The right to decide? Supported decision-making in care transitions with older adults who lack capacity.

The Advanced Care Research Centre at the University of Edinburgh is a new £20m interdisciplinary research collaboration aiming to transform later life with person centred integrated care

The vision of the ACRC is to play a vital role in addressing the Grand Challenge of ageing by transformational research that will support the functional ability of people in later life so they can contribute to their own welfare for longer. With fresh and diverse thinking across interdisciplinary perspectives our academy students will work to creatively embed deep understanding, data science, artificial intelligence, assistive technologies and robotics into systems of health and social care supporting the independence, dignity and quality-of-life of people living in their own homes and in supported care environments.

The ACRC Academy will equip future leaders to drive society’s response to the challenges of later life care provision; a problem which is growing in scale, complexity and urgency. Our alumni will become leaders in across a diverse range of pioneering and influential roles in the public, private and third sectors.

The loss of ‘capacity’ in older age, most commonly due to neurodegenerative conditions like dementia, mean that people are no longer able to able make personal decisions for themselves. This can be due to being incapable of acting on the decision, making, communicating or understanding the decision. This is particularly important when the person is making life-changing decisions, in particular, regarding their care and place of care. One important situation is the transition from home or hospital into permanent care. For the older adult, this often involves a loss of agency, with family members and/or professionals taking on decision-making roles and powers (e.g. our previous work shows that family discussions are well documented, but the individual’s own views are less well reflected in hospital records). 

Reflecting recent changes in relevant national and international laws and the added complexity and urgency created by Covid-19, this PhD will explore how developing understandings and models of supported decision-making (SDM) can enhance the decision-making process for older adults who lack capacity, in conjunction with their families and professionals, at these critical care transitions.

Bringing together social work, medical and legal perspectives, the supervisory team mirrors the multi-disciplinary context of this work and we are committed to developing knowledge around SDM that will have practical application in the field. We are also seeking a PhD candidate who recognises decision-making around care transitions as a human right and is interested in engaging with recent and proposed legal frameworks that necessitate changing current practice in this area. Consistent with the principles of SDM, the project offers the novel opportunity to co-produce aspects of the research design with older adults, carers and professionals. The first year of the 1+3 format will allow ample time for the aims, objectives research design and methods to be developed and refined, but the following activities offer an indicative framework the study:

• The student will carry out a critical review of national and international research evidence for SDM for older adults who lack capacity in relation to care transitions.
• They will co-produce qualitative research with older adults who lack capacity, their carers and professionals in making care transitions, to identify enablers and barriers to SDM.
• The study’s findings will support the development a model of SDM that seeks to maximise autonomy and the older adult’s human rights in line with developing national and international law, in the context of everyday multi-disciplinary working pressures in care environments.