Symptom severity reported by older adults with cancer and its impact on survival prognostication.

INTRODUCTION: Symptom burden is a crucial factor for survival prognostication, but older adults may report fewer and less severe symptoms than younger patients. We investigated the impact of age on symptom severity and its prognostic implications in the prognostic model for advanced cancer (PRO-MAC). MATERIALS AND METHODS: Eight hundred forty subjects with incurable cancer, who were reviewed by palliative medicine at a tertiary university hospital, were categorized into four groups based on age: < 65 (young), 65-74 (young-old), 75-84 (old-old), and ≥ 85 (oldest-old) for comparison. The study compared individual symptoms reported on the Edmonton Symptom Assessment System-revised (ESAS-r) and analyzed the significance of each prognostic variable in the PRO-MAC model using multivariate Cox proportional hazards regression analysis for all age categories. We generated the log-rank test for each age group to evaluate the effectiveness of PRO-MAC across age groups. RSULTS: The older adults had significantly lower unadjusted mean scores in pain, tiredness, anxiety, wellbeing, and ESAS-r summative score compared to young adults. There was a higher proportion of older adults with no symptoms. The ESAS-r summative score remained a significant prognostic factor only in the young and young-old groups. More participants in the older age groups had dementia, which may impact reporting of symptom severity. Despite these findings, the PRO-MAC model remains applicable across all age groups as a multi-domain 90-day survival prognostication tool. DISCUSSION: Symptom burden, including pain, tiredness, anxiety, wellbeing, as well as summative ESASr scores, are lower in older adults with cancer. This could affect the prognostication of survival using symptom burden. However, a multi-dimensional prognostic model like PRO-MAC remains effective for older adults with advanced cancer. Further research is needed to explore tools that can help older adults express the severity of their symptoms and incorporate this into survival prognostication.

The PROgnostic ModEl for chronic lung disease (PRO-MEL): development and temporal validation.

BACKGROUND: Patients with chronic lung diseases (CLDs), defined as progressive and life-limiting respiratory conditions, experience a heavy symptom burden as the conditions become more advanced, but palliative referral rates are low and late. Prognostic tools can help clinicians identify CLD patients at high risk of deterioration for needs assessments and referral to palliative care. As current prognostic tools may not generalize well across all CLD conditions, we aim to develop and validate a general model to predict one-year mortality in patients presenting with any CLD. METHODS: A retrospective cohort study of patients with a CLD diagnosis at a public hospital from July 2016 to October 2017 was conducted. The outcome of interest was all-cause mortality within one-year of diagnosis. Potential prognostic factors were identified from reviews of prognostic studies in CLD, and data was extracted from electronic medical records. Missing data was imputed using multiple imputation by chained equations. Logistic regression models were developed using variable selection methods and validated in patients seen from January 2018 to December 2019. Discriminative ability, calibration and clinical usefulness of the model was assessed. Model coefficients and performance were pooled across all imputed datasets and reported. RESULTS: Of the 1000 patients, 122 (12.2%) died within one year. Patients had chronic obstructive pulmonary disease or emphysema (55%), bronchiectasis (38%), interstitial lung diseases (12%), or multiple diagnoses (6%). The model selected through forward stepwise variable selection had the highest AUC (0.77 (0.72-0.82)) and consisted of ten prognostic factors. The model AUC for the validation cohort was 0.75 (0.70, 0.81), and the calibration intercept and slope were - 0.14 (-0.54, 0.26) and 0.74 (0.53, 0.95) respectively. Classifying patients with a predicted risk of death exceeding 0.30 as high risk, the model would correctly identify 3 out 10 decedents and 9 of 10 survivors. CONCLUSIONS: We developed and validated a prognostic model for one-year mortality in patients with CLD using routinely available administrative data. The model will support clinicians in identifying patients across various CLD etiologies who are at risk of deterioration for a basic palliative care assessment to identify unmet needs and trigger an early referral to palliative medicine. TRIAL REGISTRATION: Not applicable (retrospective study).

Factors associated with the place of death of persons with advanced dementia: A systematic review of international literature with meta-analysis.

BACKGROUND: Many individuals with advanced dementia die in hospital, despite preferring home death. Existing evidence of factors affecting their place of death is inconsistent. To inform policies/practices for meeting needs/preferences, systematically establishing the evidence is pertinent, particularly given the exponential rise in advanced dementia prevalence. AIM: To identify factors influencing where people with advanced dementia die. DESIGN AND DATA SOURCES: This systematic review with meta-analysis was registered on PROSPERO (CRD42022366722). Medline, CINAHL, PsycINFO, SocINDEX and a grey literature database, Overton, were searched on 21/12/2022, supplemented by hand-searching/citation tracking. Papers reporting quantitative data on factors associated with place of death in advanced dementia were included and appraised using QualSyst. Data were analysed using random effects with the certainty of evidence determined using the GRADE criteria. RESULTS: Thirty-three papers involving >5 million individuals (mean age = 89.2 years) were included. Long-term care setting deaths were relatively common but hospice deaths were rarer. Marriage's association with home death underscores social networks' importance, while younger age's and male gender's associations with hospital death demonstrate patients' and families' interdependency. Pneumonia/COPD's opposing effects on hospital deaths with cancer/functional impairment highlight the challenges of advanced dementia care. Unlike hospital/nursing home bed availability's lack of effect, capitated funding (fixed-amount-per-patient-per-period) decreased hospital death likelihood. CONCLUSION: This comprehensive review of place of death determinants highlight the profound challenges of advanced dementia end-of-life care. Given that bed capacity did not affect place of death, a capitation-based, integrated palliative care model would appear more likely to meet patients' needs in a resource-constrained environment.

Risk Factors for All-Cause Mortality in Patients Diagnosed with Advanced Heart Failure: A Scoping Review.

Introduction: Identifying the evolving needs of patients with advanced heart failure (AdHF) and triaging those at high risk of death can facilitate timely referrals to palliative care and advance patient-centered individualized care. There are limited models specific for patients with end-stage HF. We aim to identify risk factors associated with up to three-year all-cause mortality (ACM) and describe prognostic models developed or validated in AdHF populations. Methods: Frameworks proposed by Arksey, O'Malley, and Levac were adopted for this scoping review. We searched the Medline, EMBASE, PubMed, CINAHL, Cochrane library, Web of Science and gray literature databases for articles published between January 2010 and September 2020. Primary studies that included adults aged ≥ 18 years, diagnosed with AdHF defined as New York Heart Association class III/IV, American Heart Association/American College of Cardiology Stage D, end-stage HF, and assessed for risk factors associated with up to three-year ACM using multivariate analysis were included. Studies were appraised using the Quality of Prognostic Studies tool. Data were analyzed using a narrative synthesis approach. Results: We reviewed 167 risk factors that were associated with up to three-year ACM and prognostic models specific to AdHF patients across 65 articles with low-to-moderate bias. Studies were mostly based in Western and/or European cohorts (n = 60), in the acute care setting (n = 56), and derived from clinical trials (n = 40). Risk factors were grouped into six domains. Variables related to cardiovascular and overall health were frequently assessed. Ten prognostic models developed/validated on AdHF patients displayed acceptable model performance [area under the curve (AUC) range: 0.71-0.81]. Among the ten models, the model for end-stage-liver disease (MELD-XI) and acute decompensated HF with N-terminal pro b-type natriuretic peptide (ADHF/proBNP) model attained the highest discriminatory performance against short-term ACM (AUC: 0.81). Conclusions: To enable timely referrals to palliative care interventions, further research is required to develop or validate prognostic models that consider the evolving landscape of AdHF management.

Risk factors for short-term all-cause mortality in patients with end stage renal disease: a scoping review.

OBJECTIVES: There is a lack of prognostic information to guide the prediction of short-term all-cause mortality in patients with end-stage renal disease (ESRD). The aim was to review the risk factors that influenced the risk of short-term all-cause mortality in patients with ESRD. METHODS: MEDLINE, Embase, PubMed, CINAHL, the Cochrane Library and Web of Science databases were searched for articles published between 2000 and 2020. Articles describing risk factors predicting short-term mortality (≤ 3 years) in patients with ESRD were included. Four reviewers independently performed title, abstract, full text screening and data extraction. Assessment of risk of bias was assessed using the Quality In Prognosis Studies (QUIPS) tool checklist. RESULTS: 20,840 articles were identified and 113 papers were included for this review. Of the 113 papers, 6.2% included only peritoneal dialysis (PD) patients, 67.3% included only hemodialysis (HD) patients, 20.4% included both PD and HD patients, with the remaining papers featuring patients on conservative management or awaiting renal transplant. Risk factors were categorised into 13 domains: 1)demographics/ lifestyle, 2) comorbidities 3)intradialytic blood pressure, 4)biomarkers, 5)cardiovascular measurements, 6)frailty status, 7)medications, 8)treatment related indicators, 9)renal related parameters, 10)health status, 11)cause of ESRD, 12)access to healthcare care/ information and, 13)proxy measures for poor health. C-reactive protein(CRP), age, and functional status were observed to have higher percentage of instances of being significantly associated with all-cause mortality. CONCLUSION: Commonly examined risk factors observed from this review may be used to build a general prognostic model for patients with ESRD, with specific treatment related risk factors added on to enhance the accuracy of the models.

Prognostic Factors of Mortality in Nonchronic Obstructive Pulmonary Disease Chronic Lung Disease: A Scoping Review.

Introduction: Patients with chronic lung disease (CLD) experience a heavy symptom burden at the end of life, but their uptake of palliative care is notably low. Having an understanding of a patient's prognosis would facilitate shared decision making on treatment options and care planning between patients, families, and their clinicians, and complement clinicians' assessments of patients' unmet palliative needs. While literature on prognostication in patients with chronic obstructive pulmonary disease (COPD) has been established and summarized, information for other CLDs remains less consolidated. Summarizing the mortality risk factors for non-COPD CLDs would be a novel contribution to literature. Hence, we aimed to identify and summarize the prognostic factors associated with non-COPD CLDs from the literature. Methods: We conducted a scoping review following published guidelines. We searched MEDLINE, Embase, PubMed, CINAHL, Cochrane Library, and Web of Science for studies published between 2000 and 2020 that described non-COPD CLD populations with an all-cause mortality risk period of up to three years. Only primary studies which reported associations with mortality adjusted through multivariable analysis were included. Results: Fifty-five studies were reviewed, with 53 based on interstitial lung disease (ILD) or connective tissue disease-associated ILD populations and two in bronchiectasis populations. Prognostic factors were classified into 10 domains, with pulmonary function and disease being the largest. Older age, lower forced vital capacity, and lower carbon monoxide diffusing capacity were most commonly investigated and associated with statistically significant increases in mortality risks. Conclusions: This comprehensive overview of prognostic factors for patients with non-COPD CLDs would facilitate the identification and prioritization of candidate factors to predict short-term mortality, supporting tool development for decision making and to identify high-risk patients for palliative needs assessments. Literature focused on patients with ILDs, and more studies should be conducted on other CLDs to bridge the knowledge gap.

Diagnosis and outcomes of cachexia in Asia: Working Consensus Report from the Asian Working Group for Cachexia.

Chronic diseases often lead to metabolic disorders, causing anabolic resistance and increased energy consumption, which result in cachexia. Cachexia, in turn, can lead to major clinical consequences such as impaired quality of life, shortened life expectancy, and increased healthcare expenditure. Existing international diagnostic criteria for cachexia employ thresholds derived from Western populations, which may not apply to Asians due to differing body compositions. To address this issue, the Asian Working Group for Cachexia (AWGC) was initiated. The AWGC comprises experts in cachexia research and clinical practice from various Asian countries and aims to develop a consensus on diagnostic criteria and significant clinical outcomes for cachexia in Asia. The AWGC, composed of experts in cachexia research and clinical practice from several Asian countries, undertook three-round Delphi surveys and five meetings to reach a consensus. Discussions were held on etiological diseases, essential diagnostic items for cachexia, including subjective and objective symptoms and biomarkers, and significant clinical outcomes. The consensus highlighted the importance of multiple diagnostic factors for cachexia, including chronic diseases, either or both weight loss or low body mass index, and at least one of the following: anorexia, decreased grip strength (<28 kg in men and <18 kg in women), or elevated C-reactive protein levels (>5 mg/L [0.5 mg/dL]). The AWGC proposed a significant weight change of 2% or more over a 3-6 month period and suggested a tentative cut-off value of 21 kg/m2 for low body mass index in diagnosing cachexia. Critical clinical outcomes were determined to be mortality, quality of life as assessed by tools such as EQ-5D or the Functional Assessment of Anorexia/Cachexia Therapy, and functional status as measured by the Clinical Frailty Scale or Barthel Index, with significant emphasis on patient-reported outcomes. The AWGC consensus offers a comprehensive definition and user-friendly diagnostic criteria for cachexia, tailored specifically for Asian populations. This consensus is set to stimulate future research and enhance the multidisciplinary approach to managing cachexia. With plans to develop further guidelines for the optimal treatment, prevention, and care of cachexia in Asians, the AWGC criteria are expected to drive research across chronic co-morbidities and cancer in Asia, leading to future refinement of diagnostic criteria.

Semi-automating abstract screening with a natural language model pretrained on biomedical literature.

We demonstrate the performance and workload impact of incorporating a natural language model, pretrained on citations of biomedical literature, on a workflow of abstract screening for studies on prognostic factors in end-stage lung disease. The model was optimized on one-third of the abstracts, and model performance on the remaining abstracts was reported. Performance of the model, in terms of sensitivity, precision, F1 and inter-rater agreement, was moderate in comparison with other published models. However, incorporating it into the screening workflow, with the second reviewer screening only abstracts with conflicting decisions, translated into a 65% reduction in the number of abstracts screened by the second reviewer. Subsequent work will look at incorporating the pre-trained BERT model into screening workflows for other studies prospectively, as well as improving model performance.

Predicting mortality in patients diagnosed with advanced dementia presenting at an acute care hospital: the PROgnostic Model for Advanced DEmentia (PRO-MADE).

BACKGROUND: Challenges in prognosticating patients diagnosed with advanced dementia (AD) hinders timely referrals to palliative care. We aim to develop and validate a prognostic model to predict one-year all-cause mortality (ACM) in patients with AD presenting at an acute care hospital. METHODS: This retrospective cohort study utilised administrative and clinical data from Tan Tock Seng Hospital (TTSH). Patients admitted to TTSH between 1st July 2016 and 31st October 2017 and identified to have AD were included. The primary outcome was ACM within one-year of AD diagnosis. Multivariable logistic regression was used. The PROgnostic Model for Advanced Dementia (PRO-MADE) was internally validated using a bootstrap resampling of 1000 replications and externally validated on a more recent cohort of AD patients. The model was evaluated for overall predictive accuracy (Nagelkerke's R2 and Brier score), discriminative [area-under-the-curve (AUC)], and calibration [calibration slope and calibration-in-the-large (CITL)] properties. RESULTS: A total of 1,077 patients with a mean age of 85 (SD: 7.7) years old were included, and 318 (29.5%) patients died within one-year of AD diagnosis. Predictors of one-year ACM were age > 85 years (OR:1.87; 95%CI:1.36 to 2.56), male gender (OR:1.62; 95%CI:1.18 to 2.22), presence of pneumonia (OR:1.75; 95%CI:1.25 to 2.45), pressure ulcers (OR:2.60; 95%CI:1.57 to 4.31), dysphagia (OR:1.53; 95%CI:1.11 to 2.11), Charlson Comorbidity Index ≥ 8 (OR:1.39; 95%CI:1.01 to 1.90), functional dependency in ≥ 4 activities of daily living (OR: 1.82; 95%CI:1.32 to 2.53), abnormal urea (OR:2.16; 95%CI:1.58 to 2.95) and abnormal albumin (OR:3.68; 95%CI:2.07 to 6.54) values. Internal validation results for optimism-adjusted Nagelkerke's R2, Brier score, AUC, calibration slope and CITL were 0.25 (95%CI:0.25 to 0.26), 0.17 (95%CI:0.17 to 0.17), 0.76 (95%CI:0.76 to 0.76), 0.95 (95% CI:0.95 to 0.96) and 0 (95%CI:-0.0001 to 0.001) respectively. When externally validated, the model demonstrated an AUC of 0.70 (95%CI:0.69 to 0.71), calibration slope of 0.64 (95%CI:0.63 to 0.66) and CITL of -0.27 (95%CI:-0.28 to -0.26). CONCLUSION: The PRO-MADE attained good discrimination and calibration properties. Used synergistically with a clinician's judgement, this model can identify AD patients who are at high-risk of one-year ACM to facilitate timely referrals to palliative care.

The systemic challenges of non-palliative care professionals caring for end-of-life patients: A lived experience study.

OBJECTIVES: The aims of this study are to identify the challenges faced by non-palliative care professionals (NPCPs) in caring for end-of-life patients; determine how these challenges interact with and influence each other systemically; and advance the theories and practices for supporting NPCPs in the provision of quality end-of-life care beyond the boundaries of palliative medicine. METHODS: A constructivist phenomenological research design with an Interpretive-Systemic Framework of inquiry was adopted. Thirty-five physicians, 35 nurses, and 35 Medical Social Workers who play critical roles in caring for end-of-life patients and belonging to the 9 major medical disciplines of Cardiology, Geriatric, Intensive Care Medicine, Internal Medicine, Nephrology, Neurology, Oncology, Respiratory Medicine, and Surgery were recruited through purposive snowball sampling from 3 major public hospitals. RESULTS: Framework analysis revealed 5 themes and 17 subthemes that illuminate the individual, relational, cultural, institutional, and structural challenges that NPCPs faced in rendering end-of-life care. These challenges influence each other within the health-care ecosystem, serving to perpetuate or heighten care obstacles. SIGNIFICANCE OF RESULTS: This is the first known study exploring the systemic challenges of NPCPs spanning 9 major medical disciplines and encompassing 3 professional stakeholders responsible for the care for end-of-life patients, thus ensuring perspective inclusivity across the health-care system. Recommendations that consider the complexity of the interactions between these systemic challenges are presented in detail.

Palliative care integration in the intensive care unit: healthcare professionals' perspectives - a qualitative study.

OBJECTIVES: The complex care needs and high mortality of critically ill patients in intensive care unit (ICU) warrants a team approach. While studies have affirmed the integral role of palliative care teams in ICU, little is known about the ICU healthcare professional's perception on how this integration affects the care of the critically ill.This study examines their perception of how integration of palliative care into ICU practice affects interprofessional collaborative practices and relationships in the delivery of care. METHODS: A qualitative study was conducted in 13 focus group discussions with 54 ICU healthcare professionals recruited through purposive sampling. Data were analysed using a qualitative descriptive approach reflecting uninterpreted participants' description of their experiences in its most unbiased manner. RESULTS: ICU clinicians perceived that palliative care integration into the ICU enhanced care of patients and team dynamics in three areas: (1) bridging care, (2) cultural shift and (3) empowering, advocating and enhancing job satisfaction. Enhanced collaborative efforts between disciplines led to improved mutual understanding, shared-decision making and alignment of care goals. There was a shift in perception of dying as a passive process, to an active process of care where various healthcare professionals could work together to optimise symptom control and support grieving families. Team members felt empowered to advocate for patients, improving their sense of job fulfilment. CONCLUSIONS: Palliative care integration enhanced perception of collaborative practices in caring for the dying. Future studies could use empirical methods to measure collaboration and patient outcomes to further understand team dynamics.

Integrated palliative homecare in advanced dementia: reduced healthcare utilisation and costs.

OBJECTIVES: To determine the economic benefit of an integrated home-based palliative care programme for advanced dementia (Programme Dignity), evaluation is required. This study aimed to estimate Programme Dignity's average monthly cost from a provider's perspective; and compare healthcare utilisation and costs of programme patients with controls, accounting for enrolment duration. METHODS: This was a retrospective cohort study. Home-dwelling patients with advanced dementia (stage 7 on the functional assessment staging in Alzheimer's disease) with a history of pneumonia, albumin <35 g/L or tube-feeding and known to be deceased were analysed (Programme Dignity=184, controls=139). One-year programme operational costs were apportioned on a per patient-month basis. Cumulative healthcare utilisation and costs were examined at 1, 3 and 6 months look-back from death. Between-group comparisons used Poisson, zero-inflated Poisson regressions and generalised linear models. RESULTS: The average monthly programme cost was SGD$1311 (SGD-Pounds exchange rate: 0.481) per patient. Fully enrolled programme patients were less likely to visit the emergency department (incidence rate ratios (IRRs): 1 month=0.56; 3 months=0.19; 6 months=0.10; all p<0.001), be admitted to hospital (IRRs: 1 month=0.60; 3 months=0.19; 6 months=0.15; all p<0.001), had a lower cumulative length of stay (IRRs: 1 month=0.78; 3 months=0.49; 6 months=0.24; all p<0.001) and incurred lesser healthcare utilisation costs (ß-coefficients: 1 month=0.70; 3 months=0.40; 6 months=0.43; all p<0.01) at all time-points examined. CONCLUSION: Programme Dignity for advanced dementia reduces healthcare utilisation and costs. If scalable, it may benefit more patients wishing to remain at home at the end-of-life, allowing for a potentially sustainable care model to cope with rapid population ageing. It contributes to the evidence base of advanced dementia palliative care and informs healthcare policy making. Future studies should estimate informal caregiving costs for comprehensive economic evaluation.

Ketamine in Severe Leptomeningeal Pain.

Carcinomatosis meningitis is a rare but deadly complication of medulloblastoma. Surgical and systemic treatment options are often limited in advanced stages of the cancer. Meningeal irritation from raised intracranial pressure causes leptomeningeal pain that may respond poorly to opioids and common adjuvant analgesics. We present the case of a terminally ill patient with severe leptomeningeal pain that responded to a trial of ketamine as an adjunct to opioids.

Protocol for a randomised controlled trial on impact of comprehensive geriatric and supportive assessment versus standard care in older adults with cancer undergoing curative treatment: The Geriatric Oncology SuPportive clinic for ELderly (GOSPEL) study.

Cancer affects older adults with varying levels of frailty, but cancer treatment is extrapolated from clinical trials involving predominantly young and robust subjects. Recent geriatric oncology randomised controlled trials (RCT) report that geriatric assessment leading to frailty-guided intervention reduces treatment-related toxicity whilst maintaining survival and improving quality of life (QoL). However, these positive results have not have been consistently reported in the literature. We postulate that the impact of geriatric interventions has been underestimated in these studies with the inclusion of subjects receiving palliative-intent chemotherapy in whom dose reduction is common. Integrating supportive care with current geriatric oncology models may improve the QoL of older adults undergoing treatment. However, no studies as yet have examined such integrated geriatric and supportive models of care. The Geriatric Oncology SuPportive clinic for Elderly (GOSPEL) study is a single-centre, open-label, analyst-blinded RCT evaluating the impact of comprehensive geriatric and supportive care on QoL of older adults with cancer undergoing curative treatment. Older adults aged above 65, with a Geriatric-8 score ≤ 14, with plans for high dose radiotherapy and/or curative chemotherapy will be recruited. The primary QoL outcome is measured using the European Organisation for Research and Treatment of Cancer (EORTC) QLQ-ELD14 mobility scale at 12 weeks. Secondary outcomes include overall and disease-free survival, treatment-related adverse events, and hospital admissions. We pre-powered this study to recruit 200 subjects based on the minimally clinically important difference for EORTC QLQ-ELD14 to achieve 80% statistical power (alpha 0.05), assuming 25% attrition. Outcomes will be analysed using intention-to-treat. Intervention consists of multi-domain comprehensive geriatric and supportive care assessments from a multidisciplinary team targeting unmet needs. These include functional decline, falls, incontinence, cognitive impairment, multi-morbidity, polypharmacy, and symptom relief, as well as social and psycho-spiritual concerns. Standard care entails routine oncological management with referral to geriatrics based on the discretion of the primary oncologist. Recruitment has been ongoing since August 2020. Results from the GOSPEL study will increase understanding of the impact of integrated geriatric and supportive care programs in older adults with cancer receiving curative treatment. Trial registration: This study is registered under ClinicalTrials.gov (ID NCT04513977).

Use of Phenobarbitone for Palliative Sedation in Dyspneic Crises Due to COVID-19 Pneumonia - A Case Series.

Patients who suffer from dyspnea while dying from COVID-19 are treated with opioids and benzodiazepines. In some instances, patients may experience refractory dyspnea at the end of life. Palliative sedation can be prescribed to alleviate such patients' suffering. We describe two patients being treated for severe COVID-19 pneumonia in a tertiary hospital. Both developed intractable dyspneic crises despite high-dose opioids and benzodiazepines. This led to their requirement of palliative sedation in the general ward using subcutaneous phenobarbitone (phenobarbital). We outline clinical considerations for the use of palliative sedation in COVID-19 related dyspnea. In particular, we discuss the evidence for, benefits and limitations of using phenobarbitone for palliative sedation in COVID-19 patients.

Impact of Palliative Care in End-of-Life of Fibrotic Interstitial Lung Disease Patients.

Background: Interstitial lung disease (ILD) is associated with poor quality of life (QoL) and high symptom burden. Studies evaluating the benefits of palliative care examined mainly idiopathic pulmonary fibrosis (IPF) patients. We aim to examine the impact of palliative care on a broader group of fibrotic ILD patients. Methods: Single center retrospective cohort study comparing deceased ILD patients who received outpatient palliative care services (palliative-intervention group) against a usual care group. Results: Of 63 subjects, 26 (41%) were in the palliative-intervention group and 37 (59%) in the usual care group. Median time to palliative care referral was 8.6 (IQR .3-21.2) months. Dyspnea-related disability was greater in the palliative-intervention group [mMRC dyspnea score 3.5(IQR 2-4) vs 2(IQR 2-4), P = .039], with more patients requiring long term oxygen therapy (70% vs 30%, P < .001). There was no difference in the median number of hospitalizations or length of stay in the last 6 months of life. Patients in the palliative-intervention group had a higher uptake of advance care planning (ACP) (39% vs 11%, P = .014), lower frequency of intensive care unit (ICU) admissions (5% vs 19%, P = .102) and were prescribed more opioids (96% vs 27%, P < .001) and benzodiazepines (39% vs 14%, P = .022). The palliative-intervention group experienced a longer median survival of 23.9 months (95% confidence interval [CI] 14.1-33.7) compared to the usual group (11.4 months [95% CI 5.4-17.3] (log-rank test: P = .023). Male gender was a strong predictor of 1-year mortality. Conclusions: The palliative-intervention group received earlier pharmacologic intervention for symptom relief. Healthcare utilization was not increased despite greater dyspnea-related disability.

Burnout in Palliative Care - Difficult Cases: Qualitative Study.

OBJECTIVES: Burnout is common among palliative care clinicians, occurring as a result of emotions experienced in caring for challenging patients or families. Awareness of these scenarios helps clinicians and teams appropriately manage their own emotions and prevent burnout. We studied challenging clinical situations and the emotions encountered by experienced palliative care clinicians which could potentially contribute to burnout. METHODS: A qualitative study was conducted using semistructured interviews with purposive sampling of 18 palliative care clinicians-5 doctors, 10 nurses and 3 social workers who worked in various palliative care settings (hospital palliative care team, home hospice and inpatient hospice). The interviews were recorded verbatim, transcribed and analysed using a thematic analysis approach. RESULTS: The mean age of the interviewees was 52 years old and the mean number of years practising palliative care was 15.7 years (ranging from 10 to 25 years). The following clinical situations were reported by our respondents as particularly challenging, potentially leading to burnout: (1) abusive patients and families, (2) 'bad deaths', (3) death of young patients, (4) complex cases, and (5) having multiple deaths or difficult cases at any one time. Emotions encountered in the course of care of these cases included: (1) feeling overwhelmed, (2) having a sense of helplessness and failure, as well as (3) a sense of injustice. CONCLUSION: The challenging cases we described evoke strong emotional reactions from palliative care clinicians that need to be adequately addressed to prevent burnout.

Methadone rotation for cancer pain: an observational study.

CONTEXT: Methadone is a useful option in the treatment of cancer pain. Despite its advantages, methadone use is complicated due to high interindividual variability in pharmacokinetics. Various rotation methods from other opioids have been proposed in mostly Caucasian populations. OBJECTIVES: This study aims to describe our experience with opioid rotation to methadone for management of cancer pain in a predominantly Asian population. METHODS: A retrospective review of 52 inpatients initiated on methadone for cancer pain from June 2015 to June 2018 was conducted. Our institution protocol for methadone rotation involves either one of two methods ('Stop-and-go' or the Edmonton 3-day rotation) based on the morphine-equivalent daily dose (MEDD), using an equianalgesic ratio of 10:1 for MEDD <1000 mg. To account for incomplete cross-tolerance, we further reduce the calculated dose by 30%. RESULTS: The majority of patients had mixed nociceptive-neuropathic pain (83%) and the predominant reason for methadone rotation was ineffective analgesia with other opioids (75%). The median MEDD before rotation was 104 mg. Effective analgesia (defined as a decrease in numerical rating scale (NRS) of ≥1 or attainment of NRS ≤3) was achieved within 3 days after rotation in 89% of patients. Patients with an MEDD ≤100 mg/day required a greater degree of uptitration of methadone dose after rotation compared with those with an MEDD >100 mg/day. CONCLUSION: Rotation to methadone according to our protocol is effective in achieving adequate analgesia in most patients experiencing nociceptive-neuropathic pain. Our results also suggest that a fixed equianalgesic ratio of 10:1 may be adequate for patients at low-to-moderate MEDD <400 mg/day.

Factors Associated With Family Caregiver Burden of Home-Dwelling Patients With Advanced Dementia.

OBJECTIVES: To realize patients' preferences for home death, this study aimed to identify factors associated with family caregiver burden of home-dwelling patients with advanced dementia and examine its relationship with end-of-life care treatment decisions. DESIGN: A prospective cohort study. SETTING AND PARTICIPANTS: Patient-family caregiver dyads enrolled in a home-based palliative care program for patients with advanced dementia, with family caregiver burden assessed using the Zarit Burden Interview (ZBI) on enrolment, were included. METHODS: Independent variables included sociodemographic data, patients' clinical phase, symptom severity, quality of life, informal paid help availability, and community resources utilized. Dependent variable was continuous ZBI scores and ZBI scores dichotomized into <24 and ≥24 for predicting depression risk. Place of death and interventions received 2 weeks before death were also collected. Data were analyzed using multivariate linear and logistic regression. RESULTS: From October 2014 to December 2020, a total of 377 family caregivers were assessed with ZBI. Median score was 25 (IQR 15-36), and 54.4% of them were at risk of depression. Younger family caregivers had higher ZBI scores (ß = -0.22, 95% CI -0.38, -0.07), with the depression risk doubling for family caregivers aged <60 years (OR 2.13, 95% CI 1.33, 3.43). Absence of informal paid help also increased the ZBI scores (ß = -9.04, 95% CI -14.86, -3.22) and depression risk (OR 2.50, 95% CI 1.03, 6.09). In addition, caregivers' ZBI scores increased with patients' neuropsychiatric symptom severity (ß = 0.49, 95% CI 0.08, 0.89), and caregivers of clinically unstable patients had a higher depression risk (OR 1.80, 95% CI 1.03, 3.12). Baseline caregiver burden was not associated with treatment decisions made at the end of life. CONCLUSIONS AND IMPLICATIONS: Younger family caregivers caring for clinically unstable patients with severe neuropsychiatric symptoms experienced greater burden without informal paid help. For end-of-life care at home in advanced dementia to be tenable, relevant national agencies and stakeholders are recommended to work collectively to support family caregivers holistically.

Medical cost of advanced illnesses in the last-year of life-retrospective database study.

OBJECTIVE: This study aims to quantify medical care utilisation, and to describe the cost trajectories of individuals with advanced illnesses in the last-year of life, differentiated by advanced cancer, end-stage organ failure and progressive neurological disorders. METHODS: This retrospective database study included decedents who had previous inpatient or outpatient encounters at a public hospital in Singapore. Patients with advanced diseases were identified based on diagnostic codes and clinical criteria. Using a look-back approach, the amount of healthcare services utilised and the corresponding mean monthly and annual costs to the healthcare system in the last 12-months of life were quantified. RESULTS: The last 12-months of life among 6,598 decedents was associated with £20,524 (95% confidence interval: £20,013-£21,036) in medical costs, of which 80% was accounted for by inpatient admissions. Costs increased sharply in the last 2-months of life, with a large proportion of monthly costs accounted for by inpatient admissions which rose rapidly from 61% at 12-months prior to death to 94% in the last-month of life. Compared to patients with cancer, individuals diagnosed with non-cancer advanced illnesses accumulated 1.6 times more healthcare costs in the last-year of life with significant differences across patients with end-stage organ failure and progressive neurological disorders. CONCLUSION: Healthcare costs varied across disease conditions at the end-of-life. With advance care planning and close collaboration between the inpatient clinical team and the community providers, it may be possible to re-direct some of the hospitalisation costs to community-based palliative care services.