Search

Abstract: Context: A number of research projects have been conducted that aim to gather data on the international development of palliative care. These data are important for policy makers and palliative care advocates. Objectives: The aim of this article was to provide a critical comparative analysis of methodological approaches used to assess the development and status of palliative care services and infrastructure at an international level. Methods: A selective literature review that focused on the methodological features of eight identified reports was undertaken. Results: Reviewed reports were found to differ in adopted methodologies and provided uneven amounts of methodological information. Five major methodological limitations were identified (lack of theory, use of experts as source of information, grey literature, difficulties in ranking, and the problematic nature of data on service provision). A set of recommendations on how to deal with these issues in future research is provided. Conclusion: Measuring the international development of palliative care is a difficult and challenging task. The results of this study could be used to improve the validity of future research in this field. [Copyright &y& Elsevier]

Abstract: Context: Throughout Europe, there are major differences in the stages of development and in the types of service delivery of palliative care. Consensus on standards and norms for palliative care in Europe is needed for advocacy and health policy decision making. Objectives: To provide an empirical basis for a common understanding of palliative care delivery in Europe. Methods: A two-round, online consensus Delphi study was undertaken with a multiprofessional expert panel of board members of national hospice and palliative care associations in Europe. Results: Respondents represented 80% of the member associations of the European Association for Palliative Care, comprising 96 experts and 35 national hospice and palliative care associations from 22 countries. High to very high consensus was found for common values and principles of palliative care (e.g., autonomy, dignity) and the provision of different levels of palliative care. Lower consensus emerged for concepts such as end-of-life care or terminal care, the demand of services and the composition of palliative care teams. The role of social workers was emphasized, but there was ambiguity about the contribution of psychologists. The need for health professionals without specialist palliative care skills to strengthen their contribution to palliative care provision was emphasized. Conclusion: Overall, this study contributed to a higher level of consensus toward the proposed recommendations. Expert comments underlined the need for clearer definitions and specifications of terms and indicated important topics where cultural issues, geographical aspects, and the local health care setting have to be considered in palliative care. [Copyright &y& Elsevier]

Context: Supplementary support services in palliative care for older people are increasingly common, but with neither recommended tools to measure outcomes nor reviews synthesizing anticipated outcomes. Common clinically focused tools may be less appropriate.Objectives: To identify stakeholder perceptions of key outcomes from supplementary palliative care support services, then map these onto outcome measurement tools to assess relevance and item redundancy.Methods: A scoping review using the design by Arksey and O'Malley. EMBASE, CINAHL, MEDLINE, and PSYCHinfo searched using terms relating to palliative care, qualitative research, and supplementary support interventions. Articles were imported into Endnote™, and Covidence™ was used by two reviewers to assess against inclusion criteria. Included articles were imported into NVivo™ and thematically coded to identify key concepts underpinning outcomes. Each item within contender outcome measurement tools was assessed against each concept.Results: Sixty included articles focused on advance care planning, guided conversations, and volunteer befriending services. Four concepts were identified: enriching relationships; greater autonomy and perceived control; knowing more; and improved mental health. Mapping concepts to contender tool items revealed issues of relevance and redundancy. Some tools had no redundant items but mapped only to two of four outcome themes; others mapped to all concepts, but with many redundant questions. Tools such as ICECAP-Supportive Care Measure and McGill Quality of Life had high relevance and low redundancy.Conclusion: Pertinent outcome concepts for these services and population are not well represented in commonly used outcome measurement tools, and this may have implications in appropriately measuring outcomes. This review and mapping method may have utility in fields where selecting appropriate outcome tools can be challenging. [ABSTRACT FROM AUTHOR]

Palliative care (PC) integration is vital, as endorsed by the World Health Organization. Yet, Jordan, a Middle Eastern country with limited resources, faces ongoing challenges despite efforts to improve palliative and home care. Establishing a national PC strategic framework, with government and stakeholder consensus, is essential for ensuring universal access to high-quality palliative care. However, processes for achieving this, particularly in the Middle East, are underreported. This study delineates the process of developing Jordan's National Palliative and Home Care Strategic Framework, reflecting on its five-year impact. Additionally, it identifies barriers to PC progress in Jordan and offers recommendations to stakeholders. We conducted a rapid review and analyzed reports, minutes, meetings, and publications. The sequential framework development involved content and situational analysis, expert review, transparent expert consultation, multistage consensus procedures, and high-level advocacy meetings. The National Palliative and Home Care Strategic Framework encompasses six domains: 1) policy, 2) finance, 3) service delivery, 4) opioid access, 5) capacity building, and 6) information, research, monitoring, and evaluation. Government endorsement in April 2018 ignited national engagement, driving policy, service delivery, workforce development, education, training, and research progress. Nonetheless, workforce shortages, limited opioid access, and inadequate funding persist as barriers. Jordan's collaborative development of the inaugural National Palliative and Home Care Strategic Framework, endorsed by the government and stakeholders, provides a comprehensive roadmap for PC advancement. While it promises improved services, effective solutions to workforce and opioid access issues are crucial for successful implementation. [ABSTRACT FROM AUTHOR]

Context: Trends in symptoms and functional ability are known toward the end of life, but less is understood about quality of life, particularly prospectively following service referral.Objectives: This study compares quality of life trajectories of people with and without cancer, referred to volunteer-provided palliative care services.Methods: A secondary analysis of the ELSA trial (n = 85 people with cancer and n = 72 without cancer) was performed. Quality of life data (WHOQOL-BREF) were collected at baseline (referral), four weeks, eight weeks, and 12 weeks. Sociodemographic data were collected at baseline. We specified a series of joint models to estimate differences on quality of life trajectories between groups adjusting for participants who die earlier in the study.Results: People with cancer had a significantly better quality of life at referral to the volunteer-provided palliative care services than those with nonmalignant disease despite similar demographic characteristics (Cohen d's = 0.37 to 0.45). More people with cancer died during the period of the study. We observed significant differences in quality of life physical and environmental domain trajectories between groups (b = -2.35, CI -4.49, -0.21, and b = -4.11, CI -6.45, -1.76). People with cancer experienced a greater decline in quality of life than those with nonmalignant disease.Conclusion: Referral triggers for those with and without cancer may be different. People with cancer can be expected to have a more rapid decline in quality of life from the point of service referral. This may indicate greater support needs, including from volunteer-provided palliative care services. [ABSTRACT FROM AUTHOR]

Abstract: Context: Sedation at the end of life, regardless of the nomenclature, is an increasingly debated practice at both clinical and bioethical levels. However, little is known about the characteristics and trends in scientific publications in this field of study. Objectives: This article presents a bibliometric analysis of the scientific publications on continuous sedation until death. Methods: Four electronic databases (MEDLINE, PubMed, Embase, and PsycINFO®) were searched for the indexed material published between 1945 and 2011. This search resulted in bibliographic data of 273 published outputs that were analyzed using bibliometric techniques. Results: Data revealed a trend of increased scientific publication from the early 1990s. Published outputs, diverse in type (comments/letters, articles, reviews, case reports, editorials), were widely distributed across 94 journals of varying scientific disciplines (medicine, nursing, palliative care, law, ethics). Most journals (72.3%) were classified under Medical and Health Sciences, with the Journal of Pain and Symptom Management identified as the major journal in the field covering 12.1% of the total publications. Empirical research articles, mostly of a quantitative design, originated from 17 countries. Although Japan and The Netherlands were found to be the leaders in research article productivity, it was the U.K. and the U.S. that ranked top in terms of the quantity of published outputs. Conclusion: This is the first bibliometric analysis on continuous sedation until death that can be used to inform future studies. Further research is needed to refine controversies on terminology and ethical acceptability of the practice, as well as conditions and modalities of its use. [Copyright &y& Elsevier]

Context: Reliable access to opioid medication is critical to delivering effective pain management, adequate treatment of opioid dependence, and quality palliative care. However, more than 80% of the world population is estimated to be inadequately treated for pain because of difficulties in accessing opioids. Although barriers to opioid access are primarily associated with restrictive laws, regulations, and licensing requirements, a key problem that significantly limits opioid access relates to policy constraints.Objectives: To identify and explore policy barriers to opioid access in 12 Eastern and Central European countries involved in the Access to Opioid Medication in Europe project, funded by the European Community's Seventh Framework (FP7/2007-2013, no. 222994) Programme.Methods: A systematic content analysis of texts retrieved from documents (e.g., protocols of national problem analyses, strategic planning worksheets, and executive summaries) compiled, reviewed, approved, and submitted by either the Access to Opioid Medication in Europe consortium or the national country teams (comprising experts in pain management, harm reduction, and palliative care) between September 2011 and April 2014 was performed.Results: Twenty-five policy barriers were identified (e.g., economic crisis, bureaucratic issues, lack of training initiatives, stigma, and discrimination), classified under four predetermined categories (financial/economic aspects and governmental support, formularies, education and training, and societal attitudes). Key barriers related to issues of funding allocation, affordability, knowledge, and fears associated with opioids.Conclusion: Reducing barriers and improving access to opioids require policy reform at the governmental level with a set of action plans being formulated and concurrently implemented and aimed at different levels of social, education, and economic policy change. [ABSTRACT FROM AUTHOR]

Abstract: Context: In 2011, the World Health Organization (WHO) published the policy guidelines Ensuring Balance in National Controlled Substances Policies—Guidance for Availability and Accessibility of Controlled Medicines, presenting a revised version of the previous guidelines from 2000. Objectives: To describe the consensus process that guided the revision of the guidelines. Methods: A four-stage revision process was undertaken with a panel of 29 international experts from palliative care, public health, and harm reduction: 1) a qualitative inventory of required changes by means of a structured checklist, 2) & 3) a two-round online consensus Delphi process about the draft revision of the guidelines, and 4) a WHO advisory meeting for the discussion of remaining controversies and final issues. Results: The qualitative inventory resulted in a draft revision of the guidelines meeting requirements on different levels, such as a broader focus and more accurate evidence. Operationalization of the guidelines was improved by specifying measures, procedures, and responsibilities. The Delphi procedure provided concrete indications for the rewording of both the guidelines and the associated text. During the advisory meeting, any persistent disagreements were systematically discussed to achieve consensus on the new version of the guidelines. Conclusion: The four-stage multimethod consensus process resulted in a substantial revision to the WHO guidelines. This takes into account the increase in knowledge about opioid medication since the first edition of the guidelines. Disagreement emerging from the process underlines the complexity of preparing guidance because of the delicate balance between need and control. [Copyright &y& Elsevier]

Abstract: Context: Family carers need to be supported in their central role of caring for patients at the end of life, but brief practical tools to assess their support needs have been missing. To address this gap, we developed a brief evidence-based Carer Support Needs Assessment Tool (CSNAT) suitable for everyday practice. Objectives: To assess face, content, and criterion validity of the CSNAT and measure sensitivity to change over time. Methods: Participants were 225 adult carers of patients from six U.K. Hospice Home Care services. Carers were surveyed at baseline and at four-week follow-up using self-completed questionnaires, including CSNAT, standard measures (distress, strain, positive appraisals, preparedness, and global health), help provided with activities of daily living, and patients' symptom levels. Qualitative feedback on CSNAT was sought through 10 pilot carer interviews and professional and carer advisory group input. Results: The CSNAT has good face, content, and criterion validity. CSNAT domains comprehensively covered carer support needs. CSNAT scores showed clear and consistent positive correlations with strain and distress and negative correlations with preparedness for caregiving and global health. There also were clear correlations with help with activities of daily living and some relationships with positive appraisals and symptom burden. The CSNAT's sensitivity to change in relevant domains was similar to other measures. Conclusion: The CSNAT is a valid tool for the direct measurement of carers' support needs. It combines comprehensiveness of content with feasibility of administration and has utility both as a research tool and a tool for everyday palliative care practice. [Copyright &y& Elsevier]

Abstract: This study explored the prevalence and burden of symptoms in a community-based sample of patients aged >60 with symptomatic heart failure. Five hundred forty-two patients were recruited from UK general practices. Participants completed the Kansas City Cardiomyopathy Questionnaire every 3 months for 2 years. Data are presented at baseline alongside findings from in-depth interviews with patients and focus groups with primary care professionals. Over half the participants experienced breathlessness and/or fatigue daily. Factors identified as predictive of symptom prevalence and burden were as follows: being female; being staged at New York Heart Association Class III or IV; having symptoms of depression; and having two or more comorbidities. Interviews identified other symptoms, including chest pain, nausea, sleep disruption, and confusion. Participants felt that symptoms restricted activities of daily living. Health professionals reported symptom control as being a concern of patients and identified their own educational needs in this area. Findings suggest that symptom prevalence and burden for this population is high. Primary care professionals should offer comprehensive assessment and treatment of symptoms. [Copyright &y& Elsevier]

Context: Near the end of life when patients experience refractory symptoms, palliative sedation may be considered as a last treatment. Clinical guidelines have been developed, but they are mainly based on expert opinion or retrospective chart reviews. Therefore, evidence for the clinical aspects of palliative sedation is needed.Objectives: To explore clinical aspects of palliative sedation in recent prospective studies.Methods: Systematic review was conducted following Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines and registered at PROSPERO. PubMed, CINAHL, Cochrane, MEDLINE, and EMBASE were searched (January 2014-December 2019), combining sedation, palliative care, and prospective. Article quality was assessed.Results: Ten prospective articles were included, involving predominantly patients with cancer. Most frequently reported refractory symptoms were delirium (41%-83%), pain (25%-65%), and dyspnea (16%-59%). In some articles, psychological and existential distress were mentioned (16%-59%). Only a few articles specified the tools used to assess symptoms. Level of sedation assessment tools were the Richmond Agitation Sedation Scale, Ramsay Sedation Scale, Glasgow Coma Scale, and Bispectral Index monitoring. The palliative sedation practice shows an underlying need for proportionality in relation to symptom intensity. Midazolam was the main sedative used. Other reported medications were phenobarbital, promethazine, and anesthetic medication-propofol. The only study that reported level of patient's discomfort as a palliative sedation outcome showed a decrease in patient discomfort.Conclusion: Assessment of refractory symptoms should include physical evaluation with standardized tools applied and interviews for psychological and existential evaluation by expert clinicians working in teams. Future research needs to evaluate the effectiveness of palliative sedation for refractory symptom relief. [ABSTRACT FROM AUTHOR]

Context: Palliative medicine (PM) has gained subspecialty recognition in many countries during the past two decades. Jordan is one of the first Arab countries to gain accreditation for the specialty.Objectives: To outline the process undertaken by leaders in palliative care in Jordan to have PM recognized as a subspecialty and the development of a two-year fellowship training program. To contextualize the Jordanian experience with the experience from other countries and assess the need for PM specialty programs in Jordan.Methods: A thorough review of all documentations, letters, correspondence, and proposals exchanged between the palliative care department at King Hussein Cancer Center and the Jordanian Medical Council from 2011 to 2017. An assessment of the number of certified physicians and fellowship posts required to meet the current palliative care needs in Jordan, using population-based need for palliative care.Results: The process of gaining subspecialty status for PM in Jordan was complex, lengthy, and dependent on the collaboration of many officials and health sector organizations working together on a national strategy to achieve it. Ultimately, PM was recognized as a subspecialty in 2017, a two-year fellowship program was accredited by the Jordanian Medical Council in 2018, with a recognized subspecialty board examination, which can be accessed by many medical and surgical specialties. It is estimated that 185-235 full-time equivalent palliative care specialist physicians are needed to meet the demand of patients in Jordan.Conclusion: Key factors enabling accreditation to happen in Jordan were strong leadership, persistence, collaboration with major stakeholders, and seeking out opportunities to promote the specialty. Our experience and lessons learnt are transferable to other countries and may prove beneficial to others aiming to gain subspecialty recognition for PM. [ABSTRACT FROM AUTHOR]

The global COVID-19 pandemic is likely to have a major impact on the experience of death, dying, and bereavement. This study aimed to review and synthesize learning from previous literature focused on the impact on grief and bereavement during other infectious disease outbreaks. We conducted a rapid scoping review according to the principles of the Joanna Briggs Institute and analyzed qualitative data using thematic synthesis. From the 218 identified articles, 6 were included in the analysis. They were four qualitative studies, one observational study, and a systematic review. Studies were conducted in West Africa, Haiti, and Singapore. No research studies have focused on outcomes and support for bereaved people during a pandemic. Studies have tended to focus on survivors who are those who had the illness and recovered, recognizing that some of these individuals will also be bereaved people. Previous pandemics appear to cause multiple losses both directly related to death itself and also in terms of disruption to social norms, rituals, and mourning practices. This affects the ability for an individual to connect with the deceased both before and after the death, potentially increasing the risk of complicated grief. In view of the limited research, specific learning from the current COVID-19 crisis and the impact on the bereaved would be pertinent. Current focus should include innovative ways to promote connection and adapt rituals while maintaining respect. Strong leadership and coordination between different bereavement organisations is essential to providing successful postbereavement support. [ABSTRACT FROM AUTHOR]

Context: To provide high-quality palliative care to nursing home residents, staff need to understand the basic principles of palliative care.Objectives: To evaluate the extent of agreement with the basic principles of palliative care of nurses and care assistants working in nursing homes in five European countries and to identify correlates.Methods: This is a cross-sectional study in 214 homes in Belgium, England, Italy, the Netherlands, and Poland. Agreement with basic principles of palliative care was measured with the Rotterdam MOVE2PC. We calculated percentages and odds ratios of agreement and an overall score between 0 (no agreement) and 5 (total agreement).Results: Most staff in all countries agreed that palliative care involves more than pain treatment (58% Poland to 82% Belgium) and includes spiritual care (62% Italy to 76% Belgium) and care for family or relatives (56% Italy to 92% Belgium). Between 51% (the Netherlands) and 64% (Belgium) correctly disagreed that palliative care should start in the last week of life and 24% (Belgium) to 53% (Poland) agreed that palliative care and intensive life-prolonging treatment can be combined. The overall agreement score ranged between 1.82 (Italy) and 3.36 (England). Older staff (0.26; 95% confidence interval [CI]: 0.09-0.43, P = 0.003), nurses (0.59; 95% CI: 0.43-0.75, P < 0.001), and staff who had undertaken palliative care training scored higher (0.21; 95% CI: 0.08-0.34, P = 0.002).Conclusions: The level of agreement of nursing home staff with basic principles of palliative care was only moderate and differed between countries. Efforts to improve the understanding of basic palliative care are needed. [ABSTRACT FROM AUTHOR]

Context: Thousands of family members worldwide are annually involved in assisted dying. Family participation in assisted dying has rarely been investigated and families' needs typically are not considered in assisted dying legislation and clinical guidelines.Objectives: To explore family caregivers' reflections on experiences of assisted suicide in Switzerland.Methods: A cross-sectional qualitative interview study conducted in the Italian- and French-speaking regions of Switzerland. Interpretation and analysis were performed using qualitative content analysis.Results: Twenty-eight close relatives and family carers of 18 patients who died by assisted suicide in Switzerland were interviewed. Family members perceived their involvement in assisted suicide as characterized by five phases; 1) contemplation, 2) gaining acceptance, 3) gaining permission, 4) organization, and 5) aftermath. Families can participate in these phases at diverse levels and with varying degrees of involvement. Important triggers for families and patients for transition between phases include patients' experiences of their life-threatening illnesses and related treatments, their increasing awareness of approaching death, and family member recognition of their loved one's unbearable suffering. Participating in assisted suicide created further demanding tasks for families in addition to their role of caregivers.Conclusion: Families appeared to be involved in the preparation of assisted suicide along with patients, irrespective of their personal values regarding assisted dying. Support for family members is essential if they are involved in tasks preparatory to assisted suicide. Clinical guidelines and policies concerning assisted dying should acknowledge and address family needs. [ABSTRACT FROM AUTHOR]

Context Overregulation of controlled medicines is one of the factors contributing to limited access to opioid medicines. Objectives The purpose of this study was to identify legal barriers to access to opioid medicines in 12 Eastern European countries participating in the Access to Opioid Medication in Europa project, using a quick scan method. Methods A quick scan method to identify legal barriers was developed focusing on eight different categories of barriers. Key experts in 12 European countries were requested to send relevant legislation. Legislation was quick scanned using World Health Organization guidelines. Overly restrictive provisions and provisions that contain stigmatizing language and incorrect definitions were identified. The selected provisions were scored into two categories: 1) barrier and 2) uncertain, and reviewed by two authors. A barrier was recorded if both authors agreed the selected provision to be a barrier (Category 1). Results National legislation was obtained from 11 of 12 countries. All 11 countries showed legal barriers in the areas of prescribing (most frequently observed barrier). Ten countries showed barriers in the areas of dispensing and showed stigmatizing language and incorrect use of definitions in their legislation. Most barriers were identified in the legislation of Bulgaria, Greece, Lithuania, Serbia, and Slovenia. The Cypriot legislation showed the fewest total number of barriers. Conclusion The selected countries have in common as main barriers prescribing and dispensing restrictions, the use of stigmatizing language, and incorrect use of definitions. The practical impact of these barriers identified using a quick scan method needs to be validated by other means. [ABSTRACT FROM AUTHOR]

Abstract: Context: Numerous attempts have been made to describe and define sedation in end-of-life care over time. However, confusion and inconsistency in the use of terms and definitions persevere in the literature, making interpretation, comparison, and extrapolation of many studies and case analyses problematic. Objectives: This evidence review aims to address and account for the conceptual debate over the terminology and definitions ascribed to sedation at the end of life over time. Methods: Six electronic databases (MEDLINE, PubMed, Embase, AMED, CINAHL, and PsycINFO) and two high-impact journals (New England Journal of Medicine and the British Medical Journal) were searched for indexed materials published between 1945 and 2011. This search resulted in bibliographic data of 328 published outputs. Terms and definitions were manually scanned, coded, and linguistically analyzed by means of term description criteria and discourse analysis. Results: The review shows that terminology has evolved from simple to complex terms with definitions varying in length, comprising different aspects of sedation such as indications for use, pharmacology, patient symptomatology, target population, time of initiation, and ethical considerations, in combinations of a minimum of two or more of these aspects. Conclusion: There is a pressing need to resolve the conceptual confusion that currently exists in the literature to bring clarity to the dialogue and build a base of commonality on which to design research and enhance the practice of sedation in end-of-life care. [Copyright &y& Elsevier]

Abstract: Context: The End of Life Care Strategy for England highlights effective communication between patients and professionals as key to facilitating patient involvement in advance care planning. The strategy emphasizes that, currently, communication in patients with noncancer life-limiting conditions is likely to be inadequate, and research has identified that patients with chronic obstructive pulmonary disease and heart failure have a poor understanding of their condition. Objectives: To identify existing interventions of patient-professional communication developed for life-limiting conditions and explore the applicability of interventions developed within a cancer framework to other diagnostic groups. Methods: A comprehensive literature review of studies describing communication interventions for patients receiving end-of-life care was undertaken. Ten electronic databases were searched. Inclusion criteria were all English language studies relating to patient-professional communication interventions for patients with life-limiting conditions receiving end-of-life care. Results: Of the 755 articles initially identified, 16 met the inclusion criteria. Three core themes emerged from the synthesis of the literature: using education to enhance professional communication skills, using communication to improve patient understanding, and using communication skills to facilitate advance care planning. Conclusion: Although limited, evidence relating to the development and evaluation of communication interventions for patients with life-limiting illnesses would suggest that a successful intervention should include combined components of training, patient discussion, and education. In a context of limited resources and an increasing number of patients living and dying with chronic life-limiting conditions, the need for appropriate and effective communication strategies should be seen as a priority for both research and policy. [Copyright &y& Elsevier]

Context: Providing care that is shaped around the needs of patients, carers, and families is a challenge in the last months of life, as moves between home and institutions may be frequent. Despite this, there have been few studies of end-of-life transitions in the U.K.Objectives: To explore older adults' experiences as they move between places of care at the end of life.Methods: In-depth qualitative interviews and thematic analysis of the data were performed. Thirty adults aged between 69 and 93 years took part. All were judged by their physicians to be in the last year of life, diagnosed with heart failure (13), lung cancer (14), and stroke (3). Sixteen participants were from the lowest socioeconomic groups.Results: Four themes were identified from the data relating to 1) the prioritization of institutional processes, 2) support across settings, 3) being heard, and 4) dignity. As they moved between different settings, much of the care received by older adults was characterized by inflexibility and a failure of professional carers to listen. Liaison between and within services was not always effective, and community support after a hospital admission was perceived to be, on occasions, absent, inappropriate, or excessive.Conclusion: Qualitative study of transitions provides valuable insights into end-of-life care, even in countries where there are few financial barriers to services. This study has highlighted a need for continued attention to basic aspects of care and communication between professionals and with patients. [ABSTRACT FROM AUTHOR]

Abstract: Narrative methods have played a minor role in research with dying patients to date, and deserve to be more widely understood. This article illustrates the utility and value of these methods through the narrative analysis of semi-structured interview data gathered in a series of interviews with two terminally ill cancer patients and their spouses. The methods and findings associated with these two case studies are outlined and discussed. The authors'' contention is that an analytical focus on the naturalistic storytelling of patients and informal carers can throw new light on individuals'' perceived illness states and symptoms, care-related needs, behaviors, and desires. In addition, the juxtaposition of two cases that share a number of markers of risk and need at the end of life illustrates how the narrative analysis of patients'' experiential accounts can assist in uncovering important distinctions between cases that are of relevance to care management. [Copyright &y& Elsevier]

This study explored the prevalence and burden of symptoms in a community-based sample of patients aged >60 with symptomatic heart failure. Five hundred forty-two patients were recruited from UK general practices. Participants completed the Kansas City Cardiomyopathy Questionnaire every 3 months for 2 years. Data are presented at baseline alongside findings from in-depth interviews with patients and focus groups with primary care professionals. Over half the participants experienced breathlessness and/or fatigue daily. Factors identified as predictive of symptom prevalence and burden were as follows: being female; being staged at New York Heart Association Class III or IV; having symptoms of depression; and having two or more comorbidities. Interviews identified other symptoms, including chest pain, nausea, sleep disruption, and confusion. Participants felt that symptoms restricted activities of daily living. Health professionals reported symptom control as being a concern of patients and identified their own educational needs in this area. Findings suggest that symptom prevalence and burden for this population is high. Primary care professionals should offer comprehensive assessment and treatment of symptoms. [ABSTRACT FROM AUTHOR]

Context: Certain treatments are potentially inappropriate when administered to nursing homes residents at the end of life and should be carefully considered. An international comparison of potentially inappropriate treatments allows insight into common issues and country-specific challenges of end-of-life care in nursing homes and helps direct health-care policy in this area.Objectives: To estimate the prevalence of potentially inappropriate treatments in the last week of life in nursing home residents and analyze the differences in prevalence between countries.Methods: A cross-sectional study of deceased residents in nursing homes (2015) in six European countries: Belgium (Flanders), England, Finland, Italy, The Netherlands, and Poland. Potentially inappropriate treatments included enteral administration of nutrition, parental administration of nutrition, artificial fluids, resuscitation, artificial ventilation, blood transfusion, chemotherapy/radiotherapy, dialysis, surgery, antibiotics, statins, antidiabetics, new oral anticoagulants. Nurses were questioned about whether these treatments were administered in the last week of life.Results: We included 1384 deceased residents from 322 nursing homes. In most countries, potentially inappropriate treatments were rarely used, with a maximum of 18.3% of residents receiving at least one treatment in Poland. Exceptions were antibiotics in all countries (between 11.3% in Belgium and 45% in Poland), artificial nutrition and hydration in Poland (54.3%) and Italy (41%) and antidiabetics in Poland (19.7%).Conclusion: Although the prevalence of potentially inappropriate treatments in the last week of life was generally low, antibiotics were frequently prescribed in all countries. In Poland and Italy, the prevalence of artificial administration of food/fluids in the last week of life was high, possibly reflecting country differences in legislation, care organization and culture, and the palliative care competences of staff. [ABSTRACT FROM AUTHOR]

Abstract: Context: Sedation is administered to some palliative care patients at the end of their life. Nurses play an important role in this practice. Objectives: To systematically review the evidence on nurses' attitudes and practice of end-of-life sedation. Methods: We searched eight electronic databases, four key palliative care journals, and reference lists for empirical studies published in English, between 1990 and 2012, on nurses and their attitudes toward and practice of sedation until a patient's death. A total of 10 studies met the inclusion criteria. Results: Data were generated from 7515 nurses in four main settings (specialized palliative care unit, home, nursing home, and acute hospital) from seven countries (Belgium, Canada, Japan, The Netherlands, Norway, U.K., and U.S.). On average, the quality of the evidence was good; hence, we analyzed all selected studies. Based on the findings from a previous review, we categorized the emerging themes into: 1) important factors leading to the patient receiving palliative sedation (PS), 2) nurses' attitudes toward PS, and 3) nurses' experience of PS at the end of a patient's life. In general, nurses had a positive but cautious attitude toward the practice of PS. Most saw it as a last resort treatment for relieving suffering and refractory symptoms, and its practice was often influenced by their level of education, expertise, and the roles they played per setting. Conclusion: Most nurses administered sedation until death only within the given circumstances because of the anticipatory benefits in controlling refractory symptoms and suffering. Some of them experienced burdens during PS delivery; these could be supported by operational guidelines and task-related training. [Copyright &y& Elsevier]