Background
Advance care planning (ACP) is a voluntary process of reflecting, discussing and recording preferences and plans for future care should the person loses capacity or the ability to communicate. [1-5,7,8,11,13] Loss of capacity may be temporary (e.g. severe acute illness, delirium), progressive (e.g. cognitive impairment or dementia) or permanent (e.g. stroke or advanced dementia). [6] Old age is associated with a high prevalence of chronic illness, comorbidity, frailty, cognitive impairment, and repeat hospitalisations [6-8,12,15,17] and 50-80% aged care residents have dementia. [6] The process of ACP is, therefore, particularly relevant for older people and aged care residents. [6-8,12,14]
In practice, discussions around end-of-life issues may often not take place or start too late. [9-11,14-16] The available research suggests that the practice of advance care planning in Australia is not common, particularly when compared with other planning documents such as wills. [11,18] Recent research shows that only 38-48% of older Australians in residential aged care had an advance care directive (ACD) [11,19] and only 17% of people with dementia had formally appointed a substitute decision-maker to make medical decisions on their behalf if they could not make or communicate decisions for themselves. [19] Internationally, there is a low prevalence of advance care planning in residential aged care [7,8] despite a majority of residents welcoming the opportunity for such a discussion. [8]
Evidence summary
ACP is intended to enable adults to make plans for their future care. The process encourages people to reflect on their values, preferences, beliefs, and to record how they want to be cared for at a time where they cannot communicate decisions about medical care for themselves. [1-8,11,13] ACP enables adults and their family to consider what care and treatments might or might not be acceptable. [1-5,8,13] ACP is an intensely human process in which a person possibly, at a vulnerable stage in life, is invited to consider their own deterioration and death, and to make plans for navigating various threatening possibilities. [9]
An Advance Care Directive (ACD) may result from ACP. An ACD is a document which provides a legal means for a competent adult to nominate and instruct one or more Substitute Decision-Maker(s) (SDM) and/or to record preferences for future health and personal care. [1,2,4,8,11,12] Substitute decision-makers can be empowered to make decisions about financial matters, and personal, lifestyle and medical matters. [11] The precise powers a person can be given, and the principles they must follow when making decisions, depends on the state and territory laws. [11] Forms of written advance care planning documentation include living will, advance directive (AD), advance health directive, advance personal plan, medical direction, do-not-resuscitate (DNR) order and do-not-hospitalise (DNH) or physician orders for life-sustaining treatments (POLST) and refusal of treatment certificate. [1-4,6,11,12] Detailed information on advance care planning and Advance Care Directives can be found on CareSearch and Advance Care Planning Australia websites.
ACP is most common in the last 12 months or the last days to weeks of life. However, ACP is a beneficial process for all adults, especially those who are at risk of deterioration in health. [3,13,14] In case of loss of capacity, illness or injury, whether expected or not, ACP assists family, friends and health professionals to consider options and make decisions in line with a person’s wishes. [1-3,7,8,13,14]
In Australia, the state and territory government laws vary on ACP and ACDs. ACDs are legally binding documents in every state and territory. [2,3,11] Ideally, in the case of a life-limiting illness, these documents should be completed with input from a treating doctor and a discussion of prognosis, possible complications and treatment options. [7,8,12,13]
ACP can improve end-of-life care in line with an older person’s wishes and satisfaction with care, [3,4,6,8,14] and it can reduce family stress, anxiety and depression. [4,5,14] ACP or ACD is associated with:
- decreased life-sustaining or burdensome treatment [4-6,12,14]
- earlier or increased use of hospice and palliative care [4-6,12,14,16]
- fewer hospital admissions, visits to Emergency Department, days in hospital and deaths in hospital. [4-6,12,14,16]
ACP programs seem to increase compliance of care with patients’ end-of-life wishes [4,5] and the chance of a person dying in their preferred place of death (at home or in their residential aged care facility) rather than in hospital. [6,12] Evidence suggests that advance care planning helps with care planning and shared decision-making for people with end-stage renal disease and heart failure and their families and aligning care with the person’s wishes. [9,16] Given the inevitable loss of capacity and communication, ACP is highly relevant for adults living with dementia. [13,14,20,21] However, as dementia is often not recognised as a terminal illness, participation in ACP, particularly at the time of diagnosis is not always seen as relevant. [20] Ideally, ACDs should be completed with input from a treating doctor and a discussion of prognosis, possible complications and treatment options. [20]
Implementing ACP may be challenging in dementia but important as it allows people with dementia to have a say in their future care and ACP may help to improve the currently poor outcomes for people with dementia at end of life. [13] People with dementia with an ACD in place are less likely to die in hospital or in ICU [13] or undergo burdensome interventions such as ED transfer and hospitalisation in the last 3 months of life. [12]
ACP appears to be associated with reduced healthcare costs in some circumstances [5,6,14] such as for people living with dementia in the community, people in residential aged care [6] or in areas with high end-of-life care spending. [5] There is no evidence that advance care planning increases healthcare costs. [5] Training for healthcare professionals is important [10,15,16] particularly to clarify ACP processes, optimise skills and address staff concerns, and convince staff of the usefulness of advance care planning and to give them confidence to start discussions with patients and their relatives. [9] Organisational, policy and funding support is important for training and implementation of ACP. [9,15,16]
Quality statement
Overall, the quality of the reviews is good.
Page updated 25 May 2021