Respecting patient choices – Literature review

Executive Summary
Ninety articles were reviewed, and seven key themes were identified, along with some key lessons and suggestions for Australian research.
 
1.1 Impact of culture and ethnicity
Culture and ethnicity profoundly influences how people treat illness and death, and so whether they regard advance directives as useful and positive. Non-Anglo groups tend to have a lower awareness and take-up rate of ADs compared to Anglo groups.

1.2 Cultural diversity
Cultures vary considerably in people's attitudes and practices concerning illness and death, and so the appropriateness of ADs and the best strategies to encourage implementation also vary.

1.3 Support for and barriers to advance directives
Why a particular culture or community may support or oppose the use of ADs are grounded not only in differing health values and practices-particularly religious beliefs-but are also connected to specific historical and socio-political contexts.

1.4 Western autonomy versus family-based decisions
Many non-Western cultures emphasise the importance of the family over the lndividual, and this affects their attitudes to whether ADs are appropriate, particularly in their standard Western form. However, this does not necessarily mean that control and autonomy are not important; modified ADs, or related concepts and tools such as power of attorney, may still have a role to play. Western health professionals should also be wary of generalisations.

1.5 Cross-cutting layers of culture
There is great variation within cultures, including subcultures and power-connected differences such as age, gender and sexual identity, which can shape beliefs and practices concerning illness, death, and ADs. Cultures and communities can also vary across space (e.g. urban compared to rural) and over time, and health professionals should be wary of stereotyping.

1.6 Values, attitudes and practice of health professionals
The attitudes and practices of health professionals have an important influence on how ADs are publicised and used, and stem not only from the professional's particular sericultural location, but also from their personal values. This means that professionals' views and practices may vary as much as patients' and families', and professionals need to be aware of the impact of their own beliefs on their practice in relation to ADs.

1.7 How to better publicise and implement ADs
While research results are often mixed about 'what works' in relation to publicising and implementing ADs, some US evaluation work offers useful insights. Strategies involving local communities in education initiatives and the provision of specific resources such as Videos, kits and pamphlets have all proved useful when geared to particular contexts.

1.8 Key lessons
Advance directives are subject to significant cultural resistance that cannot be simply explained as lack of knowledge; it may be associated with lack of utility. Some of the literature suggested that the focus of ADs might be better shifted from death and broadened to include non-disclosure and other alternatives such as recognition of family surrogates and durable power of attorney.

1.9 Future research
Areas needing more research include cultural complexity and conflict within cultures, especially as communities enculturate in Australia, the potential impact on these communities of broadening the focus of ADs, and attitudes and practices regarding ADs among different health professionals in Australia. There is a particular need for rich qualitative data in relation to the use of and attitudes to ADs, proxies etc. by different cultural groups in Australia. Research could also investigate how successful US techniques might be extrapolated to Australia, and what useful techniques might be borrowed from outside the health field. Australian action research would then be needed to pilot some approaches in depth.

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