Search

Objectives: The Lancet Commission on Global Access to Palliative Care and Pain Relief reported significant levels of health-related suffering globally, with the highest incidence in the low- and middle-income countries. The report describes suffering as health-related when it is associated with illness or injury of any kind and suffering as serious when it cannot be relieved without professional intervention and when it compromises physical, social, spiritual, and/or emotional functioning. This paper describes the preliminary development phase of a tool for screening Serious Health-related Suffering (SHS) at individual patient level, suitable to the healthcare settings in India. The study was conducted by the National Cancer Grid-India, with support from the Indian Association of Palliative Care. Materials and Methods: Domain identification and item generation were conducted according to the recommendations for tool development by the American Psychological Association and World Health Organisation quality of life instrument. The consensus for domain questions and associated items was achieved using Delphi, nominal group technique, expert review, and polling. Results: The Phase-1 study for developing the screening tool for SHS contextualised to resource-limited settings generated a bilevel questionnaire. The initial level assesses and scores the physical, emotional, social, spiritual, and financial domains of health-related suffering. The next level assesses seriousness, through functional limitation and patient's preference. Conclusion: The generation of domains, items, and screening questions for health-related suffering and its seriousness completes the preliminary phase of developing the SHS screening tool applicable to a resource-limited healthcare setting. Field testing of the tool is being conducted as Phase-2 of this study, to validate it in clinical settings. [ABSTRACT FROM AUTHOR]

In this paper, the first author explores the complexity of caring for palliative care patients approaching end of life in response to the statement nursing is an interpretive practice. A reallife scenario is used to unravel the exploration of time, existence, and mortality. The author proclaims that the question of death remains unanswered, and the call to palliative care nursing requires an extensive examination of one's own temporality to cultivate an understanding of patients experiences of grief, legacy, and meaning making in the context of terminal illness. [ABSTRACT FROM AUTHOR]

Background: The need for palliative care in sub-Saharan Africa is staggering: this region shoulders over 67% of the global burden of HIV/AIDS and cancer. However, provisions for these essential services remain limited and poorly integrated with national health systems in most nations. Moreover, the evidence base for palliative care in the region remains scarce. This study chronicles the development and evaluation of DataPall, an open-source electronic medical records system that can be used to track patients, manage data, and generate reports for palliative care providers in these settings. DataPall was developed using design criteria encompassing both functional and technical objectives articulated by hospital leaders and palliative care staff at a leading palliative care center in Malawi. The database can be used with computers that run Windows XP SP 2 or newer, and does not require an internet connection for use. Subsequent to its development and implementation in two hospitals, DataPall was tested among both trained and untrained hospital staff populations on the basis of its usability with comparison to existing paper records systems as well as on the speed at which users could perform basic database functions. Additionally, all participants evaluated this program on a standard system usability scale. Results: In a study of health professionals in a Malawian hospital, DataPall enabled palliative care providers to find patients' appointments, on average, in less than half the time required to locate the same record in current paper records. Moreover, participants generated customizable reports documenting patient records and comprehensive reports on providers' activities with little training necessary. Participants affirmed this ease of use on the system usability scale. Conclusions: DataPall is a simple, effective electronic medical records system that can assist in developing an evidence base of clinical data for palliative care in low resource settings. The system is available at no cost, is specifically designed to chronicle care in the region, and is catered to meet the technical needs and user specifications of such facilities. [ABSTRACT FROM AUTHOR]

The discrepancy in the demand for palliative care and distribution of specialist palliative care services will force patients to be eventually cared for by primary care/family physicians in the community. This will necessitate primary care/family physicians to equip themselves with knowledge and skills of primary palliative care. Indian National Health Policy (2017) recommended the creation of continuing education programs as a method to empower primary care/family physicians. With this intention, a taskforce was convened for incorporating primary palliative care into family/primary care practice. The taskforce comprising of National and International faculties from Palliative Care and Family Medicine published a position paper in 2018 and subsequently brainstormed on the competency framework required for empowering primary care/family physicians. The competencies were covered under the following domains: knowledge, skills and attitude, ethical and legal aspects, communication and team work. The competency framework will be presented to the National Board of Examinations recommending to be incorporated in the DNB curriculum for Family Medicine. [ABSTRACT FROM AUTHOR]

Introduction: Dyspnea is prominently observed in palliative care (PC). Dyspnea can be multifactorial, primarily caused by obstructive or restrictive lung diseases or secondarily induced by various comorbidities. Numerous interventions exist, with route of administration and efficacy requiring further discussion. Despite opioids being the first line of treatment, their adverse effects lead to reluctance on the side of patients to take them, creating limitations in patient management planning. Objectives: This paper reviews and highlights the role of inhalers for dyspnea management in PC. Methods: The CINAHL, CENTRAL, and OVID databases were searched for scholarly articles on the role of inhalers in dyspnea management from 1998 to the present. A grey literature Internet search was also performed via Google, the World Health Organization, and CareSearch. Twenty-five articles relevant to the subject at hand were located and summarized. The Cochrane Systematic Reviews of Health Promotion and Public Health Interventions Handbook was consulted for structuring. Result: Isolated bronchodilators can be effective in dyspnea management. However, combination with opioids leads to a 52% reduction of dyspnea, demonstrating efficacy of their combined use. There is a role for conventional inhalers not only in patients afflicted with chronic obstructive pulmonary disease, but also in those where obstruction is reversible, and in cases of dyspnea not yet diagnosed. Conclusion: Inhalers can be utilized as adjuvant therapy to opioids, to limit opioid use, augment responses to dyspnea, and/or minimize opioid side effects, especially in opioid-naïve patients. Correct administration can increase the efficacy of short-acting beta-agonists, long-acting beta-agonists, short- and long-acting anticholinergic agents, and inhaled corticosteroids, achieving reduction and alleviation of dyspnea. [ABSTRACT FROM AUTHOR]

Background: In this paper we assess the quality of six deliberative stakeholder consultations regarding the implementation of a precision diagnostic for life-threatening pediatric brain tumors. Decision makers who base policy recommendations on the outputs of consultative exercises can presuppose that all deliberants are well informed of the policy issue, that participation in the deliberative process was fair, and that overcoming implementation barriers will necessarily result in practice change. Additional evidence is therefore needed to substantiate the informational quality of the deliberation, measure the equality of participation and study the effects on stakeholder reasoning to appropriately guide uptake of proposed recommendation(s). Methods: Using the DeVries framework for assessing the deliberative quality, we analyzed data from 44 post-consultation evaluation surveys completed by pediatric oncology and palliative care teams at two tertiary pediatric healthcare centers in Canada. We also conducted turn-taking and word-contribution analyses from the text transcriptions of each deliberation to assess equality of participation using descriptive statistics. Results: Deliberants agreed the quality of the deliberative process was fair (median ratings ranging from 9–10 out of 10) and the opportunities to receive expert information and discuss with others about the implementation of a new LDT were helpful (9.5 out of 10). While the session improved understanding of the implementation barriers and opportunities, it had marginal effects on deliberants' reasoning about whether LDTs would change their own clinical practice (3–10 out of 10). Participation was proportionate in at least four of the six deliberations, where no deliberant took more than 20% of total turns and contributed equal to, or less than 20% of total words. Conclusion: The quality assessment we performed demonstrates high informational value and perceived fairness of two deliberative stakeholder consultations involving pediatric palliative care and oncology teams in Canada. Quality assessments can reveal how the process of deliberation unfolds, whether deliberative outputs are the result of equitable participation among deliberants and what, if any, stakeholder voices may be missing. Such assessments should be routinely reported as a condition of methodological rigor and trustworthiness of deliberative stakeholder engagement research. [ABSTRACT FROM AUTHOR]

This paper provides practical suggestions for how palliative care clinicians can address the expressions of spiritual struggle voiced by patients and their loved ones. In addition to practical tips for listening and responding, ethical guidance and opportunities for self-reflection related to spiritual care are briefly discussed. Principles to guide practice when the clinician is listening and responding to a patient expressing spiritual struggle include being nondirective, honoring (vs. judging) the patient's spiritual or religious experience, keeping the conversation patient-centered, focusing on the core theme of what the patient is expressing presently, using the patient's terminology and framing, and responding "heart to heart" or "head to head" to align with the patient. Ultimately, the goal of a healing response from a spiritual care generalist is to allow the patient to "hear" or "see" themselves, to gain selfawareness. To converse with patients about spirituality in an ethical manner, the clinician must first assess the patient's spiritual needs and preferences and then honor these. [ABSTRACT FROM AUTHOR]

Introduction: To improve quality across levels of care, we developed a standardized care pathway (SCP) integrating palliative and oncology services for hospitalized and home-dwelling palliative cancer patients in a rural region. Methods: A multifaceted implementation strategy was directed towards a combination of target groups. The implementation was conducted on a system level, and implementation-related activities were registered prospectively. Adult patients with advanced cancer treated with non-curative intent were included and interviewed. Healthcare leaders (HCLs) and healthcare professionals (HCPs) involved in the development of the SCP or exposed to the implementation strategy were interviewed. In addition, HCLs and HCPs exposed to the implementation strategy answered standardized questionnaires. Hospital admissions were registered prospectively. Results: To assess the use of the SCP, 129 cancer patients were included. Fifteen patients were interviewed about their experiences with the patient-held record (PHR). Sixty interviews were performed among 1320 HCPs exposed to the implementation strategy. Two hundred and eighty-seven HCPs reported on their training in and use of the SCP. Despite organizational cultural differences, developing an SCP integrating palliative and oncology services across levels of care was feasible. Both HCLs and HCPs reported improved quality of care in the wake of the implementation process. Two and a half years after the implementation was launched, 28% of the HCPs used the SCP and 41% had received training in its use. Patients reported limited use and benefit of the PHR. Conclusion: An SCP may be a usable tool for integrating palliative and oncology services across care levels in a rural region. An extensive implementation process resulted in improvements of process outcomes, yet still limited use of the SCP in clinical practice. HCLs and HCPs reported improved quality of cancer care following the implementation process. Future research should address mandatory elements for usefulness and successful implementation of SCPs for palliative cancer patients. Plain language summary: When a patient has incurable cancer, it is beneficial to introduce palliative care early in the disease trajectory along with anti-cancer treatment. A standardized care pathway is a method to improve quality and reduce variation in healthcare. It can promote integrated healthcare services in palliative care, e.g. by specifying action points when the patient's situation is changing. In this study, a standardized care pathway for cancer patients with palliative care needs was developed in a rural region of Norway. The pathway focused on patients' needs and symptoms and on smooth transition between levels of care. An educational program and an information strategy were developed to ensure implementation. To evaluate the implementation, all activity regarding the implementation process was registered. Cancer patients and healthcare professionals were interviewed and answered questionnaires. One thousand three hundred and twenty healthcare professionals were exposed to the implementation strategy. One hundred and twenty-nine cancer patients were followed up according to the standardized care pathway. Despite different perspectives of care, it was feasible to develop a standardized care pathway for palliative cancer patients across care settings. A paper-based patient-held record was only found to be useful by a limited number of patients. An extensive implementation process was completed and resulted in improvements regarding healthcare professionals' experience with the quality of cancer care in the region, but limited use of the care pathway in clinical practice. Further research should identify the most important elements for usefulness and successful implementation of the care pathway. [ABSTRACT FROM AUTHOR]

Background: Acute care and palliative care (PC) are described as different incompatible organisational care cultures. Few studies have observed the actual meeting between these two cultures. In this paper we report part of ethnographic results from an intervention study where a palliative care consultation team (PCCT) used an integrative bedside education approach, trying to embed PC principles and interventions into daily practice in acute wards. Purpose: To study the meeting and interaction of two different care cultures, palliative care and curative acute wards, when a PCCT introduces consulting services to acute wards regarding end-of-life palliative care, focusing on the differences between the cultures. Methods: An ethnographic study design was used, including observations, interviews and diary entries. A PCCT visited acute care wards during 1 year. The analysis was inspired by Spradleys ethnography. Results: Three themes were found: 1) Anticipations meets reality; 2) Valuation of time and prioritising; and 3) The content and creation of palliative care. Conclusion: There are many differences in values, and the way PC are provided in the acute care wards compared to what a PCCT expects. The didactic challenges are many and the PC require effort. [ABSTRACT FROM AUTHOR]

Background: Intolerable suffering is a common eligibility requirement for persons requesting assisted death, and although suffering has received philosophic attention for millennia, only recently has it been the focus of empirical inquiry. Robust theoretical knowledge about suffering is critically important as modern healthcare provides persons with different options at end-of-life to relieve suffering. The purpose of this paper is to present findings specific to the understanding and application of suffering in the context of MAID from nurses' perspectives. Methods: A longitudinal qualitative descriptive study using semi-structured telephone interviews. Inductive analysis was used to construct a thematic account. The study received ethical approval and all participants provided written consent. Results: Fifty nurses and nurse practitioners from across Canada were interviewed. Participants described the suffering of dying and provided insights into the difficulties of treating existential suffering and the iatrogenic suffering patients experienced from long contact with the healthcare system. They shared perceptions of the suffering that leads to a request for MAID that included the unknown of dying, a desire for predictability, and the loss of dignity. Eliciting the suffering story was an essential part of nursing practice. Knowledge of the story allowed participants to find the balance between believing that suffering is whatever the persons says it is, while making sure that the MAID procedure was for the right person, for the right reason, at the right time. Participants perceived that the MAID process itself caused suffering that resulted from the complexity of decision-making, the chances of being deemed ineligible, and the heighted work of the tasks of dying. Conclusions: Healthcare providers involved in MAID must be critically reflective about the suffering histories they bring to the clinical encounter, particularly iatrogenic suffering. Further, eliciting the suffering stories of persons requesting MAID requires a high degree of skill; those involved in the assessment process must have the time and competency to do this important role well. The nature of suffering that patients and family encounter as they enter the contemplation, assessment, and provision of MAID requires further research to understand it better and develop best practices. [ABSTRACT FROM AUTHOR]

Background: Palliative care education among all stakeholders involved in the care of patients with late-stage Parkinson's disease is not adequate. In fact, there are many unmet educational and training needs as confirmed with a targeted, narrative literature review. Methods: To address these needs we have developed the "Best Care for People with Late-Stage Parkinson's Disease" curriculum toolkit. The toolkit is based on recommendations and guidelines for training clinicians and other healthcare professionals involved in palliative care, educational material developed in recent research efforts for patients and caregivers with PD and consensus meetings of leading experts in the field. The final version of the proposed toolkit was drafted after an evaluation by external experts with an online survey, the feedback of which was statistically analysed with the chi-square test of independence to assess experts' views on the relevance and importance of the topics. A sentiment analysis was also done to complement statistics and assess the experts positive and negative sentiments for the curriculum topics based on their free text feedback. Results: The toolkit is compliant with Kern's foundational framework for curriculum development, recently adapted to online learning. The statistical analysis of the online survey, aiming at toolkit evaluation from external experts (27 in total), confirms that all but one (nutrition in advanced Parkinson's disease) topics included, as well as their objectives and content, are highly relevant and useful. Conclusions: In this paper, the methods for the development of the toolkit, its stepwise evolution, as well as the toolkit implementation as a Massive Open Online Course (MOOC), are presented. The "Best Care for People with Late-Stage Parkinson' s disease" curriculum toolkit can provide high-quality and equitable education, delivered by an interdisciplinary team of educators. The toolkit can improve communication about palliative care in neurological conditions at international and multidisciplinary level. It can also offer continuing medical education for healthcare providers. [ABSTRACT FROM AUTHOR]

Background: Researchers are encountering increasing challenges in recruiting participants for palliative and healthcare research. This paper aims to understand challenges to and methods for engaging physicians and seriously ill patients and their caregivers in research studies. Methods: Between October 2019 to July 2020, we conducted qualitative interviews with 25 patients, proxies, and caregivers participants who were eligible for a randomized controlled trial of home-based palliative care and 31 physicians from participating accountable care organizations. Using thematic analysis, we analyzed participants' responses to identify concepts and key ideas within the text. From these initial concepts, core themes around barriers to research and preferred research recruitment approaches were generated. Results: Themes from patient and caregiver interviews included time constraints, privacy concerns, lack of research familiarity, disconnect with research institution, self-perceived health status, and concerns with study randomization. Physician-identified barriers focused on time constraints and study randomization. Patient and caregiver recommendations for study recruitment included in-person recruitment, recruitment at healthcare providers' offices, recruitment via mail, additional study information, and frequent calls. Physician recommendations were related to placement of flyers at clinics, financial incentives, and formal events. Conclusions: Findings demonstrated that although patients and caregivers prefer that their physicians recruit them for health-related research studies, physicians identified time constraints as a consistent barrier to research involvement. [ABSTRACT FROM AUTHOR]

The importance of a clinical placement in graduate nursing programs has been recognized in the academic literature and in the advanced nursing practice workforce environment as being beneficial. During a placement, post-graduate students have opportunities to familiarize themselves with the Advanced Practice Nurse (APN) role and competencies, build networks, advance their personal and professional development, and validate their motivation and desire to pursue a particular professional area of advanced nursing practice. This paper describes reflections on a post-graduate clinical placement in palliative care, exercising the Canadian Nursing Association's (2019) APN competencies. Exposure to such a placement helps novice APNs develop a strategic and grounded advanced nursing practice foundation. [ABSTRACT FROM AUTHOR]

Background: Prognostic accuracy in palliative care is valued by patients, carers, and healthcare professionals. Previous reviews suggest clinicians are inaccurate at survival estimates, but have only reported the accuracy of estimates on patients with a cancer diagnosis. Objectives: To examine the accuracy of clinicians’ estimates of survival and to determine if any clinical profession is better at doing so than another. Data Sources: MEDLINE, Embase, CINAHL, and the Cochrane Database of Systematic Reviews and Trials. All databases were searched from the start of the database up to June 2015. Reference lists of eligible articles were also checked. Eligibility Criteria: Inclusion criteria: patients over 18, palliative population and setting, quantifiable estimate based on real patients, full publication written in English. Exclusion criteria: if the estimate was following an intervention, such as surgery, or the patient was artificially ventilated or in intensive care. Study Appraisal and Synthesis Methods: A quality assessment was completed with the QUIPS tool. Data on the reported accuracy of estimates and information about the clinicians were extracted. Studies were grouped by type of estimate: categorical (the clinician had a predetermined list of outcomes to choose from), continuous (open-ended estimate), or probabilistic (likelihood of surviving a particular time frame). Results: 4,642 records were identified; 42 studies fully met the review criteria. Wide variation was shown with categorical estimates (range 23% to 78%) and continuous estimates ranged between an underestimate of 86 days to an overestimate of 93 days. The four papers which used probabilistic estimates tended to show greater accuracy (c-statistics of 0.74–0.78). Information available about the clinicians providing the estimates was limited. Overall, there was no clear “expert” subgroup of clinicians identified. Limitations: High heterogeneity limited the analyses possible and prevented an overall accuracy being reported. Data were extracted using a standardised tool, by one reviewer, which could have introduced bias. Devising search terms for prognostic studies is challenging. Every attempt was made to devise search terms that were sufficiently sensitive to detect all prognostic studies; however, it remains possible that some studies were not identified. Conclusion: Studies of prognostic accuracy in palliative care are heterogeneous, but the evidence suggests that clinicians’ predictions are frequently inaccurate. No sub-group of clinicians was consistently shown to be more accurate than any other. Implications of Key Findings: Further research is needed to understand how clinical predictions are formulated and how their accuracy can be improved. [ABSTRACT FROM AUTHOR]

Patients seen by the palliative care team often have difficult and intractable symptoms. The current standard of practice to manage these symptoms is the deeply sedating midazolam continuous subcutaneous infusion for patients who are expected to expire within hours to days. Dexmedetomidine provides sedation but lacks evidence in palliative care use. This study describes continuous subcutaneous infusion of dexmedetomidine's effect on refractory pain and delirium. Retrospective, observational chart review and conducted in accordance with SQUIRE (quality improvement study). Twenty adult patients (18 years of age or older) with metastatic cancer disease admitted to three palliative complex care units of Fraser Health who received continuous subcutaneous infusion of dexmedetomidine between January 2017 to August 31, 2019. Average length of dexmedetomidine use was 9 days (1/3 length of stay). Eight of the 13 patients with pain symptoms exhibited an overall decline in pain. Four of the 6 patients with delirium had an initial decrease in delirium, but it did not last beyond the first day. Despite progressive clinical deterioration, adjunctive medications decreased or remained the same for 53% of as needed medications and 65% for regularly scheduled medications. Forty-five percent of patients had ≥50% days of rousable sedation. Hypotension occurred in 85% of patients. Dexmedetomidine provided benefit in managing intractable pain while allowing patients to remain rousable, but only had a short effect on delirium symptoms. [ABSTRACT FROM AUTHOR]

Qualitative case study research can be a helpful methodology when conducting health research. However, it can be overlooked or dismissed as a possible methodological choice due to different epistemological positionings by case study theorists and often confusing and contradictory definitions and terminology. Much has been written about case studies, but it takes time to wade through volumes of often philosophically and methodologically dense material to locate a theorist who presents case study research at a depth the novice researcher can understand. Case study research literature may offer a condensed summary of processes but often needs more theoretical detail. Therefore, discerning where to begin can be time-consuming, frustrating, and overwhelming. There are very few qualitative case study protocols and no stepby-step guide describing the planning and decision-making process within nursing. To address the need for clarity, this article endeavors to set out how to conduct a qualitative case study in a step-by-step guide using the approaches of Merriam and Stake as the foundation using a palliative care setting as an application example. It contributes to knowledge and practice by developing a foundational understanding of case study methodology in the hope that novice researchers will consider case study research as a methodological choice for their study and conduct it in a trustworthy and rigorous manner. [ABSTRACT FROM AUTHOR]

Children with End Stage Lung Disease (ESLD) are part of the growing population of individuals with life-limiting conditions of childhood. These patients present with a diverse set of pulmonary, cardiovascular, neuromuscular, and developmental conditions. This paper first examines five cases of children with cystic fibrosis, bronchopulmonary dysplasia, neuromuscular disease, pulmonary hypertension, and lung transplantation from Texas Children’s Hospital. We discuss the expected clinical course of each condition, then review the integration of primary and specialized palliative care into the management of each diagnosis. This paper then reviews the management of two children with end staged lung disease at Hospital Civil de Guadalajara, providing an additional perspective for approaching palliative care in low-income countries. [ABSTRACT FROM AUTHOR]

Conversation has been a primary means for the exchange of information since ancient times. Understanding patterns of information flow in conversations is a critical step in assessing and improving communication quality. In this paper, we describe COnversational DYnamics Model (CODYM) analysis, a novel approach for studying patterns of information flow in conversations. CODYMs are Markov Models that capture sequential dependencies in the lengths of speaker turns. The proposed method is automated and scalable, and preserves the privacy of the conversational participants. The primary function of CODYM analysis is to quantify and visualize patterns of information flow, concisely summarized over sequential turns from one or more conversations. Our approach is general and complements existing methods, providing a new tool for use in the analysis of any type of conversation. As an important first application, we demonstrate the model on transcribed conversations between palliative care clinicians and seriously ill patients. These conversations are dynamic and complex, taking place amidst heavy emotions, and include difficult topics such as end-of-life preferences and patient values. We use CODYMs to identify normative patterns of information flow in serious illness conversations, show how these normative patterns change over the course of the conversations, and show how they differ in conversations where the patient does or doesn't audibly express anger or fear. Potential applications of CODYMs range from assessment and training of effective healthcare communication to comparing conversational dynamics across languages, cultures, and contexts with the prospect of identifying universal similarities and unique "fingerprints" of information flow. [ABSTRACT FROM AUTHOR]

Some clues about simple and effective methods to aid prescribing safely and effectively come from two papers in this issue focusing on bronchodilator prescribing for patients with asthma. MacBride-Stewart I et al i assessed individualised feedback to GPs on bronchodilator prescribing using visual summaries and action-oriented messaging in a pragmatic cluster randomised trial in 233 GP practices in Scotland. Graph: Sam Merriel Prescribing medications for our patients is a core part of general practice. [Extracted from the article]

Background: There has been an increase in research on improving end of life (EoL) care for older people with dementia in care homes. Findings consistently demonstrate improvements in practitioner confidence and knowledge, but comparisons are either with usual care or not made. This paper draws on findings from three studies to develop a framework for understanding the essential dimensions of end of life care delivery in long-term care settings for people with dementia. Methods: The data from three studies on EoL care in care homes: (i) EVIDEM EoL, (ii) EPOCH, and (iii) TTT EoL were used to inform the development of the framework. All used mixed method designs and two had an intervention designed to improve how care home staff provided end of life care. The EVIDEM EoL and EPOCH studies tracked the care of older people in care homes over a period of 12 months. The TTT study collected resource use data of care home residents for three months, and surveyed decedents' notes for ten months, Results: Across the three studies, 29 care homes, 528 residents, 205 care home staff, and 44 visiting health care professionals participated. Analysis of showed that end of life interventions for people with dementia were characterised by uncertainty in three key areas; what treatment is the 'right' treatment, who should do what and when, and in which setting EoL care should be delivered and by whom? These uncertainties are conceptualised as Treatment uncertainty, Relational uncertainty and Service uncertainty. This paper proposes an emergent framework to inform the development and evaluation of EoL care interventions in care homes. Conclusion: For people with dementia living and dying in care homes, EoL interventions need to provide strategies that can accommodate or "hold" the inevitable and often unresolvable uncertainties of providing and receiving care in these settings. [ABSTRACT FROM AUTHOR]

An editorial is presented on the need for enhanced pediatric palliative care for neurological patients, including the gaps in support for families facing challenging decisions related to mechanical ventilation and the proposal for establishing a dedicated pediatric palliative care department.

Objective: In December 2016, 66 health leaders from 14 countries convened at the Salzburg Global Seminar (SGS) to engage in cross-cultural and collaborative discussions centered on 'Rethinking Care Toward the End of Life'. Conversations focused on global perspectives on death and dying, challenges experienced by researchers, physicians, patients and family caregivers. This paper summarizes key findings and recommendations from SGS.Design: Featured sessions focused on critical issues of end of life care led by key stakeholders, physicians, researchers, and other global leaders in palliative care. Sessions spanned across several critical themes including: patient/family/caregiver engagement, integrating health and community-based social care, eliciting and honoring patient preferences, building an evidence base for palliative care, learning from system failures, and delivering end of life care in low-resource countries. Sessions were followed by intensive collaborative discussions which helped formulate key recommendations for rethinking and ultimately advancing end of life care.Results: Prominent lessons learned from SGS include learning from low-resource countries, development of evidence-based quality measures, implementing changes in training and education, and respecting the personal agency of patients and their families.Conclusion: There is a global need to rethink, and ultimately revolutionize end of life care in all countries. This paper outlines key aspects of end of life care that warrant explicit improvement through specific action from key stakeholders. [ABSTRACT FROM AUTHOR]

Purpose: This joint position statement, by the Indian Association of Palliative Care (IAPC) and Academy of Family Physicians of India (AFPI), proposes to address gaps in palliative care provision in the country by developing a community-based palliative care model that will empower primary care physicians to provide basic palliative care. Evidence: India ranks very poorly, 67th of 80 countries in the quality of death index. Two-thirds of patients who die need palliative care and many such patients spend the last hours of life in the Intensive care unit. The Indian National Health Policy (NHP) 2017 and other international bodies endorse palliative care as an essential health-care service component. NHP 2017 also recommends development of distance and continuing education options for general practitioners to upgrade their skills to provide timely interventions and avoid unnecessary referrals. Methods: A taskforce was formed with Indian and International expertise in palliative care and family medicine to develop this paper including an open conference at the IAPC conference 2017, agreement of a formal liaison between IAPC and AFPI and wide consultation leading to the development of this position paper aimed at supporting integration, networking, and joint working between palliative care specialists and generalists. The WHO model of taking a public health approach to palliative care was used as a framework for potential developments; policy support, education and training, service development, and availability of appropriate medicines. Recommendations: This taskforce recommends the following (1) Palliative care should be integrated into all levels of care including primary care with clear referral pathways, networking between palliative care specialist centers and family medicine physicians and generalists in community settings, to support education and clinical services. (2) Implement the recommendations of NHP 2017 to develop services and training programs for upskilling of primary care doctors in public and private sector. (3) Include palliative care as a mandatory component in the undergraduate (MBBS) and postgraduate curriculum of family physicians. (4) Improve access to necessary medications in urban and rural areas. (5) Provide relevant in-service training and support for palliative care to all levels of service providers including primary care and community staff. (6) Generate public awareness about palliative care and empower the community to identify those with chronic disease and provide support for those choosing to die at home. [ABSTRACT FROM AUTHOR]

Background: 'Whole-person' palliative approaches to care (PAC) are important for enhancing the quality of life of residents with life-limiting conditions in long-term care (LTC). This research is part of a larger, four province study, the 'SALTY (Seniors Adding Life to Years)' project to address quality of care in later life. A Quality Improvement (QI) project to integrate a PAC (PAC-QI) in LTC was implemented in Western Canada in four diverse facilities that varied in terms of ownership, leadership models, bed size and geography. Two palliative 'link nurses' were hired for 1 day a week at each site over a two-year time frame to facilitate a PAC and support education and training. This paper evaluates the challenges with embedding the PAC-QI into LTC, from the perspectives of the direct care, or front-line team members. Sixteen focus groups were undertaken with 80 front-line workers who were predominantly RNs/LPNs (n = 25), or Health Care Aides (HCAs; n = 32). A total of 23 other individuals from the ranks of dieticians, social workers, recreation and rehabilitation therapists and activity coordinators also participated. Each focus group was taped and transcribed and thematically analyzed by research team members to develop and consolidate the findings related to challenges with embedding the PAC.Results: Thematic analyses revealed that front-line workers are deeply committed to providing high quality PAC, but face challenges related to longstanding conditions in LTC notably, staff shortages, and perceived lack of time for providing compassionate care. The environment is also characterized by diverse views on what a PAC is, and when it should be applied. Our research suggests that integrated, holistic and sustainable PAC depends upon access to adequate resources for education, training for front-line care workers, and supportive leadership.Conclusions: The urgent need for integrated PAC models in LTC has been accentuated by the current COVID-19 pandemic. Consequently, it is more imperative than ever before to move forwards with such models in order to promote quality of care and quality of life for residents and families, and to support job satisfaction for essential care workers. [ABSTRACT FROM AUTHOR]

Background: Based on the case of palliative care and euthanasia in the Netherlands, this paper presents an analysis of frames and counter-frames used in the ongoing public debate about these two intertwined topics. Each (counter)frame presents a cultural theme that can act as a prism to give meaning to palliative care and/or euthanasia. Each frame comprehends a different problem definition, consequences and policy options. Typical word choices and metaphors are identified that can evoke these frames and the underlying reasoning. The frames do not belong to a specific stakeholder but a pattern can be seen in their use that is related to interests and ideology. Methods: An inductive framing analysis was conducted of 2,700 text fragments taken from various Dutch newspapers, websites of stakeholders and policy documents in the period 2016–2018. After an extensive process of thematic coding, axial coding, selective coding and peer review seven frames and seven counter-frames about palliative care and euthanasia were constructed. Fifteen experts in the field of palliative and/or end-of-life care commented on the overview during a member check. Results: Two frames about palliative care were constructed: the Fear of death frame, which stresses the hopeless 'terminality' of palliative care and the Heavy burden frame, in which palliative care is too big a responsibility for the relatives of the patient. In addition, two counter-frames were constructed: palliative care as a contributor to Quality of life and Completion. With regard to euthanasia, five frames were identified that lead to a problematising definition: Thou shalt not kill, Slippery slope, Lack of willpower, I am not God, and Medical progress. Five counter-frames offer a non-problematising definition of euthanasia in the debate: Mercy, Prevention, Triumph of reason, Absolute autonomy, and Economic utility thinking. Conclusions: The debate in the Netherlands on euthanasia and palliative care is characterized by a plurality of angles that goes beyond the bipolar distinction between the pros and cons of euthanasia and palliative care. Only with an overview of all potential frames in mind can an audience truly make informed decisions. The frame matrix is not only useful for policy makers to know all perspectives when joining public debate, but also to health care workers to get into meaningful conversations with their patients and families. [ABSTRACT FROM AUTHOR]

As pediatric palliative care (PPC) became a recognized medical specialty, our developing clinical PPC team longitudinally partnered with bereaved parents to understand the care that their children received as they transitioned towards end of life. Families developed Eight Priorities, shared within, to improve care for children with a poor chance of survival based on their experience of losing a child to cancer. In this paper, we delineate the top eight PPC needs from a parent perspective to offer multi-layered, individually tailored resources for patients and families. One of these Eight Priorities noted that bereavement care for the remaining family members is vital for healing after the death of a child to promote meaning making and resilience in bereaved families. Here, we outline the creation of a bereaved parent-designed bereavement support program as one example of how we have partnered with parents to fulfill their Eight Priorities for quality care. [ABSTRACT FROM AUTHOR]

Background: Primary healthcare centers (PHC) ensure that patients receive comprehensive care from promotion and prevention to treatment, rehabilitation, and palliative care in a familiar environment. It is designed to provide first-contact, continuous, comprehensive, and coordinated patient care that will help achieve equity in the specialty healthcare system. The healthcare in Saudi Arabia is undergoing transformation to Accountable Care Organizations (ACO) model. In order for the Kingdom of Saudi Arabia (KSA) to achieve its transformational goals in healthcare, the improvement of PHCs' quality and utilization is crucial. An integral part of this service is the laboratory services. Methods: This paper presents a pilot model for the laboratory services of PHC's in urban cities. The method was based on the FOCUS-PDCA quality improvement method focusing on the pre-analytical phase of the laboratory testing as well as the Saudi Central Board for Accreditation of Healthcare Institutes (CBAHI) gap analysis and readiness within the ten piloted primary healthcare centers. Results: The Gap analysis, revealed in-consistency in the practice, lead to lower the quality of the service, which was seen in the low performance of the chosen key performance indicators (KPI's) (high rejection rates, lower turn-around times (TAT) for test results) and also in the competency of the staff. Following executing the interventions, and by using some of the ACO Laboratory strategies; the KPI rates were improved, and our results exceeded the targets that we have set to reach during the first year. Also introducing the electronic connectivity improved the TAT KPI and made many of the processes leaner. Conclusions: Our results revealed that the centralization of PHC's laboratory service to an accredited reference laboratory and implementing the national accreditation standards improved the testing process and lowered the cost, for the mass majority of the routine laboratory testing. Moreover, the model shed the light on how crucial the pre-analytical phase for laboratory quality improvement process, its effect on cost reduction, and the importance of staff competency and utilization. [ABSTRACT FROM AUTHOR]

Individuals with cancer and their families assume responsibility for management of cancer as an acute and chronic disease. Yet, cancer lags other chronic diseases in its provision of proactive self-management support in routine, everyday care leaving this population vulnerable to worse health status, long-term disability, and poorer survival. Enabling cancer patients to manage the medical and emotional consequences and lifestyle and work changes due to cancer and treatment is essential to optimizing health and recovery across the continuum of cancer. In this paper, the Global Partners on Self-Management in Cancer puts forth six priority areas for action: Action 1: Prepare patients and survivors for active involvement in care; Action 2: Shift the care culture to support patients as partners in cocreating health and embed self-management support in everyday health-care provider practices and in care pathways; Action 3: Prepare the workforce in the knowledge and skills necessary to enable patients in effective self-management and reach consensus on core curricula; Action 4: Establish and reach consensus on a patient-reported outcome system for measuring the effects of self-management support and performance accountability; Action 5: Advance the evidence and stimulate research on self-management and self-management support in cancer populations; Action 6: Expand reach and access to self-management support programs across care sectors and tailored to diversity of need and stimulation of research to advance knowledge. It is time for a revolution to better integrate self-management support as part of high-quality, person-centered support and precision medicine in cancer care to optimize health outcomes, accelerate recovery, and possibly improve survival. [ABSTRACT FROM AUTHOR]

Aim: Family surrogate decision‐making during the later stage of a patient's life may sometimes result in conflict and emotional distress among the parties involved. The present article aims to promote ethical end‐of‐life decision‐making among healthcare professionals in a view to eliminating any misunderstanding that may arise while meeting the care needs of the patient. Design: A case study involving a request for treatment withdrawal by the family of a patient on end of life. Methods: This paper draws upon a scenario encountered during practice to analyse the moral commitments in delivering high‐quality end‐of‐life care with much emphasis on pre‐existing palliative care guidelines for adults. Results: Healthcare professionals are bound by the principle of beneficence, non‐maleficence, autonomy and justice. Although the use of guidelines may be tenable, decisions often take into consideration the patient's choice and then weighed against the moral values of healthcare specialists and those required in the profession. [ABSTRACT FROM AUTHOR]

This narrative explores the intersection of my work as a professional social worker in an oncology and palliative care setting and my previous experience of the loss of my sister. Despite being committed to reflective practice, I found that I was blindsided in the course of my work when my professional and personal worlds collided. In this paper, I detail my retrospective reflection on the emotional labour associated with working in oncology and palliative care, and how I had not recognised how the thread of loss running through my life was interwoven with my professional life. The discussion draws on narrative theory and meaning making as a way of making sense of the experience of when the professional and personal worlds overlap and asks if we, as professionals, can be truly authentic with our clients if we have not engaged fully with the self-reflective process. [ABSTRACT FROM AUTHOR]

Background: Personalized healthcare relies on the identification of factors explaining why individuals respond differently to the same intervention. Analyses identifying such factors, so called predictors and moderators, have their own set of assumptions and limitations which, when violated, can result in misleading claims, and incorrect actions. The aim of this study was to develop a checklist for critically appraising the results of predictor and moderator analyses by combining recommendations from published guidelines and experts in the field.Methods: Candidate criteria for the checklist were retrieved through systematic searches of the literature. These criteria were evaluated for appropriateness using a Delphi procedure. Two Delphi rounds yielded a pilot checklist, which was tested on a set of papers included in a systematic review on reinforced home-based palliative care. The results of the pilot informed a third Delphi round, which served to finalize the checklist.Results: Forty-nine appraisal criteria were identified in the literature. Feedback was obtained from fourteen experts from (bio)statistics, epidemiology and other associated fields elicited via three Delphi rounds. Additional feedback from other researchers was collected in a pilot test. The final version of our checklist included seventeen criteria, covering the design (e.g. a priori plausibility), analysis (e.g. use of interaction tests) and results (e.g. complete reporting) of moderator and predictor analysis, together with the transferability of the results (e.g. clinical importance). There are criteria both for individual papers and for bodies of evidence.Conclusions: The proposed checklist can be used for critical appraisal of reported moderator and predictor effects, as assessed in randomized or non-randomized studies using individual participant or aggregate data. This checklist is accompanied by a user's guide to facilitate implementation. Its future use across a wide variety of research domains and study types will provide insights about its usability and feasibility. [ABSTRACT FROM AUTHOR]

Background: Ninety-eight percent of children needing palliative care live in low- and middle-income countries (LMICs), and almost half of them live in Africa. In contrast to the abundance of data on populations in high income countries, the current data on populations in LMICs is woefully inadequate. This study aims to identify and summarize the published literature on the need, accessibility, quality, and models for palliative care for children in LMICs. Methods: A scoping review was performed following the method of Arksey and O'Malley. Systematic searches were conducted on PubMed and Google Scholar using the main keywords, 'children AND palliative care OR terminal care OR hospice OR end of life AND developing countries OR LMICs.' Additional publications were obtained by handsearching. Papers were only included if they reported on the need, accessibility, quality, and models for palliative care for children in LMICs. Results: Fifteen papers met the inclusion criteria for review. Of these, 10 assessed need, seven examined availability and/or accessibility, one assessed quality, and one examined the models. We found an urgent need for palliative care, particularly in the training for health workers and improving poor availability and/or accessibility to palliative care in terms of factors such as medication and bereavement support. The best practice models demonstrated feasibility and sustainability through cooperation with governments and community organizations. The quality of pain management and emotional support was lower in LMICs compared to HICs. Conclusion: Although we found limited evidence in this review, we identified common challenges such as the need for further training for health workers and greater availability of opioid analgesics. While efforts to change the current systems and laws applying to children in LMICs are important, we should also tackle underlying factors including the need to raise awareness about palliative care in public health and improve the accuracy of data collection. [ABSTRACT FROM AUTHOR]

Organ donation is critical to the survival of thousands of people waiting for an organ transplant. While nurses take responsibility for patient and family comfort and quality of dying whenever patients die in the intensive care unit (ICU), organ donation presents unique challenges to these ideals. Critical care settings are essential for organ donation, where candidates for donation are identified, referred, stabilized, and maintained until organs can be retrieved. Nurses may feel challenged in completing organ donation-related tasks without forsaking values and practices that are typically associated with a palliative nursing approach and the achievement of a ‘good death’ in the ICU. Further, the moral uncertainty in this context could be increasing, given the advent of a new pathway for organ donation in ICU: medical assistance in dying (MAiD). In this paper, we reflect on the ethical meanings, challenges and possibilities of a good death in the context of organ donation in ICU nursing. We argue that personhood—as a conceptual frame to guide nursing practice—offers one way of reconciling seemingly disparate values and practices. To illustrate the importance of integrating this concept, we draw on real-life case studies from clinical ICU nursing. These examples showcase the emotional engagement and moral tension that nurses could experience when caring for people who occupy a liminal space between life and death. Ultimately, we hope this paper will inspire and support ethical reflection and action among ICU nurses caring for organ donors. [ABSTRACT FROM AUTHOR]

This viewpoint paper explores the growing emphasis and social need for palliative care from a global perspective, juxtaposed against the Hong Kong status quo and its increasing need for such services. It further highlights that the role of nursing within palliative care is central to patients receiving the best quality of care. Hong Kong's current delivery models are generally insufficient and can be improved by the adoption of five recommended policy changes, which reinforce the position of nurses as vital to creating a better service. These recommendations will enable nurses to take the lead in future palliative care delivery frameworks, enabling more efficient planning of future management of patients' pain and other symptoms, social, spiritual, or emotional needs that arise during assessment. Its value may extend to other countries and settings. [ABSTRACT FROM AUTHOR]

Background: COVID-19 has been causing a high burden of suffering for patients and families. There is limited evidence on the preparedness of Indian palliative care services for the pandemic. Aim: This study aimed to assess the preparedness and capacity of Indian palliative care services in response to the COVID-19 pandemic. Methods: A cross-sectional online survey was developed based on prior evidence and international health regulations. It was emailed to the Indian Palliative Care Association members and investigators' professional networks in India. One participant per palliative care service was requested. Descriptive analysis was used. Results: Representatives of 78 palliative care services completed the survey. Three in four services had COVID-19 case definition and adapted their protocols for infection control (75%). About half of the services (55%) reported concerns about achieving appropriate hand hygiene in the community. More than half of the services (59%) had capacity to train nonspecialists for symptom control and psychological support. About half of the services reported that they had plans to redeploy staff (56%) and resources (53%) in the case of outbreaks. Two-fifths of the services used paper records to store an updated contact list of staff (40%) and did not have designated focal contacts for information update (40%). Staff anxiety related to personal infection risk and family care was relatively high (median score = 7 on a 1–10 scale). Conclusion: We recommend the following resource allocation to enable palliative care services to support the Indian health system in delivering essential care in this and future pandemics: (1) infection control, especially in the community; (2) training using existing clinical protocols to strengthen palliative care across the health system; and (3) redeployment plans. [ABSTRACT FROM AUTHOR]

Definitions and understandings of the term "community health" are numerous, but generally orient themselves around an expanded understanding of health exceeding biomedical imperatives. Rethinking the conception of community health through a vitalistic approach with the idea of health, and thus the community, at its core allows for a deeper understanding of health experiences' complexity and could eventually inspire practice innovations in community health centers. In this paper, we will present this theoretical conception of health and discuss how it can help to understand the innovative interventions approach conducted within community health centres in Canada. Specifically, the practical implications of this theoretical conception will be illustrated through two Canadian community health centres. A new perspective on health could have numerous implications for health professionals with the development of cutting-edge interventions potentially leading to change benefiting the community, but also for teaching and research innovations empowered by a deeper understanding of the wider story behind health issues. [ABSTRACT FROM AUTHOR]

Background: Interprofessional collaboration is an important part of palliative care. Effective communication and information exchange is essential for a high quality of care. The aim of this study was to test the effectiveness of a new tool for exchanging information between professionals in palliative care on primary healthcare level. Methods: With suggestions from the experts regarding palliative care needs in an interprofessional team from the Delphi study and community nurses from the field, we developed a paper version of the tool. The paper version was tested in a pilot phase, and subsequently, we conducted ten semi-structured interviews with the users of the new tool to test its feasibility and usability. The data were analyzed using qualitative content analysis, leading to improvement and development of the digital version of the new tool. Results: After completing the pilot phase of the research, we identified the following four categories: a systematic tool for more consistent treatment and better communication during the patient's visit; training and empowerment; quality, safety and digitalization; these categories were later included in the final version of the digital communication tool. Conclusion: Effective palliative care requires a good exchange of information and communication between all care professionals who work with the patient. Effective communication contributes to making patients and their relatives feel safe in their home environment and allows patients to stay in their homes even as their disease progresses. The systematical new tool was assessed as useful to improve interdisciplinary cooperation and prepared in a digital version. Further research after the long-term use of the developed digital tool in everyday work might confirm its sustaining importance. [ABSTRACT FROM AUTHOR]

Background Research is needed to inform palliative care models that address the full spectrum of quality of life (QoL) needs for brain tumor patients and care partners. Stakeholder engagement in research can inform research priorities; engagement via social media can complement stakeholder panels. The purpose of this paper is to describe the use of Twitter to complement in-person stakeholder engagement, and report emergent themes from qualitative analysis of tweet chats on QoL needs and palliative care opportunities for brain tumor patients. Methods The Brain Cancer Quality of Life Collaborative engaged brain tumor (#BTSM) and palliative medicine (#HPM) stakeholder communities via Twitter using tweet chats. The #BTSM chat focused on defining and communicating about QoL among brain tumor patients. The #HPM chat discussed communication about palliative care for those facing neurological conditions. Qualitative content analysis was used to identify tweet chat themes. Results Analysis showed QoL for brain tumor patients and care partners includes psychosocial, physical, and cognitive concerns. Distressing concerns included behavioral changes, grief over loss of identity, changes in relationships, depression, and anxiety. Patients appreciated when providers discussed QoL early in treatment, and emphasized the need for care partner support. Communication about QoL and palliative care rely on relationships to meet evolving patient needs. Conclusions In addition to providing neurological and symptom management, specialized palliative care for brain tumor patients may address unmet patient and care partner psychosocial and informational needs. Stakeholder engagement using Twitter proved useful for informing research priorities and understanding stakeholder perspectives on QoL and palliative care. [ABSTRACT FROM AUTHOR]

Background. The demand for hospice and palliative care is growing as a result of the increase of an aging population, which is most prominent in North America. Despite the importance of the topic and an increase in hospice and palliative care utilization, there still are gaps in research and evidence within the field. Aim. To determine what gaps currently exist in hospice and palliative/end-of-life care research within the context of a North American setting to ensure that future directions are grounded in appropriate evidence. Methods. Using Arksey and O'Malley's scoping review framework, six peer-reviewed, and four grey electronic literature databases in healthcare and the social sciences were searched in mid-2019. 111 full-text articles were retrieved, with 25 articles and reports meeting the inclusion criteria. Major themes were identified through thematic context analysis: (1) clinical, (2) system access to care, (3) research methodology, and (4) caregiving-related research gaps. Results. Findings include strategies for engaging stakeholder organizations and funding agencies, implications for other stakeholder groups such as clinicians and researchers, and highlight implications for policy (e.g., national framework discussion) and practice (e.g., healthcare provider education and training and public awareness). Conclusion. Reviewing and addressing targeted research gaps is essential to inform future directions in Canada and beyond. [ABSTRACT FROM AUTHOR]

The finite nature of human existence leads many to search for meaning, which comes into sharper relief for those who are imminently facing death. Therefore, universal existential concerns such as the inevitability of death, existential isolation, loss of meaning, freedom, and dignity are inherent psychological issues in palliative care. Consequently, one of the critical challenges facing palliative care is how to address these issues effectively. This paper provides an overview of common themes of existential concerns and psychotherapeutic interventions to address existential distress among patients in palliative care. [ABSTRACT FROM AUTHOR]

A literature search was started with the objective of finding works pertaining to the use of operations research techniques in planning for human resources in palliative care. Since the search indicated that there is no such work, in this paper, we report on the literature on workforce planning and human resource planning for palliative care personnel. Using our findings, we discuss the factors that influence the supply and demand for the palliative care workforce. Our results show that the enhancement of efficiency, training more primary caregivers to deliver palliative care, and allowing for mid-career specialist training are practical ways to compensate for the gap between the supply and demand in the palliative care workforce. [ABSTRACT FROM AUTHOR]

This paper examines palliative care within the human rights in patient care framework, which clarifies state obligations and addresses the rights of both patients and providers. In the context of palliative care, these rights extend beyond the right to health and include patient rights to freedom from torture, cruel and inhuman treatment, non-discrimination and equality, bodily integrity, privacy and confidentiality, information, and right to a remedy. They also encompass provider rights to decent working conditions, freedom of association, and due process. The paper then looks at a case study of Armenia, acknowledging how the government's commitment to palliative care, combined with awareness raising and advocacy by human rights organizations, created an enabling environment for the realization of human rights in patient care in the context of palliative care. [ABSTRACT FROM AUTHOR]

Background of Hypothesis: Myofascial pain syndrome (MPS) is the most common musculoskeletal pain disorder of the head and neck area. In the past, several theories were put forth to explain its origin and nature, but none proved complete. Myofascial pain responds to changing psychological states and stress, anxiety, lack of sleep, anger, depression and chronic pain are direct contributional factors. Myofascial pain syndrome may be considered as a psychosomatic disorder. There are numerous accepted palliative approaches, but of all, relaxation techniques stand out and initiate healing at the base level. In this article, the connection between mental factors, MPS and meditation are highlighted. Recent literature has shed light on the fundamental role of free radicals in the emergence of myofascial pain. The accumulating free radicals disrupt mitochondrial integrity and function, leading to sustenance and progression of MPS. Meditation on the other hand was shown to reduce free radical load and can result in clinical improvement. 'Mindfulness' is the working principle behind the effect of all meditations, and I emphasize that it can serve as a potential tool to reverse the neuro-architectural, neurobiological and cellular changes that occur in MPS. Conclusions: The findings described in this paper were drawn from studies on myofascial pain, fibromyalgia, similar chronic pain models and most importantly from self experience (experimentation). Till date, no hypothesis is available connecting MPS and meditation. Mechanisms linking MPS and meditation were identified, and this paper can ignite novel research in this direction. [ABSTRACT FROM AUTHOR]

Palliative care is increasingly delivered in the community but access to medicines, particularly 'out of hours' remains problematic. This paper describes the experience of developing a model to deliver pharmaceutical palliative care in rural Scotland via the MacMillan Rural Palliative Care Pharmacist Practitioner (MRPP) project. The focus of the service was better integration of the MRPP into different care settings and professional teams, and to develop educational resources for the wider MDT including Care Home and Social Care staff on medicine related issues in palliative care. A variety of integration activities are reported in the paper with advice on how to achieve this. Similarly, many resources were developed, including bespoke training on pharmaceutical matters for Care Home staff. The experience allowed for a three step service and sustainability model for community pharmacy palliative care services to be developed. Moving through the steps, the key roles and responsibilities of the MRPP gradually shift towards the local Community Pharmacist(s), with the MRPP starting from a locality-based hands-on role to a wider supportive facilitating role for local champions. It is acknowledged that successful delivery of the model is dependent on alignment of resources, infrastructure and local community support. [ABSTRACT FROM AUTHOR]

Having a child with an incurable disease is a very difficult situation for the family and it interferes with their whole lives. Palliative care is provided by a specially educated multidisciplinary team that works closely with the members so that they can solve all kinds of problems together. In addition to healthcare professionals, social workers are often a part of the multidisciplinary team as well. The paper shows the specifics of paediatric palliative care, its current trends, development and further characteristics of work of social workers. Through ongoing research the authors are mapping the current state of providing palliative care in Slovakia. The paper presents partial results focused on roles of social workers in selected organizations providing specialized paediatric palliative care. [ABSTRACT FROM AUTHOR]

Background: Research suggests that there may be bereavement experiences and support needs which are specific to family caregivers providing end of life care (EoLC), although this remains an under-researched area. This paper focuses on themes relating to bereavement which were derived from an analysis of free text survey responses collected in a research priority setting exercise for palliative and EoLC. Methods: The priority setting exercise involved a public survey, designed to generate research priorities. Rather than identify research topics, many people instead described their experiences and raised more general questions relating to palliative and end of life care. To explore these experiences and perspectives a supplementary thematic analysis was conducted on the survey responses. 1403 respondents took part, including patients, current and bereaved carers, health and social care professionals, volunteers and members of the public. Results: Several grief issues were identified, which seem specific to the experiences of family caregivers. Responses demonstrated a relationship between death experiences, feelings of guilt and bereavement outcomes for some family caregivers, as well as caregiver experiences of a "void" created by the withdrawal of professional support after death. Communication and support needs were also identified by participants. Conclusion: This analysis provides further evidence of some of the specific effects that caring for a loved one at the end of life can have on bereavement experiences. Finding ways of improving communication around the time of death and effective follow up approaches post death could help to address some of these issues. [ABSTRACT FROM AUTHOR]

Background: The requirement to meet the palliative needs of acute hospital populations has grown in recent years. With increasing numbers of frail older people needing hospital care as a result of both malignant and nonmalignant conditions, emphasis is being placed upon understanding the physical, psychological and social burdens experienced by patients. This study explores the extent of burden in two large UK hospitals, focusing upon those patients who meet palliative care criteria. Furthermore, the paper explores the use of palliative services and identifies the most significant clinical diagnostic and demographic factors which determine physical and psychological burden. Methods: Two hospital surveys were undertaken to identify burden using the Sheffield Profile for Assessment and Referral to Care (SPARC). The Gold Standards Framework (GSF) is used to identify those patients meeting palliative care criteria. Participants were identified as being in-patients during a two-week data collection phase for each site. Data was gathered using face-to-face interviews or self-completion by patients or a proxy. Descriptive analyses highlight prevalence and use of palliative care provision. Binary logistic regression assesses clinical diagnostic predictor variables of physical and psychological burden. Results: The sample consisted of 514 patients and elevated physical, psychological and social burden is identified amongst those meeting palliative care criteria (n = 185). Tiredness (34.6%), pain (31.1%), weakness (28.8%) and psychological discomfort (low mood 19.9%; anxiety 16.1%) are noted as being prevalent. A small number of these participants accessed Specialist Palliative Care (8.2%). Dementia was identified as a predictor of physical (OR 3.94; p < .05) and psychological burden (OR 2.88; p < .05), being female was a predictor of psychological burden (OR 2.00; p < .05). Conclusion: The paper highlights elevated levels of burden experienced by patients with palliative care requirements. Moreover, the paper also indicates that a large proportion of such patients are not in receipt of palliative approaches to their care. Furthermore, the paper identifies that those with non-malignant illnesses, especially dementia, may experience high levels of physical and psychological burden. [ABSTRACT FROM AUTHOR]

Introduction. Palliative care is associated with life-threatening diseases and especially the last phase between life and death - end-of-life. Although noted, the emotion, trauma, despair and physical deterioration of this phase are not fully acknowledged in information behaviour and health care literature. Patients' and families' unmet information needs and frustrations remain of concern. Method. To deepen understanding of the complexity of information behaviour in palliative care and identification of information needs not recognised and/or not expressed, the paper advocates exploring (identifying and labelling) diverse and multiple contexts in palliative care that have been noted from the literature reporting on information behaviour in palliative care, as well as palliative care per se. Analysis. An exploratory information behaviour model depicting diverse contexts in palliative care is used to direct brief discussions of the contexts of informing, awareness, location of disease and disease trajectory, pain, support and social networks, and location of care, as examples of such contexts. The paper focuses on patients. Conclusions. Considering diverse, multiple, overlapping contexts in relation to palliative care and information behaviour might contribute to identifying dormant and unexpressed information needs, and deepening understanding of the complexity and diversity of information behaviour. A wider spectrum of contexts might be noted through further in-depth content analysis of the literature on palliative care and related issues to direct further research. The paper reports on work in progress. [ABSTRACT FROM AUTHOR]

Objective: This quality improvement project aimed to explore the experience of home care nurse managers implementing a general palliative approach to care. Implementation comprised several interlinking activities encompassing stakeholder engagement and an education program in the outer eastern region of a home care and nursing organisation in Melbourne, Australia, between September 2019 and December 2020. Background: High quality provision of community-based palliative and end-of-life care means people are much more likely to die at home, supported by family, friends and services. To achieve this, care staff must be adequately trained and supported, alongside a collaborative approach with other generalist and specialist providers. Study design and methods: This Case Study reports on the participant perspectives of the stakeholder engagement and education program. Focus groups and an interview were used to elucidate the experience of nursing and allied health professionals providing a general palliative approach in the community. The 2006 National Institute of Clinical Studies framework to identify barriers to best practice healthcare guided the development of focus group questions and the deductive analysis of data. Results: Seven Nursing Care Managers and one Social Worker participated in two online focus groups and one interview. Three overarching themes highlighted the value of tailored education in increasing staff knowledge and confidence, the factors for a successful generalist-specialist partnership, and the unique nature of the home care setting which requires accessible systems and processes. Discussion: This project supports assertions that generalist services can play a valuable role when a palliative approach to care is incorporated. It also underscores the importance of collaborative working partnerships between generalist and specialist services in providing quality community-based palliative care. Future research should examine the needs and perspective of clients, carers and families receiving a general palliative care approach in the community. Implications for research, policy and practice: Investment in developing the capacity and capability of generalist service staff to deliver palliative care is vital, particularly when caring for people in their homes. Although small, this study demonstrates that consideration should be given to embedding staff with specialist palliative care training within generalist organisations to drive and champion evidence-based palliative care provision, training, policies and procedures that meet the unique needs of mobile workforces. Future research should examine the effectiveness of different models and methods for education and generalist-specialist partnerships that meet the needs of mobile home nurses, particularly regarding long-term impact and sustainability. What is already known about the topic? * Most Australians prefer to be cared for and die in their own home. * Home care nurses are key generalist health professionals who support community-based palliative and end-of-life care, organising and providing care, coordinating the input of other health and social care professionals. * Home care nurses face challenges in meeting their clients' palliative care needs (such as symptom management and communication) and have deficits in their knowledge and confidence of caring for palliative clients. What this paper adds: * This case study demonstrated that facilitating ongoing education opportunities that draw on the expertise of local palliative care champions or internal specialists can enhance care provision. * Nurse care managers believe the value of generalist services, particularly home care services, in the generalist-specialist palliative care partnership, needs to be understood and respected. * Tailored investment in home care to provide a general palliative approach would be beneficial given the unique challenges of this mobile workforce. [ABSTRACT FROM AUTHOR]