End-of-life care in Ireland: ethical challenges and solutions. Opening Statement to the Houses of the Oireachtas Joint Committee on Health and Children, 24 October 2013.

Children Report on End of Life and Palliative Care in Ireland, Volume 1.

End-of-life care: identifying an appropriate legal framework for specialist palliative care in Ireland

This thesis argues that the legal framework in Ireland for specialist palliative care is inadequate and consequently a more appropriate legal framework must be identified. This research is guided by three central research questions. The first central research question examines the legitimacy of the distinction between specialist palliative care and euthanasia. The second central research question asks what legal framework currently exists in Ireland for specialist palliative care. The third central research question examines an alternative legal framework for specialist palliative. This thesis is composed of seven chapters. The first Chapter is an introduction to the thesis and defines the terminology and the central research questions. Chapter Two explores the development and practice of palliative care in Ireland. Chapter Three examines the distinction in criminal law between specialist palliative care practices and euthanasia. Chapter Four examines the human rights framework for specialist palliative care. Chapter Five critiques the regulatory framework in Ireland for specialist palliative care. Having gained a thorough understanding of palliative care and the related legal framework, this thesis then engages in comparative analysis of the Netherlands which is used as a source of ideas for reform in Ireland. Chapter Seven is the concluding chapter and, in it, the main findings of this thesis are summarised. The main findings being that: the distinction between specialist palliative care and euthanasia is not sufficiently supported by justifications such as a double effect or the acts and omissions distinction, there is no clear decision-making framework in Ireland for specialist palliative care, and the current legal framework lacks clarity and does not promote consistency between providers of specialist palliative care. This Chapter also proposes that detailed professional standards and guidelines are likely to be the most appropriate way to effect individual and institutional change in the provision of specialist palliative care.

Resigning: a classic grounded theory of working within constraints when caring for stroke patients in the acute general care setting

This research aims to explore the challenges nurses face, when caring for stroke patients on a general medical/surgical ward, in the acute care setting and identify how nurses resolve or process this challenge. Healthcare environments continue to face the pressures of constraints such as reduced staffing levels, budgets, resources and less time, which influence care provision. Patient safety is central in care provision where nurses face the challenge of delivering best quality care when working within constraints. The incidence of stroke is increasing worldwide and internationally stroke units are the recognised minimum standard of care. In Ireland with few designated stroke units in operation many stroke patients are cared for in the acute general care setting. A classic grounded theory methodology was utilised for this study. Data was collected and analysed simultaneously through coding, constant comparison, theoretical sampling and memoing. Individual unstructured interviews with thirty two nurses were carried out. Twenty hours of non-participant observations in the acute general care setting were undertaken. The main concern that emerged was working within constraints. This concern is processed by nurses through resigning which consists of three phases; idealistic striving, resourcing and care accommodation. Through the process of resigning nurses engage in an energy maintenance process enabling them to continue working within constraints. The generation of the theory of resigning explains how nurses’ resolve or process working within constraints. This theory adds to the body of knowledge on stroke care provision. This theory has the potential to enhance nursing care, minimise burnout and make better use of resources while advocating for best care of stroke patients.

Nurses' knowledge of advance directives and perceived confidence in end-of-life care: a cross-sectional study in five countries

Nurses' knowledge regarding advance directives may affect their administration and completion in end-of-life care. Confidence among nurses is a barrier to the provision of quality end-of-life care. This study investigated nurses' knowledge of advance directives and perceived confidence in end-of-life care, in Hong Kong, Ireland, Israel, Italy and the USA using a cross-sectional descriptive design (n = 1089). In all countries, older nurses and those who had more professional experience felt more confident managing patients' symptoms at end-of-life and more comfortable stopping preventive medications at end-of-life. Nurses in the USA reported that they have more knowledge and experience of advance directives compared with other countries. In addition, they reported the highest levels of confidence and comfort in dealing with end-of-life care. Although legislation for advance directives does not yet exist in Ireland, nurses reported high levels of confidence in end-of-life care.