers or family and not solely on their diagnosis or other fixed criteria

Why is this an Essential Component?

Evidence for inclusion

Care should be based on the assessed needs of people approaching the end of life, their families and carers, rather than on diagnosis, age or prognosis.

Working to address these assessed needs can support people, their families and carers to remain in their preferred place of care for as long as possible.

Ensuring that care is provided based on assessed need, rather than diagnosis or prognosis ensures that health and social resources are used efficiently and effectively.

Ensuring that all people who are at risk of unmet needs as they approach the end of life receive care in accordance with the use of validated assessment tools improves patient outcomes and experience.

'Gaps in assessment skills and referral processes often mean that the recognition that a person is dying does not occur until very late in their life, leaving them and their family and carers very little time to come to terms with the approaching death and denying them the time to consider options such as dying at home.'(NSW Ministry of Health, 2012)

The delivery of needs-based care reduces unnecessary burden and distress on patients, their families and carers.

Intended beneficial outcomes

  • All people receive timely, quality care in a setting appropriate to their assessed needs, values and preferences, and in consultation with the person, their families and carers.
  • Care is delivered in accordance with all relevant quality and safety standards.
  • All people are assessed using accepted assessment tools that identify needs particular to their end of life care.
  • Cultural, spiritual and other values of patients, their families and carers are respected.
  • Partnerships with Aboriginal stakeholders are fostered to address the health needs and interests of Aboriginal peoples.
  • Patients’ pain and or other physical symptoms will be effectively controlled.
  • Psycho-social and spiritual support is available and offered.
  • Access to grief and bereavement support is available and offered.
  • Patients, families and carers are provided with appropriate equipment to ensure a safe home environment.
Care should be based on the assessed needs of the patient, the carers or family and not solely on their diagnosis or other fixed criteria

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

  • 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
  • Caregiver Strain index
    Description
    The Caregiver Strain Index is 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.
    Registration/Payment
    No requirement for registration or payment
  • Carer Support Needs Assessment (CSNAT)
    Description
    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.
    Registration/Payment
    The CSNAT is copyright but available, free of charge, for use by practitioners supporting carers. The authors have a registration process and provide a licence for services using the tool. For further information, contact one of the CSNAT team: Dr Gail Ewing, University of Cambridge: ge200@cam.ac.uk or Prof Gunn Grande, University of Manchester: gunn.grande@manchester.ac.uk (as per advice 22/06/2015)
  • 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.
  • Falls Risk Assessment Tool (FRAT)
    Description
    Clinical risk screening and assessment tool developed by the Peninsula Health Falls Prevention Service (Victoria).The tool has 3 sections (falls risk status: risk factor checklist: action plan) and in its complete form, the tool has both a screening and assessment component.
    Registration/Payment
    No requirement for registration or payment
  • FICA Tool for Spiritual Assessment
    Description
    A short series of questions opening up the matter of existing sources of strength and support within conversations in the clinical setting.
    Registration/Payment
    The tool is copyright protected and requests for permission should be directed to the George Washington Institute for Spirituality and Health
  • Measuring the Quality of Life of Seriously Ill Patients (QUAL-E)
    Description
    QUAL-E is a short interview-based measure of quality of life towards end of life designed to assist in the evaluation of the quality and effectiveness of interventions targeting improved care at the end of life.
    Registration/Payment
    Professor Steinhauser, Duke University has confirmed the QUAL-E is an open access tool able to be used citing the publication as a reference.
  • Needs Assessment tool for Carers [NAT-C]
    Description
    A two part intervention to identify carers’ needs to be systematically identified and managed by their GP. It comprises (a) a brief checklist of common concerns, the Needs Assessment Tool – Carers (NAT-C); and (b) a matching GP Toolkit of resources. Carers complete the NAT-C and use it to identify their concerns and needs to the GP.
    Registration/Payment
    No requirement for registration or payment
  • Needs Assessment Tool: Progressive Disease (PC-NAT)
    Description
    Clinical assessment tool aiming to assist in matching the types and levels of need experienced by people with progressive chronic diseases (eg cancer, heart failure, COPD) and their caregivers with the most appropriate people or services to address those needs.
    Registration/Payment
    No requirement for registration or payment
  • NEST - Needs at the End-of-Life Screening Tool
    Description
    Clinical assessment and outcome measurement instrument for end of life care (Needs, Existential, Symptoms, and Therapeutic).
    Registration/Payment
    No requirement for registration or payment
  • Palliative Care Assessment tool [PCAT]
    Description
    The PACA form comprises three rating scales. Symptoms are scored on a four-point scale from zero for 'absent' to three for 'daily life dominated by the symptom', assessing the severity of each symptom from the patient's perspective, using a semi-structured interview. Insight is assessed by an observer on a five-point scale, and plans for future care were asked of the patient and recorded on a four-point scale. Facilitation of the appropriate placement for hospital patients is a fundamental element of this measure.
    Registration/Payment
    Reference use to the authors Ellershaw J, Peat S, Boys L. Assessing the effectiveness of a hospital palliative care team. Palliative Medicine. 1995; 9:145-5
  • Palliative Care Outcomes Scale [POS]
    Description
    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.
    Registration/Payment
    Registration is required. No payment is required
  • Palliative Care Problem Severity Score (PCPSS)
    Description
    The Palliative Care Problem Severity Score (PCPSS) is a clinician rated screening tool to assess the overall degree of problems within four key palliative care domains (pain, other symptoms, psychological/spiritual and family/carer). The PCPSS 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
  • 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

Core Resources

Symptom Assessment Resources

Additional Tools for Specific Populations

Additional Resources for Specific Populations

Symptom Assessment Tools