Palliative Home Care Services Research Articles

De-escalating treatments and transitioning care in a cardiac intensive care units network

Abstract Funding Acknowledgements None. Background Recent data (1) have shown that end-of-life (EOL) management of patients with acute decompensated heart failure (ADHF) in Cardiac Intensive Care Units (CICU) is aggressive, with late or no involvement of palliative care (PC) teams. Purpose To evaluate current PC and EOL practices in a contemporary multicenter registry of patients with ADHF who deteriorated to cardiogenic shock (CS). Methods A survey-based approach was used to collect data on PC and EOL management practices. We enrolled CS patients from 12 participating centers. A subset of 153 patients with ADHF-CS, enrolled between March 2020 and March 2023, was analyzed. We asked participating centers to report their practice regarding de-escalating treatments and transitioning care in the context of EOL, focusing on 1) discussion of implantable cardioverter defibrillator (ICD) deactivation with patients, 2) documentation of do-not-resuscitate (DNR) orders in the patient's medical record, and 3) documentation of advance directives in the patient's medical record. We also examined early PC team involvement and ICD deactivation as indicators of de-escalating treatments and transitional care in ADHF-CS. Results are presented as numbers and percentages (%) for categorical variables and medians (interquartile range, IQR) for continuous variables. Results Baseline characteristics of the population are shown in Table 1. Figure 1 describes the practices of the participating centers. DNR was routinely documented in the medical records in only 5 of 12 centers (41.7%). PC teams were involved in 21 of 153 enrolled ADHF-CS patients (13.7%). Of the 51 patients with an ICD, 17 died: 13 patients (76%) died in the hospital and 4 (24%) died within 6 months of discharge. ICD deactivation occurred in 6 of 17 deceased patients (35.3%). One patient had ICD deactivation supported by home PC services. Conclusions This study shows that the practice of de-escalating therapy, including ICD deactivation, is not routine in the participating centers. Our findings highlight the importance of integrating PC as a concurrent process with intensive care to effectively address the unmet needs of these patients and their families.

Estimated mortality risk and use of palliative care services among home care clients during the last 6 months of life: a retrospective cohort study.

In Canada, only 15% of patients requiring palliative care receive such services in the year before death. We describe health care utilization patterns among home care users in their last 6 months of life to inform care planning for older people with varying mortality risks and evolving care needs as they decline. Using population health administrative data from Ontario, we performed a retrospective cohort study involving home care clients aged 50 years and older who received at least 1 interRAI (Resident Assessment Instrument) Home Care assessment between April 2018 and September 2019. We report the proportion of clients who used acute care, long-term care, and palliative home care services within 6 months of their assessment, stratified by their predicted 6-month mortality risk using a prognostic tool called the Risk Evaluation for Support: Predictions for Elder-life in their Communities Tool (RESPECT) and vital status. The cohort included 247 377 adults, 11.9% of whom died within 6 months of an assessment. Among decedents, 50.6% of those with a RESPECT-estimated median survival of fewer than 3 months received at least 1 nonphysician palliative home care visit before death. This proportion declined to 38.7% and 29.5% among decedents with an estimated median survival between 3 and 6 months and between 6 and 12 months, respectively. Many older adults in Ontario do not receive any palliative home care before death. Prognostic tools such as RESPECT may improve recognition of reduced life expectancies and palliative care needs of individuals in their final years of life.

Adoption of evidence-based end-of-life and bereavement support to families in cancer care: A contextual analysis study with health professionals.

To investigate the level of adoption of evidence-based family engagement and support during end-of-life cancer care and subsequent bereavement and its contextual facilitators and barriers from health professionals' perspectives, and to explore differences between professional groups. Contextual analysis using an online cross-sectional survey. This study was conducted in four Swiss hospitals and three home care oncology and palliative care services. Non-parametric testing was used to investigate the level of adoption and differences between nurses, physicians, occupational- and physiotherapists and psychosocial professionals (chaplains, onco-psychologists and social workers). The STROBE checklist for cross-sectional studies was followed. The majority of the 111 participating health professionals were nurses. Adoption was statistically significantly higher during end-of-life care than bereavement, with nurses and physicians reporting higher levels than the other professional groups. Guidance on end-of-life family care was available in about half of the cases, in contrast to a quarter for bereavement care. Self-perceived knowledge, skills and attitudes were moderate to high, with nurses and physicians reporting higher levels than others, except for general skills in working with families. Organisational structures were experienced as rather supportive, with the psychosocial group appraising the organisational context as significantly less conducive to fully implementing end-of-life and bereavement care than others, particularly during the end-of-life phase. Evidence-based family engagement and support were better adopted during end-of-life care than bereavement. Overall, nurses and physicians felt better enabled to care for families compared to other professional groups. No patient or public contribution. https://osf.io/j4kfh. Implementation and quality improvement efforts should focus particularly on the bereavement phase and be tailored to professional groups. The findings show that evidence-based family engagement and support practices during end-of-life were rather well adopted in contrast to subsequent bereavement care, with nurses and physicians better enabled than other professionals to provide care. A better understanding of health professionals' contributions and roles in family care is important to build interprofessional capacity for evidence-based end-of-life and bereavement support. The STROBE checklist for reports of cross-sectional studies was followed (von Elm etal., 2007).

Predicting 60-Day Mortality in a Home-Care Service: Development of a New Inter-RAI 49-Frailty Index in Patients with Chronic Disease and without a Cancer Diagnosis

ObjectiveFrailty Index (FI) is used to define the level of frailty in various clinical settings. Fifteen- and 26-item FIs have been demonstrated to predict 1-year mortality and intensity of care in home care (HC) and palliative home care (PHC). The objective of this study was to develop a new FI to predict the 60-day risk of death or transition to a PHC service after the initiation of an HC service in patients with chronic disease and without a cancer diagnosis. DesignRetrospective cohort study. Setting and ParticipantsPatients 18 years and older followed in an HC service of a “Frailty Department-Local Palliative Care Network” from January 1, 2017, to October 31, 2021. MethodsA 49-item FI (FI-49) was developed selecting variables within the standardized international Residential Assessment Instrument assessments (interRAI-HC) and compared to existing FIs with 15 and 26 variables. ResultsA total of 2099 patients were included in the study with a median age of 80.0 years (IQR: 72.0-86.0) and a predominantly female population (62.4%). Among these patients, 8% died or were transferred to PHC within the 60-day follow-up. The FI-49 demonstrated a higher ability to predict 60-day mortality (C index 0.8165, 95% CI 0.7848-0.8481) compared to the 26- and 15-item FI. An FI-49 cutoff of 0.33 was also selected to provide clinicians with a more practical approach (C-index of 0.7044, 95% CI 0.6796-0.7292). Conclusion and ImplicationThe FI-49 is a good predictor of short-term mortality or transition to palliative care among older patients referred to an HC service. The automatic calculation of this tool could facilitate more appropriate care planning and the correct allocation of healthcare resources, especially considering the rapid ageing of the population.

Simultaneous care clinic: A mono-institutional experience at an ESMO designated center for palliative care.

254 Background: Early palliative care has been shown to improve patient (pts) and caregiver satisfaction, symptom control, quality of end-of-life care, cost and in some cases survival in pts with advanced cancer. In accordance with ASCO, ESMO and AIOM guidelines a Simultaneous Care Clinic (SCC) was set up at Veneto Institute of Oncology (IOV) since 2014. In the Castelfranco Branch of the IOV, SCC started in January 2022. Methods: Data from all consecutive outpatient patients seen in SCC were retrieved from a prospectively maintained database.Data collected included cancer type, status of disease, performance status (PS), ongoing oncological treatment, nutritional evaluation, social evaluation, psychological evaluation, activation of home territorial and/or palliative care services,use of other health services after a first visit and place of death. At the first visit pts were evaluated with validated tools for symptom identification, Edmonton Symptom Assessment (ESAS), distress thermometer, Malnutrition Universal Screening Toll (MUST). Results: From January to December 2022seventy-four pts were evaluated by a multidisciplinary team and re-evaluated 2 months later in terms of improvement or stabilization of symptoms, appropriateness of intervention and outcome. All patients had a metastatic disease and were in active oncological treatment. The median age was 73 y and the most prevalent disease type was gastrointestinal cancers (48%). The median time from first SCC visit to death was 3.8 months; 32 pts are still alive. At the first visit symptom management measures were adopted. The median score for the distress thermometer was 5 with higher prevalence of physical problem. A higher prevalence on 7-10 ESAS score (26% of the pts) was found for pain, fatigue and lack of appetite. At the second visit, an improvement was observed: the median score for the distress thermometer was 4 and ESAS score was 7-10 in 18% of the pts. At first SCC visit, patients deemed in need of home care services were 17 (23%) and for these a formal request for Home Care services activation was sent to the Local Health Territorial Unit (Distretto ULSS). Conclusions: The SCC multidisciplinary assessment represents an organizational model effective in granting a global management of needs with the aim of improving the therapeutic path for patients and their caregivers.

P08.11.A PREDICTIVE SOCIAL FACTORS ASSOCIATED TO PLACE OF DEATH IN MALIGNANT GLIOMAS

Abstract BACKGROUND Malignant gliomas (MG) are tumors affecting central nervous system (CNS) with a poor prognosis. Fast neurological decline (motor, cognitive and behavioural) causes high burden for patients and caregivers and requires specific setting of care (especially palliative care) helping patients to preserve their autonomy and assuring, in the end of life phase, the best care represented by dying at home with dignity that is considered in the literature an indicator of good quality of care in cancer patients. MATERIAL AND METHODS The home care program for MG utilized in our Institution is aimed to offer palliative and supportive care during all the trajectory of disease and to facilitate death at home. To identify possible factors related with place of death, we’ve retrospectively investigated social and health data to discover possible factors associated with dying at home in MG patients. Every patient and caregiver/family were analyzed for many factors including sex, work, family relation, presence or absence of caregiver/family, presence of children. RESULTS From January 2016 to December 2020, we’ve assisted at home 263 MG patients and collected complete data in 257 patients (6 patients was lost in follow-up). 174 (68%) of them were affected by Glioblastoma Multiforme (GBM) and 83 (32%) were affected by grade 3 anaplastic gliomas; 155 patients (61%) were male and 102 (39%) female. 137 patients (54%) died at home, 88 patients (34%) died in hospice and 32 patients (12%) died in hospital. Male caregivers assisted 178 MG patients of which 141 was male patients (79%); female caregivers assisted 79 MG patients of which 65 was female patients (82%) (p<0.001); presence of social network (family or other type) influenced positively place of death: MG patients who has social network died frequently at home respect on MG patients who didn’t have social network that died frequently in hospital or hospice (p<0.001). No differences were found between age, sex (patient and caregiver), presence of minor children, education level, work, marital status and place of death. CONCLUSION In this cohort of MG patients followed with a palliative home care service, place of death and dying with dignity is influenced by presence of social network and reliable caregiver. The evaluation social data in addition to clinical data is an important factor in order to plan timely the end of life phase and the decisions about possible place of death.

Comparison of home-based palliative care delivered by community health workers versus usual care: research protocol for a pilot randomized controlled trial

BackgroundResearch studies demonstrate that palliative care can improve patient outcomes such as quality of life, symptom burden and patient satisfaction with care (Gomes B, et al. Effectiveness and cost-effectiveness of home palliative care services for adults with advanced illness and their caregivers. Cochrane Database Syst Rev. 2013(6):CD00776) (World Health Organization. Palliative Care. Published 2020.). While 76% of patients who need palliative care live in limited-resource countries, access to high quality palliative services in these countries is minimal (Worldwide Hospice and Palliative Care Association and World Health Organization. Global Atlas of Palliative Care (2nd ed). 2020.). In 2014 the Worldwide Hospice Palliative Care Alliance, with strong endorsement by the WHO, released the Palliative Care Toolkit to provide a training and implementation toolkit for empowering community members to deliver palliative care in resource poor settings (Worldwide Hospice and Palliative Care Association and World Health Organization. Global Atlas of Palliative Care at the End of Life. Geneva, Switzerland 2014.). They encouraged researchers and public health practitioners to conduct rigorous evaluation of the toolkit in diverse settings and contexts. To address this need, we will conduct a pilot randomized controlled trial (RCT) to examine implementation and explore potential effect of an intervention based upon the Palliative Care Toolkit, as adapted and used by community health workers (CHWs) working with a cancer center in Kolkata, India to deliver home-based palliative care for rural patients.MethodsUtilizing a randomized controlled trial design, intervention patients (n = 45) receive home-based palliative services (Pal-Care) delivered by community health workers (CHWs), with comparison against a control group of patients (n = 45) who receive usual cancer-center-based palliative services. Primary outcome measures include evaluation of CHW training outcomes, roles and responsibilities of the CHWS and how they assist patients, trial recruitment, stakeholder perceptions of the intervention, and fidelity to study protocol. Secondary outcomes measure patient self-report of health-related quality of life, symptom burden, palliative needs and patient care experience, outcomes The RE-AIM framework guides our evaluation plan to measure the reach, effectiveness, adoption, implementation and maintenance of the Pal-Care intervention (Gaglio B, et al. The RE-AIM framework: a systematic review of use over time. Am J Public Health. 2013;103(6):e38?46.). Data will be analyzed in SAS. All measures will be evaluated overall and by patient age, gender and cancer type and by CHW caseload.DiscussionPal-Care is a RCT funded by the NCI to explore utilization of CHWs to deliver a home-based palliative care intervention built upon the WHO Palliative Care toolkit (PCT), as compared to a usual care control group. The long-term goal of this research is to develop an effective and sustainable model for delivering home-based palliative care for cancer patients in underserved areas.Trial registration (TRN)ClinicalTrials.gov ID# NCT04972630.

Elaboração de um protocolo de classificação de risco para pacientes oncológicos em Cuidados Paliativos Domiciliares

ABSTRACT Home-based Palliative Care services specialized in the treatment of cancer patients aim to identify and control physical, psychosocial, and spiritual symptoms at home. Some challenges encountered are the complexity of symptoms, reduced survival of patients with advanced cancer, and limitations of the health care system. To stratify the priority of care for patients with advanced cancer in home Palliative Care, a risk classification protocol was developed. This article is an experience report on the process of creating a risk classification protocol for patients with advanced cancer treated at a home Palliative Care service in Rio de Janeiro. The initial stage involved meetings of the home care team at an oncology hospital and structured searches in the literature. Afterwards, the clinical situations of more complex management at home were listed and named as warning signs and symptoms: pain, shortness of breath, nausea/ vomiting, bleeding, and acute mental confusion. An assessment and triage protocol was developed with five categories/colors to determine the priority of patient care. The developed triage system has easy applicability and requires a brief training of the health professional so that it can be used during home visits.

Death place and palliative outcome indicators in patients under palliative home care service: an observational study

BackgroundDying at home accompanied by loved-ones is regarded favorably and brings good luck in Taiwan. This study aimed to examine the relevant factors affecting whether an individual dies at home or not in a group of terminal patients receiving palliative home care service.MethodsThe patients who were admitted to a palliative home care service at a hospital-affiliated home health care agency were consecutively enrolled between March 1, 2021 and March 31, 2022. During the period of care, the instruments of the palliative care outcomes collaboration was used to assess patients in each home visit twice a week, including symptom assessment scale, palliative care problem severity score, Australia-modified Karnofsky performance status, resource utilization groups-activities of daily living, and palliative care phase.ResultsThere were 56 participants (53.6% female) with a median age of 73.0 years (interquartile range (IQR) 61.3–80.3 y/o), of whom 51 (91.1%) patients were diagnosed with cancer and 49 (96.1%) had metastasis. The number of home visits was 3.5 (IQR 2.0–5.0) and the average number of days under palliative home care service was 31 (IQR 16.3–51.5) before their death. After the end of the study, there was a significant deterioration of sleeping, appetite, and breathing problems in the home-death group, and appetite problems in the non-home death patients. However, physician-reported psychological/spiritual problems improved in the home-death group, and pain improved in the non-home death patients. Physical performance deteriorated in both groups, and more resource utilization of palliative care was needed. The 44 patients who died at home had greater cancer disease severity, fewer admissions, and the proportion of families desiring a home death for the patient was higher.ConclusionsAlthough the differences in palliative outcome indicators were minor between patients who died at home and those who died in the hospital, understanding the determinants and change of indicators after palliative care service at different death places may be helpful for improving the quality of end-of-life care.

Comparison of Symptom Severity and Progression in Advanced Cancer Patients Among Different Care Settings: A Secondary Analysis.

Most people in Japan wish to spend their final days at home, but the majority fail to do so; earlier studies indicated a more pronounced worsening of symptoms if treated at home. This study compared the prevalence of symptom worsening and explored associated factors between patients with advanced cancer receiving palliative care in palliative care units (PCUs) and at home. We conducted a secondary analysis of two multicenter, prospective cohort studies involving patients with advanced cancer receiving palliative care in PCUs or at home. One study was conducted at 23 PCUs (January to December 2017) and the other on 45 palliative home care services (July to December 2017) in Japan. Symptom changes were categorized as stable, improved, or worse. Of the 2998 registered patients, 2877 were analyzed. Among them, 1890 patients received palliative care in PCUs, and 987 at home. Patients receiving palliative care at home were more likely to have worsening of pain (17.1% vs. 3.8%; p < 0.001) and drowsiness (32.6% vs. 22.2%; p < 0.001) than those in PCUs. By multivariate logistic regression analysis, palliative care at home was significantly associated with worsening of the Palliative Prognostic Index dyspnea subscale in the unadjusted model (odds ratio, 1.42 [95% confidence interval, 1.08-1.88]; p = 0.014) but not for any symptoms in the adjusted model. After adjusting for patient background, the prevalence of symptom worsening was not different between patients with advanced cancer receiving palliative care at home and in PCUs.

Prolonged Grief Disorder and Symptoms of Anxiety and Depression among Bereaved Family Caregivers in the Context of Palliative Home Care

Background: This study aimed to investigate the prevalence and the psychological comorbidity of PGD among bereaved family caregivers of palliative care cancer patients. We also examined the discriminant validity of two simple and reliable tools in correctly categorized individuals with PGD. Methods: A cross-sectional study was conducted with 157 bereaved participants (77.1% females, mean age = 43.50 ± 14.04 years, mean time since the loss = 3.59 years) recruited from three palliative home care services. These participants completed the Prolonged Grief Scale (PG-13) and the Hospital Anxiety and Depression Scale (HADS). Results: The prevalence of PGD within the sample was 4.46% (i.e., = 7/157). Participants scored higher than the cut-off on the PG-13 and the HADS-D. Symptoms of PGD were positively correlated with depression levels. The ROC curve analysis showed that the HADS-D was outstanding in categorizing individuals with prolonged grief disorder from those without PGD. A HADS-D score of ≥7.5 was able to categorize participants with a sensitivity of 0.90 and a specificity of 0.73. Conclusions: Overall, these results highlight the relationship between grief and depression symptoms and their exceptional discriminant validity among correctly identified individuals with PGD.

End-of-life care for patients with cancer: Clinical, geographical, and sociocultural differences.

Timely, effective and personalized identification of the multidimensional needs in patients with advanced cancer are major goals of appropriate palliative care (PC) delivery. However, there is considerable variation in structures, processes, and patient demographics that might influence the intensity of end-of-life care. This study aims to characterize patterns in clinical and demographic characteristics at the inception point and their association with the intensity of care during the last month of life in advanced cancer patients assisted at home. Cancer patients entered in home PC during 2020 in Italy were considered. The association between home PC services during the last month of life (primary outcome) and demographic data, performance status (Karnofsky Performance Score [KPS]), symptoms, and therapies at the entry was explored in this retrospective study. Among 1,721 consecutive patients (919 in Centre-North and 802 in Centre-South Italy), patients from Centre-South were younger (p<0.001), had worse KPS (p<0.001), and shorter survival (p=0.010). Patient age was inversely associated with the number of total/physician/nurses services during the last month of life (p<0.001, p=0.001, and p=0.008, respectively). Patients with severe symptoms (asthenia, pain, and anxiety) at inception needed more PC services at the end of life (p=0.026, p=0.008, and p=0.038, respectively). The distribution of workload differed according to the geographical area, with higher number of PC services provided by physicians (p<0.001) in Centre-North and by nurses (p=0.002) in Centre-South. These findings highlight major disparity in access and nature of PC in a country with universal access to health services. Studies aimed at comparing PC models among different countries should pay attention to the local heterogeneity within each health-care system.

Cost-effectiveness analysis of palliative care of cancer patients in the end of life

Home palliative care services of terminal patients may associate home care preferences with desirable health outcomes. This study aimed to evaluate the cost-effectiveness of home palliative care of cancer patients in the last year of life in the public health subsector in a province of Argentina. A cost-effectiveness Markov model was developed from a social and the health funder's perspective in order to reflect the reality of home palliative care at the local level compared with usual care. Direct costs to the health system and indirect costs of unpaid informal care were estimated based on local information. Palliative care increased the likelihood of patients dying at home by 10.32% compared with usual care, with annual savings of USD 750 and USD 1,012 per patient, respectively, from both the social and the funder's perspective in the public health subsector in Río Negro. From both the social and financial perspective, the strategy to implement organized care services was more effective and lower-cost, measured by the percentage of patients who died at home. From a social perspective, the main cost inducer was the formal care provided by families, but from the funder's perspective, it refers to the salaries of the health team.

Quality of End-of-Life Care in Gastrointestinal Cancers: A 13-Year Population-Based Retrospective Analysis in Ontario, Canada

Population-based quality indicators of either aggressive or supportive care at end of life (EOL), especially when specific to a cancer type, help to inform quality improvement efforts. This is a population-based, retrospective cohort study of gastrointestinal (GI) cancer decedents in Ontario from 1 January 2006-31 December 2018, using administrative data. Quality indices included hospitalizations, emergency department (ED) use, intensive care unit admissions, receipt of chemotherapy, physician house call, and palliative home care in the last 14-30 days of life. Previously defined aggregate measures of both aggressive and supportive care at end of life were also used. In our population of 69,983 patients who died of a GI malignancy during the study period, the odds of experiencing aggressive care at EOL remained stable, while the odds of experiencing supportive care at EOL increased. Most of our population received palliative care in the last year of life (n = 65,076, 93.0%) and a palliative care home care service in the last 30 days of life (n = 45,327, 70.0%). A significant number of patients also experienced death in an acute care hospital bed (n = 28,721, 41.0%) or had a new hospitalisation in the last 30 days of life (n = 33,283, 51.4%). The majority of patients received palliative care in the last year of life, and a majority received a palliative care home service within the last 30 days of life. The odds of receiving supportive care at EOL have increased over time. Differences in care exist according to income, age, and rurality.

Health Care Utilization in the Last Year of Life in Parkinson Disease and Other Neurodegenerative Movement Disorders.

Neurodegenerative movement disorders are rising in prevalence and are associated with high health care utilization. Generally, health care resources are disproportionately expended in the last year of life. Health care utilization by those with neurodegenerative movement disorders in the last year of life is not well-understood. The goal of this study was to assess the utilization of acute care in the last year of life among individuals with neurodegenerative movement disorders and determine whether outpatient neurology or palliative care affected acute care utilization and place of death. We conducted a retrospective cross-sectional study including health system administrative data in Alberta, Canada, from 2011 to 2017. Administrative data were used to determine place of death and quantify emergency department (ED) visits, hospitalizations, intensive care unit admissions, and outpatient generalist and specialist visits. Diagnoses were classified by 10th revision of the International Classification of Diseases codes. Stata 16v was used for statistical analyses. Among 1439 individuals (60% male), Parkinson disease (n = 1226), progressive supranuclear palsy (n = 78), multiple system atrophy (n = 47), and Huntington disease (n = 58) were the most common diagnoses. The most frequent place of death was in hospital (45.9%), followed by long-term care (36.3%), home (7.9%), and residential hospice (4.0%). Most (64.2%) had >1 ED visit, and 14.4% had >3 emergency department visits. Fifty-five percent had >1 hospitalization, and 23.3% spent >30 days in hospital. Few (2.6%) were admitted to ICU. Only 37.2% and 8.8% accessed outpatient neurologist and specialist palliative care services, respectively. Multivariate logistic regression found the odds of dying at home was higher for those who received outpatient palliative consultation (OR, 2.49, 95% confidence interval [CI], 1.48-4.21, p < 0.001) and were with a longer duration of home care support (OR, 1.0007, 95% CI, 1.0004-1.0009, p < 0.001). There are high rates of in-hospital death and acute care utilization in the year before death among those with neurodegenerative movement disorders. Most did not access specialist palliative or neurologic care in the last year of life. Outpatient palliative care and home care services were associated with increased odds of dying at home. Our results indicate the need for further research into the causes, costs, and potential modifiers to inform public health planning.

Estimation of time cost of anti-cancer drugs approved based on comparisons to best supportive care: A cross sectional analysis

BackgroundFinancial costs from cancer treatment are increasingly recognized, but what has historically been underrecognized is the time cost of therapy. We sought to estimate the time burden of anti-cancer drugs approved based on comparisons to best supportive care (BSC), with the assumption that without this drug, a patient could have been treated with observation, home palliative care or hospice services, with minimal time seeking medical care. MethodsWe searched all FDA approvals (2009 - March 2022) for randomized trials that used BSC as a treatment option for an anti-tumor drug in the metastatic setting and abstracted data on treatment related activities. We then estimated time spent on these activities using previously calculated times. ResultsOf the 13 drugs tested against BSC, nine studies demonstrated an improvement in median OS (median 2.1 months). The median monthly time spent for patients in the intervention arm of BSC trials was 15.8 h. ConclusionTime is a valuable resource for people who have cancer, but especially for patients who may have few to no remaining treatment options, and yet, we found that patients can spend up to 16 h in anti-cancer drug related activities per month. Policy summaryBecause survival outcomes are variable for patients being treated in later lines of therapy, time resources are a valuable consideration in the treatment plan.

The Implementation of Palliative Home Care in Southeast Asian Countries: An Integrative Review

In Asia where family caregiving is part of the culture, palliative home care becomes the most suitable service to keep patients close to their family and to reduce costs. There is a wide variety of palliative home care services due to different cultures and levels of involvement of the family. This review aims to explore the implementation of palliative home care in East and Southeast Asian countries. The articles reviewed in this study were obtained from 3 electronic databases: EbscoHost, PubMed, and Scopus. Journal articles that discussed palliative home care for patients with cancer in East and Southeast Asia countries were included. Review papers were excluded. Seven studies were used in the current review. In general, there are 6 services provided for palliative home care in this region, which are daily activity living care, planning and preparation for palliative home care, education and counseling, patients’ follow-up, symptom management, and direct care for family. Most of the programs involve family caregivers during the treatment. The palliative home care team consists of at least a doctor and a nurse. Symptom management is the most common service and direct care for family is the least offered palliative home care service in this region. Alleviating symptoms is one of the targets in palliative care, therefore involving family in symptom management for palliative home care is fundamental. Although caregiving is part of the culture, family members need to be supported to maintain their quality of life.

Possible age-related differences in healthcare professionals’ perspectives on younger and older patients’ autonomy and decision-making in the context of sedation in specialised palliative care: exploratory secondary qualitative content and linguistic conversation analysis of interviews with healthcare professionals

BackgroundChronic illnesses and multi-morbidity can threaten competence and independence, particularly in old age. Autonomy becomes increasingly important in the context of sedation, as in this case medication leads to (further) changes of consciousness. The study aimed to identify possible age-related differences in the perspectives of healthcare professionals on patients’ autonomy, in the context of sedation in specialised palliative care.MethodSecondary analysis of interviews with healthcare professionals, analysed by qualitative content and linguistic conversation analysis. The interviews analysed span 51 healthcare professionals in specialised palliative care across 17 centres (adult inpatient and specialist palliative home care services) in Germany.ResultsThe study shows that the perspectives of healthcare professionals on patients’ autonomy differs according to the age of the patient in the context of sedation in specialised palliative care. The different perspectives may lead to different ways of treating the patients, for example a greater space of autonomy and decision-making for younger patients.ConclusionIn particular, measures that may restrict consciousness (e.g. sedation) and thus influence patients’ ability to fully exercise their autonomy and fully participate in decision-making require special attention by healthcare professionals with respect to possible influences on treatment, such as different perceptions by healthcare professionals based on the patient’s age or age-related stereotypes.Trial registrationThe study “SedPall” is registered in the German Clinical Trials Register (ID: DRKS00015047).

Integrating home palliative care in oncology: a qualitative study to identify barriers and facilitators.

Access to and close links with home palliative care services are essential to ensure seamless transitions between care settings in anticancer treatment. However, the timing of referrals to home palliative care services is often delayed. We explored barriers to and facilitators of improving the integration of home palliative care and medical oncology experienced by healthcare professionals in Japan. This qualitative study involved semi-structured focus groups and individual interviews conducted via a web conferencing system. Participants were 27 healthcare professionals, including oncologists, palliative care physicians, home palliative care physicians, nurses from both cancer hospitals and home visit nursing agencies, and social workers from cancer hospitals. Barriers and facilitators were grouped into three themes: (1) perspectives and ideas on integrating oncology and home palliative care; (2) barriers; and (3) facilitators. Barriers included seven sub-themes: lack of referral criteria for home palliative care services; financial elements related to home palliative care services; patients' lack of understanding of the illness trajectory; collusion in doctor-patient communication about imminent death; frequent visits to cancer hospitals; variations in home palliative care services; and problems in providing treatment and care at home. Facilitators included two sub-themes: relationships between oncologists and home palliative care physicians, and cancer hospital staff experience/knowledge of home palliative care. This study identified barriers and facilitators to integrating home palliative care and oncology. Some barriers experienced by professionals were comparable with barriers to early integration of palliative care into oncology.

Nationwide Inequities in Nursing Home Palliative Care Services

Inequities exist in nursing home (NH) quality of care for racial/ethnic minorities, but the extent of palliative care (PC) disparities in unknown. We used cross-sectional national survey data (2017-18) from 869 NHs to measure PC services (summative score: 0-100). Survey linked to Minimum Data Set and Area Health Resources Files. Descriptive statistics and NH-level, multivariable regressions examined regional differences in NH PC services by varying concentrations of Black and Latino residents. Substantial regional differences were recorded in mean PC score and by concentration. Mean PC services were highest in the Northeast and lowest in the South: Northeast (× ®=50.45, SE=1.50); West (× ®=49.96, SE=1.74); Midwest (× ®=48.18, SE=1.17); South (× ®=44.71, SE=1.30). After adjusting for urbanicity and county level poverty, NHs in the Northeast and West with increasing concentrations of Black and Hispanic residents offered significantly fewer PC services. Overall, NHs serving predominantly serving minority populations offer fewer PC services.