PRACTISING SOCIAL CITIZENSHIP IN A CONTEXT OF COMPROMISED DECISION-MAKING CAPACITY: REALIZING AND PROTECTING HUMAN RIGHTS.

• Date: 01 January 2019
• Author: O'Connor, Deborah

I INTRODUCTION

The United Nations Convention of Rights of Persons with Disabilities (CRPD), (1) has provided a strong foundation for asserting a rights-based approach to practice for persons with disabilities. Article 12 of the CRPD reaffirms the rights of persons with both physical and mental disabilities to enjoy legal capacity on an equal basis with others in all aspects of their lives, and puts the onus on the state to take appropriate measures to provide the support necessary for persons with disabilities to exercise legal capacity and realize their full human potential. The focus on a 'positive' right to support from the state (as opposed to the 'negative' right to non-interference) within Article 12 has established an important set of expectations around direct societal responses to the needs of persons with disabilities people with disabilities.

CRPD Article 12 has been heavily endorsed as a framework for guiding practice with younger persons with mental and intellectual disability, but less significantly less attention has been paid to Article 12 in relation to the needs of older adults with dementia. This is beginning to change, however, with the emergence of human rights based approaches to understanding the dementia experience. (2) Often using the language of citizenship--social citizenship, (3) active citizenship, (4) and narrative citizenship (5) e.g.--these rights based approaches posit that at least some of the loss and deterioration associated with a diagnosis of dementia (or major neurocognitive disorder as it is named in the DSM 5) is related to how persons with dementia are pejoratively understood and treated in their relationships with others and society at large. With the shift in focus from neurodegenerative loss to societal context, the importance of stigma and discrimination for shaping the personal experience of living with dementia takes center stage. Research is now beginning to identify the social experience of discrimination and stigma as comprising one of the most devastating and challenging aspects of living with dementia, an experience that can severely limit both functioning and quality of life for persons with dementia. (6)

While the importance of a social lens for expanding understanding is critical, it is also undeniable that the neurocognitive changes affiliated with dementia remain a powerful force for organizing the dementia experience. In other words, people with dementia will experience physiological changes and loss as a result of the disorder. Often, these changes will (at some point) lead to questions about the person's ability to make at least some decisions, creating ethical and legal tensions between balancing the person's inherent rights to independence and autonomy, with her or his rights to protection.

Notions of capacity or competence are generally invoked to help resolve some of these tensions.

At its core, the concept of mental capacity captures the simple intuition that we need to display a level of decision-making competence in order for our choices to be respected; it is a technical concept that assesses the following: can individuals understand and reason about the various options available to them? Can they understand the consequences of their decisions? Are their reasons internally consistent? Can they draw upon true as opposed to deluded beliefs? (7) There is a burgeoning body of literature focused on understanding and assessing capacity. Over the past two decades, most discussions have begun to recognize the importance of moving from a global notion of competency to one which examines capacity as specific to a particular decision. Within this body of literature, there is clear consensus that this assessment of decision-making capacity (DMC) is complex and challenging: it is an area of practice for which many health professionals--including physicians (8) and psychiatrists (9)--often feel ill-prepared.

To facilitate a clearer and more informed process, a large body of research has been directed toward developing standardized tools for capacity assessment. These tools focus largely on what to assess from a neuro-cognitive perspective and some gold(ish) standards are emerging. However, there is still a long way to go (10) particularly in relation to non-health-related decisions. (11)

Beyond the focus on assessment content and tools, however, an even larger gap in knowledge is linked to the very limited attention that has been paid to considering the importance of the process for understanding and conducting the assessment. This is a particular issue given emerging legislative trends mandating the involvement of the person in decision-making to the extent possible, irrespective of capacity. For example, in England, the Mental Capacity Act (MCA) 2005 is seen as 'enshrining a legal right to autonomy' for people with dementia even when they lack capacity, thus advancing civil and social rights through an emphasis on protecting liberty, promoting self-determination, and providing social rights to facilitate autonomy. (12) Similarly, in Canada, provincial legislation has been enacted that explicitly recognizes the rights of all people to be presumed capable, hence the focus is on assessing incapacity as opposed to capacity.

An emerging challenge then, is to understand what it means to exercise autonomy and rights in the context of impairment and disability. (13) This is a particularly salient and thorny issue when considering the assessment of incapacity. The purpose of this paper is to take up this challenge by considering how a citizenship-in-practice framework can be used to facilitate an assessment of incapacity that is strength-based and empowering irrespective of findings about capacity. Drawing on the literature related to social citizenship, this paper will outline a citizenship-in-practice framework and then examine the implications of implementing this approach in relation to understanding and assessing incapacity.

II TOWARD A 'CITIZENSHIP-IN-PRACTICE' FRAMEWORK

Conventionally, discussions about decision-making capacity have been situated largely within the realm of cognitive pathology. The underlying assumption with this approach is that decision-making is a reasoned activity and that there are certain cognitive capacities that are required in order to work through this activity. These...