CONTEXT:Breathlessness is associated with depression, but its relationship to anxiety or impaired function is less clear. OBJECTIVES:This study evaluated associations between chronic breathlessness and anxiety, depression, and functional status in the general population. METHODS:This cross-sectional study of consenting adults (18 years and older) used an online survey. Quota sampling (n = 3000) was used reflecting the 2016 national census for sex, age, and place of residence. Other data included Four-Item Patient Health Questionnaire for depression and anxiety, the modified Medical Research Council (mMRC) Breathlessness Scale, and the Australia-modified Karnofsky Performance Scale. Multinomial logistic regression assessed predictors. RESULTS:About 2977 respondents had all relevant scores (female 51.2%; median age 45.0 [range 18-92]). Prevalence of breathlessness (mMRC ≥2) was 2.4%, anxiety 6.0%, depression 2.7%, coexisting anxiety/depression 6.1%, and poorer functional status (Australia-modified Karnofsky Performance Scale ≤60) 1.6%. In multinomial regression, depression, anxiety, and coexisting anxiety/depression were predicted by younger age, longer duration of breathlessness, and poorer functional status. The highest proportions of people with breathlessness were found in the coexisting anxiety/depression group (10.6%) and depression only group (8.8%). Poorest function was in the coexisting anxiety/depression group with 11.6%. The relationship between poorer functional status and coexisting anxiety/depression was significant (odds ratio 0.90; 95% CI 0.89, 0.92). Adjusted odds ratio for breathlessness and depression only was 3.0 (95% CI 1.2, 7.8). CONCLUSION:Clinically important breathlessness (mMRC ≥2) was associated with depression, anxiety, and coexisting anxiety/depression. Poorer function that is associated with psychological morbidity in the general population requires further research.

Chronic breathlessness is a disabling syndrome, prevalent in people with advanced chronic obstructive pulmonary disease (COPD). Regular, low-dose, oral sustained-release morphine is approved in Australia to reduce symptomatic chronic breathlessness. We aimed to determine the current prescribing patterns of opioids for chronic breathlessness in COPD in Australian general practice and to define any associated patient and practitioner characteristics. Five years (2011 to 2016) of the Bettering the Evaluation and Care of Health database, an Australian national, continual, cross-sectional study of clinical care in general practice were used. The database included 100 consecutive clinical encounters from almost 1000 general practitioners annually (n=488 100 encounters). Descriptive analyses with subsequent regression models were generated. Breathlessness as a patient-defined reason for encounter was identified in 621 of 4522 encounters where COPD was managed. Opioids were prescribed in 309 of 4522 encounters where COPD was managed (6.8%; (95% CI) 6.1-7.6), of which only 17 were prescribed for breathlessness, and the rest for other conditions almost entirely related to pain. Patient age (45-64 years versus age 80+ years, OR 1.68; 1.19-2.36), Commonwealth Concession Card holders (OR 1.70; 1.23-2.34) and socioeconomic disadvantage (OR 1.30; 1.01-1.68) were associated with increased likelihood of opioid prescription at COPD encounters. The rate of opioid prescriptions rose over the 5 years of study. In primary care encounters for COPD, opioids were prescribed in 6.8% of cases, but almost never for breathlessness. These data create a baseline against which to compare changes in prescribing as the treatment of chronic breathlessness evolves.

PURPOSE OF REVIEW: Clinicians who seek to reduce the symptomatic burden of chronic breathlessness by initiating regular low-dose morphine has the choice of immediate or sustained-release formulations - which will be better for this often frail population, and which has the more robust evidence to inform its prescription? Both formulations can be used. RECENT FINDINGS: For chronic breathlessness, three factors consistently favour the use of regular, low-dose, sustained-release morphine over immediate-release formulations: SUMMARY: As the evidence base expands for the symptomatic reduction of chronic breathlessness, pharmacological interventions will play a part. Using the best available evidence underpins patient-centred approaches that seek to predictably maximize the net effect.As such, the weight of evidence in patient-centred clinical care favours the use of regular, low-dose sustained-release morphine for the symptomatic reduction of chronic breathlessness.

BACKGROUND:Chronic breathlessness is a disabling syndrome that profoundly impacts patients' and caregivers' lives. Driving is important for most people, including those with advanced disease. Regular, low-dose, sustained-release morphine safely reduces breathlessness, but little is known about its impact on driving. AIM:To understand patients' and caregivers' (1) perspectives and experiences of driving with chronic breathlessness; and (2) perceived impact of regular, low-dose, sustained-release morphine on driving. DESIGN:A qualitative study embedded in a pragmatic, phase III, randomised, placebo-controlled trial of low-dose, sustained-release morphine (⩽32 mg/24 h) for chronic breathlessness. Semi-structured interviews were conducted immediately after participants withdrew or completed the randomised, placebo-controlled trial. Informed by grounded theory, a constant comparative approach to analysis was adopted. SETTING/PARTICIPANTS:Participants were recruited from an outpatients palliative care service in Adelaide, Australia. Participants included patients (n = 13) with severe breathlessness associated with chronic obstructive pulmonary disease and their caregivers (n = 9). RESULTS:Participants were interviewed at home. Eleven received morphine 8-32 mg. Three themes emerged: (1) independence; (2) breathlessness' impact on driving; and (3) driving while taking regular, low-dose, sustained-release morphine. CONCLUSION:Driving contributed to a sense of identity and independence. Being able to drive increased the physical and social space available to patients and caregivers, their social engagement and well-being. Patients reported breathlessness at rest may impair driving skills, while the introduction of sustained-release morphine seemed to have no self-reported impact on driving. Investigating this last perception objectively, especially in terms of safety, is the subject of ongoing work.

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: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.

CONTEXT:Minimizing bias in randomized controlled trials (RCTs) includes intention-to-treat analyses. Hospice/palliative care RCTs are constrained by high attrition unpredictable when consenting, including withdrawals between randomization and first exposure to the intervention. Such withdrawals may systematically bias findings away from the new intervention being evaluated if they are considered nonresponders. OBJECTIVES:This study aimed to quantify the impact within intention-to-treat principles. METHODS:A theoretical model was developed to assess the impact of withdrawals between randomization and first exposure on study power and effect sizes. Ten reported hospice/palliative care studies had power recalculated accounting for such withdrawal. RESULTS:In the theoretical model, when 5% of withdrawals occurred between randomization and first exposure to the intervention, change in power was demonstrated in binary outcomes (2.0%-2.2%), continuous outcomes (0.8%-2.0%), and time-to-event outcomes (1.6%-2.0%), and odds ratios were changed by 0.06-0.17. Greater power loss was observed with larger effect sizes. Withdrawal rates were 0.9%-10% in the 10 reported RCTs, corresponding to power losses of 0.1%-2.2%. For studies with binary outcomes, withdrawal rates were 0.3%-1.2% changing odds ratios by 0.01-0.22. CONCLUSION:If blinding is maintained and all interventions are available simultaneously, our model suggests that excluding data from withdrawals between randomization and first exposure to the intervention minimizes one bias. This is the safety population as defined by the International Committee on Harmonization. When planning for future trials, minimizing the time between randomization and first exposure to the intervention will minimize the problem. Power should be calculated on people who receive the intervention.

© 2020 American Academy of Hospice and Palliative Medicine Context: Currently, systematic evidence of the prevalence of clinically significant depressive symptoms in people with extremely short prognoses is not available to inform its global burden, assessment, and management. Objectives: To determine the prevalence of clinically significant depressive symptoms in people with advanced life-limiting illnesses and extremely short prognoses (range of days to weeks). Methods: A systematic review and meta-analysis (random-effects model) were performed (PROSPERO: CRD42019125119). MEDLINE, Embase, PsycINFO, CINAHL, and CareSearch were searched for studies (1994–2019). Data were screened for the prevalence of clinically significant depressive symptoms (assessed using validated depression-specific screening tools or diagnostic criteria) of adults with advanced life-limiting illnesses and extremely short prognoses (defined by survival or functional status). Quality assessment was performed using the Joanna Briggs Institute Systematic Reviews Checklist for Prevalence Studies for individual studies and Grading of Recommendations Assessment, Development and Evaluation (GRADE) across studies. Results: Thirteen studies were included. The overall pooled prevalence of clinically significant depressive symptoms in adults with extremely short prognoses (n = 10 studies; extremely short prognoses: N = 905) using depression-specific screening tools was 50% (95% CI: 29%–70%; I2 = 97.6%). Prevalence of major and minor depression was 10% (95% CI: 4%–16%) and 5% (95% CI: 2%–8%), respectively. Major limitations included high heterogeneity, selection bias, and small sample sizes in individual studies. Conclusions: Clinically, significant depressive symptoms were prevalent in people with advanced life-limiting illnesses and extremely short prognoses. Clinicians need to be proactive in the recognition and assessment of these symptoms to allow for timely intervention.

INTRODUCTION:Delirium is a significant medical complication for hospitalised patients. Up to one-third of delirium episodes are preventable in older inpatients through non-pharmacological strategies that support essential human needs, such as physical and cognitive activity, sleep, hydration, vision and hearing. We hypothesised that a multicomponent intervention similarly may decrease delirium incidence, and/or its duration and severity, in inpatients with advanced cancer. Prior to a phase III trial, we aimed to determine if a multicomponent non-pharmacological delirium prevention intervention is feasible and acceptable for this specific inpatient group. METHODS AND ANALYSIS:The study is a phase II cluster randomised wait-listed controlled trial involving inpatients with advanced cancer at four Australian palliative care inpatient units. Intervention sites will introduce delirium screening, diagnostic assessment and a multicomponent delirium prevention intervention with six domains of care: preserving natural sleep; maintaining optimal vision and hearing; optimising hydration; promoting communication, orientation and cognition; optimising mobility; and promoting family partnership. Interdisciplinary teams will tailor intervention delivery to each site and to patient need. Control sites will first introduce only delirium screening and diagnosis, later implementing the intervention, modified according to initial results. The primary outcome is adherence to the intervention during the first seven days of admission, measured for 40 consecutively admitted eligible patients. Secondary outcomes relate to fidelity and feasibility, acceptability and sustainability of the study intervention, processes and measures in this patient population, using quantitative and qualitative measures. Delirium incidence and severity will be measured to inform power calculations for a future phase III trial. ETHICS AND DISSEMINATION:Ethical approval was obtained for all four sites. Trial r...

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.

© The Author(s) 2019. The concept of moral distress comes from nursing ethics, and was initially defined as '...when one knows the right thing to do, but institutional constraints make it nearly impossible to pursue the right course of action'. There is a large body of literature associated with moral distress, yet multiple definitions now exist, significantly limiting its usefulness. We undertook a systematic review of the argument-based bioethics literature on this topic as the basis for a critical appraisal, identifying 55 papers for analysis. We found that moral distress is most frequently framed around individual experiences of distress in relation to local practices and constraints, and understood in terms of power relations and workplace hierarchies. This understanding is directly derived from, and often still seen as specific to, nursing. Frequently the perspective of the morally distressed individual is privileged. Understandings of moral distress have evolved towards an 'occupational health approach', with the assumption that moral distress should be measured and prevented. Counter-perspectives were identified, highlighting conceptual problems. Based on our review, we propose a redefinition of moral distress: 'Ethical unease or disquiet resulting from a situation where a clinician believes they have contributed to avoidable patient or community harm through their involvement in an action, inaction or decision that conflicts with their own values'. This definition is specific enough for research use, anchored in clinicians' professional responsibilities and concerns about harms to patients, framed relationally rather than hierarchically, and amenable to multiple perspectives on any given morally distressing situation.

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.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.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 p...

A family-focused care approach in palliative
care recognizes the fundamental role of families
in contributing to the care of people with
life-limiting conditions. It is essential that
healthcare providers develop understanding
of families' needs and the skills to collaborate
effectively with families caring for people at
the end of their lives. This chapter introduces
the concept and components of family-focused
palliative care. It continues with a discussion
of what patients and families perceive to be
the most important aspects of end-of-life care.
This chapter provides information to assist
healthcare providers who work with people
with life-limiting conditions and their families
in providing family-focused care and to
identify gaps and challenges to providing
such care.