OBJECTIVE: To identify actions required to strengthen the delivery of person and family centred hospital-based palliative care so that it addressed the domains of care identified as important for inpatients with palliative care needs and their families.
METHODS: A codesign study involving a workshop with palliative care and acute hospital policy, consumer and clinical representatives in Australia. A modified nominal group process generated a series of actions, which were thematically analysed and refined, before being circulated to participants to gain consensus.
RESULTS: More than half (n=30, 58%) of the invited representatives (n=52) participated in the codesign process. Nine actions were identified as required to strengthen inpatient palliative care provision being: (a) evidence-informed practice and national benchmarking; (b) funding reforms; (c) securing executive level support; (d) mandatory clinical and ancillary education; (e) fostering greater community awareness; (f) policy reviews of care of the dying; (g) better integration of advance care planning; (h) strengthen nursing leadership; and (i) develop communities of practice for improving palliative care.
CONCLUSIONS: Changes to policy, practice, education and further research are required to optimise palliative care within hospital settings, in accordance with the domains inpatients with palliative care needs and their families consider to be important. Achieving these changes will require a whole of sector approach and significant national and jurisdictional leadership.
Qualitative methodologies have multiple contributions to health research, including improving baseline understanding in new areas of enquiry; questioning existing assumptions; understanding viewpoints of specific subgroups; and offering complex, contextual information. While the role of qualitative research within mixed methods approaches is well documented, the contribution to clinical trial design and conduct is less well recognized. The Australian Palliative Care Clinical Studies Collaborative and Cancer Symptom Trials have developed a framework to detail how qualitative research might contribute to each key aspect of clinical trials. This practical framework provides real-world examples, including sample qualitative questions, to consider at each phase of controlled clinical trial development. As the number of randomized clinical trials in palliative care increases, a readily accessible approach to integrating qualitative research into clinical trial design and conduct is needed so that its full potential for improving study recruitment, conduct, outcomes, interpretation, and implementation may be realized.
Lung cancer is the most common cancer and leading cause of cancer mortality globally. Lung cancer is associated with significant morbidity, with symptoms often being poorly managed, causing significant symptom burden for both patients and their family caregivers. In people with life-limiting illnesses including advanced cancer, palliative care has been effective in improving symptom control, physical and mental wellbeing, quality of life, and survivorship; with benefits extending to caregivers while in the role and subsequently. Earlier integration of palliative care within oncology may be associated with improved patient outcomes, and has been supported by two Lancet commissions and national guidelines. The evidence for its effectiveness, however, has been mixed across the cancer spectrum. The aim of this review was to evaluate the current evidence for the effectiveness of early integrated palliative care in improving outcomes for people with lung cancer and their caregivers. Meta-analyses were performed where studies used the same measure. Otherwise, synthesis used a narrative approach. Similar to other types of advanced cancer, this review reveals mixed evidence for the effectiveness of early referral to palliative care and for the effectiveness of individual palliative interventions for people with lung cancer and their caregivers. Evidence that on-demand palliative care is equally, if not more effective than palliative care that is routinely provided, raises the question whether initiation and provision of palliative care as part of multidisciplinary lung cancer care ought to be guided by an early referral or need-based referral. Better understanding of what constitutes palliative care when delivered to people with lung cancer and their caregivers will help delineate the correlation with reported outcomes for these populations.
BACKGROUND: The majority of expected deaths in high income countries occur in hospital where optimal palliative care cannot be assured. In addition, a large number of patients with palliative care needs receive inpatient care in their last year of life. International research has identified domains of inpatient care that patients and carers perceive to be important, but concrete examples of how these might be operationalised are scarce, and few studies conducted in the southern hemisphere.
AIM: To seek the perspectives of Australian patients living with palliative care needs about their recent hospitalisation experiences to determine the relevance of domains noted internationally to be important for optimal inpatient palliative care and how these can be operationalised.
DESIGN: An exploratory qualitative study using semi-structured interviews.
SETTING/PARTICIPANTS: Participants were recruited through five hospitals in New South Wales, Australia.
RESULTS: Twenty-one participants took part. Results confirmed and added depth of understanding to domains previously identified as important for optimal hospital palliative care, including: Effective communication and shared decision making; Expert care; Adequate environment for care; Family involvement in care provision; Financial affairs; Maintenance of sense of self/identity; Minimising burden; Respectful and compassionate care; Trust and confidence in clinicians and Maintenance of patient safety. Two additional domains were noted to be important: Nutritional needs; and Access to medical and nursing specialists.
CONCLUSIONS: Taking a person-centred focus has provided a deeper understanding of how to strengthen inpatient palliative care practices. Future work is needed to translate the body of evidence on patient priorities into policy reforms and practice points.
Background: People with dementia requiring palliative care have multiple needs, which are amplified in long-term care settings. The European Association for Palliative Care White Paper offers recommendations for optimal palliative care in dementia integral for this population, providing useful guidance to inform interventions addressing their specific needs.
Aim: The aim of this study is to describe the components of palliative care interventions for people with dementia in long-term care focusing on shared decision-making and examine their alignment to the European Association for Palliative Care domains of care.
Design: Systematic review with narrative synthesis (PROSPERO ID: CRD42018095649).
Data sources: Four databases (MEDLINE, CINAHL, PsycINFO and CENTRAL) were searched (earliest records – July 2019) for peer-reviewed articles and protocols in English, reporting on palliative care interventions for people with dementia in long-term care, addressing European Association for Palliative Care Domains 2 (person-centred) or 3 (setting care goals) and >=1 other domain.
Results: Fifty-one papers were included, reporting on 32 studies. For each domain (1–10), there were interventions found aiming to address its goal, although no single intervention addressed all domains. Domain 7 (symptom management; n = 19), 6 (avoiding overly aggressive treatment; n = 18) and 10 (education; n = 17) were the most commonly addressed; Domain 5 (prognostication; n = 7) and 4 (continuity of care; n = 2) were the least addressed.
Conclusion: Almost all domains were addressed across all interventions currently offered for this population to various degrees, but not within a singular intervention. Future research optimally needs to be theory driven when developing dementia-specific interventions at the end of life, with the European Association for Palliative Care domains serving as a foundation to inform the best care for this population.
This study aimed to describe Australian long-term care (LTC) personnel’s knowledge and attitudes concerning palliative care for residents with advanced dementia, and explore relationships with LTC facility/personnel characteristics. An analysis was undertaken of baseline data from a cluster randomised controlled trial of facilitated family case conferencing for improving palliative care of LTC residents with advanced dementia (the ‘IDEAL Study’). Participants included any LTC personnel directly involved in residents’ care. Knowledge and attitudes concerning palliative care for people with advanced dementia were measured using the questionnaire on Palliative Care for Advanced Dementia. Univariate and multivariate analyses explored relationships between personnel knowledge/attitudes and facility/personnel characteristics. Of 307 personnel in the IDEAL Study, 290 (94.5%) from 19/20 LTCFs provided sufficient data for inclusion. Participants included 9 (2.8%) nurse managers, 59 (20.5%) registered nurses, 25 (8.7%) enrolled nurses, 187 (64.9%) assistants in nursing/personal care assistants and 9 (3.1%) care service employees. In multivariate analyses, a facility policy not to rotate personnel through dementia units was the only variable associated with more favourable overall personnel knowledge and attitudes. Other variables associated with favourable knowledge were a designation of nursing manager or registered or enrolled nurse, and having a preferred language of English. Other variables associated with favourable attitudes were tertiary level of education and greater experience in dementia care. Like previous international research, this study found Australian LTC personnel knowledge and attitudes regarding palliative care for people with advanced dementia to be associated with both facility and personnel characteristics. Future longitudinal research is needed to better understand the relationships between knowledge and attitudes, as well as between these attributes and quality of care.
Background: There are significant policy imperatives to involve consumers at the outset of and throughout research. How best to achieve this in an authentic and meaningful way is elusive, particularly within the palliative care population.
Aim: To determine how best to engage people with palliative care needs and their families in co-designing a qualitative study to better understand how to improve care of the dying in the acute care setting.
Methods: A case study design informed this work, informed by pre-determined research questions that focused on consumers advising on participant experience within the research, rather than research methodology per se.
Findings: Eleven consumers contributed across five panel meetings. Analysis of documented feedback led to four key areas of protocol change: Getting the language in the recruitment materials and information and consent forms right; Developing a feasible and acceptable recruitment strategy; Opportunities to more clearly articulate the explicit value of this research for patients and families; Support strategies for participants.
Discussion: Authentic consumer engagement requires time and effort; however, the outcomes are well worth the invested time and energy. Key foci outlined within this case study to enhance authenticity included: collaboration; preferencing the consumer voice; adequate preparation to support consumer engagement; and openness to all feedback provided.
Conclusion: Co-designing research with consumers enabled the outcome to be feasible for implementation, without any modifications required. Ensuring relevance and consumer-centredness for the expanding palliative care evidence base is essential and can only be achieved through meaningful partnerships with consumer representatives.
BACKGROUND: Advance care planning (ACP) is identified as being an important process for people with dementia. However, its efficacy for improving outcomes relevant for the individual, carers and the health system has yet to be established.AimWe conducted a systematic review with the aims of testing the efficacy of ACP for people with dementia and describing the settings and population in which it has been evaluated.
METHODS: A search was completed of electronic databases in August 2016. Articles were included if they described interventions aimed at increasing planning for future care of people with dementia, delivered to the person with dementia, their carers and/or health professionals.
RESULTS: Of 4,772 articles returned by searches, 30 met the inclusion criteria, testing interventions in nursing home (n= 16) community (n = 10) and acute care (n = 4) settings. Only 18 interventions directly involved the person with dementia, with the remainder focusing on surrogate decision-makers. In all settings, interventions were found effective in increasing ACP practice. In nursing homes, ACP was found to influence care and increase the concordance between end of life wishes and care provided. Interventions in the community were found to improve patient quality of life but were not shown to influence concordance.
CONCLUSION: Future research should focus on ways to involve people with dementia in decision-making through supported means.
OBJECTIVE: The majority of self-management interventions are designed with a narrow focus on patient skills and fail to consider their potential as "catalysts" for improving care delivery. A project was undertaken to develop a patient self-management resource to support evidence-based, person-centered care for cancer pain and overcome barriers at the levels of the patient, provider, and health system.
METHOD: The project used a mixed-method design with concurrent triangulation, including the following: a national online survey of current practice; two systematic reviews of cancer pain needs and education; a desktop review of online patient pain diaries and other related resources; consultation with stakeholders; and interviews with patients regarding acceptability and usefulness of a draft resource.Result : Findings suggested that an optimal self-management resource should encourage pain reporting, build patients' sense of control, and support communication with providers and coordination between services. Each of these characteristics was identified as important in overcoming established barriers to cancer pain care. A pain self-management resource was developed to include: (1) a template for setting specific, measureable, achievable, relevant and time-bound goals of care, as well as identifying potential obstacles and ways to overcome these; and (2) a pain management plan detailing exacerbating and alleviating factors, current strategies for management, and contacts for support.
SIGNIFICANCE OF RESULTS : Self-management resources have the potential for addressing barriers not only at the patient level, but also at provider and health system levels. A cluster randomized controlled trial is under way to test effectiveness of the resource designed in this project in combination with pain screening, audit and feedback, and provider education. More research of this kind is needed to understand how interventions at different levels can be optimally combined to overcome barriers and improve care.
OBJECTIVES: To appraise improvement strategies adopted by low- and middle-income countries to increase access to cancer treatments and palliative care; and identify the facilitators and barriers to implementation.
METHODS: A systematic review was conducted and reported in accordance with PRISMA statement. MEDLINE, CINAHL, and the Cochrane Library databases were searched. Bias was assessed using the Standards for Quality Improvement Reporting Excellence, and evidence graded using the Australian National Health and Medical Research Council system.
RESULTS: Of 3069 articles identified, 18 studied were included. These studies involved less than a tenth (n = 12, 8.6%) of all low- and middle-income countries. Most were case reports (58%), and the majority focused on palliative care (n = 11, 61%). Facilitators included: stakeholder engagement, financial support, supportive learning environment, and community networks. Barriers included: lack of human resources, financial constraints, and limited infrastructure.
CONCLUSIONS: There is limited evidence on sustainable strategies for increasing access to cancer treatments and palliative care in low- and middle-income countries. Future strategies should be externally evaluated and be tailored to address service delivery; workforce; information; medical products, vaccines, and technologies; financing; and leadership and governance.
BACKGROUND: Pain is a common and distressing symptom in people with cancer, but is under-recognised and under-treated. Australian guidelines for 'Cancer Pain Management in Adults' are available on the Cancer Council Australia Cancer Guideline Wiki. This study aims to evaluate the effectiveness and cost-effectiveness of a suite of guideline implementation strategies for improving pain outcomes in adults with cancer in oncology and palliative care outpatient settings.
METHODS: The study will use a stepped-wedge cluster randomised controlled design, with oncology and palliative care outpatient services as the clusters. Patients will be eligible if they are adults with cancer and pain presenting to participating services during the study period. During an initial control arm, services will routinely screen patients for average and worst pain over the past 24 h using a 0–10 numerical rating scale (NRS) and have unfettered access to online guidelines. During the intervention arm, staff at each service will be encouraged to use: 1) a patient education booklet and self-management resource; 2) an online spaced learning cancer pain education module for clinicians from different disciplines; and 3) audit and feedback of service performance on key indices of cancer pain screening, assessment and management. Service-based clinical change champions will lead implementation of these strategies.
The trial’s primary outcome will be the probability that patients initially screened as having moderate-severe (=5/10 NRS) worst pain experience a clinically important improvement one week later, defined as = 30% reduction. Secondary outcomes will include patient empowerment and quality of life, carer experience, and cost-effectiveness. For the main analysis, linear mixed models will be used, accounting for clustering and the longitudinal design. Eighty-two patients per service at six services (N = 492) will provide > 90% power. A qualitative sub-study and analyses of structural and process factors will explore opportunities for further refinement and tailoring of the intervention.
DISCUSSION: This pragmatic trial will inform implementation of guidelines across a range of oncology and palliative care outpatient service contexts. If found effective, the implementation strategies will be made freely available on the Wiki alongside the guidelines.
BACKGROUND: Prescribing medications for nursing home residents with advanced dementia should focus on optimizing function and comfort, reducing unnecessary harms and aligning care goals with a palliative approach.
OBJECTIVE: The aim of the study was to estimate the proportion of Australian nursing home residents with advanced dementia receiving potentially inappropriate medications, and identify those most commonly prescribed and factors associated with their use.
DESIGN: Data were collected through retrospective audit of medication charts.
SETTING/SUBJECTS: Two hundred eighteen nursing home residents with advanced dementia from 20 nursing homes participated in a cluster-randomized controlled trial of case conferencing (the IDEAL Study) from June 2013 to December 2014.
MEASUREMENTS: Inappropriate drug use was defined as medications classified as "never appropriate" by the Palliative Excellence in Alzheimer Care Efforts (PEACE) program criteria. Generalized linear mixed models were used to identify variables predicting use of "never" appropriate medications.
RESULTS: Over a quarter (n = 65, 30%) of residents received at least one medication classed as “never” appropriate, the most common being lipid-lowering agents (n = 38, 17.4%), antiplatelet agents (n = 18, 8.3%), and acetylcholinesterase inhibitors (n = 16, 7.3%). Residents who had been at the nursing home for =10 months (odds ratio [OR] 5.60, 95% confidence interval [CI] 1.74–18.06) and 11–21 months (OR 5.41, 95% CI 1.67–17.75) had significantly greater odds of receiving a never appropriate medication compared with residents who had been at the nursing home for >5 years.
CONCLUSIONS: Use of potentially inappropriate medications in Australian nursing home residents with advanced dementia is common. A greater understanding of the rationale that underpins prescribing of medications is required.
BACKGROUND: The importance of measuring the quality of end-of-life care provision is undisputed, but determining how best to achieve this is yet to be confirmed. This study sought to identify and describe national end-of-life care quality indicators and supporting policies used by countries leading in their end-of-life care provision.
METHODS: A systematic environmental scan that included a web search to identify relevant national policies and indicators; hand searching for additional materials; information from experts listed for the top 10 (n=15) countries ranked in the 'quality of care' category of the 2015 Quality of Death Index study; and snowballing from Index experts.
FINDINGS: Ten countries (66%) have national policy support for end-of-life care measurement, five have national indicator sets, with two indicator sets suitable for all service providers. No countries mandate indicator use, and there is limited evidence of consumer engagement in development of indicators. Two thirds of the 128 identified indicators are outcomes measures (62%), and 38% are process measures. Most indicators pertain to symptom management (38%), social care (32%) or care delivery (27%).
INTERPRETATIONS: Measurement of end-of-life care quality varies globally and rarely covers all care domains or service providers. There is a need to reduce duplication of indicator development, involve consumers, consider all care providers and ensure measurable and relevant indicators to improve end-of-life care experiences for patients and families.
OBJECTIVE: The working ages (25-65 years) are a period when most people have significant work, financial, and family responsibilities. A small proportion of working age people will face an expected premature death from cancer or other life-limiting illness. Understanding the impact an expected premature death has on this population is important for informing support. The current study set out to summarize research describing the effects that facing an expected premature death has on employment, financial, and lifestyle of working age people and their families.
METHOD: A systematic review using narrative synthesis approach. Four electronic databases were searched in July 2016 for peer-reviewed, English language studies focusing on the financial, employment, and lifestyle concerns of working age adults living with an advanced life-limiting illness and/or their carers and/or children.
RESULTS: Fifteen quantitative and 12 qualitative studies were included. Two-thirds (n = 18) were focused on cancer. All studies identified adverse effects on workforce participation, finances, and lifestyle. Many patients were forced to work less or give up work/retire early because of symptoms and reduced functioning. In addition to treatment costs, patients and families were also faced with child care, travel, and home/car modification costs. Being younger was associated with greater employment and financial burden, whereas having children was associated with lower functional well-being. Changes in family roles were identified as challenging regardless of diagnosis, whereas maintaining normalcy and creating stability was seen as a priority by parents with advanced cancer. This review is limited by the smaller number of studies focussing on the needs of working age people with nonmalignant disease. Significance of results Working age people facing an expected premature death and their families have significant unmet financial, employment, and lifestyle needs. Comparing and contrasting their severity, timing, and priority for people with nonmalignant conditions is required to better understand their unique needs.
BACKGROUND: Advance care planning (ACP) empowers patients to consider and communicate their current and future treatment goals. However, it can be an emotionally charged process for patients with kidney disease and their caregivers. This study aimed to describe the perspectives and attitudes of patients with end-stage renal disease (ESRD) and their caregivers toward ACP.
STUDY DESIGN: Qualitative study.
SETTING & PARTICIPANTS: Patients with ESRD (n=24) and their caregivers (n=15) aged 36 to 91 years at various stages of ACP ("not commenced," "in progress," or "completed") from 3 renal services.
METHODOLOGY: Semistructured interviews.
ANALYTICAL APPROACH: Transcripts were analyzed using thematic analysis.
RESULTS: 5 major themes were identified: articulating core values (avoiding futile and undignified treatment, reevaluating terms of dialysis, framing a life worth living, and refusing to be a burden), confronting conversations (signifying death and defeat, accepting inevitable death, and alleviating existential tension), negotiating mutual understanding (broaching taboos and assisting conflicted caregivers), challenging patient autonomy (family pressures to continue dialysis, grief diminishing caregivers' capacity, and leveraging support), and decisional disempowerment (lacking medical transparency and disappointment with clinical disinterest).
LIMITATIONS: Only English-speaking patients/caregivers participated in the interview.
CONCLUSIONS: ACP provides patients with ESRD and their caregivers a conduit for accepting and planning for impending death and to express treatment preferences based on self-dignity and value of living. However, ACP can be considered taboo, may require caregivers to overcome personal and decisional conflict, and may be complex if patients and caregivers are unable to accept the reality of the patient's illness. We suggest that ACP facilitators and clinicians make ACP more acceptable and less confrontational to patients and caregivers and that strategies be put in place to support caregivers who may be experiencing overwhelming grief or who have conflicting goals, particularly when they are called on to make end-of-life decisions.
BACKGROUND: Despite most expected deaths occurring in hospital, optimal end-of-life care is not available for all in this setting.
AIM: To gain a richer and deeper understanding of elements of end-of-life care that consumers consider most important within the hospital setting.
DESIGN: A meta-synthesis.
DATA SOURCES: A systematic search of Academic Search Complete, AMED, CINAHL, MEDLINE, EMBASE, PsycINFO, PubMed, Google, Google Scholar and CareSearch for qualitative studies published between 1990 and April 2015 reporting statements by consumers regarding important elements of end-of-life hospital care. Study quality was appraised by two independent researchers using an established checklist. A three-stage synthesis approach focusing on consumer quotes, rather than primary author themes, was adopted for this review.
RESULTS: Of 1922 articles, 16 met the inclusion criteria providing patient and family data for analysis. Synthesis yielded 7 patient and 10 family themes including 6 common themes: (1) expert care, (2) effective communication and shared decision-making, (3) respectful and compassionate care, (4) adequate environment for care, (5) family involvement and (6) financial affairs. Maintenance of sense of self was the additional patient theme, while the four additional family themes were as follows: (1) maintenance of patient safety, (2) preparation for death, (3) care extending to the family after patient death and (4) enabling patient choice at the end of life.
CONCLUSION: Consumer narratives help to provide a clearer direction as to what is important for hospital end-of-life care. Systems are needed to enable optimal end-of-life care, in accordance with consumer priorities, and embedded into routine hospital care.
BACKGROUND: Palliative care for nursing home residents with advanced dementia is often sub-optimal due to poor communication and limited care planning. In a cluster randomized controlled trial, registered nurses (RNs) from 10 nursing homes were trained and funded to work as Palliative Care Planning Coordinators (PCPCs) to organize family case conferences and mentor staff. This qualitative sub-study aimed to explore PCPC and health professional perceptions of the benefits of facilitated case conferencing and identify factors influencing implementation.
METHOD: Semi-structured interviews were conducted with the RNs in the PCPC role, other members of nursing home staff, and physicians who participated in case conferences. Analysis was conducted by two researchers using a thematic framework approach.
RESULTS: Interviews were conducted with 11 PCPCs, 18 other nurses, eight allied health workers, and three physicians. Perceived benefits of facilitated case conferencing included better communication between staff and families, greater multi-disciplinary involvement in case conferences and care planning, and improved staff attitudes and capabilities for dementia palliative care. Key factors influencing implementation included: staffing levels and time; support from management, staff and physicians; and positive family feedback.
CONCLUSION: The facilitated approach explored in this study addressed known barriers to case conferencing. However, current business models in the sector make it difficult for case conferencing to receive the required levels of nursing qualification, training, and time. A collaborative nursing home culture and ongoing relationships with health professionals are also prerequisites for success. Further studies should document resident and family perceptions to harness consumer advocacy.