Let Me Decide
Let Me Decide
The effect of simultaneous implementation of an advance care planning program and a palliative care initiative on end-of-life care in a long term care setting
This research program aims to show the effect of implementing advance care planning with the advance care directive 'Let me decide' and a palliative care program (focusing on the educational and resource needs pertaining to end-of-life care) in long term care (LTC) settings. This is a highly topical area given the recent publications of strategies and frameworks to improve end-of-life care, particularly for those with non malignant life limiting illnesses [1-3], and the emerging legislation on advance care directives (ACDs) in Europe and Ireland . About a fifth of all deaths currently occur in LTC, increasingly it is in LTC where we will spend our last days and increasingly where we will die . The growth in the proportion of deaths occurring in LTC is a trend which has been seen in many other countries including the United States of America (USA) , the United Kingdom (UK) , and Australia . Considering the rising life expectancy, growing older population and societal changes in Ireland, this trend is likely to continue.
To date, there have been few studies published that involve the use of ACDs in LTC in Europe. Recent Cochrane systematic reviews of end-of-life care pathways  and interventions to improve palliative care in LTC  have shown a paucity of evidence in these areas. Though some researchers in other countries have examined either advance care directives in LTC or palliative care initiatives, none have used the type of ACD proposed in this study, and few have investigated the effect of such interventions on patients or their families. Research on the effect of such interventions has tended to focus on outcome measures at an organisational rather than a clinical level. So, for example, although they measured whether pain was assessed, none looked at whether pain was treated satisfactorily, nor was the issue of costs addressed. This study will contribute to knowledge in this area by not only looking at organisational markers of quality of end-of-life care, ACD completion rates, compliance with ACDs and the feasibility of implementing such initiatives in LTC but also outcomes measuring the clinical effects of the intervention and their cost implications. This information is currently lacking.
This program consists of two major projects, one funded by the Irish Hospice Foundation and one by the Health Research Board of Ireland. To date, one project is completed and one has begun.
The Let Me Decide Implementation Project
This study implemented advance care planning using ACDs, combined simultaneously with a palliative care educational program, in LTC. The first phase used a controlled before and after study design to build on previous research in this area by Prof Molloy (Principal Investigator) .
The program was introduced into 5 nursing homes and 1 hospice. Several instruments measuring quality of life and symptom management in people with dementia and cognitive impairment in nursing homes were developed including the SPELE . In the three years of the project the investigators successfully implemented these programs in nursing homes and completed the development of the novel outcome measures (symptom management and quality of life) for use in larger randomized trials.
The Evaluating the Impact of the Systematic Implementation of Advance Care Directives and Palliative Care Education on Quality of Care at End of Life in Long Term Care Settings Project
The Let Me Decide The Let me decide programme recently funding from the Health Reserch Board of Ireland to investigate the effect of advance care directives in long term care institutions in Ireland. The project entitled “Evaluating the Impact of the Systematic Implementation of Advance Care Directives and Palliative Care Education on Quality of Care at End of Life in Long Term Care Settings”, received €324,093 in 2014 to run for a total of three years.
The purpose of this study is to evaluate the impact of implementing advance care planning (ACP) with the “Let Me Decide” advance care directive (LMD-ACD) and a palliative care programme focusing on quality of care at end-of-life in long term care (LTC) facilities in Ireland. It is hypothesised that this intervention will improve quality of death and dying, reduce unnecessary heathcare utilisation and costs, and increase knowledge and awareness of palliative care strategies and advance care planning among healthcare professionals.
An initial parallel-arm cluster randomized trial with subsequent incomplete cross-over, whereby the initial control arm converts to active. Six LTC facilities will be recruited to this pilot study and matched based on their clinical/demographic profile. Three will be randomly assigned to the control group and three to the intervention group.
In order to garner a deeper insight into the current end of life culture in long term care facilities in southern Ireland, 80 homes in the Munster region were surveyed regarding their understanding of advanced care directives and quality of care at end of life. From the survey responses six homes were matched and randomised by the Clinical Research Facility. An education package has been decided upon by the management committee including but not limited to a series of videos and presentations on advance care directives and palliative care. These videos and presentations deal with both the theory and practical nature of the topic by demonstrating the real life implementation of an advance care directive with a competent person as well as a person of limited capacity. Combined with each timestamped video is a detailed explanation of the issues involved as well as questions specifically designed to encourage discussion and peer learning around the topic. Outcomes of the study and the education involved within will be measured using a specially designed software system to capture and report on over 1800 different variables from validated tools such as the QODD, SPELE, and Self Determination Scale.
Irish Hospice Foundation and Health Services Executive, Palliative Care for All Integrating Palliative Care into Disease Management Frameworks, 2008, Irish Hospice Foundation and Health Service Executive: Dublin.
Department of Health, End of Life Care Strategy: Promoting high quality care for all adults at the end of life, Department of Health, 2008: London. 3. http://www.goldstandardsframework.org.uk/.
Law Reform Commission, Report, Bioethics: Advance Care Directives (LRC 94-2009), 2009: www.lawreform.ie.
McKeown, K., Haase, T., Twomey, S., Report 1 Resources and Facilities for End of Life Care in Hospitals in Ireland, 2010, Irish Hospice Foundation: Dublin.
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Cornally N, McGlade C, Weathers E, Daly E, Fitzgerald C, O'Caoimh R, Coffey A, Molloy DW. Evaluating the systematic implementation of the 'Let Me Decide' advance care planning programme in long term care through focus groups: A user's perspective. BMC Palliative Care 2015, in press