‘Opening Conversations’: Developing a model for the Alzheimer Society of Ireland of best practice palliative care interventions for people with dementia and their carers.
Author
Ms Annie Dillon
RGN, RPN, RM, MA, MSc, Manager, Practice Development & Innovation, Alzheimer Society of Ireland
Abstract
‘Opening Conversations’ aimed to develop a model of palliative care interventions within, and beyond, Alzheimer Society of Ireland services. A number of objectives were identified including clarifying appropriate palliative care interventions within dementia care contexts, establishing with service users and providers, the extent of palliative care needs in order to develop a model for best practice and identifying awareness of the illness progression and preparation for end-of-life care amongst people with dementia and their carers. This presentation will focus on conversations held with people with dementia and their family/carers about end-of-life care. The needs of people with dementia at the end of life differ in some key respects to other patient groups. The research concluded that it is difficult to have conversation about end-of-life care needs when it is already difficult to talk about having dementia. The stigma attached to dementia can lead to difficulties in discussing the illness and delays in ascertaining an accurate diagnosis, thus increasing social isolation. The illness characteristics, in particular, cognitive impairment, gives a greater imperative to talk about illness progression and end of life care at the very early stage of the condition.
About the presenter
Annie Dillon, Manager, Practice Development & Innovation, joined the Alzheimer Society of Ireland National Office team two and a half years ago. Annie manages quality assurance and practice development initiatives across the Society. She also takes a lead on innovative projects and was the coordinator of the Opening Conversations research project. Annie contributes as guest lecturer on the MSc Dementia in Trinity College, Dublin and represents the Alzheimer Society on the Steering Group of the HSE National Dementia Education Programme. She is a qualified nurse and Midwife (RGN, RPN, RM) and holds an MSc (Education & Training Management) and an MA.
The problem of moral risk, moral luck and moral safety in end-of-life, decision-making in dementia care
Author
Professor Megan-Jane Johnstone, Phd, RN, Professor of Nursing/Director, Centre for Quality and Patient Safety Research, Deakin University, Australia
Abstract
It is commonly assumed that, in the realm of ethical decision making at the end-of-life, ‘risk’ and ‘luck’ do not intrude. Given the contextual variables and associated uncertainties that inevitably impinge on end-of-life decision making in this realm, the intended moral outcomes of decision-makers may not always be realised, however. Indeed, the decisions made may sometimes have unintended harmful consequences. This is particularly so in dementia care contexts where decision making may be unconsciously influenced by fear of the disease and the stigmatisation of people whose decision-making capacity tends to be compromised as their disease progresses. There is a need to examine the nature and possible implications of moral risk and moral luck in end-of-life decision making in dementia care as well as the possible mechanisms that could be employed to help improve the moral safety of those who may find themselves at the sharp end of the decisions that are ultimately made. In this paper brief attention will be given to examining the notions of ‘moral risk’, ‘moral luck’ and ‘moral safety’ in end-of-life decision making in dementia care and how these processes might be better managed in clinical care, practitioner education, and policy making contexts.
About the presenter
Professor Megan-Jane Johnstone currently holds the academic chair in nursing at Deakin University, Melbourne, Australia. She is also the Director of the Deakin University Centre for Quality and Patient Safety Research where she leads the Health Care Ethics and Policy Development program of research. Professor Johnstone is renowned internationally for her scholarly research in the area of health care ethics. Her work has focused on a range of issues including: clinical risk management and patient safety ethics, health and human rights, cross-cultural health care, end-of-life decision-making, health policy ethics, health care disaster ethics and professional conduct. Professor Johnstone is the author of numerous journal articles and several books including the internationally acclaimed: Bioethics a Nursing Perspective (Elsevier Science, now in its 5th edition) and Ethics in Nursing Practice: a Guide to Ethical Decision Making (Blackwell Publishing, co-authored with Sara T. Fry, USA).
ACP, ICPs and ethical dilemmas in end of life dementia care
Author
Dr David Findlay
BSc(Hons), MBChB, FRCPsych, Consultant Psychiatrist, NHS Tayside, United Kingdom
Abstract
Scotland’s national dementia strategy has prioritised post-diagnostic information and support against a background of preferred location for end of life care already being one of the condition-specific standards for dementia Integrated Care Pathways (ICPs). Diagnosis is often the trigger for creating Powers of Attorney and this presentation will argue it should also signal the start of Advance Care Planning (ACP). End of life treatment decisions are often complex and a structured approach to analysing emergent ethical dilemmas will be discussed along with the balance between prior wishes and values of the individual and contemporaneous input from the multidisciplinary team plus relevant proxies. Embedding ACP in the ICP’s systematic comparison of care actually delivered with that planned hopefully facilitates a dynamic process rather than a static document. Balancing intensity of medical input with quality of life considerations requires that issues of consent have proper regard to information and facility as well as mental capacity. Maintaining the person with advanced dementia firmly at the centre of a shared decision making system is explored by illustrative examples in a bid to tap into anticipated audience expertise, given the setting of the conference.
about the presenter
David Findlay has worked as consultant old age psychiatrist at Royal Dundee Liff Hospital from 1991, having trained in Glasgow and Dundee. He has held additional part time posts in medical management then as policy adviser on older people to the health department of the new Scottish government. He was inaugural adviser in psychiatry of old age to Scotland’s chief medical officer and currently serves on the Dementia Forum overseeing implementation of 2010’s national dementia strategy. Dr Findlay’s interests include mental capacity and ethical dilemmas, Parkinson’s disease psychiatry and liaison psychiatry of old age. For the Royal College of Psychiatrists in Scotland he formerly chaired the special interest group in philosophy and currently chairs the Old Age Faculty. He is Tayside clinical lead for the Scottish Dementia Clinical Research Network as well as chairing Tayside and Scottish groups responsible for advising on implementation of Integrated Care Pathways in dementia.