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Background: Specialist-level palliative care support is intended for patients with complex physical and psychosocial needs. In addition to direct clinical care, specialist teams can be utilized to support the delivery of community-based palliative care by providing 24/7 access to advice and support for primary care providers, patients, and their families. Aim: This paper describes how a specialist palliative care team, based in a tertiary level hospital, can provide timely access to palliative care for patients in a surrounding sub-region that has historically lacked a robust network of community-based palliative care supports. Design: A retrospective database analysis was conducted from January 1 -- December 31, 2019, to describe the demographic and clinical characteristics of patients referred to the Palliative Care Consult Team who reside in the sub-region of Scarborough, Ontario. Data were reviewed to highlight the role the team plays in supporting endof- life care for this community of patients, families, and providers. Patients referred to the Palliative Care Consult Team with a residential address within the sub-region of interest were the focus. Results: In total, 343 patients living in the selected sub-region were seen by the Palliative Care Consult Team during a 12-month period, representing 18% of the team's annual clinical volume. The majority of these patients (94%) had a cancer diagnosis. Median Palliative Performance Scale score at time of initial consult was 40 for inpatients and 60 for ambulatory patients. More than half the patients 56%) were "full code" at the time of initial palliative care consultation. Median survival from initial consult to death was 18 days for inpatients and 68 days for ambulatory patients. More than half of the patients (54%) died in a palliative care unit, with a smaller percentage dying in the home setting (7%). Conclusions: Our report highlights the utilization of a database as a quality improvement tool to illustrate our institution's palliative care mission and vision of engaging in the provision of palliative care expertise to community-based patients and healthcare colleagues. [ABSTRACT FROM AUTHOR]

Objectives In the Netherlands, a case of euthanasia of an incompetent patient with dementia and an advance euthanasia directive (AED) caused great societal unrest and led to a petition signed by more than 450 physicians. In this paper, we investigate these physicians' reasons and underlying motives for supporting the 'no sneaky euthanasia' petition, with the aim of gaining insight into the dilemmas experienced and to map out topics in need of further guidance. Methods Twelve in-depth interviews were conducted with physicians recruited via the webpage 'no sneaky euthanasia'. General topics discussed were: reasons for signing the petition, the possibilities of euthanasia in incompetent patients and views on good end-of-life care. Data were interpreted using thematic content analysis and the framework method. Results Reasons for supporting the petition are dilemmas concerning 'sneaky euthanasia', the over-simplified societal debate, physicians' personal moral boundaries and the growing pressure on physicians. Analysis revealed three underlying motives: aspects of handling a euthanasia request based on an AED, good end-of-life care and the doctor as a human being. Conclusions Although one of the main reasons for participants to support the petition was the opposition to 'sneaky euthanasia', our results show a broader scope of reasons. This includes their experience of growing pressure to comply with AEDs, forcing them to cross personal boundaries. The underlying motives are related to moral dilemmas around patient autonomy emerging in cases of decision-making disabilities in advanced dementia. To avoid uncertainty regarding patients' wishes, physicians express their need for reciprocal communication. [ABSTRACT FROM AUTHOR]

Methadone has several unique characteristics that make it an attractive option for pain relief in serious illness, but the safety of methadone has been called into question after reports of a disproportionate increase in opioid-induced deaths in recent years. The American Pain Society, College on Problems of Drug Dependence, and the Heart Rhythm Society collaborated to issue guidelines on best practices to maximize methadone safety and efficacy, but guidelines for the end-of-life scenario have not yet been developed. A panel of 15 interprofessional hospice and palliative care experts from the U.S. and Canada convened in February 2015 to evaluate the American Pain Society methadone recommendations for applicability in the hospice and palliative care setting. The goal was to develop guidelines for safe and effective management of methadone therapy in hospice and palliative care. This article represents the consensus opinion of the hospice and palliative care experts for methadone use at end of life, including guidance on appropriate candidates for methadone, detail in dosing, titration, and monitoring of patients' response to methadone therapy. [ABSTRACT FROM AUTHOR]

The papers in this perspective were selected by the authors as they discussed the relevance of palliative care and highlighted the importance of integrative practice with oncology among papers published in 2020. This atlas is a source of essential information on the status of palliative care (PC) worldwide, and surveys PC needs based on the concept of serious health-related suffering (SHS) across age groups and disease types. [Extracted from the article]

Copyright of Taiwanese Journal of Sociology is the property of Taiwanese Sociological Association and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

Aims: Pulmonary arterial hypertension (PAH) is common amongst patients with congenital heart disease (CHD). It is a severe and complex condition that adversely affects quality of life and prognosis. While quality of life questionnaires are routinely used in clinical pulmonary hypertension practice, little is known on how to interpret their results and manage PAH‐CHD patients with evidence of impaired health‐related quality of life, especially those with advanced disease and palliative care needs. Methods and results: We performed a systematic review of studies concerning palliative care for people with PAH‐CHD, also reviewing the health‐related quality of life literature pertaining to these patients. Of 330 papers identified through initial screening, 17 were selected for inclusion. Underutilization of advance care planning and palliative care resources was common. Where palliative care input was sought, this was frequently late in the course of the disease. No studies provided evidence‐based clinical criteria for triggering referral to palliative care, a framework for providing tailored care in this patient group, or how to manage the risk of sudden cardiac death and implantable cardioverter defibrillators in advanced PAH‐CHD. We synthesize this information into eight important areas, including the impact of PAH‐CHD on quality of life, barriers to and benefits of palliative care involvement, advance care planning discussions, and end‐of‐life care issues in this complex patient group, and provide expert consensus on best practice in this field. Conclusions: This paper presents the results of a systematic review and expert statements on the preferred palliative care strategy for patients with PAH‐CHD. [ABSTRACT FROM AUTHOR]

Background: Community-based out-of-hours services are an integral component of end-of-life care. However, there is little understanding of how patients and families utilise these services. This additional analysis of a systematic review aims to understand and identify patterns of out-of-hours service use and produce recommendations for future service design. Method: Data on service use was extracted and secondary analysis undertaken, from a systematic review of models of community out-of-hours services. Narrative synthesis was completed, addressing four specific aspects of service use: 1.Times when patients/families/healthcare professionals need to contact out-of-hours services; 2. Who contacts out-of-hours services; 3. Whether a telephone call, centre visit or home visit is provided; 4. Who responds to out-of-hours calls. Results: Community-based out-of-hours palliative care services were most often accessed between 5pm and midnight, especially on weekdays (with reports of 69% of all calls being made out-of-hours). Family members and carers were the most frequent callers to of the services (making between 60% and 80% of all calls). The type of contact (telephone, centre visit or home visit) varied based on what was offered and on patient need. Over half of services were led by a single discipline (nurse). Conclusions: Out-of-hours services are highly used up to midnight, and particularly by patients' family and carers. Recommendations to commissioners and service providers are to: • Increase provision of out-of-hours services between 5pm and midnight to reflect the increased use at these times. • Ensure that family and carers are provided with clear contact details for out-of-hours support. • Ensure patient records can be easily accessed by health professionals responding to calls, making the triage process easier. • Listen to patients, family and carers in the design of out-of-hours services, including telephone services. • Collect data systematically on out-of-hours-service use and on outcomes for patients who use the service. [ABSTRACT FROM AUTHOR]

An editorial is presented on how to not get rejected for article submission by publications. It expresses how the language of the research paper should clear in concise enough to attract the general audience, as the audience may or may not have the expertise, avoiding jargon or abbreviations and the reflection of a clear central message in the abstracts of the research.

Heart failure is a clinical syndrome with increasing prevalence, high morbidity and mortality. It is characterized by high symptom burden, poor quality of life and high economic costs. This implies that the heart failure (HF) patients who receive palliative care (PC) have needs similar to cancer patients, but which are often unmet. This paper analyzes the main unresolved issues regarding the relationship between HF patients and the referral to an early PC program. These issues are presented as ten questions related to which patients should be admitted to PC and at what stage of their disease. Furthermore, the barriers opposing to referral to PC, the role of cardiologists and PC physicians within the care team, the gap between the scientific societies' suggestions and the real world, the right time to promote patients' awareness and shared decision making, regarding prognosis, end of life wishes and choices, with reference also to cardiac implantable devices' deactivation, are discussed. These unresolved questions support the need to reevaluate programs and specific models in achieving equal access to palliative care interventions for HF patients, which is still mainly offered to patients with cancer. [ABSTRACT FROM AUTHOR]

As the understanding of the role of palliative care in neurology increases, there is the need to ensure that these developments include not only care at home and in hospitals but also in clinics. There are no reports on palliative care from neurology clinics in Japan, and this paper considers the problems and proposed solutions for improving palliative care provided at neurology clinics in Japan. In Japan, physicians in neurology clinics are extremely busy both during and after office hours with medical treatment and the preparation of various documents and are unable to conduct case conferences. Moreover, the education system for palliative care, especially for lifelong education, is not sufficient, and multidisciplinary cooperation is difficult due to the lack of specialists and their scattered locations. To improve the care provided for patients and their families, general palliative care should be included in the health insurance system with incentives and recognition, and mandatory lifelong education should be established so that all neurologists can provide palliative care. These proposals may be appropriate for other countries as palliative care in neurology is established. [ABSTRACT FROM AUTHOR]

Background: Many people living with dementia eventually require care services and spend the remainder of their lives in long-term care (LTC) homes. Yet, many residents with dementia do not receive coordinated, quality palliative care. The stigma associated with dementia leads to an assumption that people living in the advanced stages of dementia are unable to express their end-of-life needs. As a result, people with dementia have fewer choices and limited access to palliative care. The purpose of this paper is to describe the protocol for a qualitative study that explores end-of-life decision-making processes for LTC home residents with dementia. Methods/design: This study is informed by two theoretical concepts. First, it draws on a relational model of citizenship. The model recognizes the pre-reflective dimensions of agency as fundamental to being human (irrespective of cognitive impairment) and thereby necessitates that we cultivate an environment that supports these dimensions. This study also draws from Smith's critical feminist lens to foreground the influence of gender relations in decision-making processes towards palliative care goals for people with dementia and reveal the discursive mediums of power that legitimize and sanction social relations. This study employs a critical ethnographic methodology. Through data collection strategies of interview, observation, and document review, this study examines decision-making for LTC home residents with dementia and their paid (LTC home workers) and unpaid (family members) care partners. Discussion: This research will expose the embedded structures and organizational factors that shape relationships and interactions in decision-making. This study may reveal new ways to promote equitable decision-making towards palliative care goals for LTC home residents with dementia and their care partners and help to improve their access to palliative care. [ABSTRACT FROM AUTHOR]

Background: Non-beneficial treatment is closely tied to inappropriate treatment at the end-of-life. Understanding the interplay between how and why these situations arise in acute care settings according to the various stakeholders is pivotal to informing decision-making and best practice at end-of-life. Aim: To define and understand determinants of non-beneficial and inappropriate treatments for patients with a non-cancer diagnosis, in acute care settings at the end-of-life. Design: Systematic review of peer-reviewed studies focusing on the above and conducted in upper-middle- and high-income countries. A narrative synthesis was undertaken, guided by Realist principles. Data sources: Cochrane; PubMed; Scopus; Embase; CINAHL; and Web of Science. Results: Sixty-six studies (32 qualitative, 28 quantitative, and 6 mixed-methods) were included after screening 4,754 papers. Non-beneficial treatment was largely defined as when the burden of treatment outweighs any benefit to the patient. Inappropriate treatment at the end-of-life was similar to this, but additionally accounted for patient and family preferences. Contexts in which outcomes related to non-beneficial treatment and/or inappropriate treatment occurred were described as veiled by uncertainty, driven by organizational culture, and limited by profiles and characteristics of involved stakeholders. Mechanisms relating to 'Motivation to Address Conflict & Seek Agreement' helped to lessen uncertainty around decision-making. Establishing agreement was reliant on 'Valuing Clear Communication and Sharing of Information'. Reaching consensus was dependent on 'Choices around Timing & Documenting of end-of-life Decisions'. Conclusion: A framework mapping determinants of non-beneficial and inappropriate end-of-life treatment is developed and proposed to be potentially transferable to diverse contexts. Future studies should test and update the framework as an implementation tool. Trial registration: PROSPERO Protocol CRD42021214137. [ABSTRACT FROM AUTHOR]

The provision of palliative care in the intensive care unit (ICU) is increasing. While some scholars have suggested the goals of palliative care to not be aligned with the ICU, some evidence show benefits of the integration. This review aimed to explore and synthesize research that identified barriers and facilitators in the provision of palliative care in the ICU. This review utilized Preferred Reporting Items for Systematic Reviews and Meta-Analyses Scoping Review guidelines based on population, concept, and context. We searched for eligible studies in five electronic databases (Scopus, PubMed, ProQuest, Science Direct, and Sage) and included studies on the provision of palliative care (concept) in the ICU (context) that were published in English between 2005-2021. We describe the provision of palliative care in terms of barriers and facilitators. We also describe the study design and context. A total of 14 papers was included. Several barriers and facilitators in providing palliative care in the ICU were identified and include lack of capabilities, family boundaries, practical issues, cultural differences. Facilitators of the provision of palliative care in an ICU include greater experience and supportive behaviors, i.e., collaborations between health care professionals. This scoping review demonstrates the breadth of barriers and facilitators of palliative care in the ICU. Hospital management can consider findings of the current review to better integrate palliative care in the ICU. [ABSTRACT FROM AUTHOR]

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Objectives: Pain appearance is one the most common complication of spastic hip disease in children with cerebral palsy (CP). It determines child and caregiver quality of life and life priorities. Reconstruction hip surgery should be considered as a treatment of choice. Some clinical conditions give the inability to perform such a procedure. In our paper, we would like to present four palliative methods of spastic hip dislocation treatment in children with CP. Material: We analyzed four groups of patients treated because of hip pain. Inclusion criteria were pain appearance (visual analog scale-11 or numeric rating scale-11) and hip joint dislocation (migration percentage >80%). All patients were admitted to our department between 2008 and 2018. In the first group, patients were treated only by steroid injections to hip joints; in the second group, patients were recruits after hip interposition arthroplasty with shoulder spacer; in the third group, they were patients after valgus subtrochanteric osteotomy (Schanz); and in the fourth group, these were patients after proximal femoral resection (Castle procedure). The minimal follow-up time was 2 years. The first group consisted of 15 patients (15 hips) with a mean age of 15.5 (8–17) years; the second group, 20 patients (24 hips) with a mean age of 14.2 (9–22.6) years; the third group, 22 patients (24 hips) with a mean age of 13.5 (7–20.5) years; and the fourth group, 10 patients (15 hips) with a mean age of 12.9 (7–17.6) years. Methods: Radiological evaluation was based on a standardized anteroposterior X-ray of the hip joints. Pain severity before surgery and at the last follow-up time was measured by visual analog scale-11. Parents or caregivers were asked about their child's pain during sitting, perineal care, and rest. During the visit, all caregivers were asked about treatment satisfaction (no 0 to max 10) and if they would decide again for the same surgery. Results: In all groups of patients, we observed a decrease in pain complaints. The observed reduction of pain in the first group was from 7.88 (4–10) to 3.08 (0–8) (p = 0.05), but results of injection were observed only for 4 months (2–8), and it has to be repeated (average: two times). In the second group, level of pain was reduced from 4.93 (1–10) to 0.93 (0–5) (p < 0.001); in the third group, from 6.22 (3–10) to 0.59 (0–6) (p < 0.001); and in the fourth group, pain reduces from 5.43 (2–10) to 2.13 (0–5) (p < 0.001). Observed changes concerned mostly sitting position and perineal care. The complication rate was in the second group, 6 of 24 cases of extraarticular ossification; in the third group, 2 of 24 cases with extraarticular ossification, two cases of revision surgery. In the fourth group, two cases needed another femoral resection. In the first group, five patients died during follow-up time, so they were excluded from the study. In the steroid injection group, parents' treatment evaluation was 6.83 (0–10), and only in three cases that they would resign from the treatment. In the hip interposition arthroplasty group, caregivers' evaluation was 7.41 (0–10), and in five cases, parents did not accept the surgery. In the Schanz osteotomy group, parents' evaluation was 5.9 (0–10), and in eight cases, caregivers would not repeat surgery. In the proximal femoral resection group, satisfaction was the highest, 8.3 (3–10), and only two parents would not decide for surgery again. Conclusion: All procedures can be considered as palliative treatment options for pain complain in a spastic hip joint dislocation in children with CP. Steroid injections to the hip joint need to be repeated, and with the follow-up time, it becomes less effective. Steroid injection seems to be the treatment of choice for patients with general anesthesia contraindications. Interposition arthroplasty of the hip joint seems to give better final results, but the highest parents' satisfaction surprisingly was observed in the proximal femoral resection group, but differences were not statistically significant. [ABSTRACT FROM AUTHOR]

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Background: Our hospice caters to referrals from the wide areas in the northern Indian territory. A descriptive analysis of hospice admissions can bring to light, the status of palliative care in the region overall. Aim: The aim was to assess the clinical and demographic profile of hospice admissions in New Delhi during the time period 2016–2017. Methods: Hospice admission records from the calendar year 2016 were digitized from paper charts, and statistical analysis was carried out using SPSS v21. Patient and caregiver demographic profile and dominant referral and utilization patterns were retrospectively assessed. Results: One hundred and fifty-four admissions (mean age 51.8 ± 15 years; 60% females) were recorded. Up to one-third of the patients (48, 31%) were single at the time of admission. Majority of the patients had below 10th grade literacy level (116, 75.3%) and belonged to low socioeconomic status. Two large tertiary care centers were the most common referrers (54.6%). The top three diagnoses were head-and-neck cancers (56, 36.4%), gastrointestinal cancers (27, 17.5%), and metastatic breast cancer (23, 14.9%). Major patient-reported debilities were pain (73%), dysphagia (51%), and incontinence (45%). The mean duration from diagnosis to hospice referral was 2.7 ± 0.7 years. Majority of the patients (76%) reported to have undergone some form of oncologic treatment. Up to two-thirds of the patients received opioids with or without additional supportive care. Conclusion: Pain, dysphagia, and incontinence were the most common reasons for hospice referral, with incontinence being significantly correlated with the divorced status. There were no differences in the prevalence of other symptoms with relation to the marital status. Data on hospice utilization patterns in India are limited to pilot experiences. More data are needed to drive national-level policies. [ABSTRACT FROM AUTHOR]

Palliative care (PC) has continued to be less available, underutilized, and unintegrated in many of the healthcare systems, especially in Africa. This scoping review synthesized existing published papers on adult PC in Africa, to report the barriers to PC and to assess the methodologies used in these studies. Eight electronic databases and Google Scholar were searched to identify relevant studies published between 2005 and 2018. Overall, 42 publications (34 empirical studies and 9 reviews) that reported issues related to barriers to adult PC were selected. Three themes identified were individual-level, system-level, and relational barriers. The studies reviewed predominantly utilized cross-sectional and retrospective study design, underscoring the need for more studies employing qualitative design. Findings highlight the need for health education, training opportunities, more funding, communication, and timely referral. Future works could focus on underlying factors to these barriers and ethno-religious perspectives to PC in Africa. [ABSTRACT FROM AUTHOR]

Two cases of primary distal femur osteosarcoma with subsequent metastasis to the abdomen are presented. In both cases, the development of abdominal metastasis was quickly followed by patient decline and death. A review of the literature was performed, assessing the presentation and survival of patients with osteosarcoma metastasized to the abdomen. As illustrated by the current cases and the literature review, abdominal metastasis in osteosarcoma is often a late manifestation and terminal prognostic indicator. Nonetheless, early detection and prompt intervention of this less common site of disease metastasis may improve patient care and palliative therapy. [ABSTRACT FROM AUTHOR]

An amendment to this paper has been published and can be accessed via a link at the top of the paper. [ABSTRACT FROM AUTHOR]

Background and Method: There is an absence of research on the prevalence of bereavement during early childhood and the relationship between childhood bereavement and socioeconomic status (SES) and this poses a challenge in both understanding and supporting children's bereavement experiences. Using longitudinal data from the Growing Up in Scotland study, which tracks the lives of three nationally representative cohorts of children, this paper aimed to address these gaps in research. It specifically drew on data from Birth Cohort 1 to document the recorded bereavements of 2,815 children who completed all 8 sweeps of data collection, from age 10 months to 10 years. Findings: The study found that 50.8% of all children are bereaved of a parent, sibling, grandparent or other close family member by age 8 and this rises to 62% by age 10. The most common death experienced was that of a grandparent or other close relative. The study also found that children born into the lowest income households are at greater risk of being bereaved of a parent or sibling than those born into the highest income households. Discussion and Conclusion: Given the prevalence of childhood bereavement and its relationship with disadvantage, this paper argues that there is an important need to understand bereavement as a universal issue that is affected by the social conditions in which a child becomes bereaved, as well as an individual experience potentially requiring specialist support. This paper thus seeks to position childhood bereavement more firmly within the public health approach to palliative and bereavement care discourse and contends that doing so provides a unique and comprehensive opportunity to better understand and holistically respond to the experience of bereavement during childhood. [ABSTRACT FROM AUTHOR]

Electrochemotherapy is a new therapeutic option for patients with locally spread melanoma. It is based on the phenomenon of reversible electroporation, i.e. a transient increase in permeability of cell membranes under the influence of an appropriately modulated electric field. This allows multiplication of toxicity of a cytostatic agent entering the tumour cell. It is highly effective, especially in the palliative treatment of cancers located in the integument of the human body (skin and subcutaneous tissue). Available literature provides a mandate both for the application of this method in the aforementioned cases as well as for further work on its development. This paper focuses on reviewing the literature concerning the use of electrochemotherapy in the treatment of melanoma. [ABSTRACT FROM AUTHOR]

Background: Recruitment for randomised controlled trials in palliative care can be challenging; disease progression and terminal illness underpin high rates of attrition. Research into participant decision-making in medicinal cannabis randomised controlled trials (RCTs) is very limited. Nesting qualitative sub-studies within RCTs can identify further challenges to participation, informing revisions to study designs and recruitment practices. This paper reports on findings from a qualitative sub-study supporting RCTs of medicinal cannabis for symptom burden relief in patients with advanced cancer in one Australian city.Methods: Semi-structured qualitative interviews were conducted with 48 patients with advanced cancer, eligible to participate in a medicinal cannabis RCT (n=28 who consented to participate in an RCT; n=20 who declined). An iterative and abductive approach to thematic analysis and data collection fostered exploration of barriers and enablers to participation.Results: Key enablers included participants' enthusiasm and expectations of medicinal cannabis as beneficial (to themselves and future patients) for symptom management, especially after exhausting currently approved options, and a safer alternative to opioids. Some believed medicinal cannabis to have anti-cancer effects. Barriers to participation were the logistical challenges of participating (especially due to driving restrictions and fatigue), reluctance to interfere with an existing care plan, cost, and concerns about receiving the placebo and the uncertainty of the benefit. Some declined due to concerns about side-effects or a desire to continue accessing cannabis independent of the study.Conclusions: The findings support revisions to subsequent medicinal cannabis RCT study designs, namely, omitting a requirement that participants attend weekly hospital appointments. These findings highlight the value of embedding qualitative sub-studies into RCTs. While some challenges to RCT recruitment are universal, others are context (population, intervention, location) specific. A barrier to participation found in research conducted elsewhere-stigma-was not identified in the current study. Thus, findings have important implications for those undertaking RCTs in the rapidly developing context of medical cannabis. [ABSTRACT FROM AUTHOR]

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Simple Summary: This review focuses on sleep in patients with advanced cancer. Cancer patients experience multiple symptoms and they receive concomitant medications. These are all factors that may affect sleep. In this paper, we present recommendations on sleep assessment in patients with advanced cancer and highlight cancer-related factors that may contribute to insomnia. Sleep is an essential aspect of health-related quality of life; therefore, it is important for health care providers to focus on sleep to improve patient care. Patients with advanced cancer experience multiple symptoms, with fluctuating intensity and severity during the disease. They use several medications, including opioids, which may affect sleep. Sleep disturbance is common in cancer patients, decreases the tolerability of other symptoms, and impairs quality of life. Despite its high prevalence and negative impact, poor sleep quality often remains unrecognized and undertreated. Given that sleep is an essential aspect of health-related quality of life, it is important to extend both the knowledge base and awareness among health care providers in this field to improve patient care. In this narrative review, we provide recommendations on sleep assessment in patients with advanced cancer and highlight cancer-related factors that contribute to insomnia. We also present direct implications for health care providers working in palliative care and for future research. [ABSTRACT FROM AUTHOR]

End-of-life medical services in the form of Hospice or Palliative care were initiated in the middle of 1900 in order to comfort the dying patients and support their families. There are a lot of similarities and differences between the two services. Many healthcare providers, including physicians, physician assistants, and nurses, are not fully trained or have comprehensive knowledge of these two types of end-of-life medical care. Through this paper, we aim to provide a thorough review of Hospice and Palliative care for internist and primary care physicians both in terms of indications or eligibility criteria; the similarities and differences between the two types of care; factors that disqualify an enrolled patient; and lastly, the role or use of Hospice and palliative care during COVID-19 pandemic. [ABSTRACT FROM AUTHOR]

Palliative care nurses experience huge pressures, which only increased with coronavirus disease 2019 (COVID-19). A reflection on the new demands for nursing care should include an evaluation of which evidence-based practices should be implemented in clinical settings. This paper discusses the impacts and challenges of incorporating coaching strategies into palliative care nursing. Evidence suggests that coaching strategies can foster emotional self-management and self-adjustment to daily life among nurses. The current challenge is incorporating this expanded knowledge into nurses' coping strategies. Coaching strategies can contribute to nurses' well-being, empower them, and consequently bring clinical benefits to patients, through humanized care focused on the particularities of end-of-life patients and their families. [ABSTRACT FROM AUTHOR]

Background: Healthcare professionals play a key role in interacting with children who have a parent with a life-limiting illness. While playing such a role can be challenging, not much is known about how such interactions impact these professionals and affect their ability to render support. Methods: Four databases were searched with the intention to conduct a qualitative systematic review. Articles were selected based on pre-determined inclusion and exclusion criteria. Their quality was assessed using the tool "Standard Quality Assessment Criteria for Evaluating Primary Research Papers from a Variety of Fields". Findings were analysed using thematic analysis techniques outlined by Thomas and Harden as well as Sandelowski and Barroso. Review was registered with the Review Registry database. Results: Three themes emerged – healthcare professionals' discomfort; their assumptions and actions; and potentiating workplace factors. The discomfort had several dimensions: fear of making a situation worse, concern of not being able to cope with emotionally charged situations, and internal conflict that arose when their values clashed with family dynamics. Conclusion: Healthcare professionals' sense of discomfort was very pronounced. This discomfort, together with their assumptions, could impact their ability to support children. The organisation played an important role, which was reflected in the work culture, workflow and ability to collaborate with other agencies involved in supporting children. The discomfort was mitigated by having more professional experience, workplace support systems and training on communicating with children. It was apparent that the individual professional did not work alone when supporting children but alongside others within an organisation. As such, issues raised in this review will benefit from multi-faceted solutions. [ABSTRACT FROM AUTHOR]

Background: Access to affordable, appropriate housing is one of the key social determinants of health, affecting well-being across the lifecourse. However, beyond a recognition that housing quality is linked to place of death, little is known about the ways in which housing status impacts social, emotional, and practical aspects of dying and bereavement. Method: The Checking Out project is a qualitative study aiming to explore the ways in which socio-economic status impacts people's experiences of, and attitudes towards, death, dying, and bereavement in the United Kingdom. Qualitative interviews were carried out with 14 bereaved individuals with experience of poverty at end of life or in bereavement, and 15 professionals supporting individuals in low-income communities. Interviews were conducted via phone/video call, and data include experiences of end of life and bereavement both before and during the pandemic. Transcripts were examined using thematic analysis. Results: Housing emerged as an important factor affecting people's experiences, with 7 of the 14 bereaved individuals and all except 1 of the professionals discussing housing-related issues. Participants described ways in which unsuitable housing and housing insecurity impacted practical aspects of dying but also emotional and social well-being at end of life. Housing-related issues affected both patients and their families, though families found it difficult to air these concerns when their relative was dying. Conclusion: The paper demonstrates how trusted professionals are able to advocate or address the issues faced by bereaved individuals and suggests implications for policy and practice. A greater awareness of the potential impact of housing status across public services, including healthcare practitioners, welfare support, and housing providers, could better support patients and practitioners to address these issues proactively. Housing providers and policy-makers should be included as key partners in collaborative public health approaches to palliative care. [ABSTRACT FROM AUTHOR]

Educating and raising awareness among lay members of the public about palliative care can significantly improve the care for terminally ill patients and their quality of life. This paper reports on the survey aimed at assessing the experience and expectations of participants in the Last Aid course launched in Slovenia in 2019 to train hospice volunteers and promote dialogue on death and dying. The course implementation was supported by materials prepared, translated, and/or adapted from German under the PO-LAST project, which linked Slovenian medical and healthcare professionals, hospice representatives, and university students. The Last Aid course follows an international four-module curriculum that has been successfully applied in 18 countries so far. In Slovenia, the course was delivered 30 times with 21 in-person deliveries and 9 online events attended by 450 participants of different sexes, ages, and professions. The surveyed population included 250 people who returned the evaluation questionnaires by October 2020. The aim of the analysis was to gain insight that can be applied broadly in future work and research on adult education on palliative care and the erasure of death-related taboos. [ABSTRACT FROM AUTHOR]

Palliative care is comprised of an interdisciplinary team (IDT) approach with members from different disciplines who collaboratively work together to reduce multidimensional components of pain and suffering and improve quality of life for patients coping with a terminal illness. Psychosocial team members are integral to the palliative care IDT and provide expertise in assessment and empirically validated interventions to address psychological distress. The following paper will provide a review of different facets of psychological distress experienced by advanced cancer patients such as psychological disorders, existential distress, spiritual distress, caregiver distress, parental distress, and grief. Finally, an overview of commonly used screening and assessment tools as well as psychological interventions relevant for the palliative care population is presented. [ABSTRACT FROM AUTHOR]

Background: In ageing Western societies, many older persons live with and die from cancer. Despite that present-day healthcare aims to be patient-centered, scientific literature has little knowledge to offer about how cancer and its treatment impact older persons' various outlooks on life and underlying life values. Therefore, the aims of this paper are to: 1) describe outlooks on life and life values of older people (≥ 70) living with incurable cancer; 2) elicit how healthcare professionals react and respond to these. Methods: Semi-structured qualitative interviews with 12 older persons with advanced cancer and two group interviews with healthcare professionals were held and followed by an analysis with a grounded theory approach. Results: Several themes and subthemes emerged from the patient interview study: a) handling incurable cancer (the anticipatory outlook on "a reduced life", hope and, coping with an unpredictable disease) b) being supported by others ("being there", leaving a legacy, and having reliable healthcare professionals) and; c) making end-of-life choices (anticipatory fears, and place of death). The group interviews explained how healthcare professionals respond to the abovementioned themes in palliative care practice. Some barriers for (open) communication were expressed too by the latter, e.g., lack of continuity of care and advance care planning, and patients' humble attitudes. Conclusions: Older adults living with incurable cancer showed particular outlooks on life and life values regarding advanced cancer and the accompanying last phase of life. This paper could support healthcare professionals and patients in jointly exploring and formulating these outlooks and values in the light of treatment plans. [ABSTRACT FROM AUTHOR]

This paper aims to explore how to help terminally ill patients and their families find meaning in their suffering from the logotherapeutic perspective, which is the essence of palliative care. For this purpose, this paper examines the main concepts and principles of logotherapy, and specific approaches based on the logotherapeutic perspective to help terminally ill patients and their families find meaning in life are presented. Emphasizing the will to meaning as the primary motive to explain human behaviors and based on its unique perspective of the human being, which is called the dimensional ontology, logotherapy considers the human being to consist of the body, the mind, and the spirit. The dimensional ontology implies that the human being "has" the body and the mind, but the human being "is" the spirit itself. Therefore, even though a human being can be sick physically or psychologically, Accordingly, it is essential to help these patients realize that they are not their illnesses, but just have them, and to rise above themselves to reach out toward something meaningful or someone to love; despite their suffering, they can still do something meaningful, even in a small way. Above all, the most important thing for these patients is to acknowledge that they have already lived a meaningful life and to believe that their meaningful work has been safely preserved in the past and nothing can take it from them, for as spiritual beings, their lives have been meaningful unconditionally. [ABSTRACT FROM AUTHOR]

The importance of linking evidence into practice and policy is recognised as a key pillar of a prudent approach to healthcare; it is of importance to healthcare professionals and decision-makers across the world in every speciality. However, rapid access to evidence to support service redesign, or to change practice at pace, is challenging. This is particularly so in smaller specialties such as Palliative Care, where pressured multidisciplinary clinicians lack time and skill sets to locate and appraise the literature relevant to a particular area. Therefore, we have initiated the Palliative Care Evidence Review Service (PaCERS), a knowledge transfer partnership through which we have developed a clear methodology to conduct evidence reviews to support professionals and other decision-makers working in palliative care.PaCERS methodology utilises modified systematic review methods as there is no agreed definition or an accepted methodology for conducting rapid reviews. This paper describes the stages involved based on our iterative recent experiences and engagement with stakeholders, who are the potential beneficiaries of the research. Uniquely, we emphasise the process and opportunities of engagement with the clinical workforce and policy-makers throughout the review, from developing and refining the review question at the start through to the importance of demonstrating impact. We are faced with the challenge of the trade-off between the timely transfer of evidence against the risk of impacting on rigour. To address this issue, we try to ensure transparency throughout the review process. Our methodology aligns with key principles of knowledge synthesis in defining a process that is transparent, robust and improving the efficiency and timeliness of the review.Our reviews are clinically or policy driven and, although we use modified systematic review methods, one of the key differences between published review processes and our review process is in our relationship with the requester. This streamlining approach to synthesising evidence in a timely manner helps to inform decisions faced by clinicians and decision-makers in healthcare settings, supporting, at pace, knowledge transfer and mobilisation. [ABSTRACT FROM AUTHOR]

Introduction: There is a significant lack of palliative care access and service delivery in the Indian cancer institutes. In this paper, we describe the development, implementation, and evaluation of a palliative care capacity-building program in Indian cancer institutes. Methods: Participatory action research method was used to develop, implement and evaluate the outcomes of the palliative care capacity-building program. Participants were healthcare practitioners from various cancer institutes in India. Training and education in palliative care, infrastructure for palliative care provision, and opioid availability were identified as key requisites for capacity-building. Researchers developed interventions towards capacity building, which were modified and further developed after each cycle of the capacity-building program. Qualitative content analysis was used to develop an action plan to build capacity. Descriptive statistics were used to measure the outcomes of the action plan. Results: Seventy-three healthcare practitioners from 31 cancer treatment centres in India were purposively recruited between 2016 and 2020. The outcome indicators of the project were defined a priori, and were audited by an independent auditor. The three cycles of the program resulted in the development of palliative care services in 23 of the 31 institutes enrolled in the program. Stand-alone palliative care outpatient services were established in all the 23 centres, with the required infrastructure and manpower being provided by the organization. Morphine availability improved and use increased in these centres, which was an indication of improved pain management skills among the participants. The initiation and continuation of education, training, and advocacy activities in 20 centres suggested that healthcare providers continued to remain engaged with the program even after the cessation of their training cycle. Conclusion: This program illustrates how a transformational change at the organizational and individual level can lead to the development of sustained provision of palliative care services in cancer institutes. [ABSTRACT FROM AUTHOR]

Background: Palliative care involves the care for patients with severe and advanced diseases with a focus on quality of life and symptom management. Integration of palliative care with curative and/or chronic care is expected to lead to better results in terms of quality of life and reduced costs. Although initiatives in different countries in Europe choose different structures to integrate care, they face similar challenges when it comes to creating trust and aligning visions, cultures and professional values. This paper sets out to answer the following research question: what roles and attitudes do palliative care professionals need to adopt to further integrate palliative care in Europe? Methods: As part of the European Union (EU)-funded research project InSup-C (Integrated Supportive and Palliative Care). (2012-2016), 19 semi-structured group interviews with 136 (palliative) care professionals in 5 European countries (Germany, the United Kingdom, Belgium, the Netherlands, Hungary) were conducted. A thematic analysis was conducted. Results: Integration of palliative care calls for diplomatic professionals that can bring a cultural shift: to get palliative care, with its particular focus on the four dimensions (physical, psychological, social, spiritual), integrated into historically established medical procedures and guidelines. This requires (a) to find an entrance (for telling a normative story), and (b) to maintain and deepen relationships (in order to build trust). It means using the appropriate words and sending a univocal team message to patients and being grateful, modest, and aiming for a quiet revolution with curation oriented healthcare professionals. Conclusion: Diplomacy appears to be essential to palliative care providers for realizing trust and what can be defined as normative integration between palliative and curative and/or chronic medicine. It requires a practical wisdom about the culture and goals of regular care, as well as keeping a middle road between assimilating with values in regular medicine and standing up for the basic values central to palliative care. [ABSTRACT FROM AUTHOR]

Referral to an endoscopist is often done once curative resection is no longer an option for cholangiocarcinoma management. In such cases, palliation has become the main objective of the treatment. Photodynamic therapy and radiofrequency ablation can be performed to achieve palliation, with both procedures associated with improved stent patency and survival. Despite the greatly increased cost and association with photosensitivity, photodynamic therapy allows transmission to the entire biliary tree. In contrast, radiofrequency ablation is cheaper and faster to apply, but requires intraductal contact. This paper reviews both modalities and compares their efficacy and safety for bile duct cancer palliation. [ABSTRACT FROM AUTHOR]

Background: The SARS-CoV-2 pandemic has presented major challenges to the health system. Despite high acute case numbers, patients without Covid-19 still need to be cared for. Due to the severity of the disease and a possible stressful overall situation, patients with palliative care needs also require comprehensive care during pandemic times. In addition to specialized palliative care facilities, this also takes place in non palliative care wards. In order to ensure this general palliative care also in pandemic times, the experience of the staff should be used. The aim of this paper is to examine challenges and possible solutions for general palliative care inpatients in relation to the care of seriously ill and dying patients and their relatives. Methods: Qualitative semi-structured focus groups were conducted online for the study. Participants were staff from intensive care or isolation wards or from units where vulnerable patients (e.g. with cognitive impairment) are cared for. The focus groups were recorded and subsequently transcribed. The data material was analysed with the content structuring content analysis according to Kuckartz. Results: Five focus groups with four to eight health care professionals with various backgrounds were conducted. Fifteen main categories with two to eight subcategories were identified. Based on frequency and the importance expressed by the focus groups, six categories were extracted as central aspects: visiting regulations, communication with relatives, hygiene measures, cooperation, determination of the patients will and the possibility to say good bye. Conclusion: The pandemic situation produced several challenges needing specific solutions in order to manage the care of seriously ill and dying patients. Especially visiting needs regulation to prevent social isolation and dying alone. Finding alternative communication ways as well as interprofessional and interdisciplinary cooperation is a precondition for individualised care of seriously ill and dying patients and their relatives. Measures preventing infections should be transparently communicated in hospitals. [ABSTRACT FROM AUTHOR]

Background: Although the majority of German patients in a palliative state prefer to die at home, the actual place of death is most often a hospital. Unplanned hospital readmissions (UHA) not only contradict most patients' preferences but also increase the probability of an aggressive end-of-life treatment. As limited knowledge is available which factors contribute to an UHA, the PRePP-project aims to explore predictors related to informal caregivers (IC) as well as medical and structural factors. Methods: This prospective, observational, mono-centric study will assess structural and medical factors as well as ICs' psychological burden throughout seven study visits. Starting in April 2021 it will consecutively include 240 patients and their respective IC if available. Standardized measures concerning ICs' Quality of Life (WHOQOL-BREF), psychological distress (NCCN-Distress Thermometer), anxiety (GAD-7) and depressiveness (PHQ-9) will be assessed. If participants prefer, assessment via phone, browser-based or paper-based will be conducted. Medical records will provide routinely assessed information concerning patient-related characteristics such as gender, age, duration of hospital stay and medical condition. Nurse-reported data will give information on whether hospitalization and death occurred unexpectedly. Data will be progressed pseudonymized. Multivariable regression models will help to identify predictors of the primary endpoint "unplanned hospital admissions". Discussion: The PRePP-project is an important prerequisite for a clinical risk assessment of UHAs. Nevertheless, it faces several methodological challenges: as it is a single center study, representativity of results is limited while social desirability might be increased as the study is partly conducted by the treatment team. Furthermore, we anticipated an underrepresentation of highly burdened participants as they might refrain from participation. Trial registration: This study was retrospectively registered 19 October 2021 at clinicaltrials.gov (NCT05082389). https://clinicaltrials.gov/ct2/show/NCT05082389 [ABSTRACT FROM AUTHOR]

Palliative care is an interdisciplinary care to optimize physical, psychosocial, and spiritual symptoms of patients and their families whose quality of life is impaired by serious, life-limiting illness. In 2021, the importance of providing palliative care in the intensive care unit (ICU) is well recognized by various studies to alleviate physical symptoms due to invasive treatments, to set patient-centered goals of care, and to provide end-of-life care. This paper summarizes the evidence known to date on primary palliative care delivered in the ICU settings. We will then discuss the potential benefits and harms of primary palliative care so that critical care clinicians are better equipped to decide what services might best improve the palliative care needs in their ICUs. [ABSTRACT FROM AUTHOR]

The article introduces a series of papers published within the issue, including one on digital storytelling as a tool for cancer education for Indigenous community health practitioners in Alaska, another on a community-based palliative care program in Six Nations in the Grand River Territory and a paper on the Crow community's perceptions of the link between loss and chronic illness.

Introduction: The Liverpool Care Pathway for the Dying Patient is an instrument to deliver integrated care for patients in their last hours of life. Originally a paper-based system, this study investigates the feasibility of an electronic version. Methods: An electronic Liverpool Care Pathway was implemented in a specialized palliative care unit of a German university hospital. Its use is exemplified by means of auditing and analysis of the proportion of recorded items. Results: In the years 2013 and 2014 the electronic Liverpool Care Pathway was used for the care of 159 patients. The uptake of the instrument was high (67%). Most items were recorded. Apart from a high usability, the fast data retrieval allows fast analysis for auditing and research. Conclusions and discussion: The electronic instrument is feasible in a computerized ward and has strong advantages for retrospective analysis. Trial registration: Internal Clinical Trial Register of the Medical Faculty, Heinrich Heine University Düsseldorf, No. 2015124683 (7 December 2015). [ABSTRACT FROM AUTHOR]

Background: The concept of care for people in a critical or even terminal health condition, who are in the last stage of their life, has become the mission of palliative care facilities. Therefore, the life of a sick patient poses a number of challenges for health care services to make sure that medical services are tailored to the trajectory of the disease, as well as the various needs, preferences and resources of patients and their families. Methods: Health systems financed from public funds need to adopt new methods of management to meet the high and arising demand for a long-term care. There are several ways of assessing the demand for long-term care services. The method recommended by the author and presented in more detail in this paper is the one relying on grey systems, which enables the estimation of forecasting models and, finally, actual forecasts of the number of potential future patients. Results: GST can be used to make predictions about the future behaviour of the system, which is why this article aims to present the possibility of using the first-order grey model GM (1,1) in predicting the number of patients of palliative care facilities in Poland. The analysis covers the data from 2014 to 2019, whereas the prediction of the number of patients has been additionally formulated for 2020. Conclusions: Health systems, particularly publicly funded ones, are characterised by a certain kind of incompleteness and uncertainty of data on the structure and behaviour of its individual components (e.g. potential patients or payers). The present study aims to prove how simple and effective grey systems models are in the decision-making process. [ABSTRACT FROM AUTHOR]

Interpreting palliative care conversations can be stressful due to the emotions and complex terminology involved, as well as the emphasis on fostering patient autonomy and disclosing prognosis transparently. To improve the quality of care for patients speaking different languages, a palliative care physician and social worker approached the director of interpreter services offering to provide sessions to address vicarious trauma. With interpreter input, they developed a series of monthly Dialogues in Palliative Care. This paper recounts how this supportive educational endeavor became a holistic approach to medical interpreters' occupational safety and health. The relationship between the clinicians and interpreters enabled a smooth transition to weekly emotional support for the interpreters and the modeling of a culture of care during the Covid-19 pandemic. Interpreters are integral members of the health care team and are uniquely vulnerable to emotional stress. They deserve a work environment that mitigates vicarious trauma. [ABSTRACT FROM AUTHOR]

Background: The first International Consensus Conference for Advanced Breast Cancer (ABC1) took place 10 years ago in November 2011. The rationale was – and still is – to standardize treatment of advanced breast cancer (ABC) based on the available evidence and to ensure that worldwide all breast cancer patients receive adequate treatment and access to new therapies. Rationale for the Manuscript: The 6th International Consensus Conference for ABC (ABC6) took place from November 4 to 6, 2021 and was the first in a purely online format, due to the COVID-19 pandemic. In the present manuscript, a working group of German breast cancer experts comments on the voting results of the ABC6 panelists regarding their applicability for routine clinical practice in Germany. Method: The ABC6 votes mainly include modified or new statements. With regard to all statements not modified for the ABC6 consensus, the German experts refer to the published paper of the ABC5 consensus. The German experts base their comments on the current recommendations of the Breast Committee of the Gynecological Oncology Working Group (Arbeitsgemeinschaft Gynäkologische Onkologie, AGO Mamma). Topics: ABC6 focused on new treatment options and their implications for clinical practice. Optimal therapy sequencing for example was one of the issues. To solve the challenge of a more individualized treatment, precision medicine is fundamental. Oligometastatic disease, brain metastases and adequate supportive and palliative care were also addressed. Of special interest was the treatment of inoperable locally advanced breast cancer, which was discussed as a separate topic. As in previous years, patient advocates from around the world were an integral part of the ABC6 conference and had a major input into the consensus. [ABSTRACT FROM AUTHOR]

The unexpected lockdown announced by the Government of India in March 2020 in response to the pandemic left the coastal community in Kerala deprived of not only essential amenities but also healthcare. Some poverty-ridden, over-crowded coastal regions had been declared as critical containment zones with severe restriction of movement, adding to their vulnerability. People with serious health-related suffering (SHS) in this community required urgent relief. A group of educated youth in the community joined hands with a non-governmental organisation specialised in palliative care (PC) services and strived to find the best possible solutions to address the healthcare needs in their community. This paper reports the collaborative activities done during the pandemic in the coastal region and compares the activities with steps proposed by the WHO to develop community-based PC (CBPC). By engaging, empowering, educating, and coordinating a volunteer network and providing the required medical and nursing support, the programme was able to provide needed services to improve the quality of life of 209 patients and their families who would have been left with next-to-no healthcare during the pandemic. We conclude that even in the context of much poverty, delivery of CBPC with the engagement of compassionate people in the community can successfully reduce SHS. [ABSTRACT FROM AUTHOR]

There is an ongoing development in the paediatric palliative care (PPC) program in Southeast Asia (SEA). However, the implementation process has not been clearly understood among lower-middle-income countries (LMICs) in this region. The purpose of this paper is to review and synthesise research about the implementation process of 7 identified LMICs in the SEA: Cambodia, Indonesia, Myanmar, Lao PDR, the Philippines, Timor-Leste, and Vietnam. An integrative review utilising Whittemore and Knafi's five-stage process was employed. Electronic searches of CINAHL, Web of Science, ProQuest, and Google Scholar (no year restriction) were conducted. From the 7599 articles retrieved, only 11 met the eligibility criteria. Each article was appraised for methodological quality (QualSyst tool and AACODS checklist) and constant comparison methods were used. Two overarching themes emerged in this review - the gaps in PPC standards, practice framework, and guidelines and the PPC challenges and implementation strategies. Understanding the implementation science of PPC among LMICs in the SEA region addresses the gap between idealism and realism. It provides reliable information in the development of strategic work plans that will improve the implementation process and promote the translation of EBIs into practice significant to the quality of paediatric patient outcomes. [ABSTRACT FROM AUTHOR]