Author: Dr Irene Hartigan, University College Cork & Dr Rene Gonzales
Date of Publication: November 2022
Philosophers have published on certainties in life, of which death, is one of them and probably one that many people will be least prepared for. Dealing with morbidity and mortality is difficult from several perspectives. End-of-life care practices can be complicated by dementia, often families, and health professionals act as advocates and promote goals of care for those who lack capacity to engage in conversations about decisions that impact their end-of-life care. This requires health care professionals to communicate with family and persons with dementia to understand individual desires and provide care that matches patient’s preferences.
Importantly, for people with dementia, aligning care plans with their preferences and involving family pan be complex when there are limitations or uncertainty around patient cognition and capacity (Golden et al., 2022). Advanced Care/Healthcare Plans (ACP) and/or Advanced Healthcare Directives (AHD) can communicate individuals’ preferences and treatment to family and health professionals, however overall participation in ACP by persons with dementia remains low and ACP has been difficult to implement, underscoring unique challenges in this population (Bryant et al., 2019).
As part of the mySupport Study, an educational intervention, originally developed in Northern Ireland, United Kingdom, entitled ‘the Family Carer Decision Support (FCDS)’ intervention was ‘scaled up’ as an international resource for nursing homes after securing EU JPND funding. The aim of the intervention was to assist nursing home staff in supporting family carers when they need to make difficult decisions about end-of-life care for their relative with advanced dementia. The mySupport study, is a transnational multidisciplinary implementation study and the mySupport symposium facilitated greater exploration of end-of-life care conversations and the process of ACP.
The symposium was called New and emerging models of Advance Care Planning (ACP) for older persons and took place in March 2023 in person in Leiden and online. We have created a series of video podcasts that reflect key snippets from the symposium, and you can listen and watch individual recordings or listen to the full audio podcast prepared by the Irish partners, Dr Irene Hartigan and Dr Nicola Cornally, entitled End-of-life care conversations & care planning for advanced dementia. Prof van den Block and Dr van der Steen present six topics related to Implementing ACP in nursing homes, the goal of being prepared in ACP, approaching ACP at the end of life for people dementia, decisional capacity, relational autonomy and person-centred focus in ACP. The question and answer session was facilitated online and in person, known experts and early career researchers asked questions related to key concepts of ACP (question 1), relational autonomy in ACP in the USA and across Europe (question 3), ACP in different cultures (question 4), protecting persons with dementia in ACP (question 5), ACP in other groups e.g. with or within disabilities (question 6) and ACP in early dementia (question 7). Finally, how to do things in practices can be challenging and making recommendations for improving practice and research in ACP to support individuals in how comfortable they are communicating what matters to the individual is discussed. We hope that you enjoy the reflections, and they are a useful resource to support education and discussion for healthcare professionals and families. Also, further resources can be found on the mySupport study website.
Bryant J, Turon H, Waller A, Freund M, Mansfield E, Sanson‐FisherR. Effectiveness of interventions to increase participation in advance care planning for people with a diagnosis of dementia: a systematic review.Palliat Med. 2019;33(3):262‐273
Golden, B. P., Lum, H. D., & Jones, C. D. (2022). Improving goal‐concordant care in the hospital for patients with dementia in the COVID‐19 era. Journal of Hospital Medicine, 17(5), 412.
Dr Irene Hartigan is a Lecturer at the Catherine McAuley School of Nursing and Midwifery, University College Cork. Over the last 5 years, Irene has been involved in several research projects on dementia. Irene has led several initiatives as part of the knowledge translation and exchange activities, this involved setting up a patient and public involvement group and co-designing the project materials. Irene is a member of PPI Ignite @UCC, a funded project in UCC to develop patient and public involvement in research. Irene has substantial experience in health ageing research and factors associated with end of life for older adults.
Dr Rene Gonzales is a Post-Doctoral researcher in collaboration with the School of Nursing and Midwifery at University College Cork, with a focus on Knowledge Transfer and Exchange and the use of multimedia for dissemination. Rene has extensive multimedia production skills and abilities as well as PhD in medicine.