Routine Palliative Care Research Articles

Meaningful patient and public engagement in dissemination-embedding co-production in dementia research.

Patient and Public Involvement and Engagement (PPIE) is still underutilised in both dementia research and corresponding dissemination activities. To describe the methods, format, and lessons learned in co-creating and co-producing a dissemination strategy for a research project focused on establishing patient-centred outcome measures into routine palliative community care for persons living with dementia (PLWD) and their informal carers. A participatory, hybrid-format workshop was conducted to co-create the dissemination strategy with a PPIE group. A video presentation of findings and a list of prompts shared prior to the workshop were used to elicit views on dissemination strategies and knowledge translation. The workshop was followed up with a survey to consolidate the dissemination strategy. Workshop minutes and survey responses were analysed using qualitative thematic analysis. 22 participants from our diverse PPIE group attended the workshop. Two major themes emerged: (a) Knowledge translation: building bridges between research and practise, and (b) Collaboration and dissemination: everyone's voice is needed. Participants suggested critical changes to dissemination methods and materials. Successful knowledge translation depends on a strong evidence base. For this, materials need to be tailored to specific audiences. Everyone's voice needs to be integrated through co-production in dissemination activities by PPIE members to influence societal change. Tailored dissemination activities within a dissemination strategy were co-created spanning all phases of the research cycle. Informing and educating the public and policymakers about the needs of PLWD relies on disseminating and fostering knowledge translation throughout all phases of the research cycle.

Optimizing the Dosing Regimen During Rotation From Subcutaneous to Transdermal Administration of Fentanyl

ContextSubcutaneous (SC) administration of fentanyl allows for rapid dose titration to treat urgent cancer-related pain. After establishing the optimal fentanyl dose, patients typically rotate towards transdermal (TD) fentanyl patches. Continuing the SC fentanyl up to 12h after application of the patch led to elevated fentanyl concentrations and fentanyl-related toxicities. Based on these findings, and simulations using a pharmacokinetic (PK) model, SC fentanyl administration was discontinued immediately following the application of the patch. ObjectivesTo validate the fentanyl rotation schedule by assessing the PK equivalence in fentanyl exposure before and after rotation. MethodsPK samples and clinical data were prospectively collected from 12 hours prior to rotation until 12 hours after rotation in patients with cancer-related pain undergoing fentanyl rotation. ResultsBetween December 2021 and September 2023, 29 evaluable patients were enrolled in the study. The 90% confidence interval (CI) of the geometric mean ratio between the post- over pre-rotation area under the curve (AUC) fell within the prespecified 0.8–1.25 equivalence interval (90% CI 1.05–1.16). Patient-reported intensity of both nausea (P = 0.047) and transpiration (P = 0.034) decreased post-rotation. Pain intensity and other adverse events did not differ significantly pre and post-rotation. One patient needed adjustment of opioid therapy 40 hours after rotation due to fentanyl-related toxicities. ConclusionThe updated rotation scheme, implying a 1:1 dose conversion and discontinuation of SC fentanyl directly after rotation, resulted in equivalent fentanyl exposure pre and post-rotation. Moreover, the dosing regimen showed to be safe and efficacious during rotation. The new dosing regimen when rotating from SC to TD fentanyl can be effectively and safely implemented in routine palliative care.

Provision of palliative care for people with chronic obstructive pulmonary disease: a narrative review.

Chronic obstructive pulmonary disease (COPD) is characterized by persistent and progressive airflow restriction and is the third leading cause of death and disability, globally. People with severe COPD generally experience long-term functional decline punctuated by periods of acute exacerbation. Symptom burden can be severe and debilitating, and typically includes breathlessness, cough, fatigue, pain, anxiety, depression, and overall reduced quality of life. Understanding current palliative care needs and provisions in this group is an essential step to expanding access in future. A narrative review of specialist and generalist (primary) palliative care provisions for people with COPD, with an emphasis on breathlessness symptom management. This paper aims to examine the current landscape of palliative care provision and highlight barriers and facilitators to palliative care access for people with severe COPD. People living with severe COPD, as well as the people who care for them, are routinely under-serviced in best-practice end-of-life care, despite having symptom burden that is comparable to that of people with advanced cancer. Barriers to palliative care in this group include lack of specialist palliative care resources, uncertainty surrounding prognostication, and poor recognition of need from both patients and clinicians. Routine early palliative care involvement, including integration of specialist palliative care into respiratory services and upskilling of other healthcare providers to adopt palliative care principals within usual care (primary palliative care), have been shown to improve outcomes indicative of high-quality end-of-life care in this group, including symptom control, place of death, and legal preparations. Ongoing integration of specialist palliative care and professional education for generalist and non-palliative care specialist healthcare providers in the recognition and management of unmet palliative care needs is required to increase capacity beyond traditional specialist palliative care models. Despite high level of symptom burden, many people with COPD miss out on palliative care. Expanding capacity of traditional specialist palliative care by upskilling generalist healthcare providers and integrating specialist palliative care into existing respiratory services is necessary to improve access for people with COPD.

“Let’s put it this way: you can’t really live without it” - digital technologies in routine palliative care delivery: an explorative qualitative study with patients and their family caregivers in Germany

BackgroundDespite ongoing efforts to integrate palliative care into the German healthcare system, challenges persist, particularly in areas where infrastructure does not fully support digital technologies (DT). The increasing importance of digital technology (DT) in palliative care delivery presents both opportunities and challenges.ObjectiveThis study aimed to explore the perspectives and preferences of palliative care patients and their family caregivers regarding the use of DT in care delivery.MethodsAn exploratory qualitative study was conducted using semi-structured interviews with palliative care patients and their family caregivers across various settings. Participants were selected through gatekeeper-supported purposive sampling. Interviews were analysed using structured qualitative content analysis.ResultsNineteen interviews were conducted.Three themes emerged: (1) Application of DTs in palliative care; (2) Potential of DTs; (3) Barriers to the use of DTs. Key findings highlighted the preference for real-time communication using DTs that participants are familiar with. Participants reported limited perceived value for digital transformation in the presence of in-person care. The study identified requirements for DT development and use in palliative care, including the need for direct and immediate functionality, efficiency in healthcare professional (HCP) work, and continuous access to services.ConclusionThe findings highlight a demonstrate the importance of familiarity with DTs and real-time access for patients and their families. While DT can enhance palliative care efficiency and accessibility, its integration must complement, not replace, in-person interaction in palliative care. As DTs continue to grow in scope and use in palliative care, maintaining continued user engagement is essential to optimise their adoption and ensure they benefit patients and their caregivers.

Can systematic dental examinations or treatments in addition to routine multidisciplinary treatment in a palliative care unit (PCU) improve the quality of life (QoL) and symptom burden (SB) of patients (Pt) receiving palliative care (PC)?

e23163 Background: Pt with advanced cancer who require PC often experience not only common symptoms such as pain, shortness of breath, or nausea, but also oral health and dental problems. In many PC teams, and even in dedicated PCUs, the inclusion of dentists in the Pt care team is rare, resulting in a lack of routine dental screening or treatment. Objectives:To investigate the extent to which Pt admitted to a PCU suffer from oral health or dental problems and to explore the impact of incorporating dentists into inpatient PC, with a focus on improving QoL and reducing SB. Methods: In this monocentric study, data were collected in one PCU over a period of eight months. At admission, T0, Pt underwent both a dental examination and interviews using established questionnaires, the EORTC QLQ-C30 (core, general) and OH 15 (oral health). One week later, at T1, Pt underwent a follow-up examination and interview. The QLQ-C30 is a widely accepted instrument developed to assess health-related QoL in cancer Pt. Results: A total of n = 103 Pt (48.5% women) were enrolled. The median time since the last dental visit was 1 year. The dental status at T0 was worse (Table 1). At T1, statistically and clinically significant changes in oral QoL and SB were observed. Notable changes were observed in OH-QoL score (mean 60.60 vs. 88.40, p < 0.001), sticky saliva (mean 38.10 vs. 11.28, p < 0.001), sensitivity to food and drink (mean 35.25 vs. 8.16, p < 0.001), sore mouth (mean 23.87 vs. 4.98, p > 0.001), and poorly fitting dentures (mean 38.63 vs. 8.07, p < 0.001). Improvements in xerostomia, candidiasis and mucositis were also observed. A confidential survey was administered to both Pt and palliative care staff to assess their satisfaction with the addition of systematic dental care to routine multidisciplinary PC. 97% of respondents indicated a high level of satisfaction with this treatment program. Conclusions: The study underscores the powerful contribution of integrating a dentist into the PC, e.g. in a PCU, resulting in a notable reduction in oral symptom burden. This contributes to improved care status, alleviation of distressing symptoms and ultimately an improvement in QoL. The results strongly support the consideration of dental support (e.g. routine dental screening) as an integral part of PC. [Table: see text]

Attitude of nurses towards palliative care and its associated factors in Ethiopia, systematic review and meta-analysis

IntroductionPalliative care significantly improves the distressing symptoms of patients, especially those with cancer, heart disease, renal disease, and liver disease. The need for palliative care is increasing worldwide due to the growing burden of chronic disease. Nurses with an unfavorable attitude towards palliative care cannot skillfully assess the patient’s needs, do not communicate effectively, and do not address the patient’s problems adequately. Therefore, this study was aimed to assess the nurse’s level of attitude towards palliative care in Ethiopia.MethodsSeveral databases were searched to find available articles. Microsoft Excel was used to extract and sort the data before it was exported to STATA/MP 17.0 for analysis. A weighted inverse variance random-effects model with a 95% confidence interval was employed to pool the data. Egger’s test and Cochrane I2 statistics were used to assess heterogeneity and publication bias, respectively. Subgroup analysis was carried out to identify the source of heterogeneity. A log-odds ratio was employed to show the relationship between nurses’ level of attitude towards palliative care and its related factors. P-value less than 0.05 was considered statistically significant.ResultIn Ethiopia, the pooled prevalence of favorable attitudes of nurses towards palliative care was 66.13% (95% CI: 54.00–78.27). The highest percentage of favorable attitudes towards palliative care among nurses was found in research studies done in Addis Ababa (80.31%; 95% CI: 72.00–88.63). Training on palliative care was significantly associated with the level of a nurse’s attitude towards palliative care. Therefore, nurses who received palliative care training had a 2.5 times higher chance of having a favorable attitude towards palliative care than nurses who did not receive training on palliative care (AOR = 2.55; 95% CI: 2.28–2.82).ConclusionOne-third of nurses had unfavorable attitude towards palliative care. Nurses who took palliative care training had a more favorable attitude than nurses who did not take palliative care training. Routine palliative care training is needed for nurses to improve their level of attitude towards palliative care.

Abstract C001: A pilot study of palliadelic treatment with psilocybin to reduce psychological distress and improve quality of life in patients with advanced pancreatic adenocarcinoma

Abstract Background: Psychological distress is a common reaction to a cancer diagnosis and its treatment. Distress impacts quality of life, adherence to treatment, decision making and survival. Patients with pancreatic adenocarcinoma (PDAC) experience exceptionally high rates of psychological distress, most commonly depression, anxiety and suicidality. Psilocybin, a serotonergic psychedelic which is the active component in “magic mushrooms,” is a promising treatment for several mental health disorders. Prior studies in patients with cancer have combined a single dose of psilocybin with preparation and integration counseling and have shown significant, rapid and sustained improvement in depression, anxiety and quality of life. These studies have primarily been conducted in psychiatry or neuroscience clinics in heterogenous groups of patients, many of whom had completed cancer treatment. This study will evaluate the feasibility and safety of psilocybin-assisted therapy delivered in the outpatient palliative care clinic in patients with advanced PDAC who are receiving chemotherapy. Methods: This is a single center, open label pilot study of a psilocybin-assisted therapy integrated with palliative care in patients with advanced PDAC. The primary endpoints are the feasibility and safety of this strategy when integrated into routine palliative care. Secondary endpoints include short term changes in depression, anxiety and demoralization and changes in neuronal activity by functional MRI (fMRI). After 2-4 outpatient preparation sessions with a palliative medicine physician (PMP), the subject will take psilocybin (25mg capsule) at an individual session supported by a PMP and a trained mental health professional. Up to 3 integration sessions with a PMP will follow. Patient-reported measures of psychological distress and quality of life will be assessed at baseline, after the psilocybin dose and periodically during follow-up. Neuronal changes will be measured using fMRI before and after the psilocybin dose. Eligible patients are adults (ECOG 0-3) with advanced PDAC with adequate organ function. Patients with psychiatric conditions which preclude safe cessation of psychotropic drugs or requires hospitalization, a personal or family history of schizophrenia, psychotic disorder or bipolar disorder, who have a high risk of suicide or have serious or uncontrolled hypertension or cardiovascular disease are ineligible. Given the exploratory nature of the study, a formal statistical assessment of the sample size was not conducted. Twelve evaluable subjects will provide sufficient power to detect large effect sizes (Cohen’s d1.0) in the secondary endpoints. Wilcoxon signed rank test will determine the reduction in distress scores before and after the psilocybin session. Enrollment began in June 2023; two subjects have enrolled. The study is funded by the Jim Young Pancreatic Cancer Research Memorial Fund. Psilocybin is provided by Usona. ClinicalTrials.gov Identifier: NCT05220046 Citation Format: Kelsey A. Klute, Lou Lukas, Soonjo Hwang, Yeongjin Gwon, Mridula Krishnan, Jean Grem, Sunil Hingorani, Jody Koenig Kellas. A pilot study of palliadelic treatment with psilocybin to reduce psychological distress and improve quality of life in patients with advanced pancreatic adenocarcinoma [abstract]. In: Proceedings of the AACR Special Conference in Cancer Research: Pancreatic Cancer; 2023 Sep 27-30; Boston, Massachusetts. Philadelphia (PA): AACR; Cancer Res 2024;84(2 Suppl):Abstract nr C001.

Should Urine Drug Screen be Done Universally or Selectively in Palliative Care Patients on Opioids?

Urine drug screen (UDS) is a useful test conducted in patients receiving opioids for chronic pain to aid in validating patient adherence to opioid treatment and to detect any nonmedical opioid use (NMOU). One controversial topic regarding its use in palliative care is whether to conduct the test universally and randomly in all patients who are receiving opioids for chronic pain irrespective of their level of risk for NMOU, or to conduct the test selectively in only those with a high risk for engaging in NMOU behaviors. In this "Controversies in Palliative Care" article, 3 expert clinicians independently answer this question. Specifically, each expert provides a synopsis of the key studies that inform their thought processes, share practical advice on their clinical approach, and highlight the opportunities for future research. They all agreed that UDS has some utility in routine palliative care practice but acknowledged the insufficient existing evidence supporting its efficacy. They also underscored the need to improve clinician proficiency in UDS interpretation to enhance its utility. Two experts endorsed random UDS in all patients receiving opioids regardless of their risk profile while the other expert recommended targeted UDS until there is more clinical evidence to support universal, random testing. Use of more methodologically robust study designs in UDS research, examination of the cost-effectiveness of UDS tests, development of innovative programs to manage NMOU behaviors, and investigation of the impact of improved clinician proficiency in UDS interpretation on clinical outcomes, were important areas of future research that the experts identified.

Effectivity of Palliative Care Bundle on Advanced Gallbladder Cancer: A Randomised Controlled Trial.

The main aim of this study was to develop, test, and compare palliative care bundles to improve functional recovery, resilience, and quality of life among advanced gallbladder cancer patient with their routine palliative care. This study was to test a palliative care bundle, a single-center, and two-arm randomised controlled trial done on a total of 116 participants (58 in each arm) from July 2019 to December 2021 at All India Institute of Medical Sciences, Rishikesh. By the end of 4th month, the recruitment rate was 96.7%, retention rate acceptance rate was 95%, and adherence rate was 85%. The palliative care bundle showed that a significant difference in trial outcome index score (P = 0.014*) indicates the effectiveness of the palliative care bundle related to improvement in physical mobility, resilience, and quality of life of patients and reduced caregiver burden. Reported barriers faced by participants were physical exhaustion (65%), psychological factors (25%), social factors (15%) and unfamiliar surroundings (5%). Caregivers reported barriers that their job (40%), physical fatigue related to the care of their patient (40%), their education (10%), and lack of support for their other family members (10%) were some reasons forcing them not to practice palliative care bundle. The palliative care bundle did not interfere with the palliative treatment plan of any patients and significantly improved physical mobility, resilience, quality of life of patients, and reduced caregiver burden. Hence, a palliative care bundle can be considered in the palliative care of advanced cancer patients during their palliative treatment to provide holistic care.

Palliative Care in Adolescents and Young Adults With Cancer.

Palliative care (PC) aims to improve quality of life (QOL) for patients with serious illness and their families by recognizing and alleviating the physical, emotional, social, existential, and spiritual suffering of patients and their communities. Because adolescents and young adults (AYAs, age 15-39 years) with cancer commonly report distress across all these domains and because that distress translates to their QOL during and after their cancers, PC is particularly relevant for this population. Here, we review the evidence for PC among AYAs with cancer, including its rationale, gaps, opportunities, and implications for care delivery. For example, nearly 90% of AYAs with cancer report distressing symptoms during their treatment, those who survive report ongoing unmet psychosocial and physical health needs, and those who die from their cancers are highly likely to receive medically intense care that is discordant with their goals and values. AYA communication and decision making can be challenging because of ethical and developmental considerations regarding the patient's autonomy and competing priorities of patients and caregivers. PC interventions (including primary PC delivered by oncologists, routine PC subspecialty care, symptom tracking, advance care planning, and psychosocial programs promoting AYA resilience) are all associated with improved patient-centered outcomes. However, PC is inconsistently integrated into AYA oncology care, and access to PC programs is not equitable; marginalized groups continue to experience poorer outcomes. Ongoing and future research and clinical initiatives must continue to bridge these gaps. Improving the QOL of AYAs with cancer is a shared goal of the larger clinical oncology community, and including PC in AYA cancer care delivery can help attain that goal.

Palliative care at any stage of amyotrophic lateral sclerosis: a prospective feasibility study.

Many patients with amyotrophic lateral sclerosis (ALS) receive palliative care (PC) very late or not at all. The impact of PC on patients with ALS and caregivers has not been quantified. Study goals included (1) measuring the impact of early PC on quality of life and mood of patients/caregivers and (2) describing patient/caregiver satisfaction with PC. The study was a non-randomized, prospective feasibility study of patients with ALS being treated at The Ottawa Hospital ALS Clinic and their caregivers. Exclusion criteria were age < 18 years, inability to complete questionnaires, and prior receipt of PC. The ALS Specific Quality of Life-Revised (ALSSQOL-R) questionnaire (patients only) and Hospital Anxiety and Depression Scale (HADS) were completed at regular intervals for up to 2 years. Patients accepting a PC consultation completed a post-PC satisfaction survey. Primary outcome measures included ALSSQOL-R and HADS scores compared before and after PC consultation, and between groups receiving and not receiving a PC consultation. Secondary outcome measures included responses on the post-PC satisfaction survey (1 = strongly disagree, 5 = strongly agree). 39 patients with ALS (age 66 ± 10 years, median time from diagnosis = 6 months) and 22 caregivers were enrolled. 32 patients had a PC consultation (30 were virtual). Patients and caregivers agreed with statements that the PC consult was helpful (mean ± SD = 4.54 ± 0.60, range = 3-5) and they would recommend PC to others with ALS (4.59 ± 0.59, range = 3-5). Participants disagreed with statements that the consult would have been better later in disease course (1.87 ± 0.80, range = 1-4) and that it took too much time/energy (1.44 ± 0.85, range = 1-4). Average ALSSQOL-R scores worsened significantly over time. HADS and ALSSQOL-R scores did not significantly differ between groups receiving and not receiving PC. Patients with ALS and their caregivers found virtual PC consultations beneficial irrespective of disease duration or severity. Offering routine PC to all patients with ALS is feasible and should be considered as part of standard care. https://clinicaltrials.gov/ct2/show/NCT04257760, identifier NCT04257760.

Associations between symptoms with healthcare utilization and death in advanced cancer patients

IntroductionThere is limited data about assessments that are associated with increased utilization of medical services among advanced oncology patients (AOPs). We aimed to identify factors related to healthcare utilization and death in AOP.MethodsAOPs at a comprehensive cancer center were enrolled in a Center for Medicare and Medicaid Innovation program. Participants completed the Edmonton Symptom Assessment Scale (ESAS) and the Functional Assessment of Cancer Therapy–General (FACT-G) scale. We examined factors associated with palliative care (PC), acute care (AC), emergency room (ER), hospital admissions (HA), and death.ResultsIn all, 817 AOPs were included in these analyses with a median age of 69. They were generally female (58.7%), white (61.4%), stage IV (51.6%), and represented common cancers (31.5% GI, 25.2% thoracic, 14.3% gynecologic). ESAS pain, anxiety, and total score were related to more PC visits (B=0.31, 95% CI [0.21, 0.40], p<0.001; B=0.24 [0.12, 0.36], p<0.001; and B=0.038 [0.02, 0.06], p=0.001, respectively). Total FACT-G score and physical subscale were related to total PC visits (B=−0.021 [−0.037, −0.006], p=0.008 and B=−0.181 [−0.246, −0.117], p<0.001, respectively). Lower FACT-G social subscale scores were related to more ER visits (B=−0.03 [−0.53, −0.004], p=0.024), while increased tiredness was associated with fewer AC visits (B=−0.039 [−0.073, −0.006], p=0.023). Higher total ESAS scores were related to death within 30 days (OR=0.87 [0.76, 0.98], p=0.027).ConclusionsThe ESAS and FACT-G assessments were linked to PC and AC visits and death. These assessments may be useful for identifying AOPs that would benefit from routine PC.

Digital technologies in routine palliative care delivery: an exploratory qualitative study with health care professionals in Germany

ObjectiveTo explore health care professionals’ (HCPs) perspectives, experiences and preferences towards digital technology use in routine palliative care delivery.MethodsHCPs (n = 19) purposively selected from a sample of settings that reflect routine palliative care delivery (i.e. specialized outpatient palliative care, inpatient palliative care, inpatient hospice care in both rural and urban areas of the German states of Brandenburg and Berlin) participated in an explorative, qualitative study using semi-structured interviews. Interview data were analyzed using structured qualitative content analysis.ResultsDigital technologies are widely used in routine palliative care and are well accepted by HCPs. Central functions of digital technologies as experienced in palliative care are coordination of work processes, patient-centered care, and communication. Especially in outpatient care, they facilitate overcoming spatial and temporal distances. HCPs attribute various benefits to digital technologies that contribute to better coordinated, faster, more responsive, and overall more effective palliative care. Simultaneously, participants preferred technology as an enhancement not replacement of care delivery. HCPs fear that digital technologies, if overused, will contribute to dehumanization and thus significantly reduce the quality of palliative care.ConclusionDigital technology is already an essential part of routine palliative care delivery. While generally perceived as useful by HCPs, digital technologies are considered as having limitations and carrying risks. Hence, their use and consequences must be carefully considered, as they should discreetly complement but not replace human interaction in palliative care delivery.

Early integration of palliative care into oncological care: a focus on patient-important outcomes.

Globally, cancer remains one of the leading causes of mortality. Palliative care is designed to meet a range of cancer patients' priority issues, including the management of pain and other cancer-associated symptoms. Routine palliative care envisages the provision of not just medical therapy, but also psychological support, social support and spiritual assistance. What constitutes the best model for palliative care remains a matter of debate. This review was undertaken with the aim to discuss different aspects of early integration of palliative care into oncological care, with a focus on patient-important outcomes. A comprehensive search of publications was conducted with a focus on integrative palliative care for incurable cancer patients. For this purpose, the following databases and search engines were used: Scopus, PubMed, Cochrane Library, Research Gate, Google Scholar, eLIBRARY and Cyberleninka. A comprehensive approach with early integration of different medical services appears to be the most promising. Integrative palliative care is best provided via specialised interdisciplinary teams, given that all members maintain systemic communications and regularly exchange information. This model ensures that timely and adequate interventions are provided to address the needs of patients. Further research is needed to pinpoint the most optimal strategies to deliver palliative care and make it as tailored to the patient's demands as possible.

Measuring Palliative Care-Related Knowledge, Attitudes, and Confidence in Home Health Care Clinicians, Patients, and Caregivers: A Systematic Review.

Background: Integrating palliative care services in the home health care (HHC) setting is an important strategy to provide care for seriously ill adults and improve symptom burden, quality of life, and caregiver burden. Routine palliative care in HHC is only possible if clinicians who provide this care are prepared and patients and caregivers are well equipped with the knowledge to receive this care. A key first step in integrating palliative care services within HHC is to measure preparedness of clinicians and readiness of patients and caregivers to receive it. Objective: The objective of this systematic review was to review existing literature related to the measurement of palliative care-related knowledge, attitudes, and confidence among HHC clinicians, patients, and caregivers. Methods: We searched PubMed, CINAHL, Web of Science, and Cochrane for relevant articles between 2000 and 2021. Articles were included in the final analysis if they (1) reported specifically on palliative care knowledge, attitudes, or confidence, (2) presented measurement tools, instruments, scales, or questionnaires, (3) were conducted in the HHC setting, (4) and included HHC clinicians, patients, or caregivers. Results: Seventeen articles were included. While knowledge, attitudes, and confidence have been studied in HHC clinicians, patients, and caregivers, results varied significantly across countries and health care systems. No study captured knowledge, attitudes, and confidence of the full HHC workforce; notably, home health aides were not included in the studies. Conclusion: Existing instruments did not comprehensively contain elements of the eight domains of palliative care outlined by the National Consensus Project (NCP) for Quality Palliative Care. A comprehensive psychometrically tested instrument to measure palliative care-related knowledge, attitudes, and confidence in the HHC setting is needed.

Integrated Medical Cannabis Consultations in a Palliative Care Program: Policies, Procedures, and Progress after Six Years of Practice.

Introduction: Our academic ambulatory palliative care program has counseled, monitored, and certified patients for cannabis as part of routine palliative care practice for six years. Objective: We describe the population certified for cannabis and policies, procedures, and medicolegal challenges in our palliative care clinic. Methods: We performed a retrospective review of patients, qualifying diagnoses for cannabis certification, reasons for referral, and number of annual certifications. Results: Between 2015 and 2021, we certified 1711 patients for cannabis. The most common indications were cancer (64%), pain (24%), and neuropathy (9%). Other three months in 2021, 28% of new referrals to our practice were certified for cannabis and 15% of patients were referred explicitly for cannabis certification. Conclusion: Despite legal and practical challenges to implementing a medical cannabis program, our palliative care program has fully integrated cannabis as part of our standard outpatient clinical practice.

Predicting Anxiety in Routine Palliative Care Using Bayesian-Inspired Association Rule Mining.

We propose a novel knowledge extraction method based on Bayesian-inspired association rule mining to classify anxiety in heterogeneous, routinely collected data from 9,924 palliative patients. The method extracts association rules mined using lift and local support as selection criteria. The extracted rules are used to assess the maximum evidence supporting and rejecting anxiety for each patient in the test set. We evaluated the predictive accuracy by calculating the area under the receiver operating characteristic curve (AUC). The evaluation produced an AUC of 0.89 and a set of 55 atomic rules with one item in the premise and the conclusion, respectively. The selected rules include variables like pain, nausea, and various medications. Our method outperforms the previous state of the art (AUC = 0.72). We analyzed the relevance and novelty of the mined rules. Palliative experts were asked about the correlation between variables in the data set and anxiety. By comparing expert answers with the retrieved rules, we grouped rules into expected and unexpected ones and found several rules for which experts' opinions and the data-backed rules differ, most notably with the patients' sex. The proposed method offers a novel way to predict anxiety in palliative settings using routinely collected data with an explainable and effective model based on Bayesian-inspired association rule mining. The extracted rules give further insight into potential knowledge gaps in the palliative care field.

Is There a Role for Routine Specialty Palliative Care Consultation in Cancer Patients Undergoing Curative-Intent Surgery?

Is There a Role for Routine Specialty Palliative Care Consultation in Cancer Patients Undergoing Curative-Intent Surgery?

General palliative care during the pandemic

HintergrundDas deutsche Gesundheitssystem steht aufgrund der SARS-CoV-2-Pandemie vor bisher nicht gekannten Herausforderungen. Auch die Palliativversorgung schwerkranker Patient*innen und deren Angehörigen war vor allem während der ersten Welle der Pandemie im stationären und ambulanten Setting stark beeinträchtigt. Das betrifft auch palliativ behandelte Krebspatient*innen.Material und MethodenDie Arbeit beschreibt – basierend auf Teilergebnissen einer Studie, die im Rahmen des Verbundprojekts „Nationale Strategie für Palliativversorgung in Pandemiezeiten“ (PallPan) durchgeführt wurde, sowie aus eigenen Erfahrungen aus der stationären Versorgung von Patient*innen, die unter einer schweren oder lebenslimitierenden Erkrankung leiden, – Best-Practice-Beispiele zur Verbesserung bzw. Aufrechterhaltung der Palliativversorgung.ErgebnisseEingeschränkte Besucherregelungen, Kommunikationsbarrieren und unzureichende Möglichkeiten zur Begleitung sterbender Patient*innen bzw. trauernder Angehöriger stellen nach wie vor große Herausforderungen in der allgemeinen wie spezialisierten stationären Palliativversorgung dar. Hier bedarf es der Schaffung von Strukturen, um z. B. innovative Kommunikationswege mittels Videotelefonie oder individuelle Ausnahmeregelungen von Besuchsverboten bei Therapiezielgesprächen oder Sterbebegleitungen möglich zu machen, um eine qualitativ hochwertige Palliativversorgung aufrechtzuerhalten.SchlussfolgerungenEine adäquate Versorgung schwerkranker und sterbender Patient*innen sowie deren Angehörigen muss auch in der Pandemie gewährleistet werden. Individuelle Maßnahmen können abgesprochen und durchgeführt werden. Eine frühzeitige Einbindung spezialisierter Palliativteams kann von Vorteil sein.

Early advance care planning in amyotrophic lateral sclerosis patients: results of a systematic intervention by a palliative care team in a multidisciplinary management programme - a 4-year cohort study.

Although recommended, the implementation of early advance care planning is suboptimal in amyotrophic lateral sclerosis (ALS) patients. Barriers to advance care planning include healthcare professionals&rsquo; and patients&rsquo; reluctance, and uncertainty about the right time to initiate a discussion. To determine how often advance care planning was initiated, and the content of the discussion in a first routine palliative care consultation integrated within a multidisciplinary management programme. Between June 2012 and September 2016, a prospective cohort study was conducted in Geneva University Hospitals. Sixty-eight patients were seen every 3 months for a 1-day clinical evaluation in a day care centre. The patients&rsquo; mean &plusmn; standard deviation age was 68.6 &plusmn; 11.9 years, 50% were women. Four patients were excluded because of dementia. Advance care planning was initiated with 49 (77%) patients in the first palliative care consultation. Interventions most often addressed were cardiopulmonary resuscitation (49%), intubation and tracheostomy (47%) and palliative sedation (36.7%). Assisted suicide was discussed with 16 patients (36.6%). Functional disability was the only factor associated with initiation of advance care planning. Nearly half of the patients wrote advance directives (45%) or designated a healthcare surrogate (41%). Bulbar onset, functional disability and noninvasive ventilation were not associated with the completion of advance directives. Early initiation of advance care planning is feasible in most ALS patients during a routine consultation, and relevant treatment issues can be discussed. All ALS patients should be offered the opportunity to write advance directives as completion was not associated with disease severity.&nbsp.