Papers by Louise Campbell
Factsheets to accompany this document 7. Conclusion Glossary Appendix 1-Steering and project grou... more Factsheets to accompany this document 7. Conclusion Glossary Appendix 1-Steering and project group membership Appendix 2-Methodology References Additional reading Ethical decision making in end-of-life care and the person with dementia Contents Ethical decision making in end-of-life care and the person with dementia (Nuffield Council 2009, p.55 13) Dementia is associated with borderline capacity, dependence and behavioural changes and it prompts profound ethical questions about individual autonomy, selfhood and relationship. Specific ethical challenges that arise in relation to the care of individuals with dementia include: respecting autonomy and assessing capacity to consent to treatment, truth-telling and covert administration of medication, ensuring the overall well-being of individuals as well as their family/carers, making decisions about pain management and withholding and withdrawing treatment. These concerns are all the more pressing at the end of life where they may arise in tense and emotionally fraught circumstances and serve as a source of stress, for health professionals, care providers and families, who report feeling isolated and unsupported in making ethical decisions 13-16. Many of the well-known ethical and legal cases involving end-of-life decision-making and questions about capacity concern patients in a persistent vegetative state, e.g. Karen Quinlan 17 and Nancy Cruzan 18 in the US, Tony Bland 19 in the UK and In re Ward of Court 20 in Ireland. However, ethical challenges that arise in relation to individuals with dementia have unique features that need to be taken into account. Authors such as Golan 21 and Jaworska 22 draw attention to the following distinctive dimensions of dementia: 1. Dementia involves a slow deterioration and irreversible decline of cognitive capacities-as distinct from a sudden loss of consciousness and transformation of a previously competent person to a permanently incompetent person. During the transformation, the person may have periods during which they are able to communicate their wishes regarding their treatment. 2. Developments in neuroscience and neuropsychology research indicate that individuals with dementia retain emotional and practical abilities long after they have suffered severe cognitive losses. This means that they may continue to hold values which should be respected and they may continue to have an interest in the continuation of their lives. 3. The person with dementia undergoes a long process of personality change-so much so that the validity and applicability of their prior wishes and advance directives may be in doubt. 4. The final stage of the dementia process is sometimes associated with difficulties in swallowing and this often prompts consideration of administering Clinically-Assisted Nutrition and Hydration (CANH). Section 2 s Ethical decision making in end-of-life care and the person with dementia Guidance and Resources * NB: The term feeding assistance is used in this guidance document to describe assistance with eating and drinking for a person with dementia. The term 'feeding' alone contributes to a negative connotations associated with ageing and stereotypes older persons.
Irish Hospice Foundation, Sep 1, 2016
This book offers an Ethical Framework for end-of-life decision making in healthcare settings. The... more This book offers an Ethical Framework for end-of-life decision making in healthcare settings. The Framework, consisting of eight Modules of Learning, is a set of educational resources for health professionals, allied professionals, healthcare ethics and law lecturers and students. It aims to foster and support ethically and legally sound clinical practice in end-of-life treatment and care in Ireland.
Clinical Ethics, Sep 7, 2017
Although clinical ethics support services are becoming increasingly prevalent in Europe and North... more Although clinical ethics support services are becoming increasingly prevalent in Europe and North America, they remain an uncommon feature of the Irish healthcare system and Irish health professionals lack formal support when faced with ethically challenging cases. We have developed a variant on existing clinical ethics decision-making tools which is designed to build capacity and confidence amongst Irish practitioners and enable them to confront challenging situations in the absence of any dedicated support structure. The tool provided below follows a transparent stepwise procedure which avoids an overcomplicated analysis while remaining sensitive to the complexity of the issues addressed. The novelty of the tool lies in the explicit association it makes between each step in the process and one or more responsibilities based on established norms of ethical decision-making in the public domain.
Journal of medical ethics, Jan 18, 2018
The Republic of Ireland has some of the most restrictive abortion legislation in the world which ... more The Republic of Ireland has some of the most restrictive abortion legislation in the world which grants to the 'unborn' an equal right to life to that of the pregnant woman. This article outlines recent developments in the public discourse on abortion in Ireland and explains the particular cultural and religious context that informs the ethical case for access to abortion services. Our perspective rests on respect for two very familiar moral principles - autonomy and justice - which are at the centre of social and democratic societies around the world. This article explains the context for the deployment of these concepts in order to support the claim that the current legislation and its operationalisation in clinical practice poses serious risks to the health, lives and well-being of pregnant women, tramples on their autonomy rights and requires of them a self-sacrifice that is unreasonable and unjust.
Clinical Ethics, 2017
Although clinical ethics support services are becoming increasingly prevalent in Europe and North... more Although clinical ethics support services are becoming increasingly prevalent in Europe and North America, they remain an uncommon feature of the Irish healthcare system and Irish health professionals lack formal support when faced with ethically challenging cases. We have developed a variant on existing clinical ethics decision-making tools which is designed to build capacity and confidence amongst Irish practitioners and enable them to confront challenging situations in the absence of any dedicated support structure. The tool provided below follows a transparent stepwise procedure which avoids an overcomplicated analysis while remaining sensitive to the complexity of the issues addressed. The novelty of the tool lies in the explicit association it makes between each step in the process and one or more responsibilities based on established norms of ethical decision-making in the public domain.
This document which is part of a series of seven guidance documents on dementia has been written ... more This document which is part of a series of seven guidance documents on dementia has been written for all health and social care staff who work with and support people with dementia across all settings. It advises on best practice in supporting ethical decision making for dementia patients.
The Ethical Framework for End-of-life Care is part of a national programme, the Hospice Friendly ... more The Ethical Framework for End-of-life Care is part of a national programme, the Hospice Friendly Hospitals Programme (HfH) of the Irish Hospice Foundation, which is intended to improve the culture of care and organization regarding dying, death and bereavement in Irish hospitals. The Framework is an educational resource that consists of eight Modules of Learning for health professionals, patients, families
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Papers by Louise Campbell