No / Relatives of people with dementia report that proxy decision-making is difficult and distressing. We systematically reviewed the literature about barriers and facilitators to family carers of people with dementia making proxy decisions, and interventions used to facilitate their decision-making. We searched electronic databases and references of included papers up to February 2014. Two authors independently evaluated study quality using a checklist. We included the 30/104 papers from our search which fitted predetermined criteria and prioritized higher quality papers. Family carers report that proxy decision-making is challenging and can be distressing, especially when decisions are made against the wishes of the care recipient and support from healthcare professionals is lacking. Decision-specific manualized aids have been developed, and while results for those supporting decisions about respite and percutaneous endoscopic gastrostomy (PEG) feeding have shown promising results in pilot trials, no intervention has yet been shown to significantly reduce decisional conflict or carer burden, or increase knowledge in randomized controlled trials; a decision aid for advance care planning increased decisional conflict. We recommend development and testing of decision aids targeting the decisions carers report finding most distressing, including those around where people should live, accessing services, and end of life treatments. Being provided with information to make decisions which have not previously been considered may increase feelings of conflict, suggesting these aids should be carefully targeted.

1 Proxy decision making for incompetent patients Abstract The author of this thesis discusses the applicable Czech legislation on the proxy decision making for incompetent patients and the provision of medical care without informed consent. The thesis is divided into six parts, while the first part is devoted to the definition of the basic terms that are directly related to this topic and which are repeatedly used herein. These basic terms are the following: health services and healthcare, informed consent and the patient. The second chapter is devoted to sources of law, which are divided into three levels - international sources, European Union law and national sources. Within the national regulation, attention is focused mainly on Act No. 372/2011 Coll., On health services and conditions of their provision, as amended. It also outlines the issue of the duality of legal regulation, that was caused by the adoption of Act No. 89/2012 Coll., Civil Code. The third chapter deals with surrogate consent, attention is paid mainly to resolving conflicts of opinions and to the best interests pricniple, as to the key factor when granting the proxy consent. The fourth chapter is devoted to the institute of previously expressed wishes. The fifth chapter analyses the issue of providing health services to vulnerable...