Dementia Advance Care Planning - Top 11 Recommendations

The EAPC has just published: "Future policy and research for advance care planning in dementia: consensus recommendations from an international Delphi panel of the European Association for Palliative Care" in Lancet Longevity. 

This is an international consensus on government actions to ensure regulation around ACP, equity in access to ACP for people with dementia, and dementia-inclusive approaches and conversations to express patients’ values. Here are their 11 recommendations:

1. Public awareness should be raised of the importance of ACP for people with dementia, including the aims of ACP, how to engage in ACP, its legal status, and how to access resources to support ACP
2. Governments, health insurers, and health-care organisations should secure appropriate funding and the organisational support needed for ACP in dementia
3. Human rights include the right for people with dementia to decide about care, to appoint a proxy decision maker or to participate in shared decision making as preferred, the right to receive support in decision making, and to prevent undue influence as a principle
4. Regulation around directives Governments and health-care organisations need to create reliable and secure systems to store copies of advance care directives (living wills) and documentation of ACP conversations in electronic medical and nursing files if available, so that these are easy to retrieve, transfer, and update 
5. Advance care directives (living wills) need both a structured format to enable easy identification of specific goals and preferences in emergency situations and an open text format so people can describe their values, goals, and preferences, and also a description of specific situations when the directive applies
6. Laws should recognise advance care directives (living wills) as legally binding guidance of medical decisions about care and treatment the person does not want, if the situation and condition of the person with dementia clearly matches the situation and condition anticipated by the person with dementia at the time the advance care directive was developed
7. Regulation around directives Governments and health-care organisations should use conceptualisations of ACP that support living well with dementia from diagnosis until end of life 
8. Governments should advocate routine discussions of health-care needs, particularly in the context of frailty and deterioration
9. Governments and health-care organisations should use ACP approaches that are targeted and refined enough to ensure optimal value to people with dementia and their families
10. Governments should ensure equity of access to any measures stimulating ACP that target the general public, aiming at equal benefit for people with dementia and their family of starting conversations outside health-care settings*
11. Governments and health-care organisations should encourage ACP conversations in which people with dementia are supported to discuss and express their values also if they are not ready to discuss medical issues but wish to discuss, for example, social issues exclusively