Assess Palliative Care Needs
Palliative care is person and family-centred care provided for a person:
- with an active, progressive, or advanced disease
- who has little or no prospect of cure
- who is expected to die, and
- for whom the primary goal is to optimise the quality of life.
Palliative care helps people live their life as fully and as comfortably as possible with a life-limiting or terminal illness. It identifies and treats symptoms which may be physical, emotional, spiritual or social. [1]
Assessing palliative care needs in residential aged care is crucial because it ensures that older people with life-limiting illnesses receive comprehensive, person-centred care. This means that all needs are addressed including: Physical, psychological, social, and spiritual needs.
Early detection and correct assessment of palliative care needs is an ongoing process, essential for care planning and continuity of care.
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Who should have an assessment
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How often to assess
All older people who are identified as being at the end of life by using the SPICTTM (184kb pdf) screening tool should have a palliative care needs assessment. The holistic life experiences of a person, such as age, culture, religion, ethnicity, or experience should be considered.
Re-assessment should occur regularly and at key transition points in the older person’s trajectory, for example:
- if there has been a significant functional or medical decline
- if there is a sudden acute event
- if discussions around goals of care are required, particularly around futile treatment
- following hospitalisation.
There are relevant forms and templates that can be used to support planning. However, forms and requirements vary between states and territories for ACP, ACDs, and appointing substitute decision-makers. Your organisation may also have relevant documents and resources you can use to facilitate ACP.
- To learn about ACP documents, including ACDs in your state or territory at Advance Care Planning Australia’s Create Your Plan.
- Go to the ELDAC End of Life Law Toolkit for helpful information and resources on ACDs, case studies and mythbusters.
- The ELDAC Dementia Toolkit includes ACP resources to support people living with dementia.
- The ELDAC Our Diversity webpage has information and resources on supporting ACP for diverse groups.
An ACD can only be followed when the person no longer has capacity for the decision, except in the Australian Capital Territory. The ELDAC End of Life Law Toolkit has a factsheet that covers ACDs in more detail.
ACP documents may be kept with the person, substitute decision-maker(s), their GP, or the residential aged care provider.
In residential aged care, Advance Care Directives/Planning documents should be:
- be stored safely
- be accessible to team members and other visiting service providers involved in decision-making about care
- accompany an older person when transferred to hospital.
Refer to your own organisation’s policies and procedures when considering how to manage Advance Care Directives/Planning documents within your setting. Support the older person in nominating an authorised representative to upload their ACP documents to My Health Record. This portal can be securely accessed when needed.
The Palliative Care Needs Assessment Guidance provides a framework across four domains:
- Domain 1 - Physical Wellbeing
- Domain 2 - Social and Occupational Wellbeing
- Domain 3 - Psychological Wellbeing
- Domain 4 - Spiritual Wellbeing
The Palliative Care Needs Assessment poster (184kb pdf) provides a useful, one-page summary, as a reference. The poster includes domain approaches, what to do after symptoms are identified and actions to take. These four domains may already be within your service’s clinical system (either in electronic or hard copy notes). Review the system and see if all the domains are covered. Within each of these domains there are specific tools that might be useful to understand the needs of the older person, and their family and carers.
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Physical wellbeing
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Social and occupational wellbeing
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Psychological wellbeing
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Spiritual wellbeing
Each older person will have an individual symptom profile and requires a comprehensive assessment.
Symptom Assessment Scale (SAS)
The SAS can be used as a self-report tool. It provides a report of whether a symptom is present and an indication of the impact of that symptom. The SAS is based on a rating scale of seven common symptoms and has space to add additional symptoms. SAS also allows for rating by proxy when assessing an older person who has cognitive impairment or is non-verbal. The Palliative Care Outcomes Collaboration (PCOC) has a guide explaining the Symptom Assessment Scale (577kb pdf).
Where a symptom has been identified, further assessment using specific tools can provide more details. This might help identify the underlying cause of the symptom or assist with treatment options. The following is a suggested list of tools in addition to the SAS.
Pain Assessment
Dyspnoea (shortness of breath) Assessment
Delirium Assessment
- 4AT (273kb pdf). A screening tool used as an initial assessment to detect delirium and cognitive impairment.
Nutrition Assessment
Oral Health Assessment
Frailty Assessment
Pressure Ulcer Risk
This domain explores the person’s experience in relation to:
- their background
- family and carer support
- emotional and social support
- practical concerns, and
- impact on their usual functioning.
For instance, consider the older person’s:
- Experience of family/carers and relationships: 'Do you have any concerns or worries about your family/carers or personal relationships?'
- Experience of support: 'Who is around to support you? What kind of support do they give? Has this been helpful?'
- Practical concerns, including any worries about finances, sorting affairs, and advance care planning.
Older people with life-limiting conditions often have psychological concerns. These can include symptoms of anxiety, depression, and past experiences of trauma. Proactive assessment of these concerns is important.
A person’s spiritual care includes faith, cultural background, beliefs, traditions, and any other ways an older person makes sense of their world and experience. Older people have the right to express their spirituality in a way that is meaningful for them. The identification of spiritual needs and offering of basic spiritual care is the responsibility of all who work in aged care, in ways that are appropriate to their role.
- Gain a better understanding about delivering palliative and end-of-life care by listening to the ELDAC podcast series 'The What to do, When and How'.
- Watch the ELDAC Assess Palliative Care Needs educational video that describes the importance of person-centred and holistic assessment. The video identifies the four domains of wellbeing used in a palliative care assessment. It emphasises the use of care planning to support end-of-life care.
- Use the ELDAC Case Study on Dorothy to build your understanding of how to assess palliative care needs within the four domains in the framework. These include physical, social and occupational, psychological and spiritual needs.
- The free Equip Aged Care Learning Modules are produced by the Wicking Dementia Research and Education Centre at the University of Tasmania. A range of aged care related topics are covered, including palliative and end-of-life care.
- The Agency for Clinical Innovation hosts a free palliative care video library. These videos were developed with Australian healthcare specialists to assist in the delivery of appropriate palliative care. There are videos on topics for physical and clinical, psychological, and spiritual and cultural.
- Learn how to use the Symptom Assessment Scale (SAS) from this short video by the Palliative Care Outcomes Collaboration (PCOC).
- There is guidance available for assessing specific symptoms:
- Non-verbal pain assessment. The Agency of Clinical Innovation has a video discussing where to start in a pain assessment and different strategies to use.
- 4AT. The about the 4AT web page includes the user guide, scoring summary, FAQs and case studies.
- Braden Scale. Information on pressure injuries and scoring the Braden Scale.