Conference Publication Details
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Joan McCarthy, Louise Campbell Caroline Dalton, Tom Andrews, Kathy McLoughlin
1st International ICE Observatory Ethics in Care and 16th Nursing Ethics Conference
Ethical Decision Making and Dementia - Developing Guidance Documents
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Ethical Decision Making and Dementia Developing Guidance Documents This paper presents a draft guidance document that addresses the complexities of end-of-life decision making and dementia. The aim of this guidance document is to develop an ethical framework to support ethically and legally sound end-of-life decision-making for people with dementia in diverse healthcare and community settings in Ireland. It is, in part, based on a review of the argument-based ethics literature as well as national and international ethical guidelines on end-of-life decision making and dementia care (e.g. Nuffield Council, Dementia: Ethical Issues 2009; McCarthy et al, End-of-Life Care: Ethics and Law 2011; Berlinger et al, Hastings Center Guidelines for Decisions on Life Sustaining Treatments and Care Near the End of Life 2013). The guidance document describes and explains the key ethical values at risk in end-of-life decision making for individuals with dementia. It considers a number of case studies (i.e. advance planning, refusal of basic care, family conflict and interprofessional conflict about treatment withdrawal) that capture some of the key ethical dilemmas and arguments that arise in end-of-life decision-making for people with dementia. It also suggests some of key ethical responsibilities of health professionals, families and organisations caring for people with dementia at the end of life. Finally, the paper raises some critical questions about the challenges involved in drawing up guidance documents that address ethical problems. These challenges arise because the ethical realm is complex and uncertain and requires reflection, analysis and clarity. It is also profound and requires imagination and emotional and political intelligence. In short, ethical engagement does not lend itself easily to the usual format of guidance documents - algorithm and bullet point.
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