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Delirium Epidemiology, Systems and Nursing Practice in Palliative Care Inpatient Settings: a Descriptive Mixed Methods Project (The Depac Project)

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Delirium Epidemiology, Systems and Nursing Practice in Palliative Care Inpatient Settings: a Descriptive Mixed Methods Project (The Depac Project) The University of Notre Dame Australia ResearchOnline@ND Theses 2015 Delirium epidemiology, systems and nursing practice in palliative care inpatient settings: A descriptive mixed methods project (The DePAC Project) Annmarie Hosie University of Notre Dame Australia Follow this and additional works at: https://researchonline.nd.edu.au/theses Part of the Nursing Commons COMMONWEALTH OF AUSTRALIA Copyright Regulations 1969 WARNING The material in this communication may be subject to copyright under the Act. Any further copying or communication of this material by you may be the subject of copyright protection under the Act. Do not remove this notice. Publication Details Hosie, A. (2015). Delirium epidemiology, systems and nursing practice in palliative care inpatient settings: A descriptive mixed methods project (The DePAC Project) (Doctor of Philosophy (College of Nursing)). University of Notre Dame Australia. https://researchonline.nd.edu.au/theses/119 This dissertation/thesis is brought to you by ResearchOnline@ND. It has been accepted for inclusion in Theses by an authorized administrator of ResearchOnline@ND. For more information, please contact [email protected]. ____________________________________________________________________ Delirium epidemiology, systems and nursing practice in Palliative Care inpatient settings: a descriptive mixed methods project (The DePAC Project) Annmarie Hosie Registered Nurse Bachelor of Health Science (Nursing) Master of Palliative Care in Aged Care A thesis submitted in fulfilment of the requirements for the degree of Doctor of Philosophy School of Nursing Darlinghurst Campus 2015 ____________________________________________________________________ Tota Tua ego sum, et omnia mea tua sunt. Accipio te in mea omnia. Praebe mihi cor tuum, Maria. ii ____________________________________________________________________ ____________________________________________________________________ ACKNOWLEDGEMENTS There are so many people to thank for the gifts of their support, encouragement and friendship throughout the conception and completion of this PhD that it is difficult to acknowledge each person on this page. I will do my best. The right place to begin is with my wonderful family. My deep thanks for my husband Richard and his amazing patience and acceptance, and for our children, Charlie, Connor and Evie, who have each good-humouredly sacrificed many things while I undertook this work. Thank you especially, my dear family, for our daily evening meals that sustained me throughout this full time. My thanks also for the abiding love of my parents, Katherine and Mick, sister Kate, and brothers Bernard and Matthew. For the beginning awareness and inspiration, I would like to thank Dr Christine Sanderson. This research has flowed from her enthusiastic spirit and generosity in teaching me about delirium and its impact upon people receiving palliative care. To have met my supervisor Professor Jane Phillips and experienced her wise and kind guidance is one of the great blessings of my life. It is difficult to express the full extent of my gratitude for Jane’s constant and gracious support of this research, the writing, and of me. It cannot be done by words, so my hope is that it will be through life-long continuation of our friendship and united work for others. My heartfelt thanks go also to Professor Patricia Davidson, Professor Liz Lobb and Associate Professor Meera Agar, who are outstandingly generous and collaborative supervisors and inspirational women. I am also grateful to Dr Paula Mohacsi, Caroline Yeh and Dr Lawrence Lam, for contributing their time and expertise to this research. To all who supported this research at the participating sites, especially Claudette Elias-Milan, Jennifer Smith, Triptee Gurung, Penny West, Aane Beaton, Dr Richard Chye and Professor Jane Ingham. A particular thank you to Cathy Lambert of the Cunningham Centre for Palliative Care, for her cheerful, ever-ready organisational skill and support. I am in awe of the support, teaching and friendship given by Philippa Cahill, Nicole Heneka, Teresa Assen, Claudia Virdun, Caleb Ferguson, Dr Louise Hickman, Dr Tim Luckett, Dr Melanie Lovell, Dr Phillip Newton and Dr Joanne Lewis. My thanks also to Priyanka Bhattarai, for caring that patients’ delirium be recognised; and to Professor Alasdair McLullich, Dr Daniel Davis, Dr Andrew Teodorczuk, Dr Peter Lawlor, Dr Shirley Bush, Dr Karen Neufeld and Professor Gideon Caplan, for the warmth of their welcome into the world of delirium research and advocacy. At the beginning my supervisor Jane advised me that a PhD was a journey into the unexpected, and she was right. While this work led me knowingly into a deeper understanding of delirium, palliative care, nursing and research, the unexpected and best understanding that came during this time is that I am Catholic and part of the body of the Church. My everlasting thanks are for Professor Wes Ely who, from the time of a delirium conference in Belgium, invited and then guided me safely back onto the path of the right journey, which is the one walked in love with Jesus Christ. It is He who explains this work, and who lights the way forward. Thank you to all who so willingly participated in this research, and the many patients and their families who have taught me about life and death, love and delirium. iii ____________________________________________________________________ ____________________________________________________________________ FUNDING SOURCES The following funding sources are gratefully acknowledged: Australian College of Nursing, Nursing and Allied Health Scholarship and Support Scheme, Continuing Professional Development Scholarships. Translational Cancer Research Network, Conference and Professional Development Grant, Sydney, NSW, Australia. Australian Postgraduate Award, The University of Notre Dame Australia, Sydney, NSW, Australia. iv ____________________________________________________________________ ____________________________________________________________________ ABSTRACT Background Delirium is a distressing and serious acute neurocognitive disorder frequently experienced by hospitalised patients yet under-recognised by nurses. Aim To identify the actions required to improve the capabilities of specialist inpatient palliative care nurses to recognise and assess delirium. Design A two-phase sequential transformative mixed methods project, involving five studies and underpinned by a knowledge translation conceptual framework – collectively termed the DePAC project. Methods A mixed methods design was used to examine delirium in palliative care inpatient settings from epidemiological, systems and nursing practice perspectives. Participants were nurses, physicians, allied health professionals, managers and patients of Australian palliative care inpatient services. Phase one focused on scoping the problem of delirium in palliative care and included a systematic review on delirium prevalence and incidence, cross sectional study and environmental scan. During Phase two, the Critical Incident Technique and focus groups were used to explore palliative nurses’ delirium experiences, perceptions and capabilities. Data from each phase were integrated at the conclusion of the project. Results Palliative care inpatients are a geriatric population at risk of delirium. Internationally, delirium prevalence in palliative care inpatient units ranged from 26% to 62% during admission, increasing up to 88% in the last hours of life. In the cross-sectional study, one in five (19%) palliative care inpatients were diagnosed as delirious in a 24-hour period. Almost all evidence-based guidelines for delirium exclude evidence and recommendations directly acknowledging the care needs of patients who are approaching the end of their life. Strategies for recognising and assessing delirium are missing from palliative care unit systems. Ambiguous terminology and nurses’ poor conceptual understanding of delirium contributes to v ____________________________________________________________________ ____________________________________________________________________ under-recognition and inadequate assessment. The Nursing Delirium Screening Scale is brief, simple and feasible for use, yet optimal delirium recognition and assessment by nurses also requires rapport with patients, engagement of family, validation of delirium tools in this setting, point-of-care guidance, education relevant to palliative care contexts and interdisciplinary teamwork. Conclusion More careful navigation of palliative care patients away from an incipient or existing episode of delirium is entirely possible and must become core business within specialist palliative care inpatient units. Building the capacity of palliative care nurses to provide exemplary delirium care will be achieved by transforming the DePAC recommendations into concrete action. vi ____________________________________________________________________ ____________________________________________________________________ RECOMMENDATIONS That specialist inpatient palliative care units promote optimal cognitive and physical function for all patients. That palliative care patients and their family be routinely informed about delirium and supported during and after an episode. That all Australian specialist inpatient palliative care teams use delirium diagnostic criteria and validated delirium tools to confirm and communicate observations of patients’ neurocognitive changes. That the Palliative
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