Experiences of substitute decision makers in making decisions for older persons diagnosed with major neurocognitive disorder at end of life: a qualitative systematic review protocol.

REVIEW QUESTION/OBJECTIVE: The objective of this systematic review is to identify and synthesize the best available qualitative evidence on how substitute decision makers (SDMs) are affected by and experience making decisions at end of life (EOL) for older persons diagnosed with major neurocognitive disorder (major NCD) (dementia). Addressing the objective will provide an understanding of SDMs' experiences of making decisions for older persons diagnosed with major NCD at EOL, in order to tailor supportive education and interventions and potentially decrease inopportune outcomes.Specifically, the review questions are as follows.

Understanding the bereavement care roles of nurses within acute care: a systematic review.

AIMS AND OBJECTIVES: To investigate nurses' roles and responsibilities in providing bereavement care during the care of dying patients within acute care hospitals. BACKGROUND: Bereavement within acute care hospitals is often sudden, unexpected and managed by nurses who may have limited access to experts. Nurses' roles and experience in the provision of bereavement care can have a significant influence on the subsequent bereavement process for families. Identifying the roles and responsibilities, nurses have in bereavement care will enhance bereavement supports within acute care environments. DESIGN: Mixed-methods systematic review. METHODS: The review was conducted using the databases Cumulative Index Nursing and Allied Health Literature Plus, Embase, Ovid MEDLINE, PsychINFO, CareSearch and Google Scholar. Included studies published between 2006-2015, identified nurse participants, and the studies were conducted in acute care hospitals. Seven studies met the inclusion criteria, and the research results were extracted and subjected to thematic synthesis. RESULTS: Nurses' role in bereavement care included patient-centred care, family-centred care, advocacy and professional development. Concerns about bereavement roles included competing clinical workload demands, limitations of physical environments in acute care hospitals and the need for further education in bereavement care. CONCLUSIONS: Further research is needed to enable more detailed clarification of the roles nurse undertake in bereavement care in acute care hospitals. There is also a need to evaluate the effectiveness of these nursing roles and how these provisions impact on the bereavement process of patients and families. RELEVANCE TO CLINICAL PRACTICE: The care provided by acute care nurses to patients and families during end-of-life care is crucial to bereavement. The bereavement roles nurses undertake are not well understood with limited evidence of how these roles are measured. Further education in bereavement care is needed for acute care nurses.

Single-room usage patterns and allocation decision-making in an Australian public hospital: a sequential exploratory study.

AIMS AND OBJECTIVES: The aims are to (1) measure occupancy rates of single and shared rooms; (2) compare single room usage patterns and (3) explore the practice, rationale and decision-making processes associated with single rooms; across one Australian public health service. BACKGROUND: There is a tendency in Australia and internationally to increase the proportion of single patient rooms in hospitals. To date there have been no Australian studies that investigate the use of single rooms in clinical practice. DESIGN: This study used a sequential exploratory design with data collected in 2014. METHODS: A descriptive survey was used to measure the use of single rooms across a two-week time frame. Semi-structured interviews were undertaken with occupancy decision-makers to explore the practices, rationale decision-making process associated with single-room allocation. RESULTS: Total bed occupancy did not fall below 99·4% during the period of data collection. Infection control was the primary reason for patients to be allocated to a single room, however, the patterns varied according to ward type and single-room availability. For occupancy decision-makers, decisions about patient allocation was a complex and challenging process, influenced and complicated by numerous factors including occupancy rates, the infection status of the patient/s, funding and patient/family preference. Bed moves were common resulting from frequent re-evaluation of need. CONCLUSION: Apart from infection control mandates, there was little tangible evidence to guide decision-making about single-room allocation. Further work is necessary to assist nurses in their decision-making. RELEVANCE TO CLINICAL PRACTICE: There is a trend towards increasing the proportion of single rooms in new hospital builds. Coupled with the competing clinical demands for single room care, this study highlights the complexity of nursing decision-making about patient allocation to single rooms, an issue urgently requiring further attention.

Training and supportive programs for palliative care volunteers in community settings.

BACKGROUND: Palliative care is specialised health care to support people living with a terminal illness and their families. The involvement of volunteers can extend the range of activities offered by palliative care services, particularly for those living in the community. Activities undertaken by palliative care volunteers vary considerably but can be practical, social or emotional in nature. The types of training and support provided to these volunteers are likely to affect the volunteers' effectiveness in their role and influence the quality of care provided to palliative care clients and their families. Training and support can also have considerable resource implications for palliative care organisations, which makes it important to know how to provide this training and support as effectively as possible. OBJECTIVES: To assess the effects of training and support strategies for palliative care volunteers on palliative care clients and their families, volunteers and service quality. SEARCH METHODS: We searched the Cochrane Central Register of Controlled Trials (CENTRAL, The Cochrane Library, 28 April 2014); MEDLINE (1946 to 28 April 2014); EMBASE (1988 to 28 April 2014); PsycINFO (1806 to 28 April 2014); CINAHL (EbscoHOST) (1981 to 28 April 2014); ProQuest Dissertations and Theses (1861 to 28 April 2014). We also searched the Database of Abstracts of Reviews of Effects (DARE, The Cochrane Library); reference lists of relevant studies; and conducted an extensive search for evaluations published in government reports and other grey literature including the CareSearch database (www.caresearch.com.au (September 2004 to February 2012) and websites of relevant organisations, for unpublished and ongoing studies. SELECTION CRITERIA: Randomised controlled trials (RCTs), quasi-randomised controlled trials, controlled before-and-after (CBA) studies and interrupted time series (ITS) studies of all formal training and support programs for palliative care volunteers. Programs or strategies in included studies were classified according to any stated or implied purpose: that is, whether they intended to build skills for the volunteer's role, to enhance their coping, or to maintain service standards. DATA COLLECTION AND ANALYSIS: Two review authors screened 2614 citations identified through the electronic searches after duplicates were removed. The search of grey literature through websites yielded no additional titles. We identified 28 potentially relevant titles but found no studies eligible for inclusion. MAIN RESULTS: We did not find any studies that assessed the effects of training and support strategies for palliative care volunteers that meet our inclusion criteria. The excluded studies suggest that trials in this area are possible. AUTHORS' CONCLUSIONS: The use of palliative care volunteers is likely to continue, but there is an absence of evidence to show how best to train or support them whilst maintaining standards of care for palliative care patients and their families.

A case study approach to investigating end-of-life decision making in an acute health service.

AIM: To identify end-of-life (EOL) decision making processes for patients with non-cancer illnesses in a major metropolitan hospital. METHODS: A retrospective review using a case study framework of 47 randomly selected patient records over a 6-month period explored issues in EOL care planning. RESULTS: Reviewed charts represented 53% of total deaths in the study period. All patients (aged 66-99) had co-morbid conditions. In 64%, the first record of EOL discussions occurred in the last 24h of life. Four case groups were identified, ranging from a clear plan developed with patient/family involvement and fully implemented, to no plan with minimal patient/family involvement in decision making. Factors related to clearer EOL care planning according to expressed patient wishes included multiple previous admissions, shorter hospitalisations at EOL, living with a relative and involvement of family in decisions about care. CONCLUSION: This study has shown that the development and effective implementation of EOL plans is associated with the active involvement of both family members and health professionals. It also draws attention to the risks of delaying EOL discussions until late in the illness trajectory or later in life as well as pointing to challenges in acting on EOL developed outside the hospital environment.

A very public death: dying of mesothelioma and asbestos-related lung cancer (M/ARLC) in the Latrobe Valley, Victoria, Australia.

INTRODUCTION: It is anticipated that in Australia the number of cases of mesothelioma will continue to rise significantly over the next 15 years with power station workers having a risk second only to asbestos mill workers. Mesothelioma responds poorly to treatment and is almost always fatal, yet there have been few studies related to the palliative care needs of this diagnostic group and none focussing on the Latrobe Valley, Victoria, Australia. The aims of this pilot study were to identify common issues and to explore the needs and experiences of people with mesothelioma and asbestos-related lung cancer (M/ARLC), their carers, and service providers in the Latrobe Valley community, in particular in relation to palliative care. METHODS: The study employed a case study design using in-depth interviews, media reports, local authority and employer reports and historical data, which were content analysed. The constant comparative method was used to identify common themes and issues. RESULTS: The Latrobe Valley is the fourth largest regional area in Victoria. The electricity industry and brown coal mining at the town of Yallourn were the primary industries. Former power workers are contracting mesothelioma at a rate seven times the national average. A total of 13 participants from the Latrobe Valley were interviewed, comprising five key stakeholders who were local legal and healthcare providers; two people who had been diagnosed with mesothelioma; and six family carers. Most people with M/ARLC in the Latrobe Valley are older males who were employed by the electricity and related industries, while their carers are mostly female wives and daughters. There were three major themes identified in the data: illness experience; carer and family roles; and services and service gaps. The results indicated that those with M/ARLC and their families experience diagnosis and treatment as being filled with unpredictability and fear. The older males with M/ARLC were characterised as stoic and reluctant to seek help, contributing to a delayed diagnosis. However, their rural health services compounded these delays because of the unpredictability of health professional availability. Although there are some cancer treatment and legal services locally, people with M/ARLC are often required to travel to metropolitan services for care and advice. The effort and time required to seek compensation at a time of declining health was particularly burdensome. Participants expressed the tension between feelings of loyalty to their employers and anger at the perceived betrayal of the same employers, who were reported to have ignored asbestos warnings. Access to palliative care was delayed by a discomfort associated with acknowledgement of dying and resulted in poor symptom control and a lack of support to significantly burdened carers. People with M/ARLC have a strong desire to die at home but issues of rurality, isolation and late referral to palliative care services often complicate their care. CONCLUSIONS: This pilot study explored the needs of people with M/ARLC in the Latrobe Valley and the results indicated that their experience is complicated by unpredictability, lack of information and the rural location. The study recommended that innovative models of care be investigated to improve communication and continuity of care in the Latrobe Valley community, in addition to the barriers and enablers to local health and legal service provision. Further, the study indicates that a comprehensive education strategy for local health providers and community members, and strategies to prevent and manage volunteer and health professional burnout are needed.

Professional relationships in palliative care decision making.

BACKGROUND: Decision making in the context of palliative care is particularly complex given the unpredictable illness trajectories experienced by patients and the number of individuals who may be part of decision-making processes. This study aimed to describe the significant issues that influence the processes of care decision making, from the perspective of patients with advanced illness. METHODS: Patients (14), family members (7) and health professionals (18) were interviewed and field observations (100 h) of decision-making practices were undertaken in two Australian palliative care services. A systematic approach using grounded theory to collect and analyse the data was used to develop a theory of decision making from the patient's perspective. RESULTS: The main issue experienced by palliative care patients was identified as a lack of involvement in decision making. One of the significant factors affecting the decision process is the type of relationship with health professionals that patients believe enhances their involvement in decision making. This was determined by the manner and focus of the health professional, their trustworthiness as well as the healthcare culture and environment. This paper provides a greater understanding of the perspective of patients in relation to their involvement in decisions related to palliative care.