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In the last four decades, survival in childhood cancer in India has improved significantly, however we increasingly face the question that has challenged providers in high-income countries: when care becomes futile and merely prolongs suffering, how should that be addressed? This position statement was prepared by a panel in the Pediatric Hematology-Oncology chapter of the Indian Academy of Pediatrics (IAP-PHO), with external experts, using a process endorsed by the Executive Committee of IAP-PHO. The panel consisted of providers and stakeholders who were committed to improving end-of-life care (EOLC) in children with cancer. Three case scenarios of terminally ill children with cancer were presented, and the various challenges of EOLC in each situation were brought up, including families who wanted everything possible done for their child and the fear of medicolegal issues by physicians. We emphasize the importance of involving palliative care services early in the process to ensure that families receive a consistent message about their child's outcome. With the recent Supreme Court of India decision, there is now a viable EOLC pathway to withdraw life-sustaining therapy (LST) from children who are terminally ill. We outline it and discuss the various barriers to the withdrawal of LST. Increased access to palliative medicine services, which currently exist sporadically across India, is a core necessity. IAP-PHO hopes to actively work with organizations representing colleagues in palliative care and intensive care, to see how we can improve EOLC in childhood cancer.

Objective: Nurses inevitably encounter patients who require care aimed at limiting therapeutic effort (LTE), even though many of them are not prepared to provide support to individuals with terminal illnesses and their families. One of the contexts in which the LTE is considered is the intensive care unit (ICU). This review is to describe the competencies for the execution of a nursing professional role in the LTE in the ICU. Method: An integrative review of the literature published between the years 2010 and 2023. The search was carried out in five databases: Medline, Wiley Online Library, SciELO, ScienceDirect, and Web of Science. The Critical Appraisal Skills Programme in Spanish was used as the template for study evaluation. The methodology of the Oxford Center for Evidence-Based Medicine (CEBM) was used to assess the level of evidence and the degree of recommendation. Result: A total of 25 articles in a wide range of studies were included. The findings suggest that the competencies for LTE in the ICU are direct patient care, family-centered care, and the role of the nurse within the team. However, more high-quality studies are needed to confirm these conclusions. Three categories were identified: (a) competencies as defender agent between the patient, his family, and the interdisciplinary team; (b) competencies for decision-making in limiting the therapeutic effort; and (c) competencies for nursing therapeutic interventions at the end of life. Conclusion: The competencies of the nursing professionals who work in the adult ICU in the LTE are essential to the patient’s quality of life, dignity of their death, and comprehensive family support for coping with grief.

Summary: Background: The place of death profoundly affects end-of-life care quality, particularly in cancer. Assisting individuals at home enhances support, privacy, and control, reducing healthcare costs. This study seeks to elucidate factors associated and trends in place of death by cancer in Brazil. Methods: Using data obtained from the National Mortality Information System, this study extracted tumour topography, sociodemographic characteristics, and the place of death (outcome classified into hospital or home death) by cancer in Brazil from 2002 to 2021. Findings: The analysis included 3,677,415 cases, with 82.3% of deaths occurring in hospitals and 17.7% at home. Most participants were male (53.1%), had gastrointestinal tumours (32.2%), and resided in the Southeastern region (48.7%). Home deaths were more frequent in the Northeastern (30.2%) and Northern (24.8%) regions compared to the Southern (17.1%) and Southeastern (12.2%) regions. A strong inverse correlation was found between home deaths and the Human Development Index of the region. Over the years, there was a reduction in home deaths, followed by a recent increase. Individuals with no formal education, indigenous individuals, and patients from the North, Northeast, and Central-West regions had higher rates of home deaths, while patients with haematological malignancies had lower rates compared to those with gastrointestinal tumours. Interpretation: The minority of deaths by cancer in Brazil occur at home, with distinct trends over time. Home death was associated with regional, racial and educational level differences. Funding: No funding.

Objective: National data have shown worse endometrial cancer (EC) outcomes among racial and ethnic minorities. We aimed to analyze EC patient outcomes within a large urban academic health system, with a focus on patterns of care and recurrence rates. Methods: This was a retrospective chart review of EC patients at three system hospitals from 1/1/07–12/31/17. Demographic and clinical factors, including time from EMB to surgery, rate of chemotherapy completion, persistent or recurrent disease, and palliative care referrals were extracted. Descriptive statistics and survival curves were generated. Analysis was done using SAS version 9.4. Results: Black patients had lower overall survival compared to all others on univariate analysis only (p

The rapidly expanding older population across Low- and Middle-Income Countries (LMICs) underscores the urgent need to strengthen the health systems. However, the extent of service coverage and healthcare workforce allocation strategies for geriatric and palliative care in LMICs remains inadequately explored. To address this, we conducted this systematic review, following the standard guidelines, to synthesize available data from four databases spanning 2011 to 2022. Utilizing the Risk of Bias Assessment tool for non-randomized studies (ROBANS) for quantitative studies and the JBI (formerly known as Joanna Briggs Institute) checklist for qualitative research, we assessed the risk of bias and the quality in the included studies. Despite a comprehensive search, only three eligible studies were found, revealing a scarcity of research. The identified challenges include deficiencies in leadership, governance, financing, and essential resources, leading to compromised service coverage. The health workforce, often limited and lacking inadequate training, exacerbates the situation. Our evidence synthesis proposes some potential solutions such as telemedicine and cross-country collaboration through distance learning mechanisms to address these issues. The findings and recommendations from this review offer valuable insights applicable across various healthcare service contexts within LMICs and advocate for more health systems research in this topic area.

Home dying is a policy indicator of ‘quality dying’ in many high-income countries, but there is evidence that people living in areas of higher deprivation have a reduced likelihood of dying at home. However, there is limited research which centres the views and experiences of people living with both socioeconomic deprivation and serious advanced illness. We deployed visual methods to address this gap in knowledge, focusing on barriers to, and experiences of, home dying for people experiencing poverty and deprivation in the UK. We used photovoice and professional documentary photography between April 2021 and March 2023 with eight participants with serious advanced illness, six of whom had died by the end of the study. We also worked with four bereaved family members to create digital stories. This produced a large volume of multi-modal data which we analysed using a thematic, iterative, interpretive approach. Key findings included the high costs of dying at home, the nature and impact of which were conveyed by images such as a heating thermostat set to low. Images also expressed how for some participants, the environment inside and outside the home was experienced as oppressive and alienating because of cramped, materially poor social housing, as well as urban noise, crime, mould and damp, and a lack of access to outside space. Nevertheless, the home environment was important to all participants, particularly as a site to support the continuation of their identity and autonomy, and some were explicit about wanting to remain at home for as long as possible. This study provides unique insights regarding the significant policy shift needed to improve the extent and experience of home dying for the growing number of people dying in the context of financial hardship and deprivation both in the UK, and elsewhere.

This study aimed to evaluate the prevalence of polypharmacy, the presence of potentially inappropriate medications and related factors in older adults receiving palliative care. This cross-sectional descriptive study was performed in 213 patients who were served from palliative care services. Mini Nutritional Assessment-Short Form, Katz Activities of Daily Living Scale and Charlson Comorbidity Index were applied. Polypharmacy was defined as the use of 5 or more medicines while the use of 10 or more medicines was considered as hyper-polypharmacy. PIM was assessed according to the TIME-to START and TIME-to STOP criteria. A total of 213 patients were included, mean age was 78.00 ± 9.08 years. Polypharmacy was present in 59.2 % of the patients and hyper-polypharmacy was present in 10.8 %. There was a statistically significant correlation between polypharmacy and marital status, history of falls, mid-upper arm, and calf circumference (p = 0.017, p = 0.022, p = 0.010, p = 0.003, respectively). The rate of inappropriate medication use of the cardiovascular system, gastrointestinal system, analgesics, musculoskeletal system, and nervous system drugs was high. There was at least one inappropriate medication use in 56.3 % of older adults. PIMs use was 18.3 % according to TIME-to-START criteria and was 48.4 % according to TIME-to-STOP criteria. There was a higher rate of PIMs use according to TIME criteria in the group with polypharmacy than non-polypharmacy (p

Background: Spiritual wellbeing (SWB) is one of the crucial components of holistic care for patients with terminal illnesses. The use of a validated instrument can help health professionals approach this difficult and subjective topic. There is no validated Bengali tool to measure this domain. Our study aimed to translate the EORTC QLQ SWB32 tool into Bengali, validate it among advanced cancer patients in Bangladesh, and compare the study's findings to international validation studies to determine its suitability as a measurement and intervention tool for these patients. Methods: The original English version of the tool was translated in Bengali and back-translated by four independent translators with good command in both languages. After approval from the EORTC translation team and linguistic validation, the tool was further validated among 163 advanced cancer patients from palliative care units of four tertiary-level hospitals in Bangladesh. Reliability was tested with Cronbach's alpha, and construct validity was determined by exploratory factor analysis. Known group comparisons were performed by the Kruskal-Wallis H test and the Mann-Whitney U test. Result: Ten adult cancer patients (two female and eight male, three Hindu and seven Muslim) participated in the linguistic validation. Six out of ten participants found the measure understandable and acceptable. A total of 163 advanced cancer patients participated in the psychometric validation phase. The majority of those participants were Muslims (94 %), with a slight male predominance. The internal consistency of each scale was satisfactory (0.7). Exploratory factor analysis also showed similarity to the original scale except item 12 (able to forgive others), which was loaded in both the EX and RO components (0.813 and 0.544, respectively). Older patients had a better relationship with themselves and a lower level of existential fulfilment than the younger group. Patients who tried to find comfort in their religion or spiritual faith, actively performed religious rituals, and had affiliations with religious or spiritual communities showed significantly higher global SWB. Conclusion: The Bengali version of the EORTC QLQ-SWB32 is a reliable and valid tool for measuring the spiritual wellbeing of advanced cancer patients receiving palliative care.

Introduction: Patients with advanced cancer tend to utilize the services of the health care system, particularly emergency departments (EDs), more often, however EDs aren't necessarily the most ideal environments for providing care to these patients. The objective of our study was to analyze the clinical and demographic characteristics of advanced patients with cancer receiving basic palliative care (BPC) or hospice care (HC), and to identify predictive factors of BPC and HC prior to their visit to the ED, in a large tertiary care center in Hungary. Methods: A retrospective, detailed analysis of patients receiving only BPC or HC, out of 1512 patients with cancer visiting the ED in 2018, was carried out. Sociodemographic and clinical data were collected via automated and manual chart review. Patients were followed up to determine length of survival. Descriptive and exploratory statistical analyses were performed. Results: Hospital admission, multiple (≥4x) ED visits, and respiratory cancer were independent risk factors for receiving only BPC (OR: 3.10, CI: 1.90–5.04; OR: 2.97, CI: 1.50–5.84; OR: 1.82, CI: 1.03–3.22, respectively), or HC (OR: 2.15, CI: 1.26–3.67; OR: 4.94, CI: 2.51–9.71; OR: 2.07, CI: 1.10–3.91). Visiting the ED only once was found to be a negative predictive factor for BPC (OR: 0.28, CI: 0.18–0.45) and HC (OR: 0.18, 0.10–0.31) among patients with cancer visiting the ED. Conclusions: Our study is the first from this European region to provide information regarding the characteristics of patients with cancer receiving BPC and HC who visited the ED, as well as to identify possible predictive factors of receiving BPC and HC. Our study may have relevant implications for health care planning strategies in practice.

Background: Family involvement and comfort are equally important in palliative care. Dignity undertook a new meaning and novel challenges as a result of restrictions on visits and companionship during the pandemic. Family-centered family dignity interventions have been shown to be effective in increasing patients’ sense of dignity, increasing levels of hope, and reducing psychological distress; however, the effectiveness in enhancing family adaptability and intimacy in the survivor-caregiver binary and reducing expected grief have been inconclusive. Objectives: The primary objective of this study was to assess the efficacy of family dignity interventions on family adaptability and cohesion. The secondary objective was to explore the effects of the interventions on anticipatory grief and psychological distress, and the lasting effect 1 month after the intervention. Design: A single-blinded, two-arm parallel group, randomized controlled trial was conducted in China. Settings: and methods: Ninety-eight dyads who met the inclusion criteria were randomly assigned to the family dignity intervention (n = 51) or standard palliative care group (n = 47) between June and August 2022. Study outcomes were measured at baseline, immediately post-intervention, and at the 1-month follow-up post-intervention evaluation. Data were analyzed using the Kolmogorov-Smirnov test, chi-square test, Fisher's exact test, independent sample t-test, Wilcoxon rank-sum test, and generalized estimation equations. The Intention-To-Treat analysis was performed for all available data. Results: In comparison to the control group, significant improvements in family adaptability and cohesion and anticipatory grief over post-intervention and 1-month follow-up were demonstrated among the patients in the intervention group. The intervention group of caregivers had significant improvement in anticipatory grief at post-intervention and 1-month follow-up. The level of psychological distress was significantly lower in the intervention group than the control group (p

Background: Palliative Care offers patient-centered, symptom-focused relief for patients with incurable disease, and early integration of palliative care ensures quality of life and death while reducing medical impoverishment. The Emergency Department is an ideal yet understudied, under-utilized location to initiate palliative care. Objective: To evaluate the palliative care needs of patients with incurable disease and perceived barriers amongst healthcare providers in the Emergency Department of Kiruddu National Referral Hospital, Kampala, Uganda. Methods: A mixed methods survey of Emergency Department healthcare workers and patients was conducted. A crosse sectional survey of ninety-nine patients was conducted using the integrated Palliative Care Outcome Scale (IPOS). Eleven interviews were conducted with healthcare workers at Kiruddu Hospital, identified by purposive sampling. Descriptive and inferential statistics were used to analyze quantitative data.. Grounded theory approach was used to construct the in depth interview questions, code and analyze qualitative results and collapse these results into final themes. Results: The most common diagnoses were HIV/HIV-TB (32 %), heart disease (18 %), and sickle cell disease (14 %). The prevalence of unmet palliative care needs was substantial: more that 70 % of patients reported untreated symptoms e.g., pain, fatigue, difficulty breathing. Seventy-seven percent of the population reported severe or overwhelming pain. The main barriers to provision of palliative care in the Emergency Department as identified by healthcare workers were: (1) lack of adequate training in palliative care; (2) Challenges due to patient volume and understaffing; (3) the misconception that palliative care is associated with pain management alone; (4) Financial constraints as the greatest challenge faced by patients with incurable disease. Conclusions: We report a high prevalence of unmet palliative care needs among patients in this urban Ugandan Emergency Department, and important barriers reported by emergency healthcare providers. Identification of these barriers offers opportunities to overcome them including harnessing novel mHealth interventions such as clinical support apps or telehealth palliative care consultants. Integration of palliative care in this setting would improve the care of vulnerable patients, provide healthcare workers with an additional care modality while likely adding value to the health system.

Summary: This paper describes the story of a patient at her end of life because of recurrent peritoneal carcinomatosis and malignant bowel obstruction with the aim of discussing the most significant controversies and challenges that presented for her care in this difficult phase of her life. The ethical principles that form the base for decisions and the main aspects of her palliative care are discussed.

Introduction: Zerumbone is a natural compound found in bitter ginger plants (Zingiber zerumbet) that shows antiproliferative, antioxidant, anti-inflammatory, and analgesic properties. We aimed to investigate the role of zerumbone in improving the quality of life and symptom control in cancer patients with no treatment options. Methods: We conducted a pilot, non-randomized, single-center, open prospective, and systematic study on the use of 400 mg of zerumbone twice a day. Results: The study included 35 patients (mean age, 68 years; 64% men), of which 16 completed the eight-week study. The intention-to-treat population showed no significant changes in weight or sleep quality over the eight-week study. Assessments performed using the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire Core 30 (EORTC QLQ-C30) showed significant improvements in the quality of life in the global (p = 0.072), activity (p = 0.0393), social (p = 0.0001), and emotional (p = 0.0023) dimensions. The Hospital Anxiety and Depression Scale (HADS) questionnaire scores showed significant improvement in anxiety (p = 0.032) and depression (p = 0.021), while the Functional Assessment of Chronic Illness Therapy-Fatigue (FACIT-F) questionnaire scores also indicated a significant improvement (p = 0.001). Bitter ginger showed low toxicity. Conclusions: Bitter ginger showed promising results in improving the quality of life and reducing symptoms of anxiety and depression in the study population. A randomized placebo-controlled study is necessary to confirm these results.This trial was registered under the number FMABC: CAAE – 93459418.00000082, at ISRCTN (BIOMED CENTRAL) NUMBER 4388 (03/07/23) and at Plataforma Brasil (https://plataformabrasil.saude.gov.br/login.jsf)

Background & Aims: There is growing acceptance that principles of palliative care should be integrated into the management of serious illnesses affecting the liver, such as acute-on-chronic liver failure (ACLF). However, rates, patterns, and predictors of specialty palliative care consultation among patients with ACLF have not been well-described. Methods: We performed a retrospective cohort study of patients hospitalized with ACLF between 1/1/2008 and 12/31/2018 using the VOCAL cohort. Patients were followed until 6/2021. We used mixed-effects regression analyses to identify significant patient and facility factors associated with palliative care consultation. We examined timing of consultation, the influence of ACLF characteristics, and facility-level variation on receipt of palliative care consultation. Results: We identified 21,987 patients hospitalized with ACLF, of whom 30.5% received specialty palliative care consultation. Higher ACLF grade (ACLF-2 [odds ratio (OR) 1.82, 95% CI 1.67-1.99], ACLF-3 [OR 3.06, 95% CI 2.76-3.40]), prior specialty palliative care consultation (OR 2.62, 95% CI 2.36-2.91), and hepatocellular carcinoma (OR 2.10, 95% CI 1.89-2.33) were associated with consultation. Consultation occurred latest and closest to the time of death for patients with ACLF-3 compared to ACLF-1 and ACLF-2. Significant facility-level variation in consultation persisted among patients with ACLF-3, despite adjusting for multiple patient and facility factors. Conclusion: In this large cohort of hospitalized patients with ACLF, specialty palliative care consultation was rare, more common in patients with higher grade ACLF, and tended to occur closer to the time of death for the sickest patients. Greater attention should be placed on earlier integration of palliative care during acute hospitalizations in patients with ACLF. Impact and implications: Though palliative care consultation is recommended for patients with acute-on-chronic liver failure, there is no data demonstrating how often this occurs during hospitalizations, on a population level. We found that consultation occurs in only 30.5% of patients and occurs later for patients with grade 3 acute-on-chronic liver failure. Our data should provoke clinicians to urgently consider quality improvement efforts to integrate palliative care into the management of these seriously ill patients.

Summary: The major ethical dilemma regarding feeding a person at the end of their life in Israel is related to the medical team's ability to not provide food. In addition to the medical indications, the decision-making process needs to include ethnic considerations, religious positions and a strong collective memory related to the Holocaust and post-Holocaust behavior. An Expert group of professionals regularly faced with these dilemmas gathered to address this issue. The group included Nutrition Specialists, Neurologists, Geriatricians, Oncologists and Specialists in palliative care, Nurses, Dieticians, Speech therapists but also Lawyers and Religion experts.The conclusions suggested: 1) One should evaluate the patient's ability to eat safely and sufficiently, assessed by speech therapist and dietician evaluations. 2) If not successful, a discussion between the team, the patient, if available, and the family is initiated. 3) If oral nutrition is possible it is encouraged. 4) If not, artificial nutrition should be discussed. 5) The family's will to never stop providing food and water according to Jewish law has to be acknowledged when the medical team does not suggest nutritional therapy. Emotional aspects, religious beliefs and nutritional indications have to be reconciled and a consensus should be reached.

Objective: Most deaths in Pediatric Intensive Care Units involve forgoing life-sustaining treatment. Such deaths required carefully planned end-of-life care built on compassion and focused on palliative care measures. This study aims to assess topics related to the end of life care in Brazilian pediatric intensive care units from the perspective of a multidisciplinary team. Method: The authors used a tested questionnaire, utilizing Likert-style and open-ended questions. After ethics committee approval, it was sent by email from September to November/2019 to three Pediatric Intensive Care Units in the South and Southeast of Brazil. One unit was exclusively dedicated to oncology patients; the others were mixed units. Results: From 144 surveys collected (23% response rate) 136 were analyzed, with 35% physicians, 30% nurses, 21% nurse technicians, and 14% physiotherapists responding. Overall, only 12% reported enough end-of-life care training and 40% reported never having had any, albeit this was not associated with the physician's confidence in forgoing life-sustaining treatment. Furthermore, 60% of physicians and 46% of other professionals were more comfortable with non-escalation than withdrawing therapies, even if this could prolong suffering. All physicians were uncomfortable with palliative extubation; 15% of all professionals have witnessed it. The oncologic team uniquely felt that “resistance from the teams of specialists” was the main barrier to end-of-life care implementation. Conclusion: Most professionals felt unprepared to forego life-sustaining treatment. Even for terminally ill patients, withholding is preferred over the withdrawal of treatment. Socio-cultural barriers and the lack of adequate training may be contributing to insecurity in the care of terminally ill patients, diverging from practices in other countries.

Background: Palliative care (PC) is an integral part of cancer treatment. However, data on service availability is limited in childhood cancers. Aim: To describe the availability of PC services in paediatric oncology centres across Europe, and to identify barriers and facilitators for implementing and providing paediatric palliative care (PPC). Methods: Paediatric oncology centres across Europe were invited to complete an online questionnaire. Results: A total of 158 paediatric oncology centres from 27 European countries participated. More than half of the centres (n = 102, 64.6 %) reported offering specialised PPC (defined as 24/7 coverage services with a specialised physician and a multidisciplinary team). Most centres included a multidisciplinary care team (n = 123, 80.9 %) and PC at home (n = 105, 69.1 %). In 38.7 % centres, service capacity was reported to be lower than demand. In most centres, PC consultation was initiated for a refractory neoplasm (n = 126, 81.2 %). Few centres (n = 11, 7.1 %) offered PC consultation at the time of a new cancer diagnosis. Eighty-two centres (52.6 %) reported having bereavement services. Negative parental perception (n = 99, 64.7 %) and late referrals (n = 91, 59.5 %) were major barriers to implementation perceived by health care providers. Conclusion: Our results suggest that specialised PPC is available in more than half of paediatric oncology settings across Europe. Although half have had PPC available for > 10 years, many cannot fulfil the demand for service. Barriers to implementation (i.e., parental education, staff training) should be addressed, with resources and services further expanded to cover the demand for PPC, including bereavement care.

Objective: Communication around a palliative approach to dementia care often is problematic or occurs infrequently in nursing homes (NH). Question prompt lists (QPLs), are evidence-based lists designed to improve communication by facilitating discussions within a specific population. This study aimed to develop a QPL concerning the progression and palliative care needs of residents living with dementia. Methods: A mixed-methods design in 2 phases. In phase 1, potential questions for inclusion in the QPL were identified using interviews with NH care providers, palliative care clinicians and family caregivers. An international group of experts reviewed the QPL. In phase 2, NH care providers and family caregivers reviewed the QPL assessing the clarity, sensitivity, importance, and relevance of each item. Results: From 127 initial questions, 30 questions were included in the first draft of the QPL. After review by experts, including family caregivers, the QPL was finalized with 38 questions covering eight content areas. Conclusion: Our study has developed a QPL for persons living with dementia in NHs and their caregivers to initiate conversations to clarify questions they may have regarding the progression of dementia, end of life care, and the NH environment. Further work is needed to evaluate its effectiveness and determine optimal use in clinical practice. Innovation: This unique QPL is anticipated to facilitate discussions around dementia care, including self-care for family caregivers.

Background: Patients with hidradenitis suppurativa (HS) experience high physical and emotional symptom burden and may benefit from palliative care interventions, though no studies have explored the unmet palliative care needs in this population. Objective: This case series aimed to qualitatively evaluate unmet needs and palliative care interventions among patients with HS who were referred to palliative care. Methods: We reviewed medical records of patients with HS who were referred from an HS specialty clinic and seen in an interprofessional palliative care ambulatory clinic. Palliative care notes were qualitatively analyzed inductively and deductively to identify themes characterizing unmet needs and palliative care interventions. Results: Thirteen patients with HS (median [IQR] age, 38 [31-45] years; 11 [85%] women; 11 [85%] Black) were referred and seen in a palliative care specialty clinic. Topics discussed included uncontrolled HS pain, housing insecurity, and emotional distress. Palliative care interventions included a thorough assessment of pain, multimodal pain management approaches, social worker weekly check-ins, and management of psychotropic medications. Limitations: Small study at a single tertiary center. Conclusions: Care models integrating palliative care approaches with multidisciplinary support services may reduce disease burden in a subset of patients with HS.

Objective: The objective is to examine whether one of the most used instruments for measuring attitudes towards caring for dying patients, the Frommelt Attitude Toward Care of the Dying (FATCOD-B) instrument, has the same meaning across different societal contexts, as exemplified by Swedish and Saudi Arabian intensive care professionals. Methods: A cross-sectional design used the 30-item FATCOD-B questionnaire. It was distributed to intensive care professionals from Sweden and Saudi Arabia, generating a total sample of 227 participants. Ordinal logistic regression models were used to examine the differential item functioning (DIF) for each item. Results: Up to 12 of the 30 items were found to have significant DIF values related to: (a) Swedish and Saudi Arabian intensive care professionals, (b) Swedish and Saudi Arabian registered nurses (RNs), (c) RNs’ levels of experience and (d) RNs and other intensive care professionals in Saudi Arabia. Conclusions: The results indicate that FATCOD should be used cautiously when comparing attitudes towards death and dying across different societal and healthcare contexts.

The number of centenarians with cancer is increasing as the global population ages. The diagnosis and treatment for centenarians with tumor sometimes are specific, and there are currently less appropriate guidelines as references. We report a 104-year-old man with asymptomatic primary liver cancer (PLC) whose family decided to receive conservative and palliative care. The patient has been followed up for 27 months. He has been mainly received Chinese herbal medicine (CHM), nutritional support and thymalfasin injection intermittently, etc. During the 27-month follow-up, the patient has showed good compliance and tolerance without any complications of the tumor. Conclusion: Individualized palliative care and complementary medicine, based on multidisciplinary evaluation, traditional Chinese medicine, consultation with patients and their families about treatment options, etc., may help improve the life quality of centenarians with end-stage tumors.

Background and purpose: Radiotherapy (RT) treatment planning is as a standard based on a computed tomography (CT) scan obtained at the planning stage (pCT), while most of the decisions whether to treat by RT are based on diagnostic CT scans (dCT). Bone metastases (BM) are the most common palliative RT target. The objective of this study was to investigate if a palliative RT treatment plan of BMs could be made based on a dCT with sufficient accuracy and safety, without sacrificing any treatment quality. Materials and methods: A retrospective study with 60 BMs of 8 anatomical sites was performed. RT planning was performed using intensity-modulated radiation therapy/volumetric modulated arc therapy techniques in dCT and transferred to pCT. The dose of clinical target volumes (CTVs), D(CTVV95%, V50%), were compared between plans for dCT and pCT. Patient setup was investigated in cone-beam CT scans. Results: The differences of D(CTVV95%, V50%) between dCT and pCT plans were the lowest in the pelvis (1.0%, 1.1%), lumbar spine (0.6%, 0.7%) and thoracic spine (0.7%, 2.1%), while the differences were higher in cervical spine (3.7%, 1.9%), long bones (2.3%, 0.8%), and costae (1.6%, 1.4%). The patient set-up was acceptable for 100% of the pelvic and lumbar, for 92% of thoracic spine cases, and for

Purpose: Palliative radiotherapy for patients with head and neck cancer can be used to alleviate symptoms. Only a few studies have investigated its impact on patient-reported outcomes (PRO). Therefore, we conducted a prospective multicenter observational study. The primary objective was to assess changes in health-related quality of life (HrQoL) per PRO. Methods: Eligibility criteria included i.) head and neck cancer and ii.) palliative radiotherapy indicated (EQD2Gy

Background: : Globally, emergency centers (ECs) face increasing patients with palliative care (PC) needs. This is also true for South Africa. Factors include an increasingly older population, rising rates of non-communicable and infectious diseases. A paucity of data exists on local rates and reasons for patients with life limiting conditions presenting to ECs. PC and emergency medicine are established specialties, but little is known how they interface in clinical practice. This study describes the contribution of patients with life limiting conditions to the case load of an EC in a regional hospital in the Western Cape. Methods: : This was a prospective, descriptive study. All patients entering the EC over 3 months were assessed using a validated PC identification tool, developed for low-and-middle-income countries. All patients entering the EC were captured in an electronic database. Those identified to have life limiting illnesses and potential PC needs received a secondary ICD-10 code. These files were extracted and statistically analysed. Variables included diagnosis, demographics, reason for visit, and disposition. Results: : A total of 426 patient visits (4.24%) were identified. Cancer (25.8%), neurological (19.7%) and HIV (17.4%) were the most frequent diagnoses. Patients with HIV and TB were significantly younger. Physical symptoms were the most common reasons for attendance (87%), followed by social (11%) and system issues (10%). Most patients were discharged home (55%), 26% were admitted, and 13% died in the EC. Discussion: : ECs in Africa are under-resourced and uncomfortable places for patients with life limiting illnesses. System-related visits could be avoidable, as most were due to patients running out of medication or requiring procedures such as urinary catheter changes, which could be done at the local clinic. Some attended EC due to social reasons, usually due to caregivers feeling overwhelmed. Patients requiring PC make up a significant percentage of EC visits. Optimizing health systems and community home-based care could alleviate EC pressures and improve the illness experience of patients with life limiting conditions.

Objectives: To investigate the current situation of palliative care needs and the symptom burden in patients with end-stage renal disease (ESRD) undergoing maintenance hemodialysis (MHD), and to explore whether there are differences between younger and older patients. Methods: This cross-sectional study was conducted in the hemodialysis centers of two tertiary hospitals from November 2021 to June 2022. Participants were selected by convenience sampling. Socio-demographics, clinical characteristics, the Palliative Care Outcome Scale (POS), the Dialysis Symptom Index (DSI), and health-related quality of life (EQ-5D-3L) were used for evaluation. Descriptive statistics, between-group comparisons, and correlation analysis were used to analyze the data. Results: A total of 236 patients were enrolled, including 118 younger and 118 older patients. The total median (P25, P75) POS score was 16.0 (12.0, 23.0), and the score was higher in older patients (P

Background: Heart failure (HF) has become a global health problem that has affected the quality of life of millions of people. One approach to improving patients’ quality of life (QoL) with chronic diseases such as HF is palliative care. In Iran, the bulk of palliative care research is directed to patients with cancer, with the primary focus on the physical aspect rather than the psychosocial and spiritual aspects of palliative care. To address this gap, this study aims to determine the feasibility and acceptability of this early tele-palliative care intervention to improve quality of life in heart failure patients in Iran. Methods: The early tele-palliative care versus usual care study is designed as a single-centre, randomised, feasibility trial of 50 patients with heart failure aged 18 to 65 and clinician-determined New York Heart Association class II/III or American College of Cardiology stage B/C HF, recruited in Imam Khomeini Hospital Complex, Tehran, Iran. This intervention contains 6 weekly educational webinars and concurrent WhatsApp® group activities. Program feasibility and acceptability will be assessed by measuring the recruitment, attrition, and questionnaire completion rates; satisfaction and attitudes about the intervention will be measured via a telephone-based interviews. Secondary outcomes of Qol, mood status and number of emergency department visits will be measured with validated instruments. Participants in both groups will be followed up for 6 weeks, and the measures will be re-administered. Appropriate statistical tests will be used to analyse the data. Conclusion: This is the first early tele-palliative care intervention designed for heart failure patients in Iran. The intervention has been developed by a multidisciplinary team of academic and clinical professionals with patient stakeholder input to create a rigorous and culturally responsive approach for palliative care delivery for heart failure patients in Iran. Trial registration: IRCT registration number - IRCT20100725004443N29.

Background: A ‘good death’ is one of palliative care's main goals. However, there are different perspectives on what a good death is. Perspectives from three groups of people involved in the dying process: patients, caregivers, and healthcare providers; are crucial because how they interact will affect the overall quality of end-of-life care. Objective: The aims were to 1) explore what is a good death and 2) how to achieve it from the perspectives of those involved in patient care. Methods: A qualitative study was conducted between February to August 2019. The recruitment triad of stakeholders consisted of one patient with their primary caregiver and their physician. Interviews were conducted by researchers who had no prior relationship with the participants and were not a part of the healthcare team. Each research aim was analyzed separately using thematic content analysis. Data saturation was reached when no new or emerging themes emerged. Fourteen people were interviewed; five patients, five caregivers, and four physicians. Results: Regarding perspectives of a good death, four themes emerged: 1: Peaceful natural progression and symptom-free, 2: Acceptance of death and dignity, 3: Readiness for death is facilitated by social support and the environment, and 4: Faith and religious values can bring peace. For the second research question regarding how to help the patient achieve a good death, three themes emerged: 1: provide supportive care, 2: good communication, and 3: prioritize the patients’ wishes. Conclusion: In the Thai context, the meaning of a good death relates to symptom control, acceptance of death, social support, and faith. However, a clear understanding of each individual's meaning of good death is required due to individualized needs and perceptions. Physicians and stakeholders looking to support good death should focus on providing supportive care, good communication, and prioritizing the patient's will and wishes.

Introduction: Cancer cachexia, found in more than a third of patients with NSCLC, directly leads to functional and survival detriments. As screening and interventions for cachexia and NSCLC improve, deficits in health care access and quality among patients disadvantaged by racial-ethnic and socioeconomic factors must be addressed. Methods: We retrospectively evaluated 957 patients diagnosed with having stage IV NSCLC between 2014 and 2020 in Dallas, Texas. Cachexia was retrospectively assessed by applying criteria for substantial unintentional weight loss in the time leading up to cancer diagnosis. Nonparametric, parametric, multivariate logistic regression, and Kaplan-Meier analyses were conducted to evaluate for variables potentially associated with cachexia incidence and survival. Results: In multivariate analysis including age, sex, comorbidities, body mass index, risk behaviors, and tumor characteristics, Black race and Hispanic ethnicity were independently associated with more than a 70% increased risk of presenting with cachexia at the time of NSCLC diagnosis (p < 0.05). When private insurance status was included as a covariate, this association was diminished for Hispanic patients only. Black patients presented with stage IV disease at an average of approximately 3 years younger than White patients (Kruskal-Wallis p = 0.0012; t test p = 0.0002). Cachexia status at diagnosis consistently predicted for survival detriments, further highlighting the importance of addressing differential cachexia risk across racial-ethnic groups. Conclusions: Fundamentally, our findings reveal elevated cachexia risk in Black and Hispanic patients with stage IV NSCLC with associated survival detriments. These differences are not fully accounted for by traditional determinants of health and suggest novel avenues for addressing oncologic health inequities.

Background: Receiving a diagnosis of lung cancer is an emotional event, not least because it is usually diagnosed at advanced stages with limited life expectancy. Although evidence-based educational, emotional, and social interventions exist, they reach few patients and usually when it is too late. Objective: This project will be carried out in a comprehensive center for cancer care and health research, aiming to study the efficacy, costs, and utility of an eHealth ecosystem to meet the psychosocial needs of patients with advanced lung cancer. Method: We will enroll 76 patients with advanced lung cancer into an eHealth ecosystem of stepped and personalized psychosocial care for 9 months. These patients will be compared with another 76 receiving usual care in a non-inferiority randomized controlled trial. The following main outcomes will be measured every 3 months: emotional distress, spirituality, demoralization, quality of life, and medication adherence. Secondary outcomes will include symptomatology, health education, cost-utility analyses, usability and satisfaction with the platform, and time to detect emotional needs and provide care. Baseline differences between groups will be measured with the Student t-test or chi-square test, as appropriate. We will then compare the main outcomes between groups over time using multilevel linear models, report effect sizes (Hedges' g), and assess non-inferiority. The cost-utility of both interventions will be considered in terms of quality adjusted life years and quality of life given the costs of providing each treatment. Discussion: This randomized controlled trial should provide new evidence on the efficacy and cost-utility of an eHealth ecosystem to deliver personalized and timely psychosocial care to patients with advanced lung cancer. Trial registration: ClinicalTrials.gov ID “NCT05497973”.

Objective: To systematically review research analyzing the effectiveness of decision aids for end-of-life care, including how researchers specifically measure decision aid success. Methods: We conducted a systematic review synthesizing quantitative, qualitative, and mixed-methods study results using Preferred Reporting Items for Systematic Reviews and Meta-Analysis guidelines. Four databases were searched through February 18, 2023. Inclusion criteria required articles to evaluate end-of-life care decision aids. The review is registered under PROSPERO (#CRD42023408449). Results: A total of 715 articles were initially identified, with 43 meeting the inclusion criteria. Outcome measures identified included decisional conflict, less aggressive care desired, knowledge improvements, communication improvements, tool satisfaction, patient anxiety and well-being, and less aggressive care action completed. The majority of studies reported positive outcomes especially when the decision aid development included International Patient Decision Aid Standards. Conclusion: Research examining end of life care decision aid use consistently reports positive outcomes. Innovation: This review presents data that can guide the next generation of decision aids for end-of-life care, namely using the International Patient Decision Aid Standards in developing tools and showing which tools are effective for helping to prevent the unnecessary suffering that can result when patients' dying preferences are unknown.

Objective: Prospective cohort study to test the real-life feasibility of longitudinal patient-reported outcome measurement PROM (Integrated Palliative Outcome Scale IPOS, and NCCN Distress Thermometer DT) required for outpatients with non-curable lung or prostate cancer in comprehensive cancer centers. Methods: Assessment with paper-based IPOS and DT was observed for 15 months. We analyzed response to patients' distress (requests for supportive and palliative services) following PROM. Focus groups to comprehensively explore the user experience of patients, informal caregivers and health care professionals (HCP) supplemented the analysis. Results: Ninety-seven percent (125/129) of the patients received a questionnaire once, but quarterly assessment as recommended by certification committees was achieved only in 50% and 31% of prostate and lung cancer patients. Although both instruments were well accepted, only IPOS showed a high content validity, because some patients had difficulties in understanding the DT. Patients felt comfortable with completing the PROM, and HCP found PROM helped to structure the patient encounter. Due to organizational deficiencies in the handling of the instruments and operationalization of reactions to identified distress, the referrals to supportive and palliative services were rare. Conclusion: To facilitate consequences from PROM it should be a standardized intervention rather than assessment alone. Innovation: The patient perspective improves the implementation of PROM under real-life clinical conditions.

Objectives: To describe how patients with Parkinson’s disease (PD) and care partners choose to share or withhold information from clinicians. Methods: This is a qualitative, descriptive study nested within a multisite, randomized clinical trial of outpatient palliative care compared to standard neurologic care for PD. Interviews with patients (n = 30) and care partners (n = 30) explored experiences communicating with neurology clinicians. Thematic analyses identified themes relevant to patient-care partner-clinician communication. Results: There were four themes relevant to sharing and/or withholding information from clinicians: (1) Suppressing Concerns During Visits, (2) Care Partner Awareness of Patients’ Communication Barriers due to Cognitive Impairment, (3) Limited Sharing of Sensitive or Intimate Issues by Patients and Care Partners, and (4) Patient and Care Partner Suggestions to Overcome ‘Holding Back’. Conclusion: Limitations to communication between patients, care partners, and clinicians should be acknowledged and recognized in routine Parkinson’s disease care to foster accurate disclosure of unmet palliative care and other needs. Triadic communication strategies may help patients and care partners talk about unmet palliative care needs. Innovation: By recognizing that cognitive impairment and sensitive topics can be barriers, clinicians can adjust or adopt targeted communication strategies for identifying and discussing care needs.

Objective: Nurses have opportunities to engage in goals of care conversations that can promote palliative care communication. The purpose of this study was to describe nurses' experiences in goals of care communication as summarized in the literature and to present a conceptual model of communication pathways for nurses. Methods: An integrative review of the literature (2016–2022) addressing nurses' experiences in goals of care communication was conducted using PubMed, CINAHL, and PsychInfo databases. A total of 92 articles were retrieved. A total of 12 articles were included for this review after applying the inclusion and exclusion criteria. Results: Of the 12 articles, the majority were qualitative studies (n = 8). Qualitative analysis of findings from all articles revealed three dominant themes: nurses' ambiguous role responsibilities, goals of care as end-of-life communication, and the need for nurse communication training. Conclusion: This article suggests an innovative conceptual model for advancing nurse communication about goals of care to facilitate primary palliative care. Innovation: The framework characterizes two communication pathways for Advanced Practice Nurses who direct goals of care discussions and Registered Nurses who support goals of care communication. The model informs future communication training aimed at supporting primary palliative care.

Resumen: Introducción: Existen pocos datos referentes a la práctica de sedación paliativa en población pediátrica. El objetivo de este estudio es crear una definición estandarizada de sedación paliativa para población pediátrica y aplicarlo en una Unidad de Cuidados Paliativos Pediátricos. Material y métodos: Se realizó una revisión no sistemática de la literatura en búsqueda de la evidencia y recomendaciones existentes para la práctica de sedación en población pediátrica, tras lo cual se creó una definición de sedación paliativa basada en tres ítems: 1. Indicación 2. Consentimiento 3. Aplicación. Posteriormente se realizó una revisión retrospectiva de registros clínicos para analizar la práctica de sedación paliativa atendidos por la Unidad de Atención Integral Paliativa Pediátrica de Madrid (UAIPPM) en un periodo de cinco años (enero 2013-diciembre 2017). Resultados: De 163 pacientes analizados, la sedación se aplicó en 20, 17 pacientes de la propia Unidad (70% varones; mediana de edad: 11,9 años); 12 pacientes padecían cáncer, siete enfermedades neurológicas y uno un síndrome polimalformativo; 52,9% pacientes sufrían más de un síntoma en el momento de indicar la sedación paliativa, siendo el dolor (64,7%) y la disnea (58,8%) los más frecuentes. En cuanto a la definición, sólo tres pacientes consiguieron una cumplimentación global de la misma, siendo el registro del consentimiento informado el área con mayor potencial de mejora. Conclusiones: La evaluación basada en una definición estandarizada permitió definir la práctica de sedación paliativa en nuestra Unidad y encontrar áreas potenciales de mejora. Abstract: Introduction: Data surrounding palliative sedation in pediatric patients is scarce. Our objective is to assess the utility of creating a quality standard for pediatric palliative sedation. Material and methods: A non-systematic review of the literature was used to find recommendations for pediatric palliative sedation, after which a definition was established based on three items: (1) indication, (2) consent, and (3) application. Afterwards, a retrospective analysis of palliative sedations applied by our unit over 5 years was performed. Results: Out of 163 patients, palliative sedation was applied in 20, in 17 of them by our unit (14/20 males; median: 11.9 years). Twelve patients had oncological diseases, seven had neurological conditions, and one had a polymalformative syndrome. Nine patients had more than one symptom at the time of PS initiation with pain (11/17) and dyspnoea (10/17) being the most frequent. As for the definition, only three patients achieved a global completion, with the registration of the consent, specification of refractoriness and the establishment of an adequate initial sedative dose being the areas with more possible improvement. Conclusions: The application of the definition allowed us to analyze and find areas of improvement for our clinical practice of palliative sedation in pediatric patients.

Resumen: Introducción: Cada año fallecen en España alrededor de 2000 niños y adolescentes; sin embargo, conocemos poco las particularidades que envuelven a la muerte en pediatría. El objetivo de este estudio es documentar las características de los pacientes que fallecen a cargo de los equipos de cuidados paliativos pediátricos en España. Pacientes y métodos: Estudio retrospectivo, descriptivo y multicéntrico. Participaron 14 equipos de todo el territorio nacional. Resultados: Se obtuvieron datos de 164 pacientes. En la mayoría la enfermedad de base eran procesos oncológicos, neurológicos y neuromusculares. La mediana de edad al fallecimiento fue de 6,9 años (RIC: 11,2). La mediana de tiempo de seguimiento por el equipo fue de 0,3 años (RIC: 0,8 años). Los síntomas más frecuentes en la última semana de vida fueron disnea, dolor, aumento de secreciones y trastornos del sueño. El número de fármacos que se administraban a cada paciente una semana previa al fallecimiento tuvo una mediana de 6 (RIC: 4). El lugar de fallecimiento de 95 de los pacientes (57,9%) fue el hospital y de 67 (40,9%) fue su domicilio. Conclusiones: Los pacientes presentaban un amplio rango de edad y una exposición sustancial a la polifarmacia. El tiempo de seguimiento nos muestra el acceso tardío a los programas de cuidados paliativos, deberíamos hacer un esfuerzo para la introducción temprana de estos cuidados y que no quede relegada al final de vida. En España existe una distribución desigual de recursos, sin que todos los equipos tengan la posibilidad de atención domiciliaria, por lo que el lugar de fallecimiento debemos interpretarlo con cautela. Abstract: Introduction: Around 2000 children and adolescents die each year in Spain, however, we know little about the particularities of deaths in paediatrics. The purpose of this study is to document the characteristics of patients who die in the care of paediatric palliative care teams in Spain. Patients and methods: Retrospective, descriptive, multicentre study. Fourteen teams from all over the country participated. Results: Data were obtained from 164 patients. In most cases the underlying disease stemmed from oncological, neurological or neuromuscular processes. The median age at death was 6.9 years (RIC 11.2). The median follow-up time by the team was 0.3 years (RIC 0.8 years). The most frequent symptoms in the last week of life were dyspnoea, pain, increased secretions and sleep disorders. The median number of drugs administered to each patient one week prior to death was 6 (RIC 4). The place of death for 95 of the patients (57.9%) was hospital while 67 (40.9%) died at home. Conclusions: There was a wide age range of patients and they had substantial exposure to polypharmacy. The follow-up time shows that patients have late access to palliative care programmes. An effort should be made to introduce this care earlier rather than relegating it to the end of life. In Spain there is an unequal distribution of resources and not all teams can provide care at home. The place of death should be interpreted with caution.

Summary: Background: The Lancet Commission on Palliative Care (PC) and Pain Relief quantified the burden of serious health-related suffering (SHS), proposing an Essential Package of PC (EPPC) to narrow the global PC divide. We applied the EPPC framework to analyze PC access in Chile, identify gaps in coverage, and provide recommendations to improve PC access. Methods: Total SHS and population in need of PC was estimated using official 2019 government data. We differentiated between cancer and non-cancer related SHS given guaranteed Chilean PC coverage for cancer. We calculated differences between the Chilean PC package and the Lancet Commission EPPC to estimate the cost of expanding to achieve national coverage of palliative care. Findings: In 2019, nearly 105,000 decedent and non-decedent Chileans experienced SHS with a lower-bound estimate of 12.1 million days and an upper-bound estimate of 42.4 million days of SHS. Each individual experienced between 116 and 520 days of SHS per year. People living with a cancer diagnosis had PC access with financial protection, accounting for almost 42% of patients in need. People with non-cancer diagnoses—about 61 thousand patients–lacked PC coverage. Expanding coverage of the EPPC for all patients in need would cost just above $123 million USD, equivalent to 0.47% of Chilean National Health Expenditure. Interpretation: Achieving universal PC access is urgent and feasible for Chile, classified as a high-income country. Expanding PC services and coverage to the EPPC standard are affordable and critical health system responses to ensuring financial protection for patients with SHS. In Chile, this requires closing large gaps in PC coverage pertaining to patients with non-cancer conditions and treatment of symptoms that go beyond pain. Our research provides an empirical approach for applying the Lancet Commission SHS framework to estimate the cost of achieving national universal PC access anchored in a package of health care services. Funding: This research was partially funded by the Chilean Government through the Fondo Nacional de Ciencia y Tecnología (Fondecyt Regular) grant number 1201721, the U.S. Cancer Pain Relief Committee grant AWD-003806 awarded to the University of Miami and by the University of Miami Institute for Advanced Study of the Americas. We acknowledge NIH/NCI award P30CA008748.

Context: Understanding coping mechanisms adopted by families after the traumatic experience of losing a child to cancer may support health care teams in developing more comprehensive bereavement care. Objective: To synthesise qualitative, quantitative, and mixed methods studies focusing on the coping strategies families adopt after losing a child to cancer. Methods: Five databases were systematically searched (Medline, PsycInfo, Embase, CINAHL, and Scopus). Included studies were published in peer-reviewed journals, used empirical research methods, and focused on the coping strategies of families who lost a child to cancer. Content analysis was used to synthesise the results. Results: From 173 full papers, 34 papers were included in the review. Five overarching coping strategies were identified: continuing bonds; meaning-making; emotional expressions; distraction and refocusing; and taking care of others. Continuing bonds and meaning-making were the most frequently reported ones. Mothers, fathers, and siblings use different strategies to cope and their use varies over time as grief is an ongoing process without closure. We found no paper that addressed coping strategies of grandparents or other family members. Conclusion: Families should be reassured that there is no ideal coping style, and that each grief journey is unique both in expression and duration. Healthcare providers should be mindful of the internal and external factors, such as gender, developmental stage, or relationship with the deceased child, that might influence coping. Awareness of different coping strategies might help to improve bereavement care and communication with bereaved family members.

Introduction: Parkinson’s disease (PD) affects multiple facets of patients’ lives, many of which may not be recognized or addressed by their healthcare team. A growing body of evidence has shown that palliative care improves patients’ quality of life with PD; however, little is currently known about how patients with PD perceive palliative care. Methods: An 8-question multiple choice survey was created and given to patients with established care for PD at a movement disorders clinic in a quaternary care center. Patients with less than two years of follow-up or that had atypical features of PD were excluded from the survey. Results: There were 106 respondents to the survey. A third of patients reported having never heard of palliative care and an additional 25% had heard of it but did not know what it was. Eighty-eight percent reported being familiar with or very knowledgeable about hospice, though 50% of respondents did not know the difference between hospice and palliative care. 93% had never been offered either service. 37.7% thought their neurologist should discuss advance care planning early in the course of their disease. Conclusion: Even among established patients with Parkinson’s disease in a quaternary center, over half were not familiar with palliative care, and the majority had never been offered palliative or hospice services despite growing evidence that it could improve their quality of life. Additionally, patients would like to be introduced to advanced care planning early in the course of their disease.

Long standing and poorly acknowledged tensions underpin what is considered success or failure in the field of health and social care. Such tensions threaten to undermine and limit much needed progress. In this article, I discuss the role of death and the dying process as a foundation upon which we might begin to address these tensions. I argue that through careful acknowledgement and attention to the stillness and silence of death we might better understand the impact the dying process has on the healthcare discourses that surround and orientate themselves to it. Training our eye to the rhythm of the human life course necessitates a greater appreciation of death and its influence in shaping a meaningful response to questions relating to care and the attention to human suffering. With this comes a move beyond a singular focus on the body as life's container, embracing human connections that transcend the physical and social worlds. Here our dependency and vulnerability are as much as what makes as human as our autonomy and rationality. Such an appreciation allows us to move away from values entrenched within notions of success and failure and towards a more integrative approach to health and social care.

Resumen: Objetivo: Examinar las asociaciones entre las dimensiones del modelo de complejidad asistencial HexCom y la ubicación de la muerte. Método: Estudio observacional longitudinal multicéntrico en pacientes con enfermedad avanzada tratados por los equipos de soporte a la atención domiciliaria en Cataluña. Se recogieron edad, sexo, estado funcional y cognitivo, tipo de enfermedad, cuidador/a principal, trabajador/a familiar, lugar de la muerte y complejidad tras la primera visita. Se realizó un análisis de regresión de Cox multivariante. Resultados: Participación de 1527 pacientes (72% oncológicos), atendidos una mediana de 35 días. El 45% fallecieron en su domicilio. La probabilidad de morir en casa era mayor cuando se detectaba un mayor deterioro funcional (hazard ratio [HR]: 7,67; intervalo de confianza del 95% [IC95%]: 4,93-11,92), cuando el sujeto era varón (HR: 1,19; IC95%: 1,02-1,39), cuando la edad era >80 años (HR: 1,41; IC95%: 1,20-1,66) y cuando se detectaba complejidad en relación a la situación de últimos días (HR: 2,24; IC95%: 1,69-2,97). Era más probable no morir en casa si se padecía cáncer (HR: 0,76; IC95%: 0,64-0,89), si se detectaba un pobre apoyo externo al grupo familiar (HR: 0,79; IC95%: 0,67-0,93), si el/la paciente no se sentía en paz con los demás (HR: 0,54; IC95%: 0,39-0,75) o si había falta de acuerdo en la planificación del lugar de la muerte (HR: 0,57; IC95%: 0,48-0,68). Conclusiones: La valoración de la complejidad asistencial a través del modelo HexCom-Clin puede contribuir a una mejor planificación anticipada de decisiones al incorporar entre sus dimensiones el sentirse en paz con los demás, el soporte externo al núcleo familiar y el grado de acuerdo sobre el lugar de muerte. Abstract: Objective: To examine the associations between the dimensions of the HexCom care complexity model and the place of death. Method: Multicenter longitudinal observational study in patients with advanced illness cared for by home care support teams in Catalonia. Age, gender, type of illness, main caregiver, external support, place of death and the sub-areas of care complexity provided by HexCom were registered. A multivariate Cox regression analysis was performed. Results: Participation of 1527 patients (72% oncology), cared for a median of 35 days. 45% died at home. The probability of dying at home was greater when a greater functional impairment was detected in the initial assessment (hazard ratio [HR]: 7.67; 95% confidence interval [95%CI]: 4.93-11.92), when the patient was male (HR: 1.19; 95%CI: 1.02-1.39), was over 80 years old (HR: 1.41; 95%CI: 1.20-1.66) and when care complexity was detected in relation to being in a situation of last days (HR: 2.24; 95%CI: 1.69-2.97). It was more likely not to die at home in the case of cancer (HR: 0.76; 95%CI: 0.64-0.89), or if poor external support to the family group was detected in the first evaluation (HR: 0.79; 95%CI: 0.67-0.93), or that the patient did not feel at peace with others (HR: 0.56; 95%CI: 0.40-0.79), or lack of agreement on the planning of the place of death (HR: 0.57; 95%CI: 0.48-0.68). Conclusions: The assessment of the complexity of care through the HexCom-Clin model can help to improve advance planning of decisions by incorporating among its dimensions the feeling of peace with others, the external support to the family nucleus and the degree of agreement on the place of death.

Summary: Background: The benefits of artificial nutrition and hydration in patients with head and neck cancer and esophageal cancer in the late stage remain unknown. We performed a secondary analysis of a cohort study to investigate the effects of enteral tube feeding (ETF) and parenteral nutrition and hydration (PNH) on survival in this population. Methods: Patients with head and neck cancer and esophageal cancer admitted to palliative care units were included. Information on primary nutritional administration routes during the first week of admission and data on the averaged calorie sufficiency rate/total calorie intake, e.g., 75%≤/750 kcal/day≤ and

OBJECTIVES: Infections are the main complications in terminal diseases. Many patients die using antibiotics, which raises questions about their real usefulness and role in unnecessary prolongation of suffering. This survey evaluated how doctors use antibiotics in palliative care. METHODS: From June to August of 2016, an online survey was conducted with 224 doctors who provide palliative care. They had to decide whether to initiate antibiotics in fictitious scenarios involving patients with suspected infections (urinary tract infection, pneumonia, sepsis) in end-of-life (from cancer, dementia, malignant stroke with sequelae, advanced COPD, multiple organ failure). Then, they had to decide whether to stop, maintain, or extend antibiotics after non-response in 72 hours. RESULTS: 88-100% of doctors decided to initiate antibiotics in all situations, except in advanced dementia (45%), and most of them decided to maintain/extend antibiotics inadequately. Factors associated with maintaining/extending antibiotics inadequately were: longer time since graduation (over 13 years; significant in all 7 clinical situations; OR range: 2.45-10.11), and not having formal specialization in palliative care (statistically significant in 3 of 7 situations). CONCLUSIONS: Most palliative care physicians in this study decided to initiate and maintain/extend antibiotics at the end-of-life.

Background: Oxycodone is a frequently used opioid in cancer. Opioid-induced constipation (OIC) is common. Oxycodone/Naloxone Prolonged Release (OXN PR) contains naloxone, which mitigates OIC. Trials have either focused on non-cancer pain, or conducted before significant experience of using OXN PR. This trial aims to: demonstrate (1) analgesic equivalence between OXN PR and Oxycodone Prolonged Release (Oxy PR), and (2) superiority of constipation outcomes in OXN PR compared to Oxy PR in cancer pain. Unlike other trials, it will only include patients with at least moderate pain scores (≥4/10), allow usual laxatives, and exclude potential liver dysfunction. Methods: This is a multi-centre, open-label, randomised, phase IV study of OXN PR vs Oxy PR in patients with cancer-related pain. The primary outcome is pain difference on Brief Pain Inventory-Short Form (BPI-SF) at 5 weeks. Secondary outcomes are comparison of other pain outcomes (BPI-SF) and neuropathic pain measures (Leeds Assessment of Neuropathic Symptoms & Signs (S-LANNS)), constipation (Bowel Function Index (BFI)), quality of life (EORTC-QLQ-C30), rescue analgesia use, total opioid dose, and total laxative dose over 5 weeks. Conclusion: The comparison of analgesic efficacy between both arms, and superiority of constipation in the OXN PR arm will add new knowledge on the comparisons of both agents, and oxycodone independently. This trial will extend knowledge of the effectiveness, safety, and adverse effect profiles of both drugs in terms of pain, constipation, quality of life outcomes for patients with cancer pain, and provide clinicians with high quality data to guide decision making. Trial registration: Name of the registry: ANZCTR Trial registration number: ACTRN12619001282178 Date of registration: 17/09/2019 URL of trial registry record: https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=377673&isReview=trueProtocol version 2.1_28 August 2020

Critical exploration of family members' experience of the body of their deceased relative after a death in palliative care have been limited. To address this gap, we drew on semi-structured interviews at 6 months post loss with 58 family members bereaved after a death in palliative care, as part of a larger, longitudinal study conducted between 2016 and 2018. Narrative thematic analysis elucidated themes within and across participants' accounts of their experiences of the body. Social constructionist perspectives underpin recognition of the processes of grieving family members. Within an overarching theme of social meanings of the dead, five themes pertained to individual, relational, and contextual dimensions of interactions with the body, including: a dual sense of the body still holding the person and as just a body; family's experiences of the body both at home and in formal care settings; expectations around the right amount of time to be with and leave the body. Accounts also revealed their sense of knowing or not knowing what to do with the dead and elements of preparation of the body and management of the family and body by professional caregivers, with differences for deaths at home and deaths in formal settings. Findings highlight the importance of facilitating family and individual preferences, and options around care, place, and time with the body. Focus on support from clinical and social work staff, is warranted to enable provision of informed choice and support for families to engage with the body. Challenges related to COVID-19 are discussed.

Traditionally, outpatient parenteral antimicrobial therapy (OPAT) is used to treat infections with predictable course and anticipated response to therapy. However, there has been little consideration of OPAT for palliation as opposed to cure. This study presents a scoping review of literature and the experience of palliative OPAT at a tertiary referral hospital in Derbyshire, UK. Over the 5.5-year study period, six patients received OPAT for palliation (mean age 61 years). They accounted for 0.6 % (6/1044) and 3.1 % (1135/36658) of the total numbers of OPAT patients and bed-days saved, respectively. The literature search yielded 2375 articles, of which 5 case studies were eligible for review. Palliative OPAT provided positive experiences and outcomes for patients and their families. However, delivering palliative OPAT could be complex, time-consuming, and associated with clinical complications. There is a need for more research to address significant gaps in knowledge, especially regarding patient experiences and perspectives.

Objective: To evaluate patterns of palliative care (PC) integration in patients with platinum resistant ovarian cancer. Methods: Single institution retrospective study of patients with ovarian, tubal, or peritoneal high-grade carcinoma treated 2011–2020. Platinum resistance was identified by chemotherapy regimen or provider definition. Data was extracted evaluating treatment regimens, time to progression, PC and hospice referrals, and survival. Descriptive statistics and survival analyses were performed. Results: We identified 258 patients with platinum resistant ovarian cancer. Median survival from diagnosis of platinum resistance was 15 months (range 0–161). Most (71 %) patients were referred to PC, with 43 % of referrals within 3 months of death. Fourteen percent of patients were referred directly to hospice without PC involvement. Of 46 patients living with platinum resistant disease, 93 % meet criteria for early PC referral, but less than half have seen PC. Median time from platinum resistance to PC referral was 9 months (range 0–157) and from PC referral to death was 3 months (range 0–110). Median time from platinum resistance to hospice referral was 7 months (range 1–57) and from hospice referral to death was