7 minute read
Research
Improving care in end-stage dementia with the End of Life Care Assessment Tool for Dementia
This study is being undertaken by Carolyn Bourke (Moir) who is a PhD candidate at the University of Notre Dame, Australia. PhD candidate Carolyn Bourke (Moir) has worked in Residential Aged Care for over 20 years as a facility clinical manager and as a palliative consultant. She has observed first-hand the challenges surrounding end of life care for people with advanced dementia. The study is focused on developing an assessment tool called the End-of-Life Care Assessment Tool for Dementia (EoLCATD). The EoLC-ATD will be used by registered nurses to identify when a person living with dementia is in the advanced stage. The tool identifies discrete changes in the person’s bio-psychosocial health status and different areas of function in advanced dementia and, thus, provides relevant data to plan and deliver individualised end of life care. The tool will be of benefit to people with advanced dementia and reduce the variability in end-of-life care that currently occurs in Australian Residential Aged Care (RAC) services (Homes) and community services. The issue that staff face in planning end-of-life care with a person living with advanced dementia, is that very often the person is unable to express their needs, explain the
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symptoms of late-stage disease and make decisions about care and Carolyn treatment choices. Features of this irreversible incurable progressive Bourke neurodegenerative disease include (Moir) an inability to recognise familiar objects, surroundings and people, increasing physical frailty with balance issues, difficulty with eating and incontinence. In the advanced stage the person may be aphasic, bed/chair fast, doubly incontinent, unable to attend to activities of living, swallow, and recognise and acknowledge close family. It is of significant concern that aged care staff may fail to recognise when a person with advanced dementia requires palliative care before this advanced-stage occurs. A review of the literature indicates that while instruments exist to screen, measure progression and stage dementia, these generally focus only on changes in physical and cognitive function. A few instruments focus on symptoms of ‘suffering’ in advanced and late-stage dementia. Currently, no single validated dementia assessment instrument identifies the
range of cognitive, physiological, psychological, social, spiritual, and behavioural manifestations that distinguish the experience and expression of advanced dementia. Similarly, there is no validated instrument that can assist registered nurses to determine the unique palliative care requirements of persons with advanced and end-stage dementia covering their cognitive, physiological, psychological, social, spiritual needs. The End of Life Care Assessment Tool for Dementia (EoLCATD) will address this lack, by helping registered nurses to identify the unique and multi-domain cardinal signs and symptoms specific to advanced dementia, for the purpose of planning and facilitating timely palliative care that is individualised to the person.
The study employs mixed methods to develop and establish the reliability and validity the EoLC-ATD. An Expert Advisory Group has been involved in advising on the research questions, topic focus, instrument domains and items and study methodology. EAG members represent aged, palliative and dementia care, nursing, allied health and medicine, and include consumers, clinicians, managers and researchers in the field. The tool draws together validated assessment constructs from many sources and incorporates aged care, palliative care and dementia expertise. Over five stages the study has involved: a review of existing instruments measuring dementia staging, progression and diagnosis, behavioural and emotional assessment in dementia, and palliative care pathways for a range of terminal illnesses; focus groups with registered nurses from the aged care setting to obtain advice on the cardinal signs and symptoms of advanced and endstage dementia that they observe in their practice; compilation of a set of items representing the cognitive, physiological, psychological, social, spiritual, and behavioural manifestations of advanced dementia; review and rating of the item bank by dementia experts and researchers through three Delphi rounds; piloting the Delphi-recommended draft EoLCATD items with 10 people living with advanced dementia; and testing of the final EoLC-ATD in 100 residents with advanced dementia across eight Care Homes (metropolitan, regional and rural). The EoLC-ATD is in the final stage of testing.
The EoLC-ATD will be incorporated into the current assessments for the aged care sector to support the timely and holistic assessment of the person with advanced dementia, to ensure that their unique symptoms and needs are identified early, managed well and monitored regularly.
meet & greet
Dr Annmarie Hosie.
I started working in palliative care in 2000 and immediately knew I had found my working ‘home’. Prior to that role in the Illawarra After Hours Palliative Care Service, I had worked for many years as a registered nurse in a range of settings, including orthopaedics, high-dependency, surgical, medical and rehabilitation. The difference I noticed in palliative care was that our focus was more on the whole person, and their family, and I learnt so much about the good that could be done for people at the end of life through simple interventions and loving presence.
In that role I also learnt how important teamwork, self-care, and ethical, evidence-based practice was to ensure that we achieve the goal of palliative care, which is to improve patients’ and families’ quality of life. I learnt more again through completing a Masters in Palliative Care in Aged Care at Flinders University 2005–09. During these years, I transitioned into a Care Coordinator role at the Illawarra Retirement Trust (where my appreciation of older people grew) and then on to Clinical Trials Nurse role at Calvary Health Care Kogarah.
It was through working on the Risperidone study at Calvary that my eyes were first opened to the problem of delirium in palliative care. Delirium is so common for people in palliative care settings that it seemed (then) as though we didn’t notice it; or if we did, we considered it a normal ‘rite of passage’. Like many other clinicians, I couldn’t even correctly spell delirium.
It was through sitting with patients and performing structured assessments of their awareness and cognition for the first time in over 20 years of nursing that I finally saw and heard what delirium was like for them, and it wasn’t good. I realised we needed to do better and decided to begin a PhD to study delirium in palliative care. It was at this point that Professor Jane Phillips providentially crossed my path. Like all the many generous mentors I’ve been blessed with, as my principal PhD supervisor Jane gave me the necessary guidance and support for me to grow again in my palliative care career, this time into a researcher. Since completing my PhD in 2015, I have worked fulltime in palliative care research, first as a coordinator of a national clinical trial, then as a post-doctoral research fellow at IMPACCT, UTS, and now in my current role of Associate Professor in Palliative Care Nursing at the University of Notre Dame Australia and St Vincent’s Health Network Sydney.
What has become increasingly clear to me over this time is that it is indeed the simple things that matter most to patients and families at the end of life, and that these things also protect us from delirium. By ‘simple things’, I mean fresh air, natural light and surrounds, movement, food and drink, sleep, cleanliness, and most of all, loving and meaningful connection and communication with others. I believe that a re-valuing of these fundamental human needs – in our hearts and minds as well as in the design and processes of our care environments – is essential to us fulfilling Dame Cicely Saunders’ promise (and ours) to help others to live until their last moments of life. This deeply humane and hopeful approach to palliative care is also that of the Executive, staff, and committee of Palliative Care NSW. It’s been a privilege to work with such committed colleagues, even distantly during COVID-19.
Last up, to my fellow PCNSW members: keep up the good work, and I am looking forward to meeting you in person in 2022!
Palliative Care Quarterly
Spring-Summer / 2021
Palliative Care NSW
Suite 706, 50 Clarence St, Sydney NSW 2000 02 8076 5600 / palliativecarensw.org.au
