6 The Intersection of Human Rights and Decision Making Capacity Legislation with Person Centred Approaches

Abstract Background A major focus on decision making capacity (as opposed to cognitive capacity and competence) legislation in many Western countries is the integration of a human rights approach focused on self-determination and autonomy. This paper examines modern day concepts of personhood and person centred care and presents Irish and United Kingdom legal commentaries which focus on health services’ and society's approaches to risky decision making. Integrating human rights into decision making capacity legislation has been central in contemporary discourses on health and welfare. Methods A literature review was undertaken charting the emergence of personhood, person centred care and human rights. Case studies of influential legal commentaries in Ireland and the United Kingdom where decision-making capacity was addressed were mapped to person centred care principles. Results Findings point to a convergence of discourses of human rights in contemporary approaches to health and social care as well as the evolution of legislation to support person centredness in fostering safeguarding and promoting autonomy and self-determination. Specific legal commentaries point to the need of health and social care to be mindful of paternalism and to conceptualise the concept of ‘risk’ with a particular emphasis on the inclusion and defence of the voice of the older or vulnerable person. Conclusion The intrinsic worth of each human is articulated through an implicit and explicit vindication of their human rights. The emergence of the third generation of human rights has argued the value of self-determination and autonomy, articulated through robust national legislation on decision-making capacity based on the core principles of person centred care approaches. This move from paternalism is imperative and is imbued in contemporary legislation and legal commentaries, which has noted the need for revisions in health and social care case management perspectives.

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Mental Health and Social Care Regulation in Ireland: New Ethical Perspectives

European Psychiatry ◽

10.1016/j.eurpsy.2017.01.118 ◽

2017 ◽

Vol 41 (S1) ◽

pp. S21-S21

Author(s):

P. Dodd

Keyword(s):

Mental Health ◽

Decision Making ◽

Social Care ◽

Mental Health Problems ◽

Ethical Issues ◽

Regulatory System ◽

Decision Making Capacity ◽

Health And Social Care ◽

Competing Interest ◽

Care Regulation

This talk will outline the regulatory framework (both mental health and social care) currently in place in Ireland for people with intellectual disability (I.D.) and mental health problems, in the context of the varied nature of available mental health services. As not all aspects of service are currently under the regulatory system, potential ethical issues arise, and will be discussed.In addition new legislation regarding the support of people with vulnerable decision making capacity will be outlined (Assisted Decision Making (Capacity) Act, 2015); potential ethical issues that are currently arising from this legislation will be explored and discussed.Disclosure of interestThe author has not supplied his declaration of competing interest.

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Capacity to Mediate and the Human Right to Self Determination: The Mediator’s Responsibility!

Journal of Mediation & Applied Conflict Analysis ◽

10.33232/jmaca.2.1.5841 ◽

2015 ◽

Vol 2 (1) ◽

pp. 211-222

Keyword(s):

Decision Making ◽

Human Rights ◽

Self Determination ◽

Human Right ◽

Decision Making Capacity ◽

Guiding Principles

The purpose of this paper is to examine capacity in a mediation context including the level of responsibility a mediator has for assessing the capacity of participants; when that assessment should be made; and whether or not there are any guiding principles available to assist mediators in making the assessment. This is carried out, by reference to the available literature, under the following headings: the human rights origins of self-determination; capacity in a mediation context; the internationally recognised approaches to capacity; the best approach to capacity for mediators; and the obligations which will be imposed on mediators working in Ireland in view of the imminent Assisted Decision Making (Capacity) Bill 2013. The paper additionally looks at the skills necessary to assess capacity in mediation and asks if mediators’ training adequately provides them, and concludes that the responsibility to assess capacity to mediate rests solely with the mediator.

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Experiences of people with memory disorders and their spouse carers on influencing formal care: “They ask my wife questions that they should ask me”

Dementia ◽

10.1177/1471301221994300 ◽

2021 ◽

pp. 147130122199430

Author(s):

Mari S Aaltonen ◽

Anne Martin-Matthews ◽

Jutta M Pulkki ◽

Päivi Eskola ◽

Outi H Jolanki

Keyword(s):

Decision Making ◽

Social Care ◽

Cognitive Capacity ◽

Memory Disorders ◽

Formal Care ◽

Structural Factors ◽

Care Providers ◽

Family Carers ◽

Health And Social Care ◽

With Memory

Background People with memory disorders often need care and help from family carers and health and social care providers. Due to the deterioration of cognitive capacity and language skills, they may be unable to convey their thoughts and care preferences to other people. As a result, their agency may become restricted. We investigated the descriptions provided by people with memory disorders and spousal carers of their influence on care in encounters with formal care providers. Methods Qualitative thematic analysis was used to identify, analyze, and report themes that describe encounters with professionals in different social or healthcare environments. In-depth interview data were gathered from 19 spouse carers and 15 persons with memory disorders. Findings Three themes out of four describe how people with memory disorders and their spouse carers influence formal care: Acquiescence, negotiating care decisions, and taking control. The fourth theme describes lack of influence. People with memory disorders and their spouse carers have ways to influence care, but spouse carers identified more ways of doing so. Both either accepted and followed the care guidelines by the formal carers or took control of the situation and made their own decisions. Spouse carers also sought to influence care decisions through negotiations with formal carers. When formal carers’ decisions were experienced as inconsistent or the rationale of their actions difficult to follow, the possibilities to influence care were limited. Conclusions People with memory disorders and their family carers are often in a disadvantaged position as they lack power over the health and social care decision-making during the illness, which is often guided by structural factors. To support the agency of people with memory disorders and to promote shared decision-making, clarification of the service structure and clearer communication between the different parties involved in care are required.

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Using a multidisciplinary approach to reveal decision-making capacity within acute care for an individual with aphasia

SAGE Open Medical Case Reports ◽

10.1177/2050313x211027098 ◽

2021 ◽

Vol 9 ◽

pp. 2050313X2110270

Author(s):

Ruth Maxwell ◽

Michelle O’Brien ◽

Deirdre O’Donnell ◽

Lauren Christophers ◽

Thilo Kroll

Keyword(s):

Decision Making ◽

Multidisciplinary Team ◽

Team Approach ◽

Term Care ◽

Multidisciplinary Team Approach ◽

Decision Making Capacity ◽

Health And Social Care ◽

Functional Assessments ◽

Health Nursing ◽

Communication Approach

Formal assessments of cognition that rely on language may conceal the non-linguistic cognitive function of people with aphasia. This may have detrimental consequences for how people with aphasia are supported to reveal communicative and decision-making competence. This case report demonstrates a multidisciplinary team approach to supporting the health and social care decision-making of people with aphasia. The case is a 67-year-old woman with Wernicke’s type aphasia. As the issue of long-term care arose, the speech and language therapist used a supported communication approach with the patient who expressed her wish to go home. A multidisciplinary team functional assessment of capacity was undertaken which involved functional assessments and observations of everyday tasks by allied health, nursing, catering and medical staff. In this way, the patient’s decision-making capacity was revealed and she was discharged home. A collaborative multidisciplinary team approach using supported communication and functional capacity assessments may be essential for scaffolding the decision-making capacity of people with aphasia.

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Facilitating integrated delivery of services across organisational boundaries: Essential enablers to integration

British Journal of Occupational Therapy ◽

10.1177/0308022616688019 ◽

2017 ◽

Vol 80 (5) ◽

pp. 302-309

Author(s):

Stephanie Best

Keyword(s):

United Kingdom ◽

Qualitative Study ◽

Service Provision ◽

Social Care ◽

Occupational Therapists ◽

Leadership Communication ◽

The United Kingdom ◽

Health And Social Care ◽

Integration Of Services ◽

Integrated Delivery

Introduction Integrating services is a key tenet to developing services across the United Kingdom. While many aspects of integration have been explored, how to facilitate integration of services remains unclear. Method An exploratory qualitative study was undertaken in 2015 to explore occupational therapists’ perceptions on integrating service provision across health and social care organisational boundaries. The views of practitioners who had experienced integration were sought on a range of aspects of integrating services. This paper focuses on the facilitators for delivering integration and the essential enablers are identified. Findings Numerous factors were noted to facilitate integration and three essential enablers were highlighted. Leadership, communication and joint education were recognised as playing a central role in integrating services across organisational boundaries; without these three essential enablers, integration is liable to fail. Conclusion Integration is a process rather than an event; continued emphasis will be required on leadership, communication and joint education to progress integration achievements made to date.

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The Role of Information and Communication Technology (ICT) for Older Adults’ Decision-Making Related to Health, and Health and Social Care Services in Daily Life—A Scoping Review

International Journal of Environmental Research and Public Health ◽

10.3390/ijerph19010151 ◽

2021 ◽

Vol 19 (1) ◽

pp. 151

Author(s):

Susanna Nordin ◽

Jodi Sturge ◽

Maria Ayoub ◽

Allyson Jones ◽

Kevin McKee ◽

...

Keyword(s):

Older Adults ◽

Decision Making ◽

Information And Communication Technology ◽

Communication Technology ◽

Scoping Review ◽

Social Care ◽

Care Services ◽

Health And Social Care ◽

Information And Communication

Information and communication technology (ICT) can potentially support older adults in making decisions and increase their involvement in decision-making processes. Although the range of technical products has expanded in various areas of society, knowledge is lacking on the influence that ICT has on older adults’ decision-making in everyday situations. Based on the literature, we aimed to provide an overview of the role of ICT in home-dwelling older adults’ decision-making in relation to health, and health and social care services. A scoping review of articles published between 2010 and 2020 was undertaken by searching five electronic databases. Finally, 12 articles using qualitative, quantitative, and mixed-method designs were included. The articles were published in journals representing biology and medicine, nursing, informatics, and computer science. A majority of the articles were published in the last five years, and most articles came from European countries. The results are presented in three categories: (i) form and function of ICT for decision-making, (ii) perceived value and effect of ICT for decision-making, and (iii) factors influencing ICT use for decision-making. According to our findings, ICT for decision-making in relation to health, and health and social care services was more implicitly described than explicitly described, and we conclude that more research on this topic is needed. Future research should engage older adults and health professionals in developing technology based on their needs. Further, factors that influence older adults’ use of ICT should be evaluated to ensure that it is successfully integrated into their daily lives.

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Exploring the role of the Care and Health Information Exchange (CHIE) in clinical decision-making: a realist evaluation

10.1101/2020.08.13.20174276 ◽

2020 ◽

Author(s):

Philip Scott ◽

Elisavet Andrikopoulou ◽

Haythem Nakkas ◽

Paul Roderick

Keyword(s):

Decision Making ◽

Health Information ◽

Information Exchange ◽

Healthcare Professionals ◽

Clinical Decision Making ◽

Social Care ◽

Health Information Exchange ◽

Clinical Decision ◽

Health And Social Care ◽

The Impact

Background: The overall evidence for the impact of electronic information systems on cost, quality and safety of healthcare remains contested. Whilst it seems intuitively obvious that having more data about a patient will improve care, the mechanisms by which information availability is translated into better decision-making are not well understood. Furthermore, there is the risk of data overload creating a negative outcome. There are situations where a key information summary can be more useful than a rich record. The Care and Health Information Exchange (CHIE) is a shared electronic health record for Hampshire and the Isle of Wight that combines key information from hospital, general practice, community care and social services. Its purpose is to provide clinical and care professionals with complete, accurate and up-to-date information when caring for patients. CHIE is used by GP out-of-hours services, acute hospital doctors, ambulance service, GPs and others in caring for patients. Research questions: The fundamental question was How does awareness of CHIE or usage of CHIE affect clinical decision-making? The secondary questions were What are the latent benefits of CHIE in frontline NHS operations? and What is the potential of CHIE to have an impact on major NHS cost pressures? The NHS funders decided to focus on acute medical inpatient admissions as the initial scope, given the high costs associated with hospital stays and the patient complexities (and therefore information requirements) often associated with unscheduled admissions. Methods: Semi-structured interviews with healthcare professionals to explore their experience about the utility of CHIE in their clinical scenario, whether and how it has affected their decision-making practices and the barriers and facilitators for their use of CHIE. The Framework Method was used for qualitative analysis, supported by the software tool Atlas.ti. Results: 21 healthcare professionals were interviewed. Three main functions were identified as useful: extensive medication prescribing history, information sharing between primary, secondary and social care and access to laboratory test results. We inferred two positive cognitive mechanisms: knowledge confidence and collaboration assurance, and three negative ones: consent anxiety, search anxiety and data mistrust. Conclusions: CHIE gives clinicians the bigger picture to understand the patient's health and social care history and circumstances so as to make confident and informed decisions. CHIE is very beneficial for medicines reconciliation on admission, especially for patients that are unable to speak or act for themselves or who cannot remember their precise medication or allergies. We found no clear evidence that CHIE has a significant impact on admission or discharge decisions. We propose the use of recommender systems to help clinicians navigate such large volumes of patient data, which will only grow as additional data is collected.

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