Does case conferencing for people with advanced dementia living in nursing homes improve care outcomes: Evidence from an integrative review?

Abstract

Objective

This integrative review aimed to appraise the evidence for case conferencing as an intervention to improve palliative care outcomes for older people living with advanced dementia in nursing homes.

Design

An integrative review of English language citations from CINHAL, MEDLINE, PSYCHINFO and CareSearch using a palliative care filter was undertaken. Two reviewers screened 238 titles to find 77 relevant articles which were reviewed in detail to identify nine studies that addressed the specific review questions. The analysis process allowed study characteristics, process and outcome measures along with implementation barriers and facilitators to be identified and the results synthesised.

Results

The highest level of evidence (Level II) was generated by two randomised controlled case conferencing trials which demonstrated enhance medication management for people with dementia living in a nursing home. Several pre-post test studies suggest that case conferencing enhances palliative symptom management and care outcomes in nursing homes. Qualitative evidence suggests that case conferencing is feasible and worthwhile if the identified barriers are addressed and the facilitators optimised.

Conclusions

Case conferencing provides opportunities to improve care palliative care outcomes for older people with dementia by engaging family and all relevant internal and external health providers in prospective care planning. More evidence is needed to determine the efficacy and cost-effectiveness of case conferencing as a strategy for improving care outcomes for older people living with advanced dementia in nursing homes. The evidence generated by this integrative review will be of interest to policy makers, aged care organisations and clinicians alike, especially as services endeavour to meet the increasingly complex care needs of older people admitted to nursing homes with advanced dementia, and the needs of their families.

Introduction

Across the developed world dementia is one of the main causes of disability in later life. Current estimates suggest that 3.4 million Americans (2011), almost one million people in the United Kingdom (UK) (Luengo-Fernandez et al., 2010) and a quarter of a million Australians (Access Economics, 2005) have dementia, with the majority having Alzheimer's Disease (Brookmeyer et al., 2011). The burden of dementia is expected to double in the next 20 years in line with population ageing (Access Economics, 2005). As dementia is a terminal neurological disease which is associated with poor prognostic factors there is a need to optimise the delivery of best evidence based care for this rising population (Ahronheim et al., 1996). Most people with dementia will be managed at home, until their care needs exceed available community resources prompting nursing home admission. Managing advanced dementia in nursing homes is a growing challenge, with more than half of all residents currently admitted having a dementia diagnosis (Access Economics, 2005).

Whilst there is substantial evidence to guide dementia-specific palliative care (Australian Department of Health and Ageing and National Health and Medical Research Council, 2006), many aged care and primary care clinicians lack awareness that a palliative approach is indicated, or find this approach difficult to integrate into dementia care (Hertogh, 2006). Major barriers preventing the delivery of a palliative approach for people with dementia include deficiencies in expertise (Chang et al., 2009), poor communication between services, aged care personnel and/or families, inadequate planning and inconsistent decision-making (Birch and Draper, 2008, Di Giulio et al., 2008). Symptom assessment and management in the context of severe cognitive impairment is complex, especially in the presence of other co-morbid conditions and communication difficulties (Mitchell et al., 2009). Residents’ symptoms such as pain, frequently go unrecognised, under reported and are poorly managed (McAuliffe et al., 2009). People with advanced dementia often experience pneumonia and eating problems requiring focused management and planning (Mitchell et al., 2009). However, diminished verbal communication skills and decision-making capacity, limits residents’ ability to participate in clinical decision making. Medical problems may be inappropriately managed with care escalated to include aggressive treatments such as intravenous antibiotics and hydration and enteral feeding (Sorrell, 2010). Clinically futile treatments compromise residents’ comfort for little or no survival benefit and reduce family satisfaction with end-of-life care (Engel et al., 2006, Givens et al., 2010, Sorrell, 2010).

In response to the increasing prevalence of advanced dementia and its adverse impact on decision-making capacity many jurisdictions have introduced legislation that outlines the required approach for managing this populations care needs (Public Guardianship Office, 2005, NSW Guardianship Tribunal, 2011). Depending on the legislation, once a person has been assessed and deemed not to have capacity to make decisions, a specific person is usually nominated to make clinical decisions on behalf of the person with limited capacity (NSW Guardianship Tribunal, 2011). Very often this person is a family member, and their communication with aged care staff and their involvement in decision-making are important factors in determining their satisfaction with care (Engel et al., 2006).

Family members have defined a ‘good death’ for residents with advanced dementia as receiving appropriate and timely symptom management, clear decision-making, preparation, completion, and affirmation of the whole person (Bosek et al., 2003). Advance care planning has been noted to improve end-of-life care, patient and family satisfaction, and reduces stress, anxiety and depression in surviving relatives. Despite these positive outcomes, too few people with dementia have prospectively documented their end-of-life wishes (Detering et al., 2010); and few nursing homes have effectively embedded advance care planning into routine practice, with the majority tending to initiate discussions about end-of-life treatments late in a resident's illness as opposed to shortly after their admission (Shanley et al., 2009).

In the absence of prospective advance care planning, nursing home personnel are often unwilling or unable to manage complex clinical problems, leading to an acute admission (Mitchell et al., 2007). Hospitalisation is not only frequently frightening for people with dementia, but it is also often associated with iatrogenic events, and is rarely focused on quality of life and is costly (Andrews and Christie, 2009, Hines et al., 2009). Hospitalised patients with dementia are more likely than non-demented patients to have a longer terminal stay, poorer outcomes and less likely to receive palliative treatment or have their families involved in decision-making (Afzal et al., 2010).

A palliative approach aims to improve the quality of life for people with an eventually fatal condition, such as advanced dementia, by reducing suffering through early identification, assessment and treatment of pain, physical, psychological, social, cultural and spiritual needs (Australian Department of Health and Ageing and National Health and Medical Research Council, 2006). In the context of advanced dementia a palliative approach acknowledged the needs of residents and their families and helps facilitate: (i) decision making support and goal setting, including advance care planning; (ii) ensures access to practical aid, community resource and specialist palliative care advice or support as required; and (iii) collaborative and seamless end-of-life care within the care setting of choice (Davidson and Phillips, 2012).

Addressing the complexity of older peoples’ care needs, reducing care costs, preventing disease exacerbation and common geriatric syndromes such as falls and delirium, which are associated with significant morbidity and mortality, requires an interdisciplinary approach to care (American Geriatrics Society, 2006). Internationally, the value of interdisciplinary care and the importance of prospective individualised care planning for a person with dementia are reflected in various policies and standards (Aged Care Standards and Accreditation Agency, 1997, American Geriatrics Society, 2006). Interdisciplinary care enhances the management of the assessment, planning and delivery of care, which is often complicated by a range of psychosocial concerns and issues (American Geriatrics Society, 2006). In the acute geriatric care setting, interdisciplinary care has resulted in a sustained reduction in mortality, improved functional status and reduction in length of stay and fewer nursing home admissions (To et al., 2010). However, interdisciplinary care is dependent on the establishment of systems that facilitate relevant health professionals’ input and collaboration to provide appropriate support and care to the resident and their family, based on need (American Geriatrics Society, 2006).

The configuration and access to medical care in nursing homes vary considerably across the developed world. In the United States (US) onsite physicians are employed directly by nursing homes to manage residents’ medical care, whereas in Australia and the UK, medical care is provided by the resident's General Practitioner (GP), whose core business is providing care outside of the nursing home, which impacts on their availability. Limited access to medical care can contribute to sub-optimal care planning for older people living in a nursing home with advanced dementia. The development of an interdisciplinary care plan for people living with end-stage dementia in US nursing homes significantly decreased discomfort (Kovach et al., 1996) suggesting that interdisciplinary care planning may improve care outcomes for this population. However the large effect size reported in the Kovach et al. (1996) study may reflect that the research team could not be blinded to the intervention (Hall et al., 2011). A recent large systematic review found that despite the complexity of addressing the care needs of both people with advanced dementia in nursing homes and their care givers, there was no direct evidence that addresses improving continuity of care for this population at the end-of-life (Lorenz et al., 2008). Since these studies have been undertaken, case conference planning has been promoted as an important element for improving care outcomes for older people with advanced dementia (Australian Department of Health, 2006, Australian Government Department of Health and Ageing, 2010).

Case conferencing is defined as an approach that brings together relevant health professionals and the residents’ primary decision-makers, usually family members, to discuss the current stage of illness and agree on a person-centred management plan based on best available evidenced-based practice (Abernethy et al., 2006). Case conferencing is one option for facilitating the delivery of interdisciplinary care in nursing homes. An Australian palliative care case conferencing randomised control trial, conducted in the community setting and involving a small number of people in nursing homes, demonstrated that it was possible to engage residents, their families, aged care staff and GPs in this type of care planning forum (Shelby-James et al., 2007). Conferring proof that palliative care case conferencing in nursing homes is both feasible and if planned accordingly can be successfully undertaken. This is an important observation, as case conferencing in the aged care setting has been promoted as a forum for the family, and primary and aged care professionals to collaboratively work through issues and formalise care planning for the resident with dementia (Alzeimer's Australia, 2009). Adopting a case conferencing format allows for the sharing and consideration of different perspectives regarding what the resident might have wanted, an opportunity to discuss expected changes and for the care team to come to a shared agreement about the goals of care, all of which are important in the presence of advanced dementia. Case conferencing also provides an opportunity for a palliative approach to be adopted by the interdisciplinary team so as to better manage the residents expected illness trajectory, as well as tailoring care to their specific needs and those of their family.