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)[1]

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 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

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.

Last days of life toolkit

A suite of tools and resources to facilitate early identification of patients who are dying, planning for optimal symptom management and addressing social, spiritual and cultural needs.

Needs Assessment Tool for Carers [NAT-C]

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.

Needs Assessment Tool: Progressive Disease (NAT-PD)

Clinical assessment tool aiming to assist in matching the types and levels of need experienced by people with progressive chronic diseases (e.g. cancer, heart failure, COPD) and their caregivers with the most appropriate people or services to address those needs.

Needs at the End-of-Life Screening Tool (NEST)

Clinical assessment and outcome measurement instrument for end of life care (Needs, Existential, Symptoms, and Therapeutic).

Palliative Care Phase

The Palliative Care Phase tool is commonly used in clinical practice to describe a patient's current condition or phase-assessment; stable, unstable, deteriorating, terminal and bereaved. The palliative care phase is determined by a holistic clinical assessment which considers the patient and their family and carers' needs. The Palliative Care Phase 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.

Palliative Care Problem Severity Score (PCPSS)

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.

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.

Carers

Caregiver Strain index

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.

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.

Registration or 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)

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.

Palliative Care NSW

Palliative Care NSW is the peak body in NSW representing palliative care providers and those with an interest in palliative care. This link takes you to the Carer Hub on their website with resources to support carers supporting someone as they approach the end of their life.

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.

SPIKES Tool

A tool that provides a framework for communicating distressing information in an organised and empathetic way.

Quality of life / spiritual

FICA Tool for Spiritual Assessment

A short series of questions opening up the matter of existing sources of strength and support within conversations in the clinical setting.

Registration or payment The tool is copyright protected and requests for permission should be directed to the George Washington Institute for Spirituality and Health

McGill Quality of Life (MQOL)

MQOL was designed to measure quality of life of people at all stages of a life-threatening illness, from diagnosis to cure or death. MQOL assesses general domains applicable to all patients, incorporates the existential domain, balances physical and non-physical aspects of quality of life, and includes both positive and negative influences on quality of life. MQOL is a patient-reported instrument that employs 16 items plus a single-item global scale, each with a 2-day time frame. Five domains (physical well-being, physical symptoms, psychological, existential, and support) were identified through principal component analysis, and each of the domains is scored as a separate sub-scale.

Registration or payment Contact with Dr Robin Cohen confirmed that in the case of non-profit organisations, completion and return of a User and Information Registration Form and acknowledgement of the source of the tool in any publications or professional activities where it is used, will suffice

Measuring the Quality of Life of Seriously Ill Patients (QUAL-E)

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 or 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.

Other tools and resources

10 Things to know before you go

A comprehensive 2 hour online workshop that empowers individuals with the knowledge and resources they need to plan well for themselves or family member in the final stages of life. A supportive, digital learning environment to build confidence to have essential planning conversations.

NSW Health Falls Risk Screening Tools

1. Ontario Modified Stratify (Sydney Scoring) Falls Risk Screen 2. Falls Risk Assessment and Management Plan (FRAMP)

Outcome measures - palliative care

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.

General symptom assessment tools

Beck Depression Inventory

A widely used multiple-choice self-report inventory for measuring the severity of depression. Designed for ages 13+ and used in a variety of settings, including palliative care. Important in terms of differentiating between grief and depression in this context. The original form comprised 21 items while the rapid version (BDI-SF) comprises 13 items.

Registration or payment Registration and payment required. The Psychological Corporation administers the rights for the Beck scales under contract from Dr Beck. This tool can be purchased through www.psychcorp.com.

Braden Pressure Ulcer Assessment or Braden Scale

A pressure ulcer risk scale based on six unique indicators with total scores ranging from 6-23. Lower scores are associated with higher levels of risk for pressure ulcer development. The scale has been widely validated in palliative care populations demonstrating good sensitivity and specificity

Confusion Assessment Method (CAM)

The CAM instrument is brief (less than 5 minutes) and is used to screen for overall cognitive impairment and has demonstrated good psychometric validity with close conceptual fit to DSM-IV criteria for delirium. A training manual is available online.

Distress Thermometer

The distress thermometer (DT) has been widely used in research and cancer service settings to detect clinically significant distress. One rating scale (distress thermometer) (0- 10) 'Extreme distress' to 'No distress'. Plus 33 statements (Yes/No). Requirement for registration and payment: As the tool is copyright protected.

Registration or payment The NCCN Distress Thermometer and Problem List may not be used for any commercial purpose, including publication in journals, text books, etc., without the express written permission of NCCN. If you would like to request permission to use the tool for any purpose other than direct treatment of patients or use in grants or research, please visit the NCCN Permissions Request Form.

Edmonton Symptom Assessment System (ESAS)

The ESAS measures the severity of common symptoms experienced by patients receiving palliative care.

MOCA or Montreal Cognitive Assessment

MOCA is designed to aid health professionals in the detection of mild cognitive impairment. The MOCA is brief, well-validated and available in 35 languages.

Nursing Delirium Screening Scale (NuDESC)

The NuDESC is an observational 5-item scale used to assess delirium. The scale has reportedly demonstrated good psychometric validity and reliability, has a close conceptual fit to DSM-IV criteria, and due to its short length, can be completed at the end of each nursing shift providing continuous 24 hour assessment.

Other pain assessment tools (ELDAC)

1. PQRST method 2. Clinical assessment 3. Abbey pain scale 4. Pain numeric rating scale 5. Verbal descriptor scale (pain thermometer) 6. Modified resident’s verbal brief pain inventory (M-RVBPI)

Pain Assessment in Advanced Dementia Scale (PAINAD)

This tool was developed to assess pain in patients who are cognitively impaired, non-communicative, or suffering from dementia and unable to use self report methods to describe pain.

Patient Assessment of Constipation Quality of Life (PAC-QOL)

The PAC-QOL is an instrument generated from the literature, expert consultation and patient’s reports to evaluate constipation over time.

Registration or payment Registration and payment is required in the instance of funded studies or those in other languages

PEPSICOLA assessment guide

Represents an aide-memoire considering the patients holistic needs described in acronym (PEPSI COLA; e.g., S refers to Social support). Individual domains identify possible patients concerns via cue questions. Rationale is for a documented assessment that can be transferred to relevant health professionals involved in multidisciplinary team care. Intended to complement medical discharge summary to document unique care aspects of palliative care patients.

Registration or payment Registration is required as the guide is copyright protected (part of the © National Gold Standards Framework Centre Thomas K 2009) but noted no payment is required.

Prolonged Grief Disorder [PG -13]

PG-13 is a diagnostic screening tool for PGD. A person who endorses experiences consistent with PGD are likely to benefit from specialised assessment by a mental health professional and treatment. The PG-13 was revised in 2021 to reflect contemporary understandings of PGD and incorporate more user-friendly language (PG-13R). PG-13 has been widely used in epidemiological and clinical research settings in western and non-western countries; however, there is a need for future research to confirm psycho-metric properties in more ethnically diverse populations. It may be used clinically as a screening tool or as part of a comprehensive assessment to help identify probable PGD. (2021) Prigerson, H. G., Boelen, P. A., Xu, J., Smith, K. V., & Maciejewski, P. K. (2021). Validation of the new DSM-5-TR criteria for prolonged grief disorder and the PG-13-Revised (PG-13-R) scale. World psychiatry : official journal of the World Psychiatric Association (WPA), 20(1), 96–106.

Symptom Assessment Score (SAS)

The Symptom Assessment Scale (SAS) describes the patient’s level of distress in response to seven of the most common symptoms experienced by palliative patients; difficulty sleeping, appetite problems, nausea, bowel problems, breathing problems, fatigue and pain. The instrument is designed to be a patient rated tool but also allows for rating by proxy. The SAS is also one of 5 assessment tools used in the national Palliative Care Outcomes Collaboration (PCOC) open to participation by all palliative care services.

The Brief Fatigue Inventory (BFI)

The Brief Fatigue Inventory (BFI) is used for rapid assessment of the severity and impact of cancer-related fatigue. An increasing focus on cancer-related fatigue emphasized the need for sensitive tools to assess this most frequently reported symptom. The six inventory items correlate with standard quality-of-life measures. The BFI Tool - https://www.ons.org/assessment-tools/brief-fatigue-inventory-english

Registration or payment Registration is required as the tool is copyright protected but no fees are required for clinical practice

Psychosocial assessment

Anxiety and depression checklist (K10)

A self-reporting tool that measures psychological distress and as a measure of outcomes following interventions. The tool comprises 10 questions and uses a five-value response for each question which can be scored from one through to five.

Depression Anxiety Stress Scale (DASS21)

A self-reporting tool that comprises a 42-item scale that measures depression, anxiety and stress/tension.

Hospital Anxiety and Depression Scale (HADS)

The HADS was originally designed to detect symptoms of depression and anxiety in patients attending medical outpatient clinics and excludes somatic symptoms. The scale comprises 14 items, which are summed to provide a total score (HADS-T), as well as two subscales, purporting to measure anxiety (HADS-A) and depression (HADS-D).

Patient Dignity Inventory

The PDI is a Canadian tool designed to give clinicians a broad overview or 'snapshot' of an individual in their care is doing at any point in time. In the PDI questionnaire. Patients are asked to rate their current condition on the basis of 25 different indicators against a five point scale. Each question is based on empirical research into the most common factors influencing people's personal sense of dignity.

Aboriginal and Torres Strait Islander

A Journey into Sorry Business

This resource was developed by South Western Sydney PHN in 2021. Aboriginal people refer to the period of cultural practices and protocols associated with death as Sorry Business. Sorry Business is an important time of mourning that involves responsibilities and obligations to attend funerals and participate in other cultural events, activities or ceremonies with the community. We value the importance of advance care planning yarning so this resource has been developed to provide culturally appropriate, respectful, and mindful information to encourage Aboriginal people in opening up conversations about their rights, wishes and how to plan ahead when circumstances change through life.

Aboriginal Health and Medical Research Council - Palliative Care Resource Centre

The My Journey to Dreaming Diary is a place for people to keep personal and medical information and includes mindful activities to prompt reflection, wellness, and gratitude. The Journey to dreaming toolkit has been developed to provide high quality information to help Aboriginal and Torres Strait Islander families and their healthcare workers provide family-centred palliative and end-of-life care.

Advance Care Yarning Decision Making for End of Life For Aboriginal People in lutruwita/Tasmania

These guidelines aim to help Aboriginal people, their families, and their community who live in Iutruwita/Tasmania to better understand their choices at end-of-life and how to share them with medical and health professionals through advance care yarning.

Gwandalan Project – e-learning modules

These e-learning modules explore aspects of Aboriginal and Torres Strait Islander history and culture relevant to the palliative and end-of-life care journey, and the commonly practiced cultural protocols associated with returning to spirit (death and dying). It will support health professionals to provide more impactful, meaningful and culturally safe and responsive palliative care for Aboriginal and Torres Strait Islander patients, families and communities.

Clinical assessment tools

Beers Criteria for Potentially Inappropriate Medication Use in Older Adults

A list of potentially inappropriate medications in terms of their use within elderly patient populations.

Cancer pain management in adults

Cancer Council Australia guidelines for health professionals working with cancer patients. Intended to supplement (not replace) clinical judgment and provide short, point-of-care recommendations for screening, assessment and management of cancer related pain.

COPD –X Plan or COPDX

Australian decision support guidelines for clinicians working with chronic obstructive pulmonary disease.

Delirium screen for older adults

This resource assists you in looking for: • Bladder symptoms, including changes in urine, incontinence and genital discomfort • Changes in bowel habits, including pain, cramps, diarrhoea and appetite • Pain indicators, including a history of conditions, physical appearance, recent surgery and skin integrity • Signs of infection, including localised infection, evidence of pneumonia and pressure sores • Changes in medication

Delirium screen for RACFs

This resource assists you in looking for: • Bladder symptoms, including changes in urine, incontinence and genital discomfort • Changes in bowel habits, including pain, cramps, diarrhoea and appetite • Pain indicators, including a history of conditions, physical appearance, recent surgery and skin integrity • Signs of infection, including localised infection, evidence of pneumonia and pressure sores • Changes in medication

Faces Pain Scale [paediatrics]

A tool designed to assess pain levels in paediatrics and said to be more accurate than self-reports

Residential Aged Care Toolkit

Provides information and guidance to support palliative care and advance care planning for residents and their families.

References

  1. NSW Ministry of Health. The NSW Government plan to increase access to palliative care 2012-2016. Sydney: NSW Ministry of Health; 2012.

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