Background
A palliative approach to care can improve the quality of life for people with a life-limiting illness and their families. [8,10,13] The majority of Australians would prefer to die at home. [14-16] To fulfil a person’s wish to be cared for and/or to die at home often requires extensive assistance from family, unpaid/paid carers and support services. [14] Well coordinated care is important for older adults at end-of-life particularly those with multiple chronic conditions. [13] Coordinated palliative care can reduce resource utilisation therefore reducing health costs and hospitalisations. [13] More can be read in Care Coordination.
Planning for predictable emergencies is possible and is essential for home palliative care. It involves sensitive preparation of the person and family carers and, at times, extra support services (e.g. community palliative care, personal alarm systems, out-of-hours telephone support or visits, plans for transfer from home to another site of care if needed, or mobilising other family members). [2,8,9] Evidence suggests that home palliative care services with out-of-hours support (telephone support or visits) greatly assist dying people to be cared for at home and decrease hospitalisations and presentations to emergency rooms. [8,9]
Evidence Summary
Proactive and pre-emptive end-of-life care discussions can help plan care in line with a person’s wishes including what to do in an emergency. [1,4] These discussions may be helpful in putting appropriate supports in place. [2,8,9] Timely access to medicines may allow prompt symptom relief and avoid distress or a crisis. Anticipatory prescribing in the dying/terminal phase reduces the risk of distress and crises. [1,2,10]
A number of crises can occur towards the end of life some of which may be unexpected and some of which may be anticipated. [1,2] A crisis or an emergency is a sudden deterioration in a person’s condition which requires an urgent response. [1-4] The response to a crisis will depend on the person’s overall condition and their wishes or those of the appointed substitute decision-maker(s). [1,4]
In an emergency, if the person is not able to express their wishes, documents such as an Advance Care Plan and Advance Care Directive (completed by the person), treatment plans, goals-of-care plans and resuscitation plans (completed by a doctor) will guide the choice of emergency treatment. [1,4,6] These documents should be readily available in case of an emergency. [4]
In an emergency, if the person is not able to express their wishes and there is no clear Advance Care Plan, emergency treatment will generally be initiated. This may include intensive care admission. [6]
The CareSearch page Emergencies has information about common palliative care emergencies.
Crises with dementia
Along the dementia trajectory, various stressors can cause a significant imbalance or disruption with the need for an immediate decision to resolve the situation, i.e. a crisis. [11] Counselling after diagnosis and regular health checks by the GP can help prevent or identify early any acute medical conditions or malnutrition which, in turn, can help mitigate stressors for the person with dementia. [5,11] Appropriate support and education can mitigate stressors for the carers. [5,11] Attention to the environmental, physical and psychological needs of persons with dementia can help prevent crises in residential aged care. [5,11]
Behavioural and psychological symptoms of dementia (BPSD) can also impact the person with dementia and/or their carers to such an extent that they reach a crisis point. [5,11] Behavioural crises often occur in community and care settings and are more common in the moderate to advanced stages of dementia. [5] Carers of a family member with dementia may live with a continual build-up of BPSD until a crisis. [12] This may be when their experiences first become evident to health professionals and may be a tipping point in the management of the person with dementia (e.g. hospital admission and/or placement in residential aged care facility) [5,12] Agitation and aggression are the most common expressions of behavioural crises with dementia. [5]
Numerous stressors/predictors of crisis have been identified and many factors will determine the solution. Therefore, it is very difficult to prevent or plan for all crises in dementia care. [5,7,11]
Quality Statement
There is very little evidence relating to palliative care crises. Two systematic reviews focussed on crises in dementia. [5,11] A literature review relating to 24/7 on-call support for adults was included. [9] National guidelines for emergency care [1] and regional [10] guidelines for anticipatory prescribing for general adult population were included. No guidelines specific to older adults were found. One included systematic review focussing on home palliative care considered out-of-hours care. [8] Other literature was included to give context to this topic. [2-4,6,13-16]
The included studies are of acceptable quality.
Page updated 06 July 2021