A gradual decline in an older person's physical, cognitive, and functional abilities may signal that their body is struggling to recover and maintain health. When this deterioration does not reverse over time, this can indicate someone is transitioning towards the end of life. [1] Although predicting life expectancy in older adults can be challenging and death may come unexpectedly, recognising these changes should initiate a discussion around what is happening with the older person and their family and a gradual shift towards palliative and end-of-life care. [2]
Why is recognising deterioration important in aged care?
The Strengthened Aged Care Quality Standards require aged care services to have processes to recognise 'when the older person requires palliative care or is approaching the end of their life …' (Action 5.7.1). [3] Timely recognition of irreversible change is needed to enable a good death as it leads to clear communication between all members of the care team, the family, and the person themselves.
Open communication around change can:
- Prepare the older person and their family for what is to come and help with acceptance [4]
- Initiate a whole-person assessment of palliative care needs which may be physical, psychological, social, or spiritual [1]
- Trigger a discussion with the person and their family about what matters to them so that care planning for the future aligns with personal goals and preferences [5]
- Ensure a prompt response to problems, potentially reducing unplanned hospital visits [6]
- Start the process of stopping unnecessary medications or interventions that have minimal or no benefit [1]
- Identify where specialist palliative care services are needed if there are complex symptoms or psychosocial needs [7]
- Support people to be cared for in the place of their choice [8]
- Initiate anticipatory care planning, including prescribing, for the last weeks and months. [9]
Recognising when an older person is nearing the end of life allows care staff to respond effectively to changing needs. This is particularly important in residential aged care facilities, where most residents will receive end-of-life care in place. [10]
Although these changes may be difficult to identify if deterioration is slow, if picked up too late, life-prolonging treatments may be continued, potentially conflicting with the person's preferences for comfort-focused care. [2] Delayed recognition can also lead to increased suffering by leaving physical, emotional, spiritual, and existential needs unaddressed. [4]
What the evidence tells us
People with long-term and life-limiting illnesses often follow a recognisable pattern, or 'trajectory' of decline. [11] Understanding these trajectories can help staff have informed conversations with older individuals and their families, as part of advance care planning and when signs of irreversible deterioration become clear. [12] A general sense of what to expect in the coming months or weeks may help ease distress. [1] In aged care, where people are typically older, frailer, and managing multiple complex conditions, these trajectories may be less predictable. However, they can still help staff anticipate that some conditions may involve sudden, life-threatening episodes, while others progress along a slower, more gradual path toward the end of life. [1]
Common trajectories of decline
There are four typical trajectories of decline. Older people will experience different illness trajectories depending on the primary diagnosis and the presence of other diseases.
Rapid decline
This more predictable form of decline is usually experienced by people with cancer and has a much clearer end-of-life phase. People may stay stable for a while, but their health will decline sharply and quickly during the last months or weeks with weight loss and worsening symptoms and functional ability. [11]
Intermittent decline
Common in organ failure (such as heart, kidney, or lung disease), this pattern includes periods of stable health interrupted by serious episodes or flare-ups requiring acute care to treat the reversible aspects. Each episode makes recovery harder, leading to a gradual overall decline in health. Death may occur unexpectedly at any point along this path. [1]
Gradual decline
A gradual decline in physical and/or cognitive abilities is commonly seen in people with frailty, dementia, and some neurological diseases. There can be a slow, steady loss of physical and mental abilities over time with occasional crises or illnesses along the way that are reversible. Independence also decreases bit by bit. Although there is no specific disease diagnosis with frailty, people will typically decline in overall function during their last year of life. Those with both dementia and frailty tend to experience a more rapid rate of decline. [1]
Multimorbidity trajectory
In people with multiple chronic conditions, the decline can be unpredictable due to overlapping health issues. This pattern involves ongoing, sometimes fluctuating challenges that impact physical, social, mental, and spiritual well-being. [11]
Indicators of decline
Physiological changes related to ageing can alter the presentation of acute illness, meaning that deterioration might not always be accompanied by clear vital sign changes. Recognising subtle, non-vital signs can be particularly valuable in aged care. [13] These signs include:
- frequent, often unplanned hospital admissions for similar health issues
- reduced response to treatments, such as repeated courses of antibiotics for persistent infections
- ongoing fatigue and increasing periods of being bedbound or inactive
- changes in mental alertness such as excessive sleepiness, altered consciousness, confusion
- shifts in behaviour or mood
- worsening skin integrity
- increasing levels of incontinence
- more frequent falls
- reduced appetite leading to weight loss or low muscle mass
- diminished interest in interacting with others or surroundings
- growing dependence on others for care. [9,13]
Requesting palliative care and the reduction of therapies with a preventative or curative purpose may be another indication. [14]
Knowing each resident's usual behaviour and health is key to spotting early, subtle signs of decline. [6] Personal care workers, who spend the most time with older care recipients, are often the first to notice small changes and can quickly alert nursing staff. Nurses can then involve the person's GP to ensure a thorough clinical assessment and bring in external experts, like specialist palliative care if needed. [9] It's also essential to keep the family informed about the person's condition as it deteriorates. [7]
Tools for recognising deterioration
There are tools to assess deterioration. However, those created for hospital patients may be less useful for older people with frailty or complex conditions of ageing who are based in residential or home care settings. [6] Three simple, well-established tools are readily available to aged care services for this purpose.
SPICT
The Supportive and Palliative Care Indicators Tool, or SPICT, can identify people at risk of deterioration with one or multiple advanced illnesses. This makes it suitable for aged care. SPICT highlights signs of poor or worsening health and clinical indicators of illness progression. It helps monitor health changes, increasing illness impact, and growing needs for palliative and support care. [15] The SPICT-4ALL version uses less medical language which makes it more useful when communicating with older persons, family members, and personal care workers. [16]
Surprise Question
The Surprise Question (SQ) asks, 'Would I be surprised if this person were to die in the next year, months, weeks, or days?' A 'no' answer can then serve as a prompt for a care team discussion and a comprehensive review of the person's health and wellbeing. If changes are thought to be progressive and irreversible, it is time to discuss with the older person what is likely to occur and reassess future care wishes. The SQ relies on intuition gained through familiarity with a person and accumulated clinical knowledge and experience. It can therefore have only modest accuracy in predicting when death will occur and should not be the sole basis for treatment decisions. [17-19] However, it can help reflect on a person's palliative care needs when death is a possibility. [18]
Stop and Watch
Stop and Watch is an acronym-based mnemonic. It serves as an early warning tool by prompting personal care workers to reflect on changes they observe in the older person. It is also a way of noting actions that arise from these observations, ensuring there is a clear line of communication between the care worker and the nurse. [20]
Responding to signs of deterioration
Understanding where a person is in their illness journey enables aged care staff to provide proactive, person-centred, and well-planned care. This approach supports consistent care by ensuring the entire team focuses on comfort and avoids unnecessary interventions that may not align with the person's wishes. [12]
Anticipating rather than reacting to problems through regular monitoring means symptoms are well managed. Prompt responses to concerns reduce the likelihood that the older person will be moved between the home to the hospital and back again, which they and their family can experience as physically and emotionally distressing. [8]
Anticipatory prescribing is also important. It means having medicines ready in advance to manage worsening symptoms. [1] GPs in residential and community care can use the National Core Community Palliative Care Medicines List to prescribe for common terminal symptoms, such as pain, breathlessness, noisy breathing, agitation, delirium, nausea, vomiting, and anxiety. [21] For home care, it's important to consider medication availability, necessary equipment, and who can assist with giving the medicine. Family or friend carers may need clear, simple instructions on using 'as needed' (PRN) medications and who to contact for help. If the person can no longer swallow tablets or capsules, a different method of giving medications will be needed. [9]
Ensuring continuity of medical care after hours in residential facilities and home care is also an important response to acknowledging deterioration. This requires knowing what options are available locally in advance of the person needing emergency care. [7] Rapid response teams from hospitals may offer phone support or consult after hours and extended care paramedics may be available. [22] The older person's wishes as documented in the advance care plan or advance care directive should guide any decisions around emergency care.
Staff training
Staff may identify progressive deterioration in a person's condition but be reluctant to act on this information. They may lack confidence in their judgement or ability to communicate this information, [13] or fear upsetting people, causing them to lose hope. [10] Structured training increases aged care staff's confidence and knowledge of how to recognise and respond to deterioration. Well-trained staff are more likely to act on health concerns sooner and manage conditions within the care setting, reducing the need for hospital transfers and continuing the older person's care in a familiar environment. [23] Strengthening interprofessional communication processes is important too, [13] as communication problems between personal care workers and nurses and nurses and doctors are known to impact on effective and timely escalation of issues within the care team. [22]
Care of people with dementia
People with advanced dementia who are likely to die within six months show several distinct signs of deterioration, largely centred on eating and nutrition. These include decreased appetite, insufficient food intake, malnutrition, weight loss, and dry mouth reducing the ability to swallow. Speech and language deficits, reduced mental alertness, and signs of suffering such as screams and indications of pain are also important signs to be aware of. [24]
Considerations for families/carers
Families of older people may be an important source of information on deterioration as they are often attuned to the signs of physical change such as weight loss and eating difficulties. A person-centred approach within the care setting can further support families to notice these signs. Meanwhile, supportive relationships with staff, continuity of care, and open communication enable families to feel comfortable and reassured in a transition to palliative care. [2] The Australian website, CarerHelp, provides practical information in different languages for people supporting someone to die in the home setting. [25]
Implications for home care
A person may wish to die at home with the support of home care services. This will require well-coordinated and planned care across the full multidisciplinary team. Ideally, there will be clear processes for communication and documentation of changing needs accessible to the person's GP, the aged care team including personal care workers, plus the specialist palliative care providers (if involved). Family or friends giving care may require training and support from staff on managing medications to feel confident in their role. They will also benefit from information on what to do in an emergency and where they might gain social support. [1] GPs can use the CareSearch checklist 'Supporting a planned home death' to proactively plan for shared care and to pre-empt potential barriers. [26]
Page created 03 January 2025