Realising supported decision-making in the context of dementia and treatment decisions: international principles and initiatives from Europe

The thesis analyses how to create better conditions for people living with dementia to exercise their right to choose on medical treatment. It starts from the numerous barriers faced by these individuals in deciding on healthcare matters and seeks to study how a legal, policy and practice approach to healthcare decision-making, characterised by a stronger focus on support and on accommodating contextual dynamics would better enable the person to decide for themselves. In addressing such a question, this work adopts the perspective of the social model of disability and of Fineman’s vulnerability theory. The social model looks at disability and chronic conditions as social, rather than just clinical problems, conceptualising them in terms of interaction between an impairment and societal barriers. In this regard, it focuses on removing the societal obstacles preventing the person from living their life to the fullest. Fineman’s vulnerability theory supports and extends such claims in relation to legal personality and the role of the state. Starting from a vision of vulnerability as a universal characteristic, it argues that it makes no sense to distinguish between autonomous/nonautonomous or capable/incapable individuals and advocates for state and social institutions to take action in providing the services necessary for people to be more resilient to internal and external jeopardies. Starting from this perspective this work argues that the numerous obstacles faced by individuals living with dementia in choosing on medical treatment can be overcome or greatly attenuated if we adopt a model of healthcare decision-making which makes use of social institution’s potential for building resilience and removing disabling barriers. Such a model appears embodied by Article 12 UN Convention on the Rights of Persons with Disabilities. Indeed, this Article affirms that all disabled individuals must be recognised the right to legal capacity and decision-making, refusing the traditional distinction between capacity and incapacity and requiring State Parties to actively support disabled individuals in exercising their right to choose. The thesis analyses the implications of such provisions with regard to treatment decisions of people living with dementia, by studying how European regional organisations such as the Council of Europe and the European Union, can contribute to the practical realisation of such principles, and how promising initiatives developed in single European countries can provide an idea on how they can translate into concrete behaviours and practices

The Impact Of Implantable Smart Heart Devices On The Daily Life Of Their Carriers: Regaining A Sense Of Control Through The Formation Of A Technoscientific Illness Identity

Implantable smart heart devices (ISHDs), such as pacemakers or ICDs, are technologies used to support cardiac function, with medical information leaflets promising low impact and a higher quality of life. Yet, previous studies have shown that these devices do not only enhance hearts, but that the intimidate relationship between devices and bodies creates ‘everyday cyborgs’, whose hybrid bodies bring new complexities, vulnerabilities and interconnectivities. As carriers of ISHDs need to negotiate safe spaces and care for both bodies and devices in their daily lives, there is a need for studies on the ‘mundane’ practices and strategies of resilience of carriers. This study aims to explore how carriers of ISHDs learn to live with their devices, whilst their devices are learning to live with them. The research consisted of ten in-depth interviews with Dutch carriers of ISHDs in which these themes were explored. It shows how carriers of ISHDs manage complexities by framing their experience into a ‘narrative of uniqueness’, in which they explained that their case was unlike any other, which allowed and empowered them to 1) gain extensive knowledge on their bodies, devices and illness, which can be used to 2) challenge their doctors and manufactures and 3) negotiate safe spaces for their hybrid bodies

The Impact Of Implantable Smart Heart Devices On The Daily Life Of Their Carriers: Regaining A Sense Of Control Through The Formation Of A Technoscientific Illness Identity

Implantable smart heart devices (ISHDs), such as pacemakers or ICDs, are technologies used to support cardiac function, with medical information leaflets promising low impact and a higher quality of life. Yet, previous studies have shown that these devices do not only enhance hearts, but that the intimidate relationship between devices and bodies creates ‘everyday cyborgs’, whose hybrid bodies bring new complexities, vulnerabilities and interconnectivities. As carriers of ISHDs need to negotiate safe spaces and care for both bodies and devices in their daily lives, there is a need for studies on the ‘mundane’ practices and strategies of resilience of carriers. This study aims to explore how carriers of ISHDs learn to live with their devices, whilst their devices are learning to live with them. The research consisted of ten in-depth interviews with Dutch carriers of ISHDs in which these themes were explored. It shows how carriers of ISHDs manage complexities by framing their experience into a ‘narrative of uniqueness’, in which they explained that their case was unlike any other, which allowed and empowered them to 1) gain extensive knowledge on their bodies, devices and illness, which can be used to 2) challenge their doctors and manufactures and 3) negotiate safe spaces for their hybrid bodies

A Multi-Directional and Agile Academic Knowledge Transfer Strategy for Healthcare Technology

Klemme I, Richter B, De Sabbata K, Wrede B, Vollmer A-L. A Multi-Directional and Agile Academic Knowledge Transfer Strategy for Healthcare Technology. Frontiers in Robotics and AI. 2021;8: 789827.Technology, especially cognitive agents and robots, has significant potential to improve the healthcare system and patient care. However, innovation within academia seldomly finds its way into practice. At least in Germany, there is still a digitalization gap between academia and healthcare practice and little understanding of how healthcare facilities can successfully purchase, implement, and adopt new knowledge and technology. Therefore, the aim of this study is to develop a successful academic knowledge transfer strategy for healthcare technology. We conducted a qualitative study with academic staff working in higher education in Germany and professionals in their practice partner organizations. In 15 semi-structured interviews, we aimed to assess interviewees experiences with knowledge transfer, to identify perceived influencing factors, and to understand the key aspects of a successful knowledge transfer strategy. The Dynamic Knowledge Transfer Model byWehn and Montalvo, 2018was used for data analysis. Based on our findings, we suggest that a successful transfer strategy between academia and practice needs to be multi-directional and agile. Moreover, partners within the transfer need to be on equal terms about expected knowledge transfer project outcomes. Our proposed measures focus particularly on regular consultations and communication during and after the project proposal phase

A Multi-Directional and Agile Academic Knowledge Transfer Strategy for Healthcare Technology

Technology, especially cognitive agents and robots, has significant potential to improve the healthcare system and patient care. However, innovation within academia seldomly finds its way into practice. At least in Germany, there is still a digitalization gap between academia and healthcare practice and little understanding of how healthcare facilities can successfully purchase, implement, and adopt new knowledge and technology. Therefore, the aim of this study is to develop a successful academic knowledge transfer strategy for healthcare technology. We conducted a qualitative study with academic staff working in higher education in Germany and professionals in their practice partner organizations. In 15 semi-structured interviews, we aimed to assess interviewees experiences with knowledge transfer, to identify perceived influencing factors, and to understand the key aspects of a successful knowledge transfer strategy. The Dynamic Knowledge Transfer Model by Wehn and Montalvo, 2018 was used for data analysis. Based on our findings, we suggest that a successful transfer strategy between academia and practice needs to be multi-directional and agile. Moreover, partners within the transfer need to be on equal terms about expected knowledge transfer project outcomes. Our proposed measures focus particularly on regular consultations and communication during and after the project proposal phase

Interpretazione dei risultati della ricerca, bilancio e proposte

Il saggio espone le conclusioni dei partecipanti al Progetto di Ricerca Dipartimentale finanziato dall’Università degli studi di Udine dal titolo "La legge 291/2017 (Norme in materia di consenso informato e di disposizioni anticipate di trattamento): contenuto, portata innovativa, difficoltà applicative". La ricerca ha avuto come responsabile scientifico, Luigi Gaudino