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Background: In combination with non-pharmacological interventions, opioids may safely reduce chronic breathlessness in patients with severe illness. However, implementation in clinical practice varies. Aim: To synthesise the published literature regarding health professionals', patients' and families' views on the use of opioids for chronic breathlessness, identifying issues which influence implementation in clinical practice. Design: Systematic review and synthesis using the five-stage framework synthesis method. Data sources: Three electronic databases (MEDLINE, Embase via OVID, ASSIA via Proquest) were searched (March 2020) using a predefined search strategy. Studies were also citation chained from key papers. Papers were screened against a priori eligibility criteria. Data were extracted from included studies using the framework synthesis method. Qualitative and quantitative data were synthesised using the pillar process. Included studies were critically appraised using the Mixed-Methods Appraisal Tool. Results: After de-duplication, 843 papers were identified. Following screening, 22 studies were included. Five themes were developed: (i) clinician/patient characteristics, (ii) education/knowledge/experience, (iii) relationship between clinician/family, (iv) clinician/patient fear of opioids and (v) regulatory issues. Conclusions: There are significant barriers and enablers to the use of opioids for the symptomatic reduction of chronic breathlessness based on the knowledge, views and attitudes of clinicians, patients and families. Clinicians' interactions with patients and their families strongly influences adherence with opioid treatment regimens for chronic breathlessness. Clinicians', patients' and families' knowledge about the delicate balance between benefits and risks is generally poor. Education for all, but particularly clinicians, is likely to be a necessary (but insufficient) factor for improving implementation in practice. [ABSTRACT FROM AUTHOR]

Background: The anticipatory prescribing of injectable medications to provide end-of-life symptom relief is an established community practice in a number of countries. The evidence base to support this practice is unclear. Aim: To review the published evidence concerning anticipatory prescribing of injectable medications for adults at the end of life in the community. Design: Systematic review and narrative synthesis. Registered in PROSPERO: CRD42016052108, on 15 December 2016 (https://www.crd.york.ac.uk/prospero/display%5frecord.php?RecordID=52108). Data sources: Medline, CINAHL, Embase, PsycINFO, Web of Science, Cochrane Library, King's Fund, Social Care Online, and Health Management Information Consortium databases were searched up to May 2017, alongside reference, citation, and journal hand searches. Included papers presented empirical research on the anticipatory prescribing of injectable medications for symptom control in adults at the end of life. Research quality was appraised using Gough's 'Weight of Evidence' framework. Results: The search yielded 5099 papers, of which 34 were included in the synthesis. Healthcare professionals believe anticipatory prescribing provides reassurance, effective symptom control, and helps to prevent crisis hospital admissions. The attitudes of patients towards anticipatory prescribing remain unknown. It is a low-cost intervention, but there is inadequate evidence to draw conclusions about its impact on symptom control and comfort or crisis hospital admissions. Conclusion: Current anticipatory prescribing practice and policy is based on an inadequate evidence base. The views and experiences of patients and their family carers towards anticipatory prescribing need urgent investigation. Further research is needed to investigate the impact of anticipatory prescribing on patients' symptoms and comfort, patient safety, and hospital admissions. [ABSTRACT FROM AUTHOR]

Background: During the terminal withdrawal of life-sustaining measures for intensive care patients, the removal of respiratory support remains an ambiguous practice. Globally, perceptions and experiences of best practice vary due to the limited evidence in this area. Aim: To identify, appraise and synthesise the latest evidence around terminal withdrawal of mechanical ventilation in adult intensive care units specific to perceptions, experiences and practices. Design: Mixed methods systematic review and narrative synthesis. A review protocol was registered on PROSPERO (CRD42018086495). Data sources: Four electronic databases were systematically searched (Medline, Embase, CENTRAL and CINAHL). Obtained articles published between January 2008 and January 2020 were screened for eligibility. All included papers were appraised using relevant appraisal tools. Results: Twenty-five papers were included in the review. Findings from the included papers were synthesised into four themes: 'clinicians' perceptions and practices'; 'time to death and predictors'; 'analgesia and sedation practices'; 'physiological and psychological impact'. Conclusions: Perceptions, experiences and practices of terminal withdrawal of mechanical ventilation vary significantly across the globe. Current knowledge highlights that the time to death after withdrawal of mechanical ventilation is very short. Predictors for shorter duration could be considered by clinicians and guide the choice of pharmacological interventions to address distressing symptoms that patients may experience. Clinicians ought to prepare patients, families and relatives for the withdrawal process and the expected progression and provide them with immediate and long-term support following withdrawal. Further research is needed to improve current evidence and better inform practice guidelines. [ABSTRACT FROM AUTHOR]

Background: Addressing the concerns of family members is an important aspect of palliative and end-of-life care. One aspect that commonly causes family caregivers concern is the decline of patients' oral fluid intake in the last few days of life. Aim: To map the narratives in which family members' experiences of witnessing the diminishing drinking of a dying relative have been researched, review the findings within each narrative and consider directions for future research. Design: An adapted meta-narrative review approach. Data Sources: The Cumulative Index of Nursing and Applied Health Literature, Medline, PsycINFO, Psycharticles and Scopus databases were searched for relevant research published between January 1982 and December 2017. Quality was assessed using the Quality Assessment and Review Instrument. Results: A total of 22 papers met the inclusion criteria. No study focused specifically on the experiences of family members when witnessing the diminishing drinking of dying relatives. However, research about diminishing drinking was identified within studies broadly focusing on cancer cachexia, clinical decision-making about hydration and/or nutrition and support in a hospice context. The research indicates that family members' experiences of diminishing drinking vary with their views about the significance of drinking, dying well and their expectations of themselves and healthcare professionals. Conclusion: While some understanding of the topic can be inferred from research in related areas, there is a paucity of information specifically about family members' experiences when witnessing the diminishing drinking of a dying relative. [ABSTRACT FROM AUTHOR]

Background: Despite a fast-paced environment, the emergency clinician has a duty to meet the palliative patient's needs. Despite suggested models and interventions, this remains challenging in practice. Aim: To raise awareness of these challenges by exploring the experience of palliative care patients and their families and informal carers attending the emergency department, and of the clinicians caring for them. Design: Qualitative systematic literature review and thematic synthesis. Search terms related to the population (palliative care patients, family carers, clinicians), exposure (the emergency department) and outcome (experience). The search was international but restricted to English and used a qualitative filter. Title, abstracts and, where retrieved, full texts were reviewed independently by two reviewers against predefined inclusion criteria arbitrated by a third reviewer. Studies were appraised for quality but not excluded on that basis. Data sources: MEDLINE [1946-], Embase[1947-], CINAHL [1981-] and PsycINFO [1987-] with a bibliography search. Results: 19 papers of 16 studies were included from Australia (n = 5), the United Kingdom (n = 5), and United States (n = 9) representing 482 clinical staff involved in the emergency department (doctors, nurses, paramedics, social workers, technicians), 61 patients and 36 carers. Nine descriptive themes formed three analytic themes: 'Environment and Purpose', 'Systems of Care and Interdisciplinary Working' and 'Education and Training'. Conclusion: In the included studies, provision of emergency palliative care is a necessary purpose of the emergency department. Failure to recognise this, gain the necessary skills or change to systems better suited to its delivery perpetuates poor implementation of palliative care in this environment. [ABSTRACT FROM AUTHOR]

Background: Ethical issues arise daily in the delivery of palliative care. Despite much (largely theoretical) literature, evidence from specialist palliative care practitioners about day-to-day ethical challenges has not previously been synthesised. This evidence is crucial to inform education and adequately support staff. Aim: To synthesise the evidence regarding the ethical challenges which specialist palliative care practitioners encounter during clinical practice. Design: Systematic review with narrative synthesis (PROSPERO registration CRD42018105365). Quality was dual-assessed using the Mixed-Methods Appraisal Tool. Tabulation, textural description, concept mapping and thematic synthesis were used to develop and present the narrative. Data sources: Seven databases (MEDLINE, Philosopher's Index, EMBASE, PsycINFO, LILACS, Web of Science and CINAHL) were searched from inception to December 2019 without language limits. Eligible papers reported original research using inductive methods to describe practitioner-reported ethical challenges. Results: A total of 8074 records were screened. Thirteen studies from nine countries were included. Challenges were organised into six themes: application of ethical principles; delivering clinical care; working with families; engaging with institutional structures and values; navigating societal values and expectations; philosophy of palliative care. Challenges related to specific scenarios/contexts rather than the application of general ethical principles, and occurred at all levels (bedside, institution, society, policy). Conclusion: Palliative care practitioners encounter a broad range of contextual ethical challenges, many of which are not represented in palliative care ethics training resources, for example, navigating institutional policies, resource allocation and inter-professional conflict. Findings have implications for supporting ethical practice and training practitioners. The lack of low- and middle- income country data needs addressing. [ABSTRACT FROM AUTHOR]

Background: Palliative care has been identified as an area of low outpatient referral from our emergency department, yet palliative care has been shown to improve the quality of patient's lives. Aim: This study investigates both provider and patient perspectives on palliative care for the purpose of identifying barriers to increased palliative care utilization within our healthcare system. Design: Two surveys were developed, one for patients/caregivers and one for healthcare providers. Setting/participants: This was a single-center study completed at a quaternary academic emergency department. A survey was sent to emergency medicine providers with 47% response rate. Research staff approached Emergency Department patients who had been identified to be high risk to fill out paper surveys with 76% response rate. Results: Only 28% of patients had already undergone palliative care, with an additional 25% interested in palliative care. Nearly half of the patients felt that they needed more resources to prevent hospital visits. Patients identified low understanding of palliative care and difficulty accessing appointments as barriers to consultation. Among providers, 98% indicated that they had patients who would benefit from palliative care. A majority of providers highlighted patient understanding of palliative care and access to appointments as barriers to palliative care. Notably, 52% of providers reported that emergency medicine provider knowledge was a barrier to palliative care consultation. Conclusions: Despite emergency department patients' self-identified need for resources and emergency medicine providers' recognition of patients who would benefit from palliative care, few patients receive palliative care consultation. [ABSTRACT FROM AUTHOR]

Background: Healthcare providers working in hospitals are frequently exposed to patients with palliative care needs. For most patients, these reflect non-specialist rather than specialist palliative care needs. Embedding palliative care principles early in patients' disease trajectories within acute care delivery in hospitals, however, is a challenge. How to best understand the experiences of those providing non-specialist palliative care in hospitals has not been systematically assessed. Aim: To synthesise the evidence on healthcare providers' views and experiences of non-specialist palliative care in hospitals. Design: A qualitative systematic review and thematic synthesis using Thomas and Harden's thematic synthesis framework. Data sources: Databases of MEDLINE, CINAHL, PsycINFO and EMBASE were searched from date of inception to March 2018. Studies were eligible for inclusion if they reported on healthcare providers' views and experiences of non-specialist palliative care in hospitals. Studies were appraised for quality but not excluded on that basis. The review was prospectively registered with the International Prospective Register of Systematic Reviews. Results: Thirty-nine papers of 37 studies were included, representing 985 hospital healthcare providers' views and experiences. Four major analytical themes emerged; 'Understanding of Palliative Care', 'Complexities of Communication', 'Hospital Ecosystem' and 'Doctors and Nurses – a Different Lens'. Conclusions: Non-specialist palliative care in hospitals is operationalised as care in the last weeks and days of life. The organisation of acute care, inter-disciplinary working practices, clinician attitudes, poor communication structures and lack of education and training in palliative care principles exacerbates poor implementation of this care earlier for patients in hospitals. [ABSTRACT FROM AUTHOR]

Background: Palliative care for children and young people is a growing global health concern with significant resource implications. Improved understanding of how palliative care provides benefits is necessary as the number of children with life-limiting and life-threatening conditions rises. Aim: The aim is to investigate beneficial outcomes in palliative care from the perspective of children and families and the contexts and hidden mechanisms through which these outcomes can be achieved. Design: This is a systematic realist review following the RAMESES standards. A protocol has been published in PROSPERO (registration no: CRD42018090646). Data sources: An iterative literature search was conducted over 2 years (2015–2017). Empirical research and systematic reviews about the experiences of children and families in relation to palliative care were included. Results: Sixty papers were included. Narrative synthesis and realist analysis led to the proposal of context–mechanism–outcome configurations in four conceptual areas: (1) family adaptation, (2) the child's situation, (3) relationships with healthcare professionals and (4) access to palliative care services. The presence of two interdependent contexts, the 'expert' child and family and established relationships with healthcare professionals, triggers mechanisms, including advocacy and affirmation in decision-making, which lead to important outcomes including an ability to place the emphasis of care on lessening suffering. Important child and family outcomes underpin the delivery of palliative care. Conclusion: Palliative care is a complex, multifactorial intervention. This review provides in-depth understanding into important contexts in which child and family outcomes can be achieved so that they benefit from palliative care and should inform future service development and practice. [ABSTRACT FROM AUTHOR]

Background: Informal carers of cancer patients with cachexia face additional challenges to those encountered by informal carers in general because of the central role food and eating play in everyday life. Patient weight loss and anorexia, core features of cancer cachexia, are frequent causes of distress in caregivers. Identification of quality of life issues can inform the development of interventions for both caregivers and patients and facilitate communication with healthcare professionals. Aim: To identify quality of life issues that are relevant to carers of cancer patients with cachexia. Design: A systematic review and thematic synthesis of the qualitative literature were conducted. Reporting followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. Data sources: PubMed, ISI Web of Knowledge, EMBASE, MEDLINE, CINAHL, PsycINFO and PsycARTICLES were searched for publications dated from January 1980 to February 2015 using search terms relating to cancer, cachexia, quality of life and carers. Papers written in the English language, featuring direct quotes from the carers of adult patients with any cancer diagnosis and cachexia or problems with weight loss or anorexia, were included. Results: Five themes were extracted from the 16 identified studies. These highlighted the impact on everyday life, the attempts of some carers to take charge, the need for healthcare professional’s input, conflict with the patient and negative emotions. Conclusion: The complexity of caring for a cancer patient with cachexia translates into a range of problems and experiences for informal carers. By addressing the impact of caring for a patient with cancer cachexia on carers, both caregiver and patient quality of life may improve. [ABSTRACT FROM AUTHOR]

Background: Patients receiving palliative care often face psychological distress, which can be challenging for clinicians to manage. Therefore, reflexive and visual journaling can be used as powerful techniques for clinician selfreflection and personal development. These journals are a form of practice wisdom, providing insights into psychological health in palliative care. Aim: This study aims to describe how patients receiving palliative care experience psychological health, explore the meaning of a palliative care clinician's work and contribute to the understanding of psychological health in palliative care through the reflexive and visual journals of clinicians. Design: Using Gibb's reflective cycle as a framework for journaling, this study employs reflexive and visual journaling through the lenses of a psychiatrist and an art therapist. Journal data were analysed using a thematic analysis approach. Setting/participants: The two first authors journaled 107 clinical encounters and created 36 pieces of response art detailing encounters with patients and their families, and clinical conversations in two palliative care centres. Results: Patient attributes and the clinical environment were observed to influence psychological health in palliative care. The patient's ability to navigate dying, maintain personhood, exert resilience and experience satisfying relationships contribute to psychological health. A clinical environment comprising clinicians with holistic competencies, systems promoting interdisciplinary collaborations and a values-based culture that promotes patient centricity strengthens the delivery of psychological care. Conclusions: Good psychological health in palliative care extends beyond psychopathology and is influenced by the cardinal elements of being human, value systems and systemic elements in the therapeutic environment. [ABSTRACT FROM AUTHOR]

Background: Caring for parents continuing pregnancy after learning about a severe life-limiting condition in their unborn is challenging. Most existing studies focus on affected families, whereas research on the subjective experience of care professionals is scarce. Aim: We aimed to (1) explore experiences and needs of involved care professionals, (2) obtain information about existing care structures, and (3) identify requirements for a structured perinatal palliative care program. Design: Grounded Theory study using theoretical sampling. Data was collected by semi-structured interviews and analyzed following the principles of grounded theory coding and situational analysis. Setting: A total of 18 professionals from 12 different services in Munich and surroundings participated in the study: 8 physicians, 3 midwives, 2 nurses, 1 each pregnancy counselor, grief counselor, chaplain, clinical psychologist, and undertaker. Results: Several organizations provide support for affected parents, but inter-institutional communication is scarce. Due to the lack of a dedicated perinatal palliative care program, professionals make immense and partly unpaid efforts to support concerned parents. Providers experience "collateral beauty" in their work despite all the suffering and grief. This includes the development of a humble attitude and feelings of gratitude toward life, the feeling of having a meaningful task and professional as well as personal growth. Requirements for a structured perinatal palliative care program include: fostering peer support, ensuring regular supervision, and enhancing interdisciplinary exchange. Conclusions: Perinatal palliative care demands a high level of personal engagement but is experienced as highly rewarding by care professionals. [ABSTRACT FROM AUTHOR]

Background: Palliative care has the potential to address significant unmet needs in people with Parkinson's disease and related disorders, but models that rely on in-person specialty palliative care teams have limited scalability. Aim: To describe patient and care partner experiences with a novel, community-based palliative care intervention for Parkinson's disease. Design: Qualitative study embedded in a randomized clinical trial to document participant experiences with a novel palliative care intervention (community neurologist training and remote team-based specialist palliative care). Transcripts were coded and thematically analyzed through a combination of team-based inductive and deductive coding. Setting/Participants: Twenty-eight patients and 33 care partners purposively sampled from participants in a randomized clinical trial of a palliative care intervention for Parkinson's disease and related disorders conducted at nine sites. Results: Benefits of the intervention included management of a wider range of non-motor symptoms, facilitation of conversations about the future, greater engagement with the health care team, and increased referrals to resources. Participants identified areas of improvement, including uptake of palliative care training by community neurologists, additional prognostic counseling, and clarity and timeliness of communication with the multidisciplinary team. Conclusions: Clinicians caring for people with Parkinson's disease and related disorders should screen for non-motor symptoms, provide regular prognostic counseling, and refer to specialty palliative care services earlier in the course of illness. Future interventions should be designed to promote uptake of palliative care training by community neurologists and further optimize referral to and coordination with in-person or remote specialty palliative teams. [ABSTRACT FROM AUTHOR]

Background: When healthcare professionals or other involved parties prevent eligible patients from entering a trial as a research subject, they are gatekeeping. This phenomenon is a persistent problem in palliative care research and thought to be responsible for the failure of many studies. Aim: To identify potential gatekeepers and explore their reasons for gatekeeping in palliative care research. Design: A ‘Review of Reasons’ based on the systematic Preferred Reporting Items for Systematic Reviews and Meta-Analyses approach and a thematic synthesis. Data source: PubMed, Embase, Cumulative Index to Nursing and Allied Health Literature and PsycINFO from 2000 to May 20 2015 were searched. Studies in children (aged <18 years) and patients with dementia were excluded. Results: Thirty papers on gatekeeping in palliative care research were included. Five groups of potential gatekeepers were identified: healthcare professionals, research ethics committees, management, relatives and researchers. The fear of burdening vulnerable patients was the most reported reason for gatekeeping. Other reasons included ‘difficulty with disclosure of health status’, ‘fear of burdening the patient’s relatives’, ‘doubts about the importance or quality of the study’, ‘reticent attitude towards research and (research) expertise’ and ‘logistics’. In hospice and homecare settings, the pursuit of comfort care may trigger a protective attitude. Gatekeeping is also rooted in a (perceived) lack of skills to recruit patients with advanced illness. Conclusion: Gatekeeping is motivated by the general assumption of vulnerability of patients, coupled with an emphasis on the duty to protect patients. Research is easily perceived as a threat to patient well-being, and the benefits appear to be overlooked. The patients’ perspective concerning study participation is needed to gain a full understanding and to address gatekeeping in palliative care research. [ABSTRACT FROM AUTHOR]

The paper discusses a questionnaire survey that examined the attitudes, knowledge, practice, and experience of corneal donation of hospice staff with direct clinical contact with patients. Results revealed several barriers to discussing corneal donation, despite positive staff attitudes toward donation, which could reduce donation rates. It is noted that this could be improved through local policies for further education, prompts in documentation and availability of informative leaflets.

Background: Debate about appropriate and ethically acceptable end-of-life choices is ongoing, which includes discussion about the legalization of voluntary assisted dying. Given health professionals' role in caring for patients at the end life, their stance towards assisting a person with dying can have implications for policy development and implementation in jurisdictions where law changes are being considered. Aim: To explore end-of-life care professionals' attitudes towards voluntary assisted dying 6 months prior to vote on legalization. Design: Qualitative study using textual data collected through semi-structured interviews. Purposive sampling strategy used to collect a broad representation of perspectives. Audio-recorded interviews were transcribed verbatim and subjected to qualitative descriptive analysis techniques. Participants: A total of 16 health professionals with experience in caring for people with life-limiting illness. Results: Participants reported two overarching positions grounded in differing moral philosophies with compelling arguments both for and against legalization of voluntary assisted dying. A third and common line of argument emerged from areas of shared concern and uncertainty about the practical consequences of introducing voluntary assisted dying. While a diversity of opinion was evident, all participants advocated for more public education and funding into end-of-life care services to make high-quality care equitable and widely available. Conclusion: Common dedication to reducing suffering and facilitating good dying experiences exists among experts despite their divergent views on voluntary assisted dying. Ongoing engagement with stakeholders is needed for practical resolution in the interest of developing health policy for best patient care. [ABSTRACT FROM AUTHOR]

Palliative care exists in a variety of settings and palliative care teams form many guises within this. A Palliative Medicine Outpatient Clinic (PMOC) exists to meet the flexible provision of the needs and preferences of individuals within whatever care setting they reside. This explorative study used a qualitative methodology, capturing patients’ actual experience of care in preference to their satisfaction, as this is a more accurate measure of how and what patients judge as important in their healthcare. The overall themes in this paper point to the ‘value’ that patients perceived from attending the PMOC and how important the clinics were to clinicians that provided the care. The clinic facilitates much more than symptom control and here lies the challenge in how we convert the very positive experience of individuals into a language of outcome measures that captures the ‘essence’ of our work in this fiscally driven health economy. [ABSTRACT FROM AUTHOR]

The objective of this study was to compare attitudes of hospice staff towards weight loss and weight assessment in the hospice setting with those of patients with advanced malignancy in the hospital outpatient setting. Two paper-based questionnaires (one for staff and one for patients) were designed. The staff survey was circulated to all hospices in the UK and Ireland, and the patient questionnaire was given to patients attending three oncological care clinics in Belfast, Northern Ireland; Wolverhampton, England; and Auckland, New Zealand. The staff survey was posted to the medical director of each of the 215 hospices in the UK and Ireland. A total of 129 oncology outpatients with a confirmed diagnosis of malignancy and no longer receiving curative oncological interventions took part in the questionnaire. The main outcome measure was descriptive information about hospice weighing practices and attitudes of hospice staff towards weighing patients, and descriptive information was collected about patient attitudes to weighing and weight loss. We found that weighing practices vary across hospices in UK and Ireland. Patients attending the majority of hospices, 96/146 (66%), are rarely weighed. A little over half of hospice staff, 81/146 (56%) considered that weighing could cause patients to be upset. However, 124/129 (96%) of patients with advanced cancer reported that they had never found the experience of being weighed in a healthcare facility upsetting. Some 95/129 (74%) of patients weighed themselves at home and 89% would want to know if their weight was changing. While there is reluctance on the part of many hospice staff to weigh patients, most patients with advanced malignancy in the hospital setting do not report weight measurement to be upsetting. [ABSTRACT FROM AUTHOR]

Background: Paramedic practice is diversifying to accommodate evolving global health trends, including community paramedicine models and growing expertise in palliative and end-of-life care. However, despite palliative care specific clinical practice guidelines and existing training, paramedics still lack the skills, confidence and clinical support to provide this type of care. Aim: To elicit paramedics', palliative care doctors and nurses', general practitioners', residential aged care nurses' and bereaved families and carers' experiences, perspectives, and attitudes on the role, barriers and enablers of paramedics delivering palliative and end-of-life care in community-based settings. Design: A qualitative study employing reflexive thematic analysis of data collected from semi-structured online interviews was utilised. Setting/participants: A purposive sample of 50 stakeholders from all Australian jurisdictions participated. Results: Five themes were identified: positioning the paramedic (a dichotomy between the life saver and community responder); creating an identity (the trusted clinician in a crisis), fear and threat (feeling afraid of caring for the dying), permission to care (seeking consent to take a palliative approach) and the harsh reality (navigating the role in a limiting and siloed environment). Conclusion: Paramedics were perceived to have a revered public identity, shaped by their ability to fix a crisis. However, paramedics and other health professionals also expressed fear and vulnerability when taking a palliative approach to care. Paramedics may require consent to move beyond a culture of curative care, yet all participant groups recognised their important adjunct role to support community-based palliative care. [ABSTRACT FROM AUTHOR]

Background: Placebo-controlled trials can provide evidence to inform end-of-life care, but it is contested whether asking dying patients to participate in such trials is morally justifiable. To investigate the experiences of these patients is even more complex. Therefore, proxy assessments by relatives can be a good alternative. Aim: To explore the experience of participating in a placebo-controlled trial at the end of life from the perspective of bereaved relatives. Design: Mixed-method study, including questionnaires and interviews. Setting/participants: The SILENCE study was a randomized, double-blind, placebo-controlled trial on the efficacy of scopolamine butylbromide to prevent death rattle. The study was performed in six inpatient hospice facilities. Patients were asked to participate at admission in the hospice. Three months after the death of the patient, bereaved relatives were invited to fill in a questionnaire and to participate in an interview. One hundred four questionnaires were completed and 17 relatives were interviewed. Results: Fourteen percent of the relatives participating in the questionnaire study considered the participation of their loved one in research a bit burdensome and 10% considered it a bit stressful. Seventeen percent thought that it was a bit burdensome for the patient. Eighty-three percent considered participation in this type of research (very) valuable. The in-depth interviews showed that patients and relatives jointly decided about participation in this double-blind placebo-controlled medication trial. Relatives generally respected and felt proud about patients' decision to participate. Conclusion: The large majority of bereaved relatives experienced the participation of their dying love one in this RCT as acceptable and valuable. [ABSTRACT FROM AUTHOR]

Background: Healthcare professionals report challenges in supporting dying patients who have dependent children. These parents are often uncertain how to meet the needs of their children and require appropriate support from professionals. There is limited evidence based guidance for professionals around this issue, which is informed by the views and experiences of children themselves. Aim: To develop an understanding of the perspective of children on living with parental life-limiting illness and inform recommendations for healthcare professionals. Design: Qualitative semi-structured interviews were conducted, with thematic analysis of the data. Setting/participants: A diverse sample of 32 children aged 6–17, whose parent was living with life-limiting illness, were recruited from across the United Kingdom. Results: Despite the challenges of living with a parent with a life-limiting illness, the children display agency in their response. The children: feel a responsibility to look after their family; negotiate a relationship with healthcare; employ strategies to maintain some normality; and ensure that the inevitable sadness does not become overwhelming. Conclusions: Five recommendations for healthcare professionals were developed from the findings. Clinicians should encourage dying parents to: (1) acknowledge the agency of children; (2) recognise children's caregiving roles; (3) engender children's trust in healthcare; (4) maintain some normality; and (5) discuss emotions with their children. Implementing these recommendations will assist parents with a life-limiting illness to provide evidence-based support to their dependent children. [ABSTRACT FROM AUTHOR]

Background: Palliative care educators should incorporate strategies that enhance application into practice by learners. Commitment-to-change is an approach to reinforce learning and encourage application into practice; immediately post-course learners commit to making changes in their practices as a result of participating in the course ("statements") and then several weeks or months later are prompted to reflect on their commitments ("reflections"). Aim: Explore if and how learners implemented into practice what they learned in a palliative care course, using commitment-to-change reflections. Design: Secondary analysis of post-course commitment statements and 4-months post-course commitment reflections submitted online by learners who participated in Pallium Canada's interprofessional, 2-day, Learning Essential Approaches to Palliative Care (LEAP) Core courses. Setting/participants: Primary care providers from across Canada and different profession who attended LEAP Core courses from 1 April 2015 to 31 March 2017. Results: About 1063 of 4636 learners (22.9%) who participated in the 244 courses delivered during the study period submitted a total of 4250 reflections 4 months post-course. Of these commitments, 3081 (72.5%) were implemented. The most common implemented commitments related to initiating palliative care early across diseases, pain and symptom management, use of clinical instruments, advance care planning, and interprofessional collaboration. Impact extended to patients, services, and colleagues. Barriers to implementation into practice included lack of time, and system-level factors such as lack of support by managers and untrained colleagues. Conclusions: Examples of benefits to patients, families, services, colleagues, and themselves were described as a result of participating in the courses. [ABSTRACT FROM AUTHOR]

Background: Palliative patients frequently express a desire to die. Health professionals report uncertainty regarding potential risks of addressing it. Aim: We aim to evaluate effects of desire to die-conversations on palliative patients. Design: Within a prospective mixed-methods cohort study, we trained health professionals in dealing with desire to die. Afterwards, they held conversations about it with patients. Effects on depressiveness, hopelessness, wish to hasten death, death anxiety, patient-health professional-relationship, and will to live were evaluated at baseline (t0), 1 (t1), and 6 weeks afterwards (t2). Results were analyzed descriptively. Setting/participants: From April 2018 to March 2020, 43 health professionals asked 173 patients from all stationary and ambulatory palliative care settings (within 80 km radius) for participation. Complete assessments were obtained from n = 85 (t0), n = 64 (t1), and n = 46 (t2). Results: At t1, patients scored significantly lower on depressiveness (med = 8, M = 8.1, SD = 5.4) than at t0 (med = 9.5, M = 10.5, SD = 5.8) with Z = −3.220, p = 0.001 and Cohen's d = 0.42. This was due to medium-severely depressed patients: At t1, their depressiveness scores decreased significantly (med = 9, M = 9.8; SD = 5.1) compared to t0 (med = 14, M = 15.2; SD = 3.9) with Z = −3.730, p ⩽ 0.000 and Cohen's d = 1.2, but others' did not. All other outcomes showed positive descriptive trends. Conclusions: Desire to die-conversations through trained health professionals do not harm palliative patients. Results cautiously suggest temporary improvement. [ABSTRACT FROM AUTHOR]

Background: The COVID-19 pandemic has posed significant challenges for healthcare systems to meet patients' and families' complex care needs, including spiritual care needs. Little data are available about spiritual care delivery in light of the pandemic. Aim: This study examined the impact of COVID-19 on spiritual care by healthcare chaplains in the United States. Design: An online survey of 563 board-certified chaplains was conducted from March to July 2020. The survey, designed to identify chaplains' roles in facilitating conversations about goals of care, included an open-ended question asking how COVID-19 affected chaplaincy practices; 236 chaplains responded. Quantitative data and written qualitative responses were analyzed using descriptive analysis and content analysis, respectively. Setting/participants: Majority of participants were white (88%), female (59%), Protestant (53%), and employed full time (86%). Almost half were working in community hospitals (45%) and designated to one or more special units (48%) including ICU, palliative care, and oncology. Results: Three major themes emerged from chaplains' qualitative responses: (1) COVID-19—related risk mitigation and operational changes; (2) impact of social distancing guidelines; and (3) increased need for and provision of psychosocial and spiritual support. Conclusions: Chaplains reported that COVID-19 challenges contributed to greater social isolation, and mental health concerns for patients, families, and healthcare staff, and substantially changed the way healthcare chaplains provided spiritual care. With evolving healthcare contexts, developing safer, more creative modes of spiritual care delivery while offering systematic support for chaplains can help meet the increasing psychosocial and spiritual needs of patients, families, and healthcare team members. [ABSTRACT FROM AUTHOR]

Background: Palliative care for people with dementia dying in care homes is an important aspect of long-term care. Whilst there is consensus about the principles of palliative care, less is known about how care home staff negotiate and influence decisions around end of life and how organisational context shapes that process. Aim: To explore the views and experiences of care home staff and palliative care specialists on end of life care in care homes and understand how care home settings affected palliative care provision in England and Australia. Design/participants: Eight focus groups in Australia and England with care home staff and palliative care specialists (n = 49). Reflexive thematic analysis was undertaken. Findings: Australian participants reported collaboration between care home staff, visiting professions and family members though case conferences. English participants discussed resident-focussed involvement from specialists that was less formally organised. Negotiating roles and responsibilities in end of life care; the importance of relationships to overcome deficiencies in formal processes; and the legitimacy and authority of advance care planning at times of crisis were recurring themes. The organisation and embedding of end of life care in processes and practices of care homes differed; this closely linked to care home procedures in Australia but was less apparent in England. Conclusion: In both countries, partnership working was recognised and valued as key to effective palliative care. Work that enables care home staff to identify challenges with visiting professionals, such as agreeing priorities for care and negotiating their shared responsibilities, may lead to context-sensitive, sustainable solutions. [ABSTRACT FROM AUTHOR]

Background: Specialised palliative home-care supports patients with life-limiting diseases in their familiar surroundings. The number of palliative care teams and patients being cared for is increasing worldwide. To assess and improve quality, it is needed to understand, how specialised palliative home-care can be provided successfully. For this purpose we examined the views of all involved stakeholders. Aim: To identify the issues that patients, their relatives and involved health professionals view as important in ensuring the success of specialised palliative home-care. Design: We used a qualitative design based on participant observations, interviews and focus groups following the principles of a Grounded Theory approach. Setting/participants: All specialised palliative home-care teams (n = 22) caring for adults in Hesse, Germany, participated. We conducted participant observations (n = 5), and interviewed patients (n = 14), relatives (n = 14) and health professionals working in or collaborating with specialised palliative home-care (n = 30). We also conducted focus groups (n = 4) with health professionals including a member check. Results: Successful specialised palliative home-care needs to treat complex symptoms, and provide comprehensive care including organisation of care, involving relatives and addressing issues of death and dying. Sense of security for patients and relatives is key to enable care at home. Care delivery preferences include a focus on the quality of relationships, respect for individuality and the facilitation of self-determination. Conclusions: Consideration of the identified key issues can help to ensure successful specialised palliative home-care. Knowledge of these should also be considered when researching and assessing quality of care. Trial registration: German Clinical Trials Register DRKS-ID: DRKS00012421; http://www.germanctr.de. [ABSTRACT FROM AUTHOR]

Background: Achieving universal access to palliative care is considered a global and equity priority. Understanding patients and caregivers' attitudes and preferences towards palliative and end-of-life care in Latin America is essential to develop person-centred services in the region. Aim: To synthesize and appraise the evidence about patients with advanced illness and their caregivers' attitudes and preferences towards palliative and end-of-life care in Latin America. Design: Mixed studies systematic review with sequential exploratory synthesis (thematic and narrative synthesis). Quality was assessed using the Mixed-Methods Appraisal Tool. Data sources: MEDLINE, Embase, PsychINFO, Lilacs, Web of Science, Scielo and Scopus to March 2021. Empirical studies examining patient or caregiver attitudes and/or preferences towards palliative and end-of-life care were included. Results: Of 3575 records screened, 45 articles were included, comprising 7 countries and a total of 1220 patients and 965 caregivers (26.8% non-cancer-related participants). Data were organized around seven themes: Symptom management and nutrition; End-of-life medical decisions; Communication patterns; Place of end-of-life care and death; God and religious community as source of hope and support; Caregiver's role; and Mixed understandings of palliative care. Main findings include; conflicted views around palliative care and pain relief; patients' preference to be informed about their condition contrasting with caregivers' reluctance to discuss this with patients; common preference for shared decision-making; and overburdened caregivers lacking professional home-care support. Methodological flaws were found in general. Conclusion: Core themes provide context-specific evidence to inform the design of culturally sensitive palliative and end-of-life care services, models and public policies in Latin America. [ABSTRACT FROM AUTHOR]

Background: Pediatric palliative care has established benefits for children with cancer and their families. Overcoming organizational and healthcare provider barriers have been demonstrated as central for the provision of palliative care in pediatric oncology. A deeper understanding is needed of the influence of these barriers and the interactions between them, specifically in primary palliative care in hospital settings. Aim: To identify the organizational and healthcare provider barriers to the provision of primary pediatric palliative care. Design: This study utilized the grounded theory method. Semi-structured interviews were conducted and analyzed line by line, using NVivo software. Setting/participants: Forty-six pediatric oncologists, nurses, psychosocial team members, and other healthcare providers from six academic hospital centers participated in the research. Results: Organizational and healthcare provider factors were identified, each of which acted as both a barrier and facilitator to the provision of pediatric palliative care. Organizational barriers included lack of resources and management. Facilitators included external resources, resource management, and a palliative care center within the hospital. Individual barriers included attitudes toward palliative care among pediatric oncologists, pediatric oncologists' personalities, and the emotional burden of providing palliative care. Facilitators include dedication and commitment, initiative, and sense of meaning. Provider facilitators for palliative care had a buffering effect on organizational barriers. Conclusion: Organizational and healthcare provider factors influence the quality and quantity of palliative care given to children and their families. This finding has implications on interventions structured to promote primary palliative care for children, especially in healthcare systems and situations where resources are limited. [ABSTRACT FROM AUTHOR]

Background: The United States Veterans Health Administration National Center for Ethics in Health Care implemented the Life-Sustaining Treatment Decisions Initiative throughout the Veterans Health Administration health care system in 2017. This policy encourages goals of care conversations, referring to conversations about patient's treatment and end-of-life wishes for life-sustaining treatments, among Veterans with serious illnesses. A key component of the initiative is expanding interdisciplinary provider roles in having goals of care conversations. Aim: Use organizational role theory to explore medical center experiences with expanding interdisciplinary roles in the implementation of a goals of care initiative. Design: A qualitative thematic analysis of semi-structured interviews. Setting/participants: Initial participants were recruited using purposive sampling of local medical center champions. Snowball sampling identified additional participants. Participants included thirty-one interdisciplinary providers from 12 geographically diverse initiative pilot and spread medical centers. Results: Five themes were identified. Expanding provider roles in goals of care conversations (1) involves organizational culture change; (2) is influenced by medical center leadership; (3) is supported by provider role readiness; (4) benefits from cross-disciplinary role agreement; and (5) can "overwhelm" providers. Conclusions: Organizational role theory is a helpful framework for exploring interdisciplinary roles in a goals of care initiative. Support and recognition of provider role expansion in goals of care conversations was important for the adoption of a goals of care initiative. Actionable strategies, including multi-level leadership support and the use of interdisciplinary champions, facilitate role change and have potential to strengthen uptake of a goals of care initiative. [ABSTRACT FROM AUTHOR]

Background: Advance care planning improves the quality of end-of-life care for older persons in residential aged care; however, its uptake is low. Case conferencing facilitates advance care planning. Aim: To explore the experience of participating in advance care planning discussions facilitated through multidisciplinary case conferences from the perspectives of families, staff and health professionals. Design: A qualitative study (February–July 2019) using semi-structured interviews. Setting: Two residential aged care facilities in one Australian rural town. Participants: Fifteen informants [family (n = 4), staff (n = 5), health professionals (n = 6)] who had participated in advance care planning discussions facilitated through multidisciplinary case conferences. Results: Advance care planning was like navigating an emotional landscape while facing the looming loss of a loved one. This emotional burden was exacerbated for substitute decision-makers, but made easier if the resident had capacity to be involved or had previously made their wishes clearly known. The 'conversation' was not a simple task, and required preparation time. Multidisciplinary case conferences facilitated informed decision-making and shared responsibility. Opportunity to consider all care options provided families with clarity, control and a sense of comfort. This enabled multiple stakeholders to bond and connect around the resident. Conclusion: While advance care planning is an important element of high quality care it involves significant emotional labour and burden for families, care staff and health professionals. It is not a simple administrative task to be completed, but a process that requires time and space for reflection and consensus-building to support well-considered decisions. Multidisciplinary case conferences support this process. [ABSTRACT FROM AUTHOR]

Background: People residing in UK homeless hostels experience extremely high rates of multi-morbidity, frailty and age-related conditions at a young age. However, they seldom receive palliative care with the burden of support falling to hostel staff. Aim: To evaluate a model embedding palliative specialists, trained as 'homelessness champions', into hostels for two half-days a month to provide support to staff and residents and facilitate a multidisciplinary approach to care. Design: An exploratory qualitative design. Setting/participants: Four homeless hostels in London, UK, including nine hostel managers/support staff and seven palliative care specialists (five nurses and two social workers). Results: Benefits to introducing the model included: developing partnership working between hostel staff and palliative care specialists, developing a holistic palliative ethos within the hostels and improving how hostel staff seek support and connect with local external services. Challenges to implementation included limited time and resources, and barriers related to primary care. Conclusion: This is the first evaluation of embedding palliative care specialists within homeless hostels. Inequity in health and social care access was highlighted with evidence of benefit of this additional support for both hostel staff and residents. Considering COVID-19, future research should explore remote ways of working including providing in-reach support to homelessness services from a range of services and organisations. [ABSTRACT FROM AUTHOR]

Background: Home care workers, as paid caregivers, assist with many aspects of home-based heart failure care. However, most home care workers do not receive systematic training on end-of-life care for heart failure patients. Aim: To elicit the educational needs and priorities of home care workers caring for community- dwelling adults with heart failure at the end-of-life. Design: Nominal group technique involving a semi-quantitative structured group process and point rating system was used to designate the importance of priorities elicited from home care workers. Individual responses to the question, " If you have ever cared for a heart failure patient who was dying (or receiving end-of-life care on hospice), what are some of the challenges you faced?", were aggregated into categories using directed content analysis methods. Setting/Participants: Forty-one home care workers were recruited from a non-profit training and education organization in New York City. Results: Individual responses to the question were aggregated into five categories: (1) how to cope and grieve; (2) assisting patients with behavior changes, (3) supporting patients to improve their quality of life, (4) assisting patients with physical symptom management, and (5) symptom recognition and assessment. Conclusions: Our findings confirm the need for the formal development and evaluation of an educational program for home care workers to improve the care of heart failure patients at the end-of-life. There is also a need for research on integrating home care workers into the interprofessional healthcare team to support optimal health outcomes for patients with heart failure. [ABSTRACT FROM AUTHOR]

Background: Home palliative care services have played an essential role during the first wave of the SARS-CoV-2 outbreak by providing symptom control, drug procurement, and psychological support for frail patients and their families unable to leave their homes. Aim: To understand how home palliative care professionals were affected by the outbreak, describing changes and challenges in their daily work as well as their reactions to the Covid-19 pandemic in Italy. Design: Qualitative study conducted using telephone semi-structured interviews, with thematic analysis. Setting/participants: Thirty home care professionals working for an Italian non-profit organization which provides home palliative care for cancer patients and their families. Results: Three main themes were identified. The first theme showed both patient-related and practice-related challenges participants faced in their daily work, requiring the implementation of different communication methods and patient and family education on risk prevention. The second theme showed the perception of increased responsibility and being the only landmark for family played a decisive role in participants' positive attitude. The third theme highlighted the participants' perception of the critical role of a home care setting in this emergency situation. Conclusions: The first wave of the Covid-19 pandemic brought many challenges and stressors for home palliative care professionals. On the other side, they reported a satisfaction with their critical role in carrying out their work with patients at risk. [ABSTRACT FROM AUTHOR]

Background: During infectious epidemics, healthcare workers are required to deliver traditional care while facing new pressures. Time and resource restrictions, a focus on saving lives and new safety measures can lead to traditional aspects of care delivery being neglected. Aim: Identify barriers to delivering end-of-life care, describe attempts to deliver care during the COVID-19 pandemic, and understand the impact this had on staff. Design: A rapid appraisal was conducted incorporating a rapid review of policies from the United Kingdom, semi-structured telephone interviews with healthcare workers, and a review of mass print media news stories and social media posts describing healthcare worker's experiences of delivering care during the pandemic. Data were coded and analysed using framework analysis. Setting/Participants: From a larger ongoing study, 22 interviews which mentioned death or caring for patients at end-of-life, eight government and National Health Service policies affecting end-of-life care delivery, eight international news media stories and 3440 publicly available social media posts were identified. The social media analysis centred around 274 original tweets with the highest reach, engagement and relevance. Incorporating multiple workstreams provided a broad perspective of end-of-life care during the COVID-19 pandemic in the United Kingdom. Results: Three themes were developed: (1) restrictions to traditional care, (2) striving for new forms of care and (3) establishing identity and resilience. Conclusions: The COVID-19 pandemic prohibited the delivery of traditional care as practical barriers restricted human connections. Staff prioritised communication and comfort orientated tasks to re-establish compassion at end-of-life and displayed resilience by adjusting their goals. [ABSTRACT FROM AUTHOR]

Background: During the COVID-19 outbreak restricting measures may have affected the provision of good end-of-life care for patients with and without COVID-19. Aim: To describe characteristics of patients who died and the care they received, and to examine how patient characteristics, setting and visiting restrictions are related to provided care and evaluation of the dying process. Design: An open observational online survey among healthcare professionals about their experience of end-of-life care that was provided to a patient with or without COVID-19 who died between March and July 2020. Setting/participants: Healthcare professionals (nurses, physicians and others) in the Netherlands from all settings: home (n = 163), hospital (n = 249), nursing home (n = 192), hospice (n = 89) or elsewhere (n = 68). Results: Of patients reported on, 56% had COVID-19. Among these patients, 358 (84.4%) also had a serious chronic illness. Having COVID-19 was negatively, and having a serious chronic illness was positively associated with healthcare staff's favourable appreciation of end-of-life care. Often there had been visiting restrictions in the last 2 days of life (75.8%). This was negatively associated with appreciation of care at the end of life and the dying process. Finally, care at the end of life was less favourably appreciated in hospitals and especially nursing homes, and more favourably in home settings and especially hospices. Conclusions: Our study suggests that end-of-life care during the COVID-19 pandemic may be further optimised, especially in nursing homes and hospitals. Allowing at least some level of visits of relatives seems a key component. [ABSTRACT FROM AUTHOR]

Background: The cognitive and communication challenges experienced by people with intellectual disability present difficulties for health professionals, particularly in the face of illness and dying. Aim: To explore the experiences of specialist palliative care staff in talking with people with intellectual disability about their dying and death, and factors that influence these conversations. Design: An inductive thematic analysis was conducted on data from a larger qualitative semi-structured interview study. Setting/participants: Twenty palliative care staff from health services across Australia were interviewed. Participants were employed in multidisciplinary specialist palliative care teams and had provided palliative care to dying persons with intellectual disability. Results: Specialist palliative care staff did not consistently talk with people with intellectual disability about their dying and death. Conversations were influenced by (a) the perceived capacity of the person with intellectual disability, (b) experience and expertise of palliative care staff, (c) the relationship between palliative care staff and dying person and (d) values of palliative care staff and other caregivers (namely family members and paid carers). Conclusions: Specialist palliative care staff experience difficulties in talking with people with intellectual disability about their dying. Development of communication guidelines, resources and training for palliative care teams are urgently required to improve palliative care for this patient group. A more comprehensive research agenda on the needs of people with intellectual disability and their caregivers in palliative care is needed, with a particular focus on strategies to effectively communicate about dying and death. [ABSTRACT FROM AUTHOR]

Background: Legacy has been invoked as a means for strengthening human attachments, continuing bonds, and ensuring that individuals will be remembered; however, little is known about the spectrum of approaches to, outcomes associated with, and best practices for legacy interventions. Aim: To systematically review research on legacy perceptions and interventions in pediatric and adult palliative care recipients. Design: A systematic mixed studies review synthesizing quantitative, qualitative, and mixed-methods study findings using PRISMA guidelines. Data sources: PubMed, PsycINFO, and CINAHL databases were searched on October 1, 2020. GRADE criteria were used to assess quality of quantitative reports, and the Johns Hopkins Evidence Level and Quality Guide was used to rate qualitative, mixed methods, and review articles. Data were synthesized using integrative thematic analysis. Results: The 67 studies reviewed describe a variety of legacy perceptions and interventions with adult and pediatric patients receiving palliative care. Statistically significant improvements in various dimensions of wellbeing are documented, with significant reduction in incidence and symptoms of depression in adults. Studies highlight the utility, feasibility, and perceived benefits of legacy interventions according to adult patients and their caregivers, and parents/caregivers of pediatric patients. Conclusions: Though future research with high-quality, experimental designs is needed, the positive outcomes associated with legacy interventions are documented in adult patient populations; additionally, the application of legacy interventions for children with serious illnesses receiving palliative care is reasonable based on the existing body of evidence. A consistent and operational concept of legacy is still needed for future research and practice. [ABSTRACT FROM AUTHOR]

Background: Between 2000 and 2020, Europe experienced an annual net arrival of approximately 1.6 million immigrants per year. While having lower mortality rates, in the setting of severe diseases, immigrants bear a greater cancer-related burden due to linguistic and cultural barriers and socio-economic conditions. Professionals face a two-fold task: managing clinical conditions while considering the social, economic, cultural, and spiritual sphere of patients and their families. In this regard, little is known about the care provision to low-income immigrant cancer patients in real contexts. Aim: To investigate the perspective of professionals, family members, and stakeholders on the caring process of low-income immigrant cancer patients at the end of life. Design: A Constructivist Grounded Theory study. Setting/participants: The study, conducted at a Hospital in Northern Italy, involved 27 participants among health professionals, family caregivers, and other stakeholders who had recently accompanied immigrant cancer patients in their terminal phase of illness. Results: Findings evidenced that professionals feel they were not adequately trained to cope with immigrant cancer patients, nonetheless, they were highly committed in providing the best care they could, rushing against the (short) time the patients have left. Analyses evidenced four main categories: "providing and receiving hospitality," "understanding each other," "addressing diversity," and "around the patient," which we conceptualized under the core category "Achieve the best while rushing against time." Conclusions: The model reveals the activation of empathic and compassionate behavior by professionals. It evidences the need for empowering professionals with cultural competencies by employing interpreters and specific training programs. [ABSTRACT FROM AUTHOR]

Background: Although the culture in burns/critical care units is gradually evolving to support the delivery of palliative/end of life care, how clinicians experience the end of life phase in the burn unit remains minimally explored with a general lack of guidelines to support them. Aim: To explore the end of life care experiences of burn care staff and ascertain how their experiences can facilitate the development of clinical guidelines. Design: Interpretive-descriptive qualitative approach with a sequential two phased multiple data collection strategies was employed (face to face semi-structured in-depth interviews and follow-up consultative meeting). Thematic analysis was used to analyze the data. Setting/participants: The study was undertaken in a large teaching hospital in Ghana. Twenty burn care staff who had a minimum of 6 months working experience completed the interviews and 22 practitioners participated in the consultative meeting. Results: Experiences of burn care staff are complex with four themes emerging: (1) evaluating injury severity and prognostication, (2) nature of existing system of care, (3) perceived patient needs, and (4) considerations for palliative care in burns. Guidelines in this regard should focus on facilitating communication between the patient and family and staff, holistic symptom management at the end of life, and post-bereavement support for family members and burn care practitioners. Conclusions: The end of life period in the burn unit is poorly defined coupled with prognostic uncertainty. Collaborative model of practice and further training are required to support the integration of palliative care in the burn unit. [ABSTRACT FROM AUTHOR]

Background: Continuity of care is challenging when transferring patients across palliative care settings. These transfers are common due to the complexity of palliative care, which has increased significantly since the advent of palliative care services. It is unclear how palliative care services and professionals currently collaborate and communicate to ensure the continuity of care across settings, and how patient and family members are involved. Aim: To explore healthcare professionals' experiences regarding the communicative aspects of inter-professional collaboration and the involvement of patient and family members. Design: Qualitative design, including focus group discussions. Setting/participants: The study focused on one palliative care network in Belgium and involved all palliative care settings: hospital, hospital's palliative care unit, home care, nursing home. Nine group discussions were conducted, with diverse professionals (n = 53) from different care settings. Results: Timely and effective inter-professional information exchange was considered fundamental. A perceived barrier for interprofessional collaboration was the lack of a shared electronic health record. Efficiency regarding multidisciplinary team meetings and inter-professional communication were subject to improvement. A striking study finding was the perceived insufficient open communication of specialists towards patients and the lack of shared decision making. This not only hampered advance care planning discussions and early integration of palliative home care, but also the functioning of other professionals. Conclusion: From the perspective of the integrated care framework, several areas of improvement on different levels of care and collaboration are identified. Support from policymakers and researchers is required to achieve integrated palliative care in regional networks. [ABSTRACT FROM AUTHOR]

Background: Malignant fungating wounds occur in advanced cancer patients, often in the last 6 to 12 months of life, when malignant cells breach the skin, causing a non-healing wound. Little is known about the perspectives of clinicians who treat these patients or how collaboration is facilitated among different specialties. Objective: To understand the experiences and perceived roles of clinicians who treat patients with malignant fungating wounds from a multidisciplinary perspective. Design: A qualitative study using narrative interviews was conducted and data was analyzed to identify themes that encompass the experiences of clinicians who treat patients malignant fungating wounds and put these experiences in a temporal context. Setting/subjects: Ten clinicians who treat patients with malignant fungating wounds (n = 10) from various metropolitan research hospitals were interviewed. The clinicians were of different disciplines, including physicians and nurses, and different specialties, including palliative care, oncology, and wound care. Results: Three themes emerged that described how clinicians of varying disciplines and specialties understood their roles and navigated the transition from curative to palliative care for patients with malignant fungating wounds: (1) making the best of fragmented care (2) collaboration between oncology and wound care (3) transitioning from curative to palliative care. Conclusion: Findings of the study present a timeline of clinical care for patients, with different specialties taking the lead at different points in clinical time. Recognizing when collaboration between specialties is essential, as well as when communication fails, or clinicians have differing perspectives is important to facilitate the best care possible for patients. [ABSTRACT FROM AUTHOR]

Background: Opioids are essential medicines. Despite international and national laws permitting availability, opioid access remains inadequate, particularly in South, Southeast, East and Central Asia. Aim: To review evidence of perceptions and experiences of regulatory enablers and barriers to opioid access in South, Southeast, East and Central Asia. Design: Systematic review of post-2000 research according to PRISMA guidelines. Data were subjected to critical interpretive synthesis. International, national and sub-national barriers were organised developing a conceptual framework of opioid availability. Data sources: PsycINFO, Medline, Embase, The Cochrane Library. CINAHL, Complete and ASSIA from 2000 until 20th May 2019. Results: 21/14097 studies included: quantitative n = 15, qualitative n = 3 and mixed-methods n = 3. Four barrier/enabler themes were developed: Legal, regulatory, socio-political; lack of laws explicitly enabling opioid access, restrictive international controls and clinician prescribing concerns. Opioid availability; limited availability, poor policymaker and clinician education regarding opioid benefits, poor continuity of supply. Opioid Accessibility; medicine costs, distance to prescribing centres. Prescribing; extensive bureaucratic barriers, lack of human resources for prescribing. We present a novel framework of a self-perpetuating model of inadequate opioid provision. The Single Convention on Narcotics provides the context of restrictive laws and negative attitudes amongst policymakers. A consequent lack of prescribers and clinicians' negative attitudes at sub-national levels, results in inadequate access to and use of opioids. Data of inadequate consumption informs annual requirement estimates used by the International Narcotics Control Board to determine future opioid availability. Conclusions: Regulatory and socio-political actions unintentionally limit opioid access. International and national laws explicitly enabling opioid access are required, to assuage concerns, promote training and appropriate prescribing. [ABSTRACT FROM AUTHOR]

Background: Caring at end-of-life is associated with financial burden, economic disadvantage, and psychosocial sequelae. Health and social welfare systems play a significant role in coordinating practical resources and support in this context. However, little is known about social policy and interactions with public institutions that shape experiences of informal carers with social welfare needs at end-of-life. Aim: To explore ways in which palliative care and welfare sector workers perceive and approach experiences and needs of the carers of people with life-limiting illnesses who receive government income support or housing assistance, in an area of recognised socioeconomic disadvantage. Design: An interpretive descriptive study employed in-depth, qualitative interviews to explore participants' reflections on working with carers of someone with a life-limiting illness. Data were analysed using the framework approach. Setting/participants: Twenty-one workers employed within three public services in Western Sydney were recruited. Results: Workers articulated understandings of welfare policy and its consequences for carers at end-of-life, including precariousness in relation to financial and housing circumstances. Identified resources and barriers to the navigation of social welfare needs by carers were categorised as personal, interpersonal and structural. Conclusions: Caring at end-of-life while navigating welfare needs was seen to be associated with precariousness by participants, particularly for carers positioned in vulnerable social locations. Findings highlighted experiences of burdensome system navigation, inconsistent processes and inequity. Further exploration of structural determinants of experience is needed, including aspects of palliative care and welfare practice and investment in inter-agency infrastructure for supporting carers at end-of-life. [ABSTRACT FROM AUTHOR]

Background: Transitioning from the hospital to community is a vulnerable point in patients' care trajectory, yet little is known about this experience within the context of palliative care. While some studies have examined the patient and caregiver experience, no study to date has synthesized the literature on the healthcare provider's perspective on their role and experience facilitating these transitions. Aim: The purpose of this systematic review was to understand the experience and perspective of healthcare providers who support the transition of patients receiving palliative care as they move from acute care to community settings. Design: A qualitative systematic review of studies using thematic analysis as outlined by Thomas and Harden. PROSPERO: ID # CRD42018109662. Data Sources: We searched four databases: MEDLINE, Embase, ProQuest and CINAHL for studies published in English from 1995 until May 22, 2020. Four reviewers screened records using the following selection criteria: (1) peer-reviewed empirical study, (2) adult sample, (3) qualitative study design, (4) perspective of healthcare providers, and (5) included a component of transitions between acute to community-based palliative care. Study findings were analyzed using thematic analysis which entailed: (1) grouping the findings into recurring themes; (2) iteratively referring back to the articles to obtain nuances of the theme and quotations; and (3) defining and solidifying the themes. Results: Overall 1,791 studies were identified and 15 met inclusion criteria. Studies were published recently (>2015, n = 12, 80%) and used a range of qualitative methods including semi-structured interviews, focus groups, and field interviews. Three core themes related to the role and experience of healthcare providers were identified: (1) assessing and preparing for transition; (2) organizing and facilitating the logistics of transition; and (3) coordinating and collaborating transitional care across sectors. The majority of studies focused on the discharge process from acute care; there was a lack of studies exploring the experiences of healthcare providers in the community who receive patients from acute care and provide them with palliative care at home. Conclusion: This review identified studies from a range of relatively high-income countries that included a diverse sample of healthcare providers. The results indicate that healthcare providers experience multiple complex roles during the transition facilitation process, and future research should examine how to better assist clinicians in supporting these transitions within the context of palliative care provision. [ABSTRACT FROM AUTHOR]

Background: Hospital palliative care is an essential part of the COVID-19 response, but relevant data are lacking. The recent literature underscores the need to implement protocols for symptom control and the training of non-specialists by palliative care teams. Aim: The aim of the study was to describe a palliative care unit's consultation and assistance intervention at the request of an Infectious Diseases Unit during the COVID-19 pandemic, determining what changes needed to be made in delivering palliative care. Design: This is a single holistic case study design using data triangulation, for example, audio recordings of team meetings and field notes. Setting/participants: This study was conducted in the Palliative Care Unit of the AUSL-IRCCS hospital of Reggio Emilia, which has no designated beds, consulting with the Infectious Diseases Unit of the same hospital. Results: A total of 9 physicians and 22 nurses of the Infectious Diseases Unit and two physicians of the Palliative Care Unit participated in the study. Our Palliative Care Unit developed a feasible 18-day multicomponent consultation intervention. Three macro themes were identified: (1) new answers to new needs, (2) symptom relief and decision-making process, and (3) educational and training issues. Conclusion: From the perspective of palliative care, some changes in usual care needed to be made. These included breaking bad news, patients' use of communication devices, the limited time available for the delivery of care, managing death necessarily only inside the hospital, and relationships with families. [ABSTRACT FROM AUTHOR]

Background: Communities have limited understanding of palliative care, creating barriers to informed choice around consideration of a full range of care options in the event of serious illness. Few empirically tested interventions are available to educate community about palliative care, and ultimately improve timely access to these services. Aim: To test the acceptability (primary outcome), and feasibility of a narrative approach to public health communication seeking to improve attitudes to possible access to palliative care in the event of serious illness. Design: Randomised phase II trial with six parallel experimental conditions. Outcomes tested included measures of acceptability, feasibility and change in attitudes to possible access to palliative care post-intervention. Contrasts planned for exploratory testing included format, message content and narrator. Setting/participants: Community-based sample of consecutive English-speaking adults who volunteered their participation in response to a study advertisement distributed online through established community groups. Results: A narrative approach to public health communication was found to be acceptable to community members, and feasible to deliver online. Exploratory data suggested it immediately improved attitudes towards possible access to palliative care in the event of serious illness, with the narrative detailing a description of the evidence delivered by a healthcare professional appearing to be the most promising strategy. Conclusions: This study provides preliminary data to inform a future, longitudinal trial evaluating effectiveness and ultimately other evidence-based, public health approaches to improve community engagement with palliative care. Further studies are required to confirm the generalisability of findings to a broader representative sample and other settings including internationally. [ABSTRACT FROM AUTHOR]

Background: Informal carers are essential in enabling discharge home from hospital at end of life and supporting palliative patients at home, but are often ill-prepared for the role. Carers' support needs are rarely considered at discharge. If carers are less able to cope with home care, patient care may suffer and readmission may become more likely. Aim: To investigate the implementation of an evidence-based Carer Support Needs Assessment Tool (CSNAT) intervention to support carers during hospital discharge at end of life. Design: Longitudinal qualitative study with thematic analysis. Setting/participants: One National Health Service Trust in England: 12 hospital practitioners, one hospital administrator and four community practitioners. We provided training in CSNAT intervention use and implementation. Practitioners delivered the intervention for 6 months. Data collection was conducted in three phases: (1) pre-implementation interviews exploring understandings, anticipated benefits and challenges of the intervention; (2) observations of team meetings and review of intervention procedures and (3) follow-up interviews exploring experiences of working with the intervention. Results: Despite efforts from practitioners, implementation was challenging. Three main themes captured facilitators and barriers to implementation: (1) structure and focus within carer support; (2) the 'right' people to implement the intervention and (3) practical implementation challenges. Conclusions: Structure and focus may facilitate implementation, but the dominance of outcomes measurement and performance metrics in health systems may powerfully frame perceptions of the intervention and implementation decisions. There is uncertainty over who is best-placed or responsible for supporting carers around hospital discharge, and challenges in connecting with carers prior to discharge. [ABSTRACT FROM AUTHOR]

Background: Constipation is a major problem for many older adults, more so for those who are receiving specialist palliative care. However, limited research reports the subjective experiences of constipation, despite evidenced differences between the healthcare professional and patient/carer perspective. Aim: The main aim of this study is to explore the experience of how constipation is assessed and managed within specialist palliative care from the patient, carer and healthcare professional perspective. Design: Exploratory, qualitative design, utilising focus groups and interviews, and analysed using thematic analysis. Setting/participants: Six focus groups with 27 healthcare professionals and semi-structured interviews with 13 patients and 5 family caregivers in specialist palliative care units across three regions of the United Kingdom. Results: Constipation impacted physically, psychologically and socially on patients and families; however, they felt staff relegated it on the list of importance. Lifestyle modifications implemented at home were not incorporated into their specialist palliative care plan within the hospice. Comparatively, healthcare professionals saw constipation solely as a physical symptom. Assessment focused on the physical elements of constipation, and management was pharmacologically driven. Healthcare professionals reported patient embarrassment as a barrier to communicating about bowel care, whereas patients wanted staff to initiate communication and discuss constipation openly. Conclusion: Assessment and management of constipation may not yet reflect the holistic palliative care model. A focus on the pharmacological management may result in lifestyle modifications being underutilised. Healthcare professionals also need to be open to initiate communication on bowel care and consider non-pharmacological approaches. It is important that patients and families are supported in self-care management, alongside standardised guidelines for practice and for healthcare professionals to facilitate this. [ABSTRACT FROM AUTHOR]

Background: Symptom management for infants, children and young people at end of life is complex and challenging due to the range of conditions and differing care needs of individuals of different ages. A greater understanding of these challenges could inform the development of effective interventions. Aim: To investigate the barriers and facilitators experienced by patients, carers and healthcare professionals managing symptoms in infants, children and young people at end of life. Design: A mixed-methods systematic review and meta-analysis was undertaken (PROSPERO ID: CRD42019124797). Data sources: The Cochrane Library, PROSPERO, CINAHL, MEDLINE, PsycINFO, Web of Science Core Collection, ProQuest Dissertations & Theses Database, Evidence Search and OpenGrey were electronically searched from the inception of each database for qualitative, quantitative or mixed-methods studies that included data from patients, carers or healthcare professionals referring to barriers or facilitators to paediatric end-of-life symptom management. Studies underwent data extraction, quality appraisal, narrative thematic synthesis and meta-analysis. Results: A total of 64 studies were included (32 quantitative, 18 qualitative and 14 mixed-methods) of medium-low quality. Themes were generated encompassing barriers/facilitators experienced by carers (treatment efficacy, treatment side effects, healthcare professionals' attitudes, hospice care, home care, families' symptom management strategies) and healthcare professionals (medicine access, treatment efficacy, healthcare professionals' demographics, treatment side effects, specialist support, healthcare professionals' training, health services delivery, home care). Only one study included patients' views. Conclusion: There is a need for effective communication between healthcare professionals and families, more training for healthcare professionals, improved symptom management planning including anticipatory prescribing, and urgent attention paid to the patients' perspective. [ABSTRACT FROM AUTHOR]

Background: Evaluations of complex interventions compared to usual care provided in palliative care are increasing. Not describing usual care may affect the interpretation of an intervention's effectiveness, yet how it can be described remains unclear. Aim: To demonstrate the feasibility of using multi-methods to describe usual care provided in randomised controlled trials (RCTs) of complex interventions, shown within a feasibility cluster RCT. Design: Multi-method approach comprising usual care questionnaires, baseline case note review and focus groups with ward staff completed at study end. Thematic analysis of qualitative data, descriptive statistics of quantitative data, followed by methodological triangulation to appraise approach in relation to study aim. Setting/participants: Four general medical wards chosen from UK hospitals. Purposive sampling of healthcare professionals for usual care questionnaires, and focus groups. Review of 20 patients' notes from each ward who died during admission or within 100 days of discharge. Results: Twenty-three usual care questionnaires at baseline, two focus groups comprising 20 healthcare professionals and 80 case note reviews. Triangulation of findings resulted in understanding the usual care provided to the targeted population in terms of context, structures, processes and outcomes for patients, families and healthcare professionals. Usual care was described, highlighting (1) similarities and embedded practices, (2) heterogeneity and (3) subtle changes in care during the trial within and across sites. Conclusions: We provide a feasible approach to defining usual care that can be practically adopted in different settings. Understanding usual care enhances the reliability of tested complex interventions, and informs research and policy priorities. [ABSTRACT FROM AUTHOR]