Carol Fitzgerald

Advance care planning: A systematic review of randomised controlled trials conducted with older adults.

Advance care planning (ACP), involving discussions between patients, families and healthcare professionals on future healthcare decisions, in advance of anticipated impairment in decision-making capacity, improves satisfaction and end-of-life care while respecting patient autonomy. It usually results in the creation of a written advanced care directive (ACD). This systematic review examines the impact of ACP on several outcomes (including symptom management, quality of care and healthcare utilisation) in older adults (>65years) across all healthcare settings. Nine randomised controlled trials (RCTs) were identified by searches of the CINAHL, PubMed and Cochrane databases. A total of 3646 older adults were included (range 72-88 years). Seven studies were conducted with community dwellers and the other two RCTs were conducted in nursing homes. Most studies did not implement a standardised ACD, or measure the impact on quality of end-of-life care or on the death and dying experience. All studies had some risk of bias, with most scoring poorly on the Oxford Quality Scale. While ACP interventions are well received by older adults and generally have positive effects on outcomes, this review highlights the need for well-designed RCTs that examine the economic impact of ACP and its effect on quality of care in nursing homes and other sectors.

Risk prediction in the community: A systematic review of case-finding instruments that predict adverse healthcare outcomes in community-dwelling older adults

Few case-finding instruments are available to community healthcare professionals. This review aims to identify short, valid instruments that detect older community-dwellers risk of four adverse outcomes: hospitalisation, functional-decline, institutionalisation and death. Data sources included PubMed and the Cochrane library. Data on outcome measures, patient and instrument characteristics, and trial quality (using the Quality In Prognosis Studies [QUIPS] tool), were double-extracted for derivation-validation studies in community-dwelling older adults (>50 years). Forty-six publications, representing 23 unique instruments, were included. Only five were externally validated. Mean patient age range was 64.2-84.6 years. Most instruments n=18, (78%) were derived in North America from secondary analysis of survey data. The majority n=12, (52%), measured more than one outcome with hospitalisation and the Probability of Repeated Admission score the most studied outcome and instrument respectively. All instruments incorporated multiple predictors. Activities of daily living n=16, (70%), was included most often. Accuracy varied according to instruments and outcomes; area under the curve of 0.60-0.73 for hospitalisation, 0.63-0.78 for functional decline, 0.70-0.74 for institutionalisation and 0.56-0.82 for death. The QUIPS tool showed that 5/23 instruments had low potential for bias across all domains. This review highlights the present need to develop short, reliable, valid instruments to case-find older adults at risk in the community.

Evaluating the systematic implementation of the ‘Let Me Decide’ advance care planning programme in long term care through focus groups: staff perspectives

BackgroundThe ‘Let Me Decide’ Advance Care Planning (LMD-ACP) programme offers a structured approach to End-of-Life (EoL) care planning in long-term care for residents with and without capacity to complete an advance care directive/plan. The programme was implemented in three homes in the South of Ireland, with a view to improving quality of care at end of life. This paper will present an evaluation of the systematic implementation of the LMD-ACP programme in the homes.MethodsFocus groups were conducted with 15 Clinical Nurse Managers and two Directors of Nursing where the programme had been implemented. A semi-structured topic guide was used to direct questions that addressed implementation process, challenges implementing advance care planning, advantages/disadvantages and recommendations for the future. Data was analysed using manifest content analysis.ResultsFive key categories emerged, with 16 corresponding subcategories. These subcategories emerged as a result of 37 codes. Key benefits of the programme included enhancing communication, changing the care culture, promoting preference-based care and avoiding crisis decision making. Establishing capacity among residents and indecision were among the main challenges reported by staff.DiscussionA number of recommendations were proposed by participants and included multi-disciplinary team involvement, and a blended approach to education on the topic. According to participants relationships with residents deepened, there was a more open and honest environment with family, end of life care focused more on symptom management, comfort and addressing spiritual care needs as opposed to crisis decision making and family conflict.ConclusionThe introduction of the LMD-ACP programme enhanced the delivery of care in the long-term care sites and led to a more open and positive care environment.

Better palliative care for people with a dementia: summary of interdisciplinary workshop highlighting current gaps and recommendations for future research

BackgroundDementia is the most common neurological disorder worldwide and is a life-limiting condition, but very often is not recognised as such. People with dementia, and their carers, have been shown to have palliative care needs equal in extent to those of cancer patients. However, many people with advanced dementia are not routinely being assessed to determine their palliative care needs, and it is not clear why this is so.Main bodyAn interdisciplinary workshop on “Palliative Care in Neurodegeneration, with a focus on Dementia”, was held in Cork, Ireland, in May 2016. The key aim of this workshop was to discuss the evidence base for palliative care for people with dementia, to identify ‘gaps’ for clinical research, and to make recommendations for interdisciplinary research practice. To lead the discussion throughout the day a multidisciplinary panel of expert speakers were brought together, including both researchers and clinicians from across Ireland and the UK. Targeted invitations were sent to attendees ensuring all key stakeholders were present to contribute to discussions. In total, 49 experts representing 17 different academic and practice settings, attended.Key topics for discussion were pre-selected based on previously identified research priorities (e.g. James Lind Alliance) and stakeholder input. Key discussion topics included: i. Advance Care Planning for people with Dementia; ii. Personhood in End-of-life Dementia care; iii. Topics in the care of advanced dementia at home. These topics were used as a starting point, and the ethos of the workshop was that the attendees could stimulate discussion and debate in any relevant area, not just the key topics, summarised under iv. Other priorities.ConclusionsThe care experienced by people with dementia and their families has the potential to be improved; palliative care frameworks may have much to offer in this endeavour. However, a solid evidence base is required to translate palliative care into practice in the context of dementia. This paper presents suggested research priorities as a starting point to build this evidence base. An interdisciplinary approach to research and priority setting is essential to develop actionable knowledge in this area.

Healthcare recommendations from the Personalised ICT Supported Service for Independent Living and Active Ageing (PERSSILAA) Study

In the face of demographic ageing European healthcare providers and policy makers are recognising an increasing prevalence of frail, community-dwelling older adults, prone to adverse healthcare outcomes. Prefrailty, before onset of functional decline, is suggested to be reversible but interventions targeting this risk syndrome are limited. No consensus on the definition, diagnosis or management of pre-frailty exists. The PERsonalised ICT Supported Service for Independent Living and Active Ageing (PERSSILAA) project (2013-2016 under Framework Programme 7, grant #610359) developed a comprehensive Information and Communication Technologies (ICT) supported platform to screen, assess, manage and monitor pre-frail community-dwelling older adults in order to address pre-frailty and promote active and healthy ageing. PERSSILAA, a multi-domain ICT service, targets three pre-frailty: nutrition, cognition and physical function. The project produced 42 recommendations across clinical (screening, monitoring and managing of pre-frail older adults) technical (ICT-based innovations) and societal (health literacy in older adults, guidance to healthcare professional, patients, caregivers and policy makers) areas. This paper describes the 25 healthcare related recommendations of PERSSILAA, exploring how they could be used in the development of future European guidelines on the screening and prevention of frailty.

The Community Assessment of Risk and Treatment Strategies (CARTS): An Integrated Care Pathway to Manage Frailty and Functional Decline in Community Dwelling Older Adults

The Community Assessment of Risk & Treatment Strategies (CARTS) is an evolving integrated care pathway for community-dwelling older adults, designed to screen for and prevent frailty through the use of innovative, novel targeted risk screening instruments, comprehensive geriatric assessment, tailored interventions and integrated patient-centred multi-disciplinary monitoring. This multimodal service aims to positively affect risk and frailty transitions, to reduce adverse healthcare outcomes and achieve the European Innovation Partnerships on Active and Healthy Ageing’s (EIP-AHA) goal of improved healthy life years. The CARTS programme builds on the activities and deliverables defined within Action Plan A3 of the EIP-AHA ‘Prevention and early diagnosis of frailty, both physical and cognitive, in older people’, aiming to use information and communications technology (ICT) to facilitate its implementation in clinical practice. The CARTS instruments have been piloted in Ireland as well as in Portugal, Spain and Australia. An update on the research conducted to date and future plans are presented.

ICT-Supported Interventions Targeting Pre-frailty: Healthcare Recommendations from the Personalised ICT Supported Service for Independent Living and Active Ageing (PERSSILAA) Study

As society ages, healthcare systems are preparing for an increasing prevalence of frail, co-morbid and older community-dwellers at risk of adverse outcomes including falls, malnutrition, hospitalisation, institutionalisation and death. Early intervention is desirable and pre-frailty, before onset of functional decline, may represent a suitable transition stage to target, albeit evidence for reversibility and appropriate interventions are limited. No consensus on the definition, diagnosis or management of pre-frailty exists. This work describes 25 healthcare related findings from the recently completed PERsonalised ICT Supported Service for Independent Living and Active Ageing (PERSSILAA) project, funded under the 2013–2016 European Union Framework Programme 7 (grant #610359). PERSSILAA developed a comprehensive Information and Communication Technologies (ICT)-supported platform to screen, assess, intervene and then monitor community-dwellers in two regions (Enschede in the Netherlands and Campania in Italy) in order to address pre-frailty and promote active and healthy ageing, targeting three important pre-frailty subdomains: nutrition, cognition and physical function. Proposed definitions of pre-frailty, ICT-based approaches to screen and monitor for the onset of frailty and targeted management strategies employing technology across these domains are described. The potential of these 25 healthcare recommendations in the development of future European guidelines on the screening and prevention of frailty is explored.

The inter-rater reliability of the Risk Instrument for Screening in the Community

Predicting risk of adverse healthcare outcomes is important to enable targeted delivery of interventions. The Risk Instrument for Screening in the Community (RISC), designed for use by public health nurses (PHNs), measures the 1-year risk of hospitalisation, institutionalisation and death in community-dwelling older adults according to a five-point global risk score: from low (score 1,2) to medium (3) to high (4,5). We examined the inter-rater reliability (IRR) of the RISC between student PHNs (n=32) and expert raters using six cases (two low, medium and high-risk), scored before and after RISC training. Correlations increased for each adverse outcome, statistically significantly for institutionalisation (r=0.72 to 0.80, p=0.04) and hospitalisation (r=0.51 to 0.71, p<0.01) but not death. Training improved accuracy for low-risk but not all high-risk cases. Overall, the RISC showed good IRR, which increased after RISC training. That reliability fell for some high-risk cases suggests that the training programme requires adjustment to improve IRR further.

O-28 Evaluating the systematic implementation of the ‘let me decide’ programme in long term care: A user’s perspective

Background The ‘Let Me Decide’ Advance Care Planning programme (LMD-ACP) offers a structured approach to End- of- Life (EoL) care planning in long-term care for both residents with and without capacity to complete an advance care directive/plan. The programme was implemented into three homes in the South of Ireland. Aim To qualitatively evaluate the systematic implementation of the ‘Let Me Decide’ advance care directive and palliative care education programme in three long- term care sites Methods Focus groups were conducted with staff from the homes (n = 17). The sample consisted of 15 Clinical Nurse Managers and two Directors of Nursing. A semi-structured topic guide was used to direct the questions and these addressed the implementation process, challenges implementing advance care planning, advantages/disadvantages and recommendations for the future. Results Five key categories were presented, with 16 corresponding subcategories. These subcategories emerged as a result of 37 codes. Key benefits of the programme ranged from enhancing communication, changing the care culture, promoting preference-based care and avoiding crisis decision-making. Establishing capacity among residents and indecision were among the main challenges reported by staff. A number of recommendations were proposed by participants and included a multi-disciplinary team involvement, and a blended approach to education. Conclusion The LMD-ACP has transcended a number of care issues in the homes. Relationships with residents have deepened, a more open and honest environment with family was created, EOL care is now focused on symptom management, comfort and addressing spiritual care needs as opposed to crisis decision making and family conflict.