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Abstract
The right to make autonomous decisions is enshrined in law. However, the question how persons with cognitive deficits can be enabled to make autonomous decisions has not been satisfactorily addressed. In particular, the concept of supported decision-making and its implementation into practice has been poorly explored for persons with dementia (PwD).This article describes the empirical development and implementation of support tools to enhance informed consent processes (so called enhanced consent procedures/ECP) for PwD on whether to undergo lumbar puncture. In the end of the process of pilot testing and further development of the tools, the following tools were defined: (1) Standardized Interview Structure, (2) Elaborated Plain Language, (3) Ambience and Room Design, (4) Keyword Lists, (5) Priority Cards, (6) Visualization, and (7) Simplified Written Informed Consent (Patient Information), as well as the general attitude (8) Person-Centered Attitude of the facilitator. As the development, implementation and evaluation of ECP tools is one objective of the transnational ENSURE project, we also include an overview of future empirical procedures. So far, our findings can serve as a selection of possibilities to support PwD in decision-making and help practitioners achieve an appropriate balance between the autonomy and protection of PwD in complex decision-making situation. Future studies should address the question if the proposed set of tools is effective to enhance informed consent processes in PwD.
Highlights
Individual autonomy encompasses self-determined decisionmaking in medical and research contexts
The person-centered attitude of the facilitator was initially handled as an independent tool before it was decided to define it as a basic attitude that must be practiced as a basis for the application of other tools
This article describes the systematic development of supporttools for an enhanced consent procedures (ECP) for lumbar puncture treatment for persons with dementia (PwD)
Summary
Individual autonomy encompasses self-determined decisionmaking in medical and research contexts. The UN Convention on the Rights of Persons with Disabilities (UN-CRPD) is a human rights treaty that recognizes persons with disabilities, such as persons with dementia (PwD), as persons before the law with legal capacity and obliges state parties to support their ability to make decisions with legal effect (1). The International Guidelines for Heath-related Research Involving Humans of the Council for International Organizations of Medical Sciences state that “adequate time and resources must be provided for informed-consent procedures” and that “researchers should use evidence-based methods for imparting information to ensure comprehension” (2). Supported decision-making (SDM) in PwD requires further research. A systematic review of SDM in PwD (4) shows that it is–if at all–mostly applied in care and everyday-life contexts, but plays little role in treatment and research decisions
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