Symptom Clusters in Patients With Advanced Cancer: A Prospective Longitudinal Cohort Study to Examine Their Stability and Prognostic Significance.

This study's purpose was to assess symptom cluster (SC) stability during disease progression and determine their strength of association with survival in patients with advanced cancer . Consecutively eligible patients with advanced cancer not receiving cancer-specific treatment and referred to a Tertiary Palliative Care Clinic were enrolled in a prospective cohort study. At first consultation (D0) and in subsequent consultations at day 15 (D15) and day 30 (D30), patients rated 9 symptoms through the Edmonton Symptom Assessment System scale (0-10) and 10 others using a Likert scale (1-5). Principal components factor analysis with varimax rotation was used to determine SCs at each consultation. Of 318 patients with advanced cancer, 301 met eligibility criteria with a median age of 69 years (range 37-94). Three SCs were identified: neuro-psycho-metabolic (NPM), gastrointestinal, and sleep impairment, with some variations in their constitution over time. Exploratory factor analysis accounted for 40% of variance of observed variables in all SCs. Shorter median survival was observed continuously for NPM cluster (D0 23 vs. 58 days, P < .001; D15 41 vs. 104 days, P=.004; D30 46 vs. 114 days, P = .002), although the presence of 2 or more SCs on D0 and D15 also had prognostic significance (D0: 21 vs. 45 days, P = .005; D30: 50 vs. 96 days, P = .040). In a multivariable model, NPM cluster (D0 hazard ratio estimate: HR 1.64; 95%CI, 1.17-2.31; P = .005; D15 HR: 2.51; 95%CI, 1.25-5.05; P = .009; D30 HR: 3.9; 95%CI, 1.54-9.86; P = .004) and hospitalization (D0 HR: 2.27; 95%CI, 1.47-3.51; P < .001; D15 HR: 2.43; 95%CI, 1.18-5.01; P = .016; D30 HR: 3.41; 95%CI, 1.35-8.62; P = .009) were independently and significantly associated with worse survival. Three clinically relevant SCs were identified, and their constitution had small variations, maintaining a stable set of nuclear symptoms through disease progression. Presence of the NPM cluster and hospitalization maintained their prognostic value over time.

Accelerated transcranial magnetic stimulation for psychological distress in advanced cancer: A phase 2a feasibility and preliminary efficacy clinical trial.

BACKGROUND: Psychological and existential suffering affects many people with advanced illness, and current therapeutic options have limited effectiveness. Repetitive transcranial magnetic stimulation (rTMS) is a safe and effective therapy for refractory depression, but no previous study has used rTMS to treat psychological or existential distress in the palliative setting. AIM: To determine whether a 5-day course of "accelerated" rTMS is feasible and can improve psychological and/or existential distress in a palliative care setting. DESIGN: Open-label, single arm, feasibility, and preliminary efficacy study of intermittent theta-burst stimulation to the left dorsolateral prefrontal cortex, 600 pulses/session, 8 sessions/day (once per hour) for 5 days. The outcomes were the rates of recruitment, completion of intervention, and follow-up (Feasibility); and the proportion of participants achieving 50% improvement on the Hamilton Depression Rating Scale (HDRS) or Hospital Anxiety and Depression Scale (HADS) 2 weeks post-treatment (Preliminary Efficacy). SETTING/PARTICIPANTS: Adults admitted to our academic Palliative Care Unit with advanced illness, life expectancy >1 month and psychological distress. RESULTS: Due to COVID-19 pandemic-related interruptions, a total of nine participants were enrolled between August 2021 and April 2023. Two withdrew before starting rTMS, one stopped due to clinical deterioration unrelated to rTMS, and six completed the rTMS treatment. Five of six participants had a >50% improvement in HDRS, HADS-Anxiety, or both between baseline and the 2 week follow up; the sixth died prior to the 2-week follow-up. In this small sample, mean depression scores decreased from baseline to 2 weeks post-treatment (HDRS 18 vs 7, p = 0.03). Side effects of rTMS included transient mild scalp discomfort. CONCLUSIONS: Accelerated rTMS improved symptoms of depression, anxiety, or both in this small feasibility and preliminary efficacy study. A larger, sham-controlled study is warranted to determine whether rTMS could be an effective, acceptable, and scalable treatment in the palliative setting. TRIAL REGISTRATION: NCT04257227.

Long-term bereavement outcomes in family members of those who died in acute care hospitals before and during the first wave of COVID-19: A cohort study.

BACKGROUND: Severe grief is highly distressing and prevalent up to 1 year post-death among people bereaved during the first wave of COVID-19, but no study has assessed changes in grief severity beyond this timeframe. AIM: Understand the trajectory of grief during the pandemic by reassessing grief symptoms in our original cohort 12-18 months post-death. DESIGN: Prospective matched cohort study. SETTINGS/PARTICIPANTS: Family members of decedents who died in an acute care hospital between November 1, 2019 and August 31, 2020 in Ottawa, Canada. Family members of patients who died of COVID (COVID +ve) were matched 2:1 with those who died of non-COVID illness (COVID -ve) during pandemic wave 1 or immediately prior to its onset (pre-COVID). Grief was assessed using the Inventory of Complicated Grief (ICG). RESULTS: Follow-up assessment was completed by 92% (111/121) of family members in the initial cohort. Mean ICG score on the 12-18-month assessment was 19.9 (SD = 11.8), and severe grief (ICG > 25) was present in 28.8% of participants. One-third (33.3%) had either a persistently high (>25) or worsening ICG score (⩾4-point increase between assessments). Using a modified Poisson regression analysis, persistently high or worsening ICG scores were associated with endotracheal intubation in the deceased, but not cause of death (COVID +ve, COVID -ve, pre-COVID) or physical presence of the family member in the final 48 h of life. CONCLUSIONS: Severe grief is a substantial source of psychological morbidity in the wake of the COVID-19 pandemic, persisting more than a year post-death. Our findings highlight an acute need for effective and scalable means of addressing severe grief.

Over a third of palliative medicine physicians meet burnout criteria: Results from a survey study during the COVID-19 pandemic.

BACKGROUND: Palliative medicine physicians may be at higher risk of burnout due to increased stressors and compromised resilience during the COVID-19 pandemic. Burnout prevalence and factors influencing this among UK and Irish palliative medicine physicians is unknown. AIM: To determine the prevalence of burnout and the degree of resilience among UK and Irish palliative medicine physicians during the COVID-19 pandemic, and associated factors. DESIGN: Online survey using validated assessment scales assessed burnout and resilience: The Maslach Burnout Inventory Human Services Survey for Medical Personnel [MBI-HSS (MP)] and the Connor-Davidson Resilience Scale (CD-RISC). Additional tools assessed depressive symptoms, alcohol use, and quality of life. SETTING/PARTICIPANTS: Association of Palliative Medicine of UK and Ireland members actively practising in hospital, hospice or community settings. RESULTS: There were 544 respondents from the 815 eligible participants (66.8%), 462 provided complete MBI-HSS (MP) data and were analysed. Of those 181/462 (39.2%) met burnout criteria, based on high emotional exhaustion or depersonalisation subscales of the MBI-HSS (MP). A reduced odds of burnout was observed among physicians who worked ⩽20 h/week (vs 31-40 h/week, adjusted odds ratio (aOR) 0.03, 95% confidence interval (CI) 0.002-0.56) and who had a greater perceived level of clinical support (aOR 0.70, 95% CI 0.62-0.80). Physicians with higher levels of depressive symptoms had higher odds of burnout (aOR 18.32, 95% CI 6.75-49.73). Resilience, mean (SD) CD-RISC score, was lower in physicians who met burnout criteria compared to those who did not (62.6 (11.1) vs 70.0 (11.3); p < 0.001). CONCLUSIONS: Over one-third of palliative medicine physicians meet burnout criteria. The provision of enhanced organisational and colleague support is paramount in both the current and future pandemics.

Implementation of the Richmond Agitation-Sedation Scale (palliative version) on an inpatient palliative care unit.

BACKGROUND: The Richmond Agitation-Sedation Scale - Palliative version (RASS-PAL) tool is a brief observational tool to quantify a patient's level of agitation or sedation. The objective of this study was to implement the RASS-PAL tool on an inpatient palliative care unit and evaluate the implementation process. METHODS: Quality improvement implementation project using a short online RASS-PAL self-learning module and point-of-care tool. Participants were staff working on a 31-bed inpatient palliative care unit who completed the RASS-PAL self-learning module and online evaluation survey. RESULTS: The self-learning module was completed by 49/50 (98%) of regular palliative care unit staff (nurses, physicians, allied health, and other palliative care unit staff). The completion rate of the self-learning module by both regular and casual palliative care unit staff was 63/77 (82%). The follow-up online evaluation survey was completed by 23/50 (46%) of respondents who regularly worked on the palliative care unit. Respondents agreed (14/26; 54%) or strongly agreed (10/26; 38%) that the self-learning module was implemented successfully, with 100% agreement that it was effective for their educational needs. CONCLUSION: Using an online self-learning module is an effective method to engage and educate interprofessional staff on the RASS-PAL tool as part of an implementation strategy.

Risk factors for delirium in adult patients receiving specialist palliative care: A systematic review and meta-analysis.

BACKGROUND: Delirium is common and distressing for patients receiving palliative care. Interventions targetting modifiable risk factors in other settings have been shown to prevent delirium. Research on delirium risk factors in palliative care can inform context-specific risk-reduction interventions. AIM: To investigate risk factors for the development of delirium in adult patients receiving specialist palliative care. DESIGN: Systematic review and meta-analysis (PROSPERO CRD42019157168). DATA SOURCES: CINAHL, Cochrane Database of Systematic Reviews, Embase, MEDLINE and PsycINFO (1980-2021) were searched for studies reporting the association of risk factors with delirium incidence/prevalence for patients receiving specialist palliative care. Study risk of bias and certainty of evidence for each risk factor were assessed. RESULTS: Of 28 included studies, 16 conducted only univariate analysis, 12 conducted multivariate analysis. The evidence for delirium risk factors was limited with low to very low certainty. POTENTIALLY MODIFIABLE RISK FACTORS: Opioids and lower performance status were positively associated with delirium, with some evidence also for dehydration, hypoxaemia, sleep disturbance, liver dysfunction and infection. Mixed, or very limited, evidence was found for some factors targetted in multicomponent prevention interventions: sensory impairments, mobility, catheter use, polypharmacy (single study), pain, constipation, nutrition (mixed evidence). NON-MODIFIABLE RISK FACTORS: Older age, male sex, primary brain cancer or brain metastases and lung cancer were positively associated with delirium. CONCLUSIONS: Findings may usefully inform interventions to reduce delirium risk but more high quality prospective cohort studies are required to enable greater certainty about associations of different risk factors with delirium during specialist palliative care.

Stakeholder perspectives of a pilot multicomponent delirium prevention intervention for adult patients with advanced cancer in palliative care units: A behaviour change theory-based qualitative study.

BACKGROUND: Theory-based and qualitative evaluations in pilot trials of complex clinical interventions help to understand quantitative results, as well as inform the feasibility and design of subsequent effectiveness and implementation trials. AIM: To explore patient, family, clinician and volunteer ('stakeholder') perspectives of the feasibility and acceptability of a multicomponent non-pharmacological delirium prevention intervention for adult patients with advanced cancer in four Australian palliative care units that participated in a phase II trial, the 'PRESERVE pilot study'. DESIGN: A trial-embedded qualitative study via semi-structured interviews and directed content analysis using Michie's Behaviour Change Wheel and the Theoretical Domains Framework. SETTING/PARTICIPANTS: Thirty-nine people involved in the trial: nurses (n = 17), physicians (n = 6), patients (n = 6), family caregivers (n = 4), physiotherapists (n = 3), a social worker, a pastoral care worker and a volunteer. RESULTS: Participants' perspectives aligned with the 'capability', 'opportunity' and 'motivation' domains of the applied frameworks. Of seven themes, three were around the alignment of the delirium prevention intervention with palliative care (intervention was considered routine care; intervention aligned with the compassionate and collaborative culture of palliative care; and differing views of palliative care priorities influenced perspectives of the intervention) and four were about study processes more directly related to adherence to the intervention (shared knowledge increased engagement with the intervention; impact of the intervention checklist on attention, delivery and documentation of the delirium prevention strategies; clinical roles and responsibilities; and addressing environmental barriers to delirium prevention). CONCLUSION: This theory-informed qualitative study identified multiple influences on the delivery and documentation of a pilot multicomponent non-pharmacological delirium prevention intervention in four palliative care units. Findings inform future definitive studies of delirium prevention in palliative care.Australian New Zealand Clinical Trials Registry, ACTRN12617001070325; https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=373168.

Bereavement outcomes in family members of those who died in acute care hospitals before and during the first wave of COVID-19: A cohort study.

BACKGROUND: The COVID-19 pandemic has caused millions of deaths worldwide, leading to symptoms of grief among the bereaved. Neither the burden of severe grief nor its predictors are fully known within the context of the pandemic. AIM: To determine the prevalence and predictors of severe grief in family members who were bereaved early in the COVID-19 pandemic. DESIGN: Prospective, matched cohort study. SETTING/PARTICIPANTS: Family members of people who died in an acute hospital in Ottawa, Canada between November 1, 2019 and August 31, 2020. We matched relatives of patients who died of COVID (COVID +ve) with those who died of non-COVID illness either during wave 1 of the pandemic (COVID -ve) or immediately prior to its onset (pre-COVID). We abstracted decedents' medical records, contacted family members >6 months post loss, and assessed grief symptoms using the Inventory of Complicated Grief-revised. RESULTS: We abstracted data for 425 decedents (85 COVID +ve, 170 COVID -ve, and 170 pre-COVID), and 110 of 165 contacted family members (67%) consented to participate. Pre-COVID family members were physically present more in the last 48 h of life; the COVID +ve cohort were more present virtually. Overall, 35 family members (28.9%) had severe grief symptoms, and the prevalence was similar among the cohorts (p = 0.91). Grief severity was not correlated with demographic factors, physical presence in the final 48 h of life, intubation, or relationship with the deceased. CONCLUSION: Severe grief is common among family members bereaved during the COVID-19 pandemic, regardless of the cause or circumstances of death, and even if their loss took place before the onset of the pandemic. This suggests that aspects of the pandemic itself contribute to severe grief, and factors that normally mitigate grief may not be as effective.

Adaptation, implementation, and mixed methods evaluation of an interprofessional modular clinical practice guideline for delirium management on an inpatient palliative care unit.

BACKGROUND: Using delirium clinical guidelines may align interprofessional clinical practice and improve the care of delirious patients and their families. The aim of this project was to adapt, implement and evaluate an interprofessional modular delirium clinical practice guideline for an inpatient palliative care unit. METHODS: The setting was a 31-bed adult inpatient palliative care unit within a university-affiliated teaching hospital. Participants for the evaluation were interprofessional team members. Using integration of guideline adaptation and an education initiative, an interprofessional guideline adaptation group developed a face-to-face 'starter kit' module and four online self-learning modules. The mixed methods evaluation comprised pre-and post-implementation review of electronic patient records, an online survey, and analysis of focus groups/ interviews using an iterative, inductive thematic analysis approach. RESULTS: Guideline implementation took 12 months. All palliative care unit staff attended a 'starter kit' session. Overall completion rate of the four e-Learning modules was 80.4%. After guideline implementation, nursing documentation of non-pharmacological interventions occurring before medication administration was observed. There was 60% less scheduled antipsychotic use and an increase in 'as needed' midazolam use. The online survey response rate was 32% (25/77). Most participants viewed the guideline's implementation favourably. Six key themes emerged from the qualitative analysis of interviews and focus groups with ten participants: prior delirium knowledge or experiences, challenges of facilitating change, impacts on practice, collaborative effort of change, importance of standardized guidelines, and utility of guideline elements. CONCLUSIONS: Guideline implementation warrants concerted effort, time, and management support. Interprofessional team support facilitates the modular approach of guideline adaptation and implementation, leading to a change in clinical practice.

Outcomes and measures of delirium interventional studies in palliative care to inform a core outcome set: A systematic review.

BACKGROUND: Trials of interventions for delirium in various patient populations report disparate outcomes and measures but little is known about those used in palliative care trials. A core outcome set promotes consistency of outcome selection and measurement. AIM: To inform core outcome set development by examining outcomes, their definitions, measures and time-points in published palliative care studies of delirium prevention or treatment delirium interventions. DESIGN: Prospectively registered systematic review adhering to Preferred Reporting Items for Systematic Reviews and Meta-Analyses. DATA SOURCES: We searched six electronic databases (1980-November 2020) for original studies, three for relevant reviews and the International Clinical Trials Registry Platform for unpublished studies and ongoing trials. We included randomised, quasi-randomised and non-randomised intervention studies of pharmacological and non-pharmacological delirium prevention and/or treatment interventions. RESULTS: From 13/3244 studies (2863 adult participants), we identified 9 delirium-specific and 13 non-delirium specific outcome domains within eight Core Outcome Measures in Effectiveness Trials (COMET) taxonomy categories. There were multiple and varied outcomes and time points in each domain. The commonest delirium specific outcome was delirium severity (n = 7), commonly using the Memorial Delirium Assessment Scale (6/8 studies, 75%). Four studies reported delirium incidence. Non-delirium specific outcomes included mortality, agitation, adverse events, other symptoms and quality of life. CONCLUSION: The review identified few delirium interventions with heterogeneity in outcomes, their definition and measurement, highlighting the need for a uniform approach. Findings will inform the next stage to develop consensus for a core outcome set to inform delirium interventional palliative care research.

Delirium screening tools validated in the context of palliative care: A systematic review.

BACKGROUND: Delirium is a distressing neuropsychiatric disorder affecting patients in palliative care. Although many delirium screening tools exist, their utility, and validation within palliative care settings has not undergone systematic review. AIM: To systematically review studies that validate delirium screening tools conducted in palliative care settings. DESIGN: Systematic review with narrative synthesis (PROSPERO ID: CRD42019125481). A risk of bias assessment via Quality Assessment Tool for Diagnostic Accuracy Studies-2 was performed. DATA SOURCES: Five electronic databases were systematically searched (January 1, 1982-May 3, 2020). Quantitative studies validating a screening tool in adult palliative care patient populations were included. Studies involving alcohol withdrawal, critical or perioperative care were excluded. RESULTS: Dual-reviewer screening of 3749 unique titles and abstracts identified 95 studies for full-text review and of these, 17 studies of 14 screening tools were included (n = 3496 patients). Data analyses revealed substantial heterogeneity in patient demographics and variability in screening and diagnostic practices that limited generalizability between study populations and care settings. A risk of bias assessment revealed methodological and reporting deficits, with only 3/17 studies at low risk of bias. CONCLUSIONS: The processes of selecting a delirium screening tool and determining optimal screening practices in palliative care are complex. One tool is unlikely to fit the needs of the entire palliative care population across all palliative care settings. Further research should be directed at evaluating and/or adapting screening tools and practices to fit the needs of specific palliative care settings and populations.

The association between varying levels of palliative care involvement on costs during terminal hospitalizations in Canada from 2012 to 2015.

BACKGROUND: Inpatient palliative care is associated with lower inpatient costs; however, this has yet to be studied using a more nuanced, multi-tiered measure of inpatient palliative care and a national population-representative dataset. Using a population-based cohort of Canadians who died in hospital, our objectives were to: describe patients' receipt of palliative care and active interventions in their terminal hospitalization; and examine the relationship between inpatient palliative care and hospitalization costs. METHODS: Retrospective cohort study using data from the Discharge Abstract Database in Canada between fiscal years 2012 and 2015. The cohort were Canadian adults (age ≥ 18 years) who died in hospital between April 1st, 2012 and March 31st, 2015 (N = 250,640). The exposure was level of palliative care involvement defined as: medium-high, low, or no palliative care. The main measure was acute care costs calculated using resource intensity weights multiplied by the cost of standard hospital stay, represented in 2014 Canadian dollars (CAD). Descriptive statistics were represented as median (IQR), and n(%). We modelled cost as a function of palliative care using a gamma generalized estimating equation (GEE) model, accounting for clustering by hospital. RESULTS: There were 250,640 adults who died in hospital. Mean age was 76 (SD 14), 47% were female. The most common comorbidities were: metastatic cancer (21%), heart failure (21%), and chronic obstructive pulmonary disease (16%). Of the decedents, 95,450 (38%) had no palliative care involvement, 98,849 (38%) received low involvement, and 60,341 (24%) received medium to high involvement. Controlling for age, sex, province and predicted hospital mortality risk at admission, the cost per day of a terminal hospitalization was: $1359 (95% CI 1323: 1397) (no involvement), $1175 (95% CI 1146: 1206) (low involvement), and $744 (95% CI 728: 760) (medium-high involvement). CONCLUSIONS: Increased involvement of palliative care was associated with lower costs. Future research should explore whether this relationship holds for non-terminal hospitalizations, and whether palliative care in other settings impacts inpatient costs.

The occurrence and timing of delirium in acute care hospitalizations in the last year of life: A population-based retrospective cohort study.

BACKGROUND: Delirium is a distressing neurocognitive disorder that is common among terminally ill individuals, although few studies have described its occurrence in the acute care setting among this population. AIM: To describe the prevalence of delirium in patients admitted to acute care hospitals in Ontario, Canada, in their last year of life and identify factors associated with delirium. DESIGN: Population-based retrospective cohort study using linked health administrative data. Delirium was identified through diagnosis codes on hospitalization records. SETTING/PARTICIPANTS: Ontario decedents (1 January 2014 to 31 December 2016) admitted to an acute care hospital in their last year of life, excluding individuals age of <18 years or >105 years at admission, those not eligible for the provincial health insurance plan between their hospitalization and death dates, and non-Ontario residents. RESULTS: Delirium was recorded as a diagnosis in 8.2% of hospitalizations. The frequency of delirium-related hospitalizations increased as death approached. Delirium prevalence was higher in patients with dementia (prevalence ratio: 1.43; 95% confidence interval: 1.36-1.50), frailty (prevalence ratio: 1.67; 95% confidence interval: 1.56-1.80), or organ failure-related cause of death (prevalence ratio: 1.23; 95% confidence interval: 1.16-1.31) and an opioid prescription (prevalence ratio: 1.17; 95% confidence interval: 1.12-1.21). Prevalence also varied by age, sex, chronic conditions, antipsychotic use, receipt of long-term care or home care, and hospitalization characteristics. CONCLUSION: This study described the occurrence and timing of delirium in acute care hospitals in the last year of life and identified factors associated with delirium. These findings can be used to support delirium prevention and early detection in the hospital setting.

Economic evaluations of palliative care models: A systematic review.

BACKGROUND: Palliative care aims to improve quality of life by relieving physical, emotional, and spiritual suffering. Health system planning can be informed by evaluating cost and effectiveness of health care delivery, including palliative care. AIM: The objectives of this article were to describe and critically appraise economic evaluations of palliative care models and to identify cost-effective models in improving patient-centered outcomes. DESIGN: We conducted a systematic review and registered our protocol in PROSPERO (CRD42016053973). DATA SOURCES: A systematic search of nine medical and economic databases was conducted and extended with reference scanning and gray literature. Methodological quality was assessed using the Drummond checklist. RESULTS: We identified 12,632 articles and 5 were included. We included two modeling studies from the United States and England, and three economic evaluations from England, Australia, and Italy. Two studies compared home-based palliative care models to usual care, and one compared home-based palliative care to no care. Effectiveness outcomes included hospital readmission prevented, days at home, and palliative care symptom severity. All studies concluded that palliative care was cost-effective compared to usual care. The methodological quality was good overall, but three out of five studies were based on small sample sizes. CONCLUSION: Applicability and generalizability of evidence is uncertain due to small sample sizes, short duration, and limited modeling of costs and effects. Further economic evaluations with larger sample sizes are needed, inclusive of the diversity and complexity of palliative care populations and using patient-centered outcomes.

A mixed-methods pilot study of 'LIFEView' audiovisual technology: Virtual travel to support well-being and quality of life in palliative and end-of-life care patients.

BACKGROUND: There is evidence that psychosocial and spiritual interventions of short duration, such as reminiscence therapy, provide positive impacts on quality of life and emotional and existential well-being in adults receiving palliative care. AIM: To determine (1) the feasibility of integrating 'LIFEView', a video-based software with >1600 videos of world destinations, in palliative care settings, and (2) positive, neutral or harmful effects of using 'LIFEView' videos. DESIGN: A mixed-methods pre-post intervention pilot study was conducted to collect feasibility and preliminary data on physical and psychological symptoms, physiological indicators, spiritual well-being and aspects of quality of life. SETTING/PARTICIPANTS: Adult patients on an inpatient palliative care unit or receiving care from a community palliative care consultation team who were capable of providing consent and completing the outcome measures were eligible participants. RESULTS: Overall, 27/41 (66%) participants took part in the study. Feasibility criteria, including participant acceptability, low participant burden, tool completion rate and retention rate, were fulfilled, though challenges were experienced with recruitment. Modest improvements, though non-significant, were shown on preliminary data collected on physical and psychological symptoms using the Edmonton Symptom Assessment System-revised, spiritual well-being assessed by the 12-item Functional Assessment of Chronic Illness Therapy - Spiritual Well-Being scale and physiological measurements. Qualitative analysis revealed five themes: motivations for using 'LIFEView', perceptions of the technology, reminiscence, 'LIFEView' as an adaptable technology and ongoing or future use. CONCLUSION: A future adequately powered study to investigate the impacts of 'LIFEView' on patient well-being and quality of life appears to be feasible.

"No thanks, I don't want to see snakes again": a qualitative study of pain management versus preservation of cognition in palliative care patients.

BACKGROUND: Towards the end of life, use of opioid analgesics becomes more common in patients to control pain and improve quality of life. While pain medication may help manage pain, unwanted cognitive side effects are frequently noted. This balancing act presents a trade-off for patients between pain relief and adverse effects, where the desire to relieve pain must be evaluated against the desire to maintain cognitive clarity and may represent a difficult decision for patients receiving palliative care. Our goal was to understand how patients' decision making about pain medications balances the pain relief from those medications against the cognitive decline often associated with them. METHODS: We conducted qualitative semi-structured interviews with patients receiving home-based palliative care from a program in Toronto, Canada. Interview recordings were transcribed and analyzed using thematic analysis. RESULTS: Thirty-one interviews were conducted. Some patients preferred cognitive preservation over pain management because of a sense that cognition is central to their identity, the desire to maintain lucidity, a desire to continue participating in work or hobbies, and fear of addiction. Conversely, some patients preferred pain management over cognitive preservation because of a desire to avoid suffering, an inability to sleep without medications, or an acceptance of some cognitive compromise. A few patients attempted to find balance through tapering drugs, limiting their use of breakthrough analgesic doses, or using alternative strategies. CONCLUSIONS: Decision making around pain and pain management is a highly preference-sensitive process-with no clear right or wrong decisions, only the preferences of each patient. The findings from this study may influence the design of future patient-facing decision aids around pain management. Future studies should pilot interventions to better assist patients with this decision.

Burnout and resilience among Canadian palliative care physicians.

BACKGROUND: Physicians experience high rates of burnout, which may negatively impact patient care. Palliative care is an emotionally demanding specialty with high burnout rates reported in previous studies from other countries. We aimed to estimate the prevalence of burnout and degree of resilience among Canadian palliative care physicians and examine their associations with demographic and workplace factors in a national survey. METHODS: Physician members of the Canadian Society of Palliative Care Physicians and Société Québécoise des Médecins de Soins Palliatifs were invited to participate in an electronic survey about their demographic and practice arrangements and complete the Maslach Burnout Inventory for Medical Professionals (MBI-HSS (MP)), and Connor-Davidson Resilience Scale (CD-RISC). The association of categorical demographic and practice variables was examined in relation to burnout status, as defined by MBI-HSS (MP) score. In addition to bivariable analyses, a multivariable logistic regression analysis, reporting odds ratios (OR), was conducted. Mean CD-RISC score differences were examined in multivariable linear regression analysis. RESULTS: One hundred sixty five members (29%) completed the survey. On the MBI-HSS (MP), 36.4% of respondents reported high emotional exhaustion (EE), 15.1% reported high depersonalization (DP), and 7.9% reported low personal accomplishment (PA). Overall, 38.2% of respondents reported a high degree of burnout, based on having high EE or high DP. Median CD-RISC resilience score was 74, which falls in the 25th percentile of normative population. Age over 60 (OR = 0.05; CI, 0.01-0.38), compared to age ≤ 40, was independently associated with lower burnout. Mean CD-RISC resilience scores were lower in association with the presence of high burnout than when burnout was low (67.5 ± 11.8 vs 77.4 ± 11.2, respectively, p < 0.0001). Increased mean CD-RISC score differences (higher resilience) of 7.77 (95% CI, 1.97-13.57), 5.54 (CI, 0.81-10.28), and 8.26 (CI, 1.96-14.57) occurred in association with age > 60 as compared to ≤40, a predominantly palliative care focussed practice, and > 60 h worked per week as compared to ≤40 h worked, respectively. CONCLUSIONS: One in three Canadian palliative care physicians demonstrate a high degree of burnout. Burnout prevention may benefit from increasing resilience skills on an individual level while also implementing systematic workplace interventions across organizational levels.

Melatonin to prevent delirium in patients with advanced cancer: a double blind, parallel, randomized, controlled, feasibility trial.

BACKGROUND: Delirium is highly problematic in palliative care (PC). Preliminary data indicate a potential role for melatonin to prevent delirium, but no randomized controlled trials (RCTs) are reported in PC. METHODS: Patients aged ≥18 years, with advanced cancer, admitted to an inpatient Palliative Care Unit (PCU), having a Palliative Performance Scale rating ≥ 30%, and for whom consent was obtained, were included in the study. Patients with delirium on admission were excluded. The main study objectives were to assess the feasibility issues of conducting a double-blind RCT of exogenous melatonin to prevent delirium in PC: recruitment, retention, procedural acceptability, appropriateness of outcome measures, and preliminary efficacy and safety data. Study participants were randomized in a double-blind, parallel designed study to receive daily melatonin 3 mg or placebo orally at 21:00 over 28 days or less if incident delirium, death, discharge or withdrawal occurred earlier. Delirium was diagnosed using the Confusion Assessment Method. Efficacy endpoints in the melatonin and placebo groups were compared using time-to-event analysis: days from study entry to onset of incident delirium. RESULTS: Over 16 months, 60/616 (9.7%; 95% CI: 7.5-12.4%) screened subjects were enrolled. The respective melatonin (n = 30) vs placebo (n = 30) outcomes were: incident delirium in 11/30 (36.7%; 95%CI: 19.9-56.1%) vs 10/30 (33%; 95% CI: 17.3-52.8%); early discharge (6 vs 5); withdrawal (6 vs 3); death (0 vs 1); and 7 (23%) vs 11 (37%) reached the 28-day end point. The 25th percentile time-to-event were 9 and 18 days (log rank, χ2 = 0.62, p = 0.43) in melatonin and placebo groups, respectively. No serious trial medication-related adverse effects occurred and the core study procedures were acceptable. Compared to those who remained delirium-free during their study participation, those who developed delirium (n = 21) had poorer functional (p = 0.036) and cognitive performance (p = 0.013), and in particular, poorer attentional capacity (p = 0.003) at study entry. CONCLUSIONS: A larger double-blind RCT is feasible, but both subject accrual and withdrawal rates signal a need for multisite collaboration. The apparent trend for shorter time to incident delirium in the melatonin group bodes for careful monitoring in a larger trial. TRIAL REGISTRATION: Registered on July 21st 2014 with ClinicalTrials.gov : NCT02200172 .

Inclusion, characteristics and outcomes of people requiring palliative care in studies of non-pharmacological interventions for delirium: A systematic review.

BACKGROUND: Delirium is common, distressing, serious and under-researched in specialist palliative care settings. OBJECTIVES: To examine whether people requiring palliative care were included in non-pharmacological delirium intervention studies in inpatient settings, how they were characterised and what their outcomes were. DESIGN: Systematic review (PROSPERO 2017 CRD42017062178). DATA SOURCES: Systematic search in March 2017 for non-pharmacological delirium intervention studies in adult inpatients. Database search terms were 'delirium', 'hospitalisation', 'inpatient', 'palliative care', 'hospice', 'critical care' and 'geriatrics'. Scottish Intercollegiate Guidelines Network methodological checklists guided risk of bias assessment. RESULTS: The 29 included studies were conducted between 1994 and 2015 in diverse settings in 15 countries (9136 participants, mean age = 76.5 years (SD = 8.1), 56% women). Most studies tested multicomponent interventions (n = 26) to prevent delirium (n = 19). Three-quarters of the 29 included studies (n = 22) excluded various groups of people requiring palliative care; however, inclusion criteria, participant diagnoses, illness severity and mortality indicated their presence in almost all studies (n = 26). Of these, 21 studies did not characterise participants requiring palliative care or report their specific outcomes (72%), four reported outcomes for older people with frailty, dementia, cancer and comorbidities, and one was explicitly focused on people receiving palliative care. Study heterogeneity and limitations precluded definitive determination of intervention effectiveness and only allowed interpretations of feasibility for people requiring palliative care. Acceptability outcomes (intervention adverse events and patients' subjective experience) were rarely reported overall. CONCLUSION: Non-pharmacological delirium interventions have frequently excluded and under-characterised people requiring palliative care and infrequently reported their outcomes.

The incidence and prevalence of delirium across palliative care settings: A systematic review.

BACKGROUND: Delirium is a common and distressing neurocognitive condition that frequently affects patients in palliative care settings and is often underdiagnosed. AIM: Expanding on a 2013 review, this systematic review examines the incidence and prevalence of delirium across all palliative care settings. DESIGN: This systematic review and meta-analyses were prospectively registered with PROSPERO and included a risk of bias assessment. DATA SOURCES: Five electronic databases were examined for primary research studies published between 1980 and 2018. Studies on adult, non-intensive care and non-postoperative populations, either receiving or eligible to receive palliative care, underwent dual reviewer screening and data extraction. Studies using standardized delirium diagnostic criteria or valid assessment tools were included. RESULTS: Following initial screening of 2596 records, and full-text screening of 153 papers, 42 studies were included. Patient populations diagnosed with predominantly cancer (n = 34) and mixed diagnoses (n = 8) were represented. Delirium point prevalence estimates were 4%-12% in the community, 9%-57% across hospital palliative care consultative services, and 6%-74% in inpatient palliative care units. The prevalence of delirium prior to death across all palliative care settings (n = 8) was 42%-88%. Pooled point prevalence on admission to inpatient palliative care units was 35% (confidence interval = 0.29-0.40, n = 14). Only one study had an overall low risk of bias. Varying delirium screening and diagnostic practices were used. CONCLUSION: Delirium is prevalent across all palliative care settings, with one-third of patients delirious at the time of admission to inpatient palliative care. Study heterogeneity limits meta-analyses and highlights the future need for rigorous studies.