Advance care planning (ACP) is the process of discussing and documenting a person’s values, beliefs and preferences about future health needs to guide decision-making about care if an individual does not have the capacity or ability to communicate this information themselves (1, 2). Research indicates that benefits of ACP include higher quality end-of-life care, greater compliance with end-of-life wishes, reduced health care costs and reduction of stress, anxiety, and depression in surviving relatives (3, 5).
ACP includes a range of key activities, ranging from informal conversations about preferences and goals of care, to formal activities such as the completion of legal written documents, such as Advance Care Directives (ACD) (6). An ACD is a specific type of ACP tool completed by an adult with decision-making capacity. An ACD may include: a nominated person or persons to make medical decisions for that adult (i.e. a substitute decision-maker[SDM]); details of the person’s values, life goals and preferred outcomes and treatments, and information about the care that is preferred or would be refused in the event of a life-threatening illness or injury (1).
The laws pertaining to ACDs vary by state across Australia(7). For instance, in New South Wales (NSW) an instructional ACD is recognised by common law rather than legislation and can be in made in writing or spoken. For such an ACD to be valid: (1) the person making it must have had capacity (decision-making ability) at the time of drafting; and (2) it must be made freely and voluntarily (7). For an ACD to be binding on doctors, it must also have been intended to operate in the circumstances that have later arisen(7). There may be doubt about this, for example, where an ACD gives only vague instructions about treatment or there are doubts about currency (e.g., there is evidence the person later changed their mind). Health professionals and ‘persons responsible’ (i.e. someone who is legally able to make medical and dental decisions on behalf of another person who lacks the capacity to give their own consent to treatment (8)), cannot override a valid ACD (1). New South Wales law, as is commonly the case in Western jurisdictions, also recognises the legal appointment of a SDM both by the person in advance of them losing capacity and by a tribunal(7).
Advance care planning can be undertaken by anyone, but it is particularly relevant for those who have been diagnosed with a serious illness. Dementia is a chronic, progressive and terminal disease characterised by symptoms including deteriorating problems with memory, understanding and reasoning that interfere with normal functioning and behaviour(9). In the early stages of dementia, people often have decision-making capacity. Timely engagement in ACP can increase the likelihood that the individual’s preferences for treatment and goals of care are understood(10) and made known to others involved in their care. This can minimise the risk of unwanted medical interventions, as well as unplanned hospital admissions(10). In addition to reducing hospital presentations and costs(11), ACP for people with dementia has the potential to improve compliance with preferences for care, increase the likelihood of dying in a preferred place of death, and reduce depressive symptoms and stress among family members of people with dementia (9, 10, 12–15).
Most medical practitioners state they would use ACP instruments to guide treatment for people who lack capacity, including those with dementia(16, 17). For the benefits of ACP to be realised during a hospital admission, all members of the treating team must have accurate knowledge of the law pertaining to ACP, including the legal validity of ACDs and when they apply, and of who has substitute decision-making authority in the event the patient does not have capacity. A large study exploring knowledge of medical practitioners across three Australian states identified major gaps in knowledge about the law with respect to withholding and withdrawing life-sustaining treatment from adults who lack capacity, even among medical specialists typically involved in end-of-life decision-making (18). The findings of this study suggest that strategies to improve the legal knowledge of medical practitioners may be required to ensure compliance with the law (18). To date however, no research has been conducted to assess the knowledge of Junior Medical Officers’ (JMOs) of the legal validity of ACDs. This is an important gap in the literature. JMOs include trainees, registrars, residents and/or interns. In the course of their work, JMOs are often required to treat patients with dementia, to treat patients presenting to hospital with ACDs, and to initiate conversations about completing ACDs. Understanding the knowledge of JMOs pertaining to ACP law, and their perceptions of barriers to using ACDs in clinical practice, is critical to ensuring JMOs are compliant with the law and facilitating patient choices in care.
This study therefore aimed to determine JMOs:
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Knowledge of the correct order in which people should be approached to be a substitute decision maker if a patient does not have capacity to consent to their own treatment.
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Knowledge of the legal validity of ACDs when making healthcare decisions for persons with dementia, including the characteristics associated with higher knowledge.
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Perceptions of the barriers to enacting ACDs in the hospital setting.